These Things We Must Never Forget

Peace!

2011-08-11T12:39:00.000-05:00

It was a long time before I was able to make the decision to put Rick in a nursing home. My girls wanted me to several years ago, but I just wasn’t ready for it. It was the 1st weekend in June and Tamara and I, along with Rick and Mara, were going to FL for my nephew’s wedding. We were talking and Tamara asked me if I wasn’t ready to place him. All of a sudden I realized it was time. I was then ready for it to happen immediately. But it took 2 months. I have had some guilt feelings, wondering what others would think about me giving up on my care of Rick. But everyone has been so supportive.

I just had my care planning meeting with all the department heads of the nursing home this morning. They asked me about his likes and dislikes. They have put him on a mechanical soft diet, which I totally agree with. They are giving him physical, occupational and speech therapy. They are really working with him to help him improve. I was so impressed. He wasn’t getting that at my home. So now I know he is where he is supposed to be. I came away this morning with a light heart. I called Tamara and she said, “You sound excited Mom. I’m glad you feel that way.” She could hear it in my voice.

So I have now overcome any bad feelings I had about it in the first place. I am very comfortable leaving him there while I go on vacation. He is in very capable hands. As well as in God’s keeping.

I have a schedule of people to come visit Rick daily while I am gone. He won’t be left alone. Thank you everyone for your help. You are a blessing to both Rick and me.

Thank you, Jesus, for working all this out for your honor and glory. We are still trusting You for complete healing. He is going to walk out of the prison he is in, just like Peter, in the Bible, walked out of the prison he was in.

A Prayer For Caregivers

2011-08-10T16:15:00.001-05:00

A PRAYER FOR CAREGIVERS
By Lois Crissinger

As you care for my loved one, I pray for you. I pray that you will have a heart of compassion and that you will be considerate of my loved one as a person with feelings, emotions and sensitivities.

I pray that your heart will be filled with kindness and that you might be reminded that this person’s situation could someday be yours or that of a loved one of yours.

May God grant you strength to do this task that can be difficult (and often thankless). I, for one, thank you for doing daily the task that I no longer had the strength to do alone.

Please remember that my loved one has worth and value to me, to many family members, friends and acquaintances, but most of all, to the God who created him.

May God watch over you and give you peace and guidance this day, in all you do.

AMEN

Second Week in Nursing Home

2011-08-10T16:01:00.005-05:00

Rick is doing better in the nursing home now. He is eating good and apparently drinking good again. The swelling in his feet has gone down a lot now. Sunday, they couldn’t get his good loafers on, his feet were so swollen. He had to wear his sandals.

I think we have gotten his room to look pretty homey. I have washed clothes every day since he has been in there. It seems that they can’t keep him from wetting his pants. I have a meeting tomorrow with the planning group and hope that I can get some of that solved.

I’m leaving Saturday to go to Alaska with Rick’s sister and cousin. I’m really excited about that. I am trying to get Rick all taken care of before I leave. I have put together a schedule of people to go see him every day while I’m gone. Cheryl and another lady are going to take him to church on Sunday’s. I’m going to be gone 4 Sundays in a row. 3 with the Alaska trip and then Labor Day I’m going up to see Tamara in Pittsburgh. So that will be 4 Sundays.

The nurses and CNA’s at the nursing home are all very nice and trying hard to keep him taken care of. One of the nurses told me today that they love Rick. And she said I’m amazing. I guess they don’t have too many residents with family who looks out for their welfare. Anyway, that made me feel better. I’ve made a couple of sheet cakes to take to them tomorrow to show my appreciation for their efforts.

It just takes time to get adjusted to each other.

I thank God for being with Rick during this transition.

New Home For Rick

2011-08-04T08:48:00.003-05:00

Rick moved into Heritage Healthcare of High Point Monday. This has been a stressful week for both of us. I am thankful to have had the help of Cheryl and Tamara with this transition. We have finally gotten his room to feel homey, but he is still getting used to a new place and new people. And they are getting used to him. It has been hard to go there to see him seem so lost. He hasn't seemed to recognize us. It could be due to the time of the day that we have been there. Evenings he is more tired and not as alert and that has been when we've been there.

This morning I was there shortly after 8 am. He was dressed and sitting in the dining room waiting for his breakfast. He was leaning over his knees which is pretty normal. I walked in and called his name and he raised up a little bit to look around. I took him by his hands and helped him stand up. Then he looked at me and smiled. I hugged and kissed him and he hugged me. He actually looked like he knew who I was and was glad to see me. I cried!

I really needed this. I was feeling so badly that he wasn't involved with the people and seemed to be so disoriented. Hopefully things are looking up.

This morning I spoke to the nurse and CNA that are caring for Rick in the mornings. They said they are having a hard time getting him to eat. He keeps his head down near the plate and resists when they try to push it back up. He isn't drinking much either. The nurse said that she gave him an ensure yesterday and he drank it all. That was good.

They say that he is incontinent. I guess that at night they don't get him up in time to get to the bathroom and he dribbles on the way there. The CNA said that she took him to the bathroom twice yesterday morning and he didn't do anything and then about 2pm she took him and he did a very little bit. I guess if he isn't eating and drinking he doesn't have anything to put out. Hopefully this will get better. I have asked for a monitor to go on his bed that will let the night shift know when he is trying to get up.

This has been a very hard transition. I pray that God will ease his confusion and cause the staff to love him.

Seizure-ish?

2011-04-12T14:05:00.001-05:00

Rick did some really weird different things last night. I gave him the Depakote at 9:15 pm and we got in bed about 10:15 pm. I didn’t give him any melatonin at bedtime, just to see what the Depakote would do. He was up again at 1 pm at which time I gave him the melatonin, 2 tabs. Then at 2 am he hollered out – I’m not sure if it was a start or not. He didn’t wake up from his sleep. This happened again about 3:30 am. Then he woke up at 6:30. I took him to the bathroom and he was very halting in his walking, very jerky muscles. No starts as such but still seemed seizurish. I got him dressed and then we had breakfast at about 7 am. I got his Keppra and Depakote in right away. He had occasional starts from then until he got on the bus to go to the center.

This morning is his first morning dose of Depakote.

Hopeful answers

2011-04-11T14:00:00.000-05:00

I decided to give Rick another Topamax 25 mg this morning so I could be comfortable with putting him on the bus to go to the Center.
Now I have received this reply from Valerie, Dr Boggs’ nurse:
I spoke w/Dr. Boggs and she feels that we may be on to something good with the Depakote and recommends increasing it to 500mg twice daily. She recommended that we could call in something to use as needed for those times when he has a cluster of "starts" that may work better than the Topamax. Topamax is not really designed to be used on as needed basis. She recommended that I call in Tranxene 3.75mg tablets that you can give him one tablet as needed on a day like you had Sat and Sun to settle down the activity. Hopefully it will settle down with an increase in the Depakote.
Now we will see how this works. I will start giving him the Depakote bid tomorrow morning.

Weekend issues - no doctor to talk to!

2011-04-10T13:58:00.000-05:00

It seems that if anything is going to happen it happens on the weekend when I don’t have anyone to call.

Saturday we left the house about 11:30 or so and made a couple of stops. Then we went to Tamara’s house because we were going to go to lunch with them. While we were sitting there waiting to go, Rick started having some of his little ‘starts’. They just continued on and on in fairly rapid succession. I was afraid to have him even get up from the couch; much less take him out to a restaurant. I didn’t know what to do, but finally remembered that I still had a Topamax 25 mg in my purse, so I gave that to him. In about an hour he was slowing down and we went out to eat. He was better the rest of the day. That was about 12 noon to 1:30 pm.

Today, Sunday, we got up about 6:00 am. I gave him a shower and got him dressed for church. He sat in a chair while I showered and dressed. We ate breakfast at 8 am, which is when I usually give him his morning meds. We were ready to leave for church at 8:45 am. I got him in the car and he was beginning to have the ‘starts’ again. I decided I didn’t want to wait any longer, so I gave him another 25 mg of Topamax. We got to church and I was afraid to have him walk down the flight of stairs to our Sunday School class room, so drove around to the back which is a ground level entrance. He slowly calmed down during SS. He napped during that time and when it was over at 10:45 am, he was fine. He has been fine the rest of the day.

I need some help knowing what to do. I just used the Topamax because it is what I have on hand and I felt he needed something. I am worried about sending him to the center tomorrow.

Medication Change

2011-04-07T13:57:00.000-05:00

Rick had his first dose of Depakote 500mg last night. His last dose of Topamax was yesterday morning. We didn’t get home last night until 10:15 so he didn’t get his Depakote until about 10:30 along with 2 melatonin. HE SLEPT ALL NIGHT!!! I had to wake him up this morning at 6:40 am. What a wonderful night’s sleep.

So I’m not sure if it was the Depakote or the fact that he walked around the church sanctuary for 1.5 hrs before we went home that helped him to sleep so good. But I don’t remember the last time he slept all night. I have felt it was great if he just woke up once in the night.

He did have one small start this morning. I hope that will stop soon. Is depakote cumulative?

From Valerie,RN, with Dr. Boggs, neurologist,
The Depakote will take about 5-7days to fully stabilize in his system but he may be a little groggy the first few days as he becomes accustomed to it--so you may see that he does sleep more soundly as a result.

From Lynn, RN, at TWADC at 1:42 pm
Rick has had a very good day thus far. (I hope I am not sending this prematurely) He has been active and smiling at everyone. He seemed rested and showed no stress in his face this morning. Many people made comments about it. Hopefully, the Depakote is the key. If I see any changes I will let you know. 
Thanks,
Lynn

Second seizure in 4 days

2011-04-05T13:45:00.000-05:00

I got a call from Lynn Byrd at the center today about 1:45 saying Rick had a seizure about 1:30. He fell hard and hit his head on something. He has an abraision and and knot on the right side of his head just above his ear. She said he seized for about 4 minutes, this including the jerking, heavy breathing and then some lighter breathing but his eyes weren’t functioning properly. They were able to get him in a recliner and he was sleeping.
At first I thought I would leave him there to sleep it off, but decided that it would be better for me to take my lunch break to go get him. Rather that have to leave later on because they weren’t able to manage him.
He walked out to the car without difficulty and got in well. He slept all the way home. Got out of the car easily. Was rather sluggish about walking up the stairs but did it. I took him to the bathroom and then put him to bed. He is sleeping there now.
I called the neurology department at NCBH twice since this seizure. Valerie has been in a meeting all afternoon. Finally Sandy, another nurse there, called me saying she spoke with Dr Boggs explaining the situation. Dr Boggs says to stop the Topamax altogether and start Depakote 500 mg hs. I asked about lamictal, which is what Dr Bell had said was a good drug. She said she would relay this question to Valerie so she could talk with Dr Boggs about it. Sandy will call Depakote to Gateway pharmacy. I will pick it up tonight.

Seizure, first since February 2010

2011-04-02T13:56:00.000-05:00

Rick had a grand mal seizure this morning, Saturday, April 02, 2011. It was at 7:47 am before he had taken his morning medication.
He seized for about 30-60 seconds and then went into a deep snoring sleep for about 15 minutes. Then he would try to get up and then sleep for awhile, repeating. I was finally able to get him in the bed at 8:14. Then he slept pretty good until 9:24 when he got restless and I took him to the bathroom.

I gave him his Keppra and Topamax at about 9:40 am. He chewed them but didn’t swallow them. I was finally able to get him to swallow a little bit. I’m not sure how much he actually got down. Most of it I think. I guess I won’t give him any more until evening.

He’s awake again at 10:18 acting restless.

I really want to work on his medications. I don’t want to keep him on the Topamax. But it looks like he needs something to control his seizures.

Discontinuing Topamax

2011-03-24T13:43:00.000-05:00

Rick completed his taper of the Topamax yesterday. This morning being the first day that he didn’t take any Topamax. He is still taking Keppra 1500 mg bid.

He hasn’t had much of any problems with the taper until this past week.
030611 had a start in night while on Topamax 75mg bid and then was slightly seizurish the next morning
031311 had a start in the morning while on 50 mg
031811 Started Topamax 25 mg bid
032011 was very seizurish, shaking all over like nervous or cold. When in shower he made a sound like the start of a full blown seizure. Needless to say, I took him out of the shower immediately. We went on to church and he was alright.
032311 had a start while dressing before meds
032411 another start in morning before meds
032511
This morning though, before he had his morning medication, he was very jittery, twitching and having those starts. He collects saliva in him mouth a lot now and 2-3 times the ‘start’ caused him to open his mouth enough for the saliva to come out. I had a nurse friend spend a few days with us this week and she was here during his episode this morning and she called it petite mal seizures. He seemed to be better about 30 minutes after he got the Keppra this morning. I sent him on the Trans Aid bus to the Senior Center and haven’t heard anything from them about problems.

It was this kind of thing that caused Dr Pearce to put him on Topamax in the first place. I don’t really want to put him on other medicine, but I don’t want this kind of scary activity going on either.

Response from Valerie Woodard, RN

"1500mg twice daily of Keppra is usually the top-target dose, but we do have folks that require a bit more. We have had a few folks on 4000mg/day up to a couple of folks that I know were on 6000mg/day!!! yikes--that is a lot of medication : )

in any event, I spoke w/Dr.O'Donovan and he recommends increasing the keppra by 1/2 tablet. You can add it to whichever dosage you feel would be most adventageous for him--a.m. or p.m. we should try this for the next few days to see if that will help settle things down now that Topamax is washing out of his system. I will discuss again with Dr.Boggs next week to see if she has further recommendations.

now I get an email from Dr.Boggs recommending resume Topamax at 25mg twice daily for now."

So we went back to the Topamax 25 mg bid.

Kidney stone

2011-02-14T16:29:00.000-05:00

Tonight, 020611, we were at church for the Super Bowl fellowship. Rick was very restless. He didn’t eat well at all. His leg started jumping (which is usually a sign of nervousness about something) I took him to the bathroom, my first thought. But that didn’t seem to make a difference. He continued to be agitated. After he ate all I could get him to, I took him into the room where the men were watching the game. I thought he would enjoy being with them. After awhile, Pastor asked me if Rick was ok. He said he just wasn’t acting right. So I took him to the bathroom again. He always did something, but it didn’t take away his agitation.
I sent him to the center the next day. They didn’t say anything about him being different. But he didn’t eat well that night either. Alicia said he groaned like he was having some pain. I called a nurse friend of mine, Della, and she and I decided that we would wait thru the night to see how he does. He slept fitfully and so did I. I wondered if I should get up and take him to the ER. But I didn’t.
I was able to get an appt with our family doctor at 10 am that morning (Tuesday, Feb 8) so I felt that was the right thing to do instead of going to the ER. She did blood work and said she would let me know the results and then I would take him to get a chest x-ray. It was about 3:45 pm when she called me saying, “He’s in kidney failure. You need to take him to the ER.” How devastating was that. When I hear kidney failure I think of dialysis and death. Needless to say we all were rather upset and crying.
It was probably about 4:30 when we got to the ER. They took us right back for the check in and triage. But then we waited an hour or so before we went to a room to be checked by a doctor. Then they did a chest x-ray and a CT scan. I thought it was going to be a scan of his abdomen but instead it was of his head. I’m not sure why they did that. They said they wanted to rule out a stroke. But he didn’t have signs of stroke and did have signs of abdominal distress.
Finally Cheryl and I were able to convince them Rick needed an abdominal scan. They were afraid to put dye in his veins for fear it would do more damage to his already compromised kidneys. But they finally did one using an enema type dye. Then they found out he had a ‘small’ kidney stone. 30 minutes later they came telling me they were going to take him to surgery. ?A small kidney stone? I would have thought it could pass without surgery.
They took him to surgery at 3 am and brought him back at 6 am. Needless to say, I was exhausted. They told me that the size of the kidney stone is relative to who is talking. A urologist, who has seen stones large enough to fill the bladder, would say this stone is small. But it was big enough to block the ureter and urine was blocking up in his kidney causing it to swell. That is why they did the surgery right away.
So Rick was in the hospital from Tuesday to Sunday.

No real answers to my questions

2011-01-27T13:09:00.001-05:00

Since the Monday before Christmas, Rick hasn’t been feeding himself well at all. Sometimes he feeds himself a few bites but then I have to remind him that he is eating and give him a bite. Then he will take a few bites and forget again. He is very sleepy and seems to want to fall asleep while eating. This is very hard for me because I like to be doing other things while he is eating, like cleaning up the kitchen, etc. If I have to sit with him and feed him most every bite, I don’t get much done.
He went to the VA clinic for his annual checkup, 123010, so that they will pay for his time at the adult day center. I told that doctor about Rick’s change in the past week and a half. He did blood work, including a Keppra level. An overload of Keppra can cause drowsiness. He called me back the next week saying his Keppra level was 90 and the range is 5-63. He told me to omit his evening dose that day.
I was scared to omit it completely because I know that stopping seizure medicine can cause seizures. So I omitted 2 of the 3 tablets he normally takes in the evenings. In the morning when he woke up, he was very seizure-ish. I was afraid he was going to have a seizure. But I got his morning medicine in him before that happened.
I contacted Dr Boggs’ nurse, Valerie, who talked to Dr. Boggs. She says she doesn’t go by the levels but by the symptoms of the individual patient. She suggested I cut back on the Keppra by a half tablet once a day. I have been doing that since then.
For the first week, Rick would have the little starts that I have spoken of before. I am sure they are seizure activity, just not a grand mal seizure. But I haven’t noticed that much in the last week or so. But Rick continues to sleep a lot and still isn’t feeding himself well. Some days are better than others.
Last night, being Wednesday, and having to go to church, I gave Rick his chili for supper as soon as I finished work. I needed to be at church early, because I was presenting my pictures of Africa to the Stars (the girls group). I needed to set up the projector and my computer before church. I started him eating by giving him a bite and then putting the spoon in his hand so he can feed himself. Then I went to do something else. When I came back he was asleep with his head just about in the chili bowl. I woke him up and gave him a couple more bites, put the spoon in his hand, and went to do something else. This continued to happen. I would have to wake him up each time I wanted to put a bite in his mouth.
It was too early to give him his medicine, so I decided to take some applesauce with me to church and I would give it to him just before church started. This worked fine. He took his medicine well, I thought. During my presentation, Rick started moving his chair all around. I put my hand on his to try to calm him while I was talking. Then I noticed something wet drip on my hand. I thought his nose was running. I wiped it but it wasn’t very wet. Then I noticed he was drooling a very chalky looking substance. I realized he must not have swallowed all of his pills and one was dissolving in his mouth and drooling out. That means he didn’t get all of his medicine…but which pill did he not get? I didn’t know what to do.
When we got home about 9:30 pm or so, I gave him the rest of his chili. As he was eating it, with me feeding him mostly, I debated what I should do about his missed dose. I finally decided to give him at 25 mg tab of his Topomax. I figured this could help him but not overload him.
We got to bed about 10:30 pm, rather late. I was very tired from pulling on him all evening. He has become very resistant to everything again. He’s not being mean…he just catches everything. So when pulling off his coat, he holds his arm tight to his side so it won’t slide off. He has been bending over at his waist much of the time, not standing up straight at all. He walks that way and stands that way. He did that in church while we were singing. I tried to get him to step back and forth to the music with me like we usually do but he was leaning down so much it was tiring my arm out to hold him. So with all that, I was tired and looking forward to sleeping.
Rick woke up at 12:15 am and I took him to the bathroom. I put him back to bed and at 12:44 he was awake again. Very restless, sitting up in the bed, grabbing the covers. I tried to hold his hands and calm him down. I didn’t think he needed to go to the bathroom since he had just gone. Finally, after struggling with him until 1:09, I took him to the bathroom again. He went. He was awake again at 2:55 am and I took him to the bathroom. I usually lay back down waiting for him to finish. This time I went to sleep and didn’t hear him again until 3:55 when I put him back in the bed. You would think he would sleep the rest of the night. But he didn’t. He was up again at 5:30. Most days I get up at 5:30, but I was too tired to get up then. I decided to set my alarm for 6:30 instead.
When I woke up then, I was worried that he still might have a seizure. So I decided that I would crush his pills and put them in maple syrup and give them to him before he got out of bed. I sat him up on the side of the bed and tried to give him his medicine. He wouldn’t open his mouth. Finally I got some of the syrup and crushed medicine in his mouth, but then he wouldn’t swallow it. I got some water to give him, thinking that would help him swallow, but it didn’t. I got a cracker, thinking that something to chew would help him, but it didn’t. So I took him out to the kitchen to give him his cereal, hopefully getting him to take his medicine. I was going to let him spit out what was in his mouth and start over. Just as I got something for him to spit in I saw him swallow. I was able to get the rest of his medicine in, praise the Lord!
As I looked at the clock I realized I only had 30 minutes to get him ready for his ride to the day center. So I decided to let him eat at the center and I wouldn’t feed him here. We went to the bedroom to get dressed for the day. I put him back on the toilet since he hadn’t gone since 5:30 am (it is now 7:20 am) and I realized it was just going to be too much of a struggle to get him ready for the bus. Also, I just wasn’t sure if he had the right medicine in him and he wouldn’t have a seizure. It wouldn’t be good if he had a seizure on the bus…or at the center, for that matter. So I called and canceled his ride. Today is my late day and I can take him in later when I am ready. And I can be sure he is past seizuring. That was a relief.
We went back out to the kitchen and had breakfast. He fed himself part of his cereal. We got dressed. While I was getting dressed, I put him in the rocking chair in our bedroom. But he didn’t stay there long. He got up and started walking around. After awhile, I noticed he was standing next to the rocking chair bent at the waist, with his hands down at his ankles. I think he was tired out and was sleeping there. I put him in the rocker again until I finished getting dressed. Then I took him into the center arriving at about 9:30 am. He slept all the way in.
What a day!

Medication issues?

2011-01-05T16:26:00.001-05:00

Yesterday afternoon I got a call from Dr Robbins at the VA clinic. Rick had just seen him on 123010. He told me that Rick’s Keppra level was 90 and the normal range is 5-63. He suggested that we might want to cut back on his Keppra some. He even suggested that I leave of his evening dose for last night. I called Valerie at NCBH and left a message for her about this and sent her an email. I was scared to leave it off completely, but did cut out 2 of the 3 pills of 500 mg each.

This morning, Rick slept until 6:30 am and I had to wake him up. After he went to the bathroom, he was very jittery, grabbing tightly. I was afraid he was about to have a seizure. So instead of getting him washed and dressed first, I took him right out to have breakfast and to get him morning medicine in him. After eating breakfast he seemed to be better. I was able to get him dressed and on the bus without difficulty.

This afternoon I got a call back from Valerie. She said that the level are not very reliable. Since he had just taken his med that morning it could have been at peek performance instead of trough. She said that Dr Boggs usually goes by symptoms rather than blood levels. So I told Valerie that he hasn’t been feeding himself very well since Monday before Christmas, 122110, and has been very sleepy, actually falling asleep while eating. She said she would report this to Dr Boggs and get back to me. She said that Dr. Boggs may have left for the day and it may be morning before she is able to talk to her.

Cognition comes and goes

2010-12-23T23:04:00.001-05:00

It is strange how the mind can come and go. Tonight I had to run to the grocery store for some more peach preserves for the dessert I was making. I bundled Rick up and piled him into the car. It was 9 pm because Focus on the Family was coming on the radio. It is only 5 minutes to the store and I knew it would only take me 5 minutes in the store, so I asked Rick if he would stay in the car and wait for me. He was wide awake but didn’t make any response. Neither did he try to get out of the car. I hurried in and came right back out. He hadn’t moved. Stan Glover, from our church, parked right in front of us and he was waving to Rick. Stan said that Rick recognized him.

I got in the car and started for home. The lady who was speaking on Focus on the Family was talking about the Christmas traditions her family had. One of them was getting out the nativity scene. She walked by it and saw the baby Jesus was missing, so she yelled, “Have any of you seen Jesus?” No one answered. Then she saw her 3 year old with bulging cheeks. She asked him for a kiss and he couldn’t do it because his mouth was too full. So she told him to spit out Jesus. It was a cute story, but Rick just laughed at it. I knew he was laughing at the story, because his laugh was very appropriate.

It just goes to show that what I suspected is true. Rick does know and understand conversations that are taking place around him. Sometimes he is paying more attention than others. Sometimes he is completely out of it, in a fog, or sleeping. But there are times that he is very much in the know. And because he can’t talk, we don’t know when those times are.

So after my earlier post of him not feeding himself, this was an encouragement. Thank you Lord!

Disease progression or something else?

2010-12-23T13:40:00.002-05:00

It has been rather disconcerting that since Monday, Rick has just about stopped feeding himself. Alicia told me that she had to feed him his entire meal as well as his ice cream. In the past if he didn't do well with his meal, he always ate his ice cream without difficulty.

I have had to help him with most of his meals since then. He will take a bite or two and then forget what he was doing. Or he will get something on his fork or spoon and keep trying to get more on it. Then he will put it on the table instead of his mouth. Then he just about falls asleep while sitting there.

Today has been the most obvious for me. He didn't go into the center today because it was closed for the Christmas holidays. So he has been here. He has slept most of the morning. Now it is time for lunch. I fixed him something to eat and set him at the small desk in my office. I can't just let him eat. I have to watch his every move and feed him most of it. It is like he forgets that he needs to put his fork in his mouth. And sometimes I think he forgets to chew what is already in his mouth.

I don't know if this is due to a progression of his Alzheimer's or if maybe he has an infection or something that is causing the symptoms to exacerbate. He was just checked thoroughly at the hospital the first of November and now he has an appointment with the VA clinic next Thursday. I plan to ask them to do a thorough exam again then.

I sure hope this isn't going to be a continuous things.

Merry Christmas

2010-12-22T15:45:00.005-05:00

We pray that you will have a very blessed Christmas. Remember that Jesus is the reason for the season:

Attached is a video of our family.

Let the Beauty of Jesus Be Seen In Me

2010-10-15T19:30:00.000-05:00

Today was Dr. Pearce’s retirement party. It was so nice to see some of the patients we used to see when we were working there. Fran Stanford, Cindy English and Julie Hoggard were there. We also got to see Marie Powell and Ronnie and Cathy Powell. And of course, Dr Pearce and Mary Frances. It was a very nice party. It is rather bittersweet. It is the end of an era…like the break up of a family. We have been together for a good number of years. Rick started working with Dr Pearce in 1980. So we have been part of his family, so to speak, for 30 years. It will be hard not to be able to call and get his advice on Rick’s medical issues…not to have his expertise on alternative medicines…and not be able to have him lay hands on us and pray. We love you, Dr. Pearce, and pray God will bless you in this next period of your life.

We went to Davie County Hospital to see Charlotte Thompson. She had her first visit with Dr. Pearce the day after Rick started with him. She was in for her routine IV steroid pick up.

Then Randy and Cindy English stopped by our house to visit for a little while. It was so nice to catch up on their children, Patrick and Heather. Cindy has been such a good friend down through the years. They live in Roanoke very near to my dad. We will have to look them up the next time we go to Troutville.

Then Rick and I went to Target and then to the cafeteria to eat supper. We sat down and I got Rick’s food fixed for him. I asked him if it was good and he chuckled at me. That was his way of saying it was good. A little while later a man and his wife, who were eating in the booth near us, got up to leave. As he walked by me he stopped and said, “You look like you are so kind to him.” I smiled and said, “I try to be. It is by the grace of God.” He said, “I saw your little prayer.” (We said grace before we ate.) And I thought, that is what I want. I want the beauty of Jesus to be seen in me.

Let the beauty of Jesus be seen in me
All his wonderful passion and purity
Oh thou Spirit divine, all my nature refine
Till the beauty of Jesus be seen in me.

A Word from God

2010-10-04T09:25:00.001-05:00

Last night we had 3 ladies from church over for food, fellowship and Bible study. It was a wonderful time of sharing. When it was time for everyone to leave, we stood in a circle holding hands to pray. Rick was with us. One of the ladies was sharing how she was struggling with a project that she was doing. She told God that she wasn’t sure if she was going to be able to do it. We were just ready to pray when Rick started to talk. “Well…..just…..do your best!” We all stared at him for a little while and then realized that he had given her the answer from God. We praised God for his miraculous ways. Prayer was especially sweet. Thank you, God, for allowing glimpses into your Spirit inside of Rick.

Maasai Worship

2010-02-05T13:37:00.000-05:00

It really blessed me to see these pastors worshiping God in their own style.

Marigold sang in Swahili and they were blessed.

It was wonderful to see the ladies in their dress and their worship.

Africa Day 10

2010-02-05T12:06:00.000-05:00

February 5, 2010
It rained off and on all night last night. It was a nice gentle rain. It was very cool. I was able to stay in my sleeping bag most all night. We thought it was going to be so hot here but the weather has been very comfortable. In the middle of the afternoon it can get pretty hot if you are in the sun. But if you are in the shade the breeze makes it pretty comfortable.
We went to the graduation of the pastor’s conference this morning. How much fun it was to see and hear them sing and worship God in their native style. It is amazing that God is here with them this way. We have a great big wonderful God!!! Marigold sang a song in Swahili and you could see how it touched them. Some of these men walked 2 days to get to this conference. The pastors on our team taught them for 3 days. Roger Loomis, Harry Yates and Stan Rutkowski. We gave them ties. They got to come up and pick out 2-3 ties each. There were about 60 men there and one lady pastor. We were able to give her a necklace.
After lunch we went to a local church. Bishop Moses’ church. We got there and there were several women and men there. But after we got in the tiny building filled up with women and children. The ladies sang for us and so did the teen girls. They have a chant type of music where one person sings a line and then the others repeat it. And do they dance! They do a line dance and go around the church. It was good to see the ladies. We have seen the men in their costumes. This time we saw the ladies costumes. They are so colorful. Mostly reds.
I was ready to go to bed shortly after supper, but it was actually about 9:30 before I went to my tent. I’m still not ready to eat heavy food. I ate the fried potatoes, cabbage and fruit. I drank a soda, but wished I hadn't.

Africa Day 9

2010-02-04T11:52:00.000-05:00

February 4, 2010
I woke up with nausea and diarrhea this morning. I got up and took my shower and got dressed, went to breakfast but didn’t eat anything. It wasn’t long before I had to go to the choo again. Then I went back to my tent and layed down. I slept all morning. I got up to the choo again but didn’t feel very strong. Went back to bed. I didn’t sleep much but rested. The wind is blowing very strongly and we heard thunder in the distance. There is the possibility of rain but it hasn’t come yet. The nice breeze has made it comfortable to stay in the tent. Otherwise it would be stifling hot.
The others went to another school, but I stayed back. I didn’t think I was up to the jouncy ride. I am feeling better though. I am eating some saltine crackers slowly and drinking plenty of water.
I came to the supper table but didn’t eat anything. Just crackers and water. I was ready for bed at 6:30 pm. I woke up at 9:30 pm and went to the choo and then slept until 3:30 am. Went to the choo again and laid awake for a few hours. Probably fell asleep again just before time to get up. I didn’t hear CeCe or Cindy get up and get dressed. It was 7:30 am before I woke up.

Campfire and Zebra

2010-02-03T16:30:00.000-05:00

Near the end of this video, you can hear the zebra making its donkey-like call.

Maasai Bomas

2010-02-03T16:00:00.001-05:00

Africa Day 8

2010-02-03T13:52:00.000-05:00

February 3, 2010
The Maasai people are so pretty. The women and the men. They are so anxious to be your friend, They wave to you as you drive by. The men dress in really neat red outfits. The shuka is a cloth that they use as a cape for warmth and is part of their costume. Red is their defining color. I love their costumes.
The men have more than one wife. The each wife builds mud hut that are situated close together. They have a barrier around the huts made out of the horrible thorn branches that are prevalent here. These clusters are called Bomas.
The weather has been hot to us, but the Maasai think it is cold. They have kept their shukas on most of the time.
We went to 2 more schools again today. I got some videos of the children singing their welcome song. Each child raises their hand at the invitation and they all repeat the sinner’s prayer. Then we give them New Testaments so they can read them and grow.
We took a shortcut home after our last school today. We drove thru the fields. We went by many bomas We saw herds of cows that are considered a man’s wealth, and goats. It was fun going right by their homes.
Marigold took 3 of us for a ride to see the animals. We came upon a herd of Zebra. Something had scared them and they were running. I got a movie of them running, especially a baby who was frolicking around. It was really neat. We also saw a herd of wildebeest and some gazelles. It was hard to get a picture of the gazelles since they are so little.
We sat around the campfire and roasted marshmellows tonight. We gave some to the Maasai. One guy spit it out immediately. Others liked it.

Schools

2010-02-02T13:01:00.000-05:00

Africa Day 7

2010-02-02T13:00:00.000-05:00

February 2, 2010
I didn’t sleep well last night. I was on 2 air mattresses and that made it hard to stay on it. My sleeping bag kept wrapping around me as I would turn over. I would get too hot. Next year I will bring a mattress pad, fitted sheet, flat sheet and a blanket. I took one of the mattresses off and I hope I will sleep better tonight. The other thing is that when I was awake I listened to the noises. I heard Zebra, Wildabeast, and doves.
Took a “shower” this morning. The water didn’t come out of the shower head. I finally had to use the faucet at the lower part of the shower and just wash up. The shower beside me worked fine. They have really have fixed this place up since they first started. This is the first year with the permanent showers and choos.
We had hard boiled eggs, some type of bacon, spam, fruit, and toast for breakfast. We went to a school to teach the children about Jesus. Lori Loomis did a wonderful job of telling the salvation story. She is so animated. We gave out salvation bracelets, candy and New Testaments to those who could read. Every child raised their hand for salvation and repeated the sinners prayer. How special!
Had chicken, rice, cabbage, sauce for rice for lunch. Went to another school this afternoon. They had 600 students. We had the bracelets and candy for all of them but ran out of New Testaments.
Came back to camp and took a short nap. That was very helpful. Now we are waiting for supper. It was the hottest today yet, but it is cooling down some now. A breeze is blowing.

Camp

2010-02-01T12:36:00.000-05:00

Our dining hall, morning devotions around the camp fire, just keeping warm around the fire in the evening, our Maasai guards.

Camp

2010-02-01T09:58:00.000-05:00

Africa Day 6

2010-02-01T09:54:00.001-05:00

February 1, 2010
Today we are going out to the bush, to Masai country. Mike and Marigold have purchased land there to build a mission compound. They have a tabernacle there already but the sleeping quarters are still tents. They hope to have permanent tents soon but not at this time. I am anxious to see this. They say we will see lots of animals out there. Probably more than during the safari on the game reserve. And the ones at the camp are wild where as the ones in the game reserve are more tame. This is going to be fun.
We ate lunch at a restaurant along the way. We had samosas. They were a little spicy for my taste. The French fires were good and so was the coleslaw. I ate a lot of that since no one else was eating it. Then later I was told I shouldn’t have eaten it. I pray I don’t get sick. It was very good.
We arrived at camp sometime the middle of the afternoon. We got our beds set up in the tents and our suitcases arranged. We had several air mattresses in the tent when we got here. I didn’t use mine at all. CeCe and I each had 2, so we stacked them. Cindy had one that was already double.
Supper didn’t happen until after 8 pm. We has spaghetti, fruit salad and a local bread. It was very good. We had popcorn for dessert. We had a nice campfire that stayed going all night.
CeCe and I switched roommates. Michelle went to be with Nancy and Cindy came to stay with us. We miss Michelle. We had bonded with her.
The choo is the hard thing to get used to. It is the outhouse. It is just a hole in the ground and you have to squat over it to go to the bathroom. It is a cement floor and they had a mettle rack that has 3 legs that can be put over the hole to use to hold yourself up with. That is a real blessing. My knees and legs just don’t do a good job of holding me up. It is very difficult to aim correctly so much of the urine goes on the cement floor. And BM….?

Korokocho Crusade

2010-01-31T09:27:00.000-05:00

I was honored to be able to sing with Marigold Cheshier, Lori Loomis, and Gevena Rutkowski. Mike Cheshier presented the gospel with an interpreter. Many came to accept Jesus Christ as their Savior.

Korokocho Children

2010-01-31T09:20:00.000-05:00

Korokocho

2010-01-31T08:30:00.000-05:00

Africa Day 5 Nairobi Christian Center

2010-01-31T03:15:00.000-05:00

I wanted you to see that this church has all the modern conveniences for worship. Piano, drums, sound system, etc. This service is the English service. The second service is the Swahili service. They sang songs in English, but when they switched to Swahili, then we saw their true worship.

And I just had to get this little girl dancing before the Lord.

Africa Day 5

2010-01-31T03:00:00.000-05:00

January 31, 2010
Today is Sunday. We all divided up to go to the different churches in Nairobi. Each of the pastors on our team preached at a church. I went with Mike and Marigold Cheshier to Nairobi Christian Center, the largest church in Nairobi. It is pastured by the general superintendent of the Kenya Assemblies of God. We had 2 services, one in English and one in Swahili.
Mike spoke on John 1:29 The master theme of the Bible, the scarlet thread that winds its way through the Scriptures. “Behold the Lamb of God who takes away the sin of the4 world.” It begins with Adam and Eve, when God clothed them in animal skin after the fall. It doesn’t say what animal it is but because a lamb is used throughout the Bible for sacrifices, we assume it was a lamb. Then Able offered up a good sacrifice of a lamb for himself (one person). Moses taught the people to offer a lamb for the Passover, one lamb for a family. At the giving of the 10 commandments, a lamb was offered for the nation. Then Jesus became the sacrificial lamb for the world.
He used the courtship of marriage here in Kenya. The groom has to pay a bride price. Jesus did that for his bride. Then the bride goes to the grooms house for a meal. He passes a cup across the table to her and if she accepts it , she is saying she accepts his proposal of marriage. This is the sam thing we are doing when we take communing and take the cup of his blood. We are saying, I accept your proposal of marriage.
We went to the ghetto again tonight for the last time. There were many people there. It is estimated over a thousand. When we arrived the platform was already set up and a group from the local church was singing. The people in the congregation were dancing and singing to the music. After the message, Mike asked people to raise their hands if they wanted to accept Christ. There was a lady sitting beside me who raised her hand. When he asked them to come forward for prayer, she hesitated, so I told her I would go up with her. I took her hand and led her up to the platform. She stayed there with her hand raised and repeated the prayer Mike told them to pray. Then they had all the people move down the street a little bit where someone could talk to them in more detail.
The new church that was started there reported over 100 children and 7 adults on the first Sunday service this morning. Praise the Lord!!!
It was a hard thing to leave tonight when it was time. The children were clinging to us and asking if we were coming back. Of course, we had to tell them no. They all wanted to be touched. I would lay my hand on their heads and say ‘God bless you.’ Then others who heard came looking to me for that blessing as well. It seemed it was never ending. The children who were carrying a baby wanted us to touch the baby as well. They didn’t want them left out.

Africa Day 4

2010-01-30T15:05:00.003-05:00

January 30, 2010
Thank you, Lord, for a wonderful night’s sleep. I only woke up once in the night and didn’t get out of bed. Slept until 7:30 am – 8 ½ hours of sleep. The most I’ve slept in one night in a long time.
We had a wonderful time of devotions and prayer this morning. Mike used Acts 17:16-34 and I Cor 2:1-5 to talk to us about not coming to people with our limitations but with the demonstration of the power of the Holy Spirit.
“From one man He made every nation of men, that they should inhabit the whole earth, and He determined the times set for them and the exact places they should live.” This should give us peace in these times of uncertainty in the world.
“I came to you in weakness, and fear, and with much trembling. My message and my preaching were not with wise and persuasive words, but with a demonstration of the Spirit’s power.”
We prayed especially for Mikey in the Congo and his ministry, for Jimmy’s back (facing surgery when he returns), Judy’s shortness of breath episodes, Nancy’s cysts in her breasts, and Rick’s healing. It was a wonderful time of waiting on the Lord. We didn’t want to leave the room the presence of the Lord was so strong.
I am believing that Rick is going to come out of the darkness that he is in and be transformed into a soldier of God. It was 3:30 am at home when we were praying. Thank you Jesus!!!!!
We were again at the ghetto today for the crusade – Koro Kocho. We had singing by the nationals, and by Marigold’s group. There were quite a few testimonies and Mike preached. There were more that came to be saved this time.
The children are so in need of attention. When you pay attention to one child, all the others come to you. If you touch one the others want to be touched. While praying during the alter call, I was praying with one child and all the others started looking at me. I started praying for each one, laying my had on their head. At the end of the prayer time, one child stood right up next to me. I put my hand on her chest while she leaned on my leg. She just stayed there. Then she worked to get her hands under my hand so that I was holding both her hands with my one hand. Finally I took each of her hands in each of mine and was swaying with the music. She started swaying with me. Her name is Margaret. She is so sweet. While I had my hand on her chest, I could feel her breathing. She had a lot of congestion in her chest. Her nose was running. I prayed for her healing. I hope I see her tomorrow.
I am going with Mike and Marigold to church tomorrow. They are preaching and singing at a very big church here. I am looking forward to being in a native Kenyan church.

2010-01-30T14:58:00.000-05:00

Africa Day 3

2010-01-29T14:47:00.000-05:00

January 29, 2010
I woke up a couple of times in the night but went right back to sleep. But then I woke up at 5:30 and couldn’t go back to sleep. I laid in the bed thinking. At 6 am the sky started to lighten and I decided to get up and take my shower. I couldn’t get the shower to work so used a cup to pour the water on me, soap up and then rinse off. I washed my hair under the faucet. When I turned the water off, the shower came on. How strange. I don’t know what I did to make it come on.
We went down stairs to a beautiful buffet for breakfast. They had very nice fruit, omelets, potatoes, bacon, fried bananas, and pastries. I am not sure how we are going to lose weight. 
Our devotions this morning was from Luke 9 & 10 and Mark 16. Mike Cheshier wanted us to know the authority we have as we go into the ghetto to minister.
“Take nothing for the journey—no staff, no bag, no bread, no money, no extra tunic. Whatever house you enter, stay there until you leave that town. If people do not welcome you, shake the dust off your feet when you leave their town, as a testimony against them.”
“Go! I am sending you out like lambs among wolves. Do not take a purse or bag or sandals: and do not greet anyone on the road; when you enter a house, first say, ‘Peace to this house. If a man of peace is there, your peace will rest on him: if not, it will return to you. Stay in that house, eating and drinking whatever they give you, for the worker deserves his wages. Do no move around from house to house. When you enter a town and are welcomed, eat what is set before you. L Heal the sick who are there and tell them, ‘The kingdom of God is near you.’ But when you enter a town and are not welcomed, go into its streets and say, ‘Even the dust of your town that sticks to our feet we wipe off against you. Yet be sure of this: The kingdom of God is near.’ I tell you, it will be more bearable on that day for Sodom than for that town.”
“Go into all the world and preach the good news to all creation. Whoever believes and is baptized will be saved, but whoever does not believe will be condemned. And these signs will accompany those who believe: In my name they will drive out demons; they will speak in new tongues; they will pick up snakes with their hands; and when they drink deadly poison, it will not hurt them at all; they will place their hands on sick people, and they will get well.”
We are going to be planting a church in the ghetto. Up to this point it is Satan’s territory, but he has to flee in Jesus’ name. We are God’s chosen army to go into this area that Satan owns and pull down strongholds.
We went to the market today. It was a very nice place, but peddlers calling out to you all the time. Some of the women, who are used to bartering, helped us purchase some very nice items.
We ate at a nice open air food court, got Chinese food. And then came back to the hotel to get ready for tonight’s crusade. Marigold and Lori asked me to sing with them. How exciting.
After a short break, we put on our boots and climbed into the vans to go to the ghetto where 500,000 people live in a 2 mile radius. No running water and no septic facilities. There was raw sewage running down the streets. The guys set up a stage with a sound system and we had church. Marigold, Lori and I sang 3 songs for them and then Mike preached. There were quite a few who came forward to receive Jesus as their savior. We got out right away so that we would not be there after dark. The children were so needy for attention. There is a church school there for them and they were singing the songs they had learned in school. “I’ve got the joy, joy, joy, joy down in my heart.” And others. They kept singing the same songs over and over to keep our attention. It is so sad to see them in such an environment. Some of the girls about 7 years old were carrying a younger sibling on their backs. They were all dirty and jumping over the stream of sewage. It was good to be able to love on them for a little while.
Then we went to eat at the Java House where we got guacamole bacon cheeseburgers French fries, and ice cream. By the time we finished eating we were all dragging and ready to go back to the hotel and go to bed.
Thank you, Lord, for a wonderful day!

Africa Day 2

2010-01-28T14:44:00.001-05:00

January 28, 2010

We arrived in Amsterdam about 12 mn ET. Lori and Roger and their group got here about 30 minutes later. While waiting for them to arrive we were sitting at a bar of an eating place that wasn’t opened. We were facing out to the concourse. People kept stopping by to ask us directions. They thought we were information people sitting behind a counter. It was funny. We just sent them down the concourse to the main terminal. 

It was really good to see Roger and Lori. They are just the same as they have always been. It is just like we had never been apart. We have about 4 hours here before leaving for Kenya. We went to McDonalds to eat a little and now we are at the gate waiting for our flight. Lori says we will have to go thru security again here.

We got into the Nairobi airport at 8 pm local time, went thru customs, found our bags and came to our hotel. After getting settled, it was about 11 pm and we went to bed. Our room was pretty hot and the air conditioner wasn’t doing much, so we left the door open to the outside. It brought in much appreciated cool air.

It was good to get horizontal. 

Africa Day 1

2010-01-27T14:29:00.001-05:00

January 27, 2010
Well, I’m in the airport in Greensboro waiting for my flight. I checked both bags free. Praise the Lord! And they were under 50 lbs. My carry on bag is pretty big. It might not fit in the overhead bin. We will have to see. But someone just came and gave me a tag for my bag to be stored in the cargo place. I guess that means that the plane I’m flying on now is going to be a small plane. It is a Comair flight.
I told Rick a couple of days ago that I was going to Africa. He was alert and really seemed to understand what I was saying. His eyes got really sad and he shook his head very slightly ‘no’. He was close to tears and it took him a good part of the evening to get over it. He hasn’t seemed to be upset at all since that first time I told him. But I have noticed that he has been clinging more to me than usual. When I put him to bed the last few nights he would hug me and hold me. I wonder if he remembered that I was going away.
This morning when I took Rick to the center I told him again that I was going on a mission trip to Africa. He rubbed his eyes a few times, and said yes several times. I prayed with him and sang with him. When we got to the center, I took him in and kissed him goodbye. He was smiling and joking with me by not really kissing me. He walked into the room without problems. I think he will be fine.
Everyone has prayed for me for a safe trip. I know that God is with me and will keep me in his care.
Stan and Katherine Glover brought me to the airport. I’m glad they did, because 2 big suitcases, plus my carry-on’s would have been a lot to handle by myself.
Shortly I will be meeting, Harry Yates and Celecia Cutts. Also, Eric and Jim. Yeah!
I boarded the plane and it taxied out to the runway and then the captain said there was a mechanical difficulty. So we taxied back to the gate and waited an hour while they fixed it. Then we were able to leave. We were in the air 1 hr and 15 min. The hour delay made us late from many of the connecting flights.
My flight was to leave in an hour but was already boarding. I had to go thru the tunnel from one concourse to another. I was walking as fast as I could using the moving walkways. I stopped to see what time it was and if I had time to go to the bathroom. I figured I had 30 minutes yet. So I stopped. I was only a little way from the gate.
I was back in the concourse coming on another moving walkway, trying to figure if I should ride it or go beside it. My gate was just at the end of it. When the intercom said, “Will passenger Joyce Coburn come go gate A60 immediately.” Then I started running. I was already winded from walking fast. Running didn’t last too long. They could see me coming. They rescheduled my seat, giving me an aisle seat, instead of an inside seat. I thought that was nice of them.
Then I boarded the plane, hoping I would be sitting near Harry and Celecia. The flight attendant told me to go across the plane to the second aisle. As I turned into the aisle, I saw Harry coming at me from the back of the plane. What a relief to know I had met up with my group. I proceeded to my row and there was a man sitting in the seat I had been assigned. There was another seat in the middle that was empty. I told him I was supposed to have the aisle seat. He got up and moved to another seat. I think he was just picking as seat and sitting in it. But if the gate people hadn’t reassigned my seat, I would have been sitting in the middle with no spare room. As it is, Harry and Celecia are on the left of the row of 4 and I am on the right with the seat next to me empty. How wonderful. It makes for a very comfortable ride.
They served supper. It consisted of a tossed salad, a pasta dish, a roll and butter, crackers and cheese and a brownie. It was very nice. I didn’t get lunch. I just snacked on my chex mix while waiting to board the plane in Greensboro. I was glad I had made it.
I watched a movie, tried to play solitaire, but had a hard time figuring out the controls. Then decided I would try to sleep. It is good and dark and the cabin is quiet. But I couldn’t get sleepy. So I decided to write in my journal. It is only 7:30 pm. So not really time to be tired.
We arrive in Amsterdam at 5:55 am their time. That will be about 12 mn for us. We will meet up with Roger and Lori Loomis and the others there.

God's Promise

2010-01-21T14:27:00.001-05:00

I saw this on facebook today. What a wonderful promise. I will keep it with me as I go to Africa next week.

“I'll show up and take care of you as I promised and bring you back home. I know what I'm doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for.” Jer 20:11 The Message

This is another post on facebook. How true!

We cannot say with our mouths, "I trust God," and then allow our emotions to be upset and our thoughts to run wild.

Pre Africa trip

2010-01-18T14:23:00.000-05:00

Yesterday at church, Dawn Creason told me that Jacob prays for my Africa trip mentioning my name every day. What a blessing this is, for a young child to be remembering me in prayer.

I saw him on facebook today so I posted a comment to him as follows:

Face book post.

Joyce Hightower Coburn
Hey, Jacob. Thank you so much for praying for me. I really appreciate it. I know your prayers will have a big part in what I can accomplish for God while I am in Africa. I hope to have good pictures and journal for you to see when I get back. You are a blessing. :)

Jacob Creason
Ur welcome u will be in Gods arms when ur there, I know it

Joyce Hightower Coburn
Thanks, Jacob. I pray you will keep your tender heart towards God as you grow in Him. Blessings.

Jacob Creason
That means alot to me thanku

Also, at church yesterday Karie Mixon told me that God impressed on her to tell me that whatever I have been concerned or worried about will be taken care of. I take that to be 1. Arrangements for Rick while I’m away. 2. Tamara’s spiritual condition. 3. Rick’s healing. Thank you, Jesus, for your faithfulness!

Christmas Greeting 2009

2009-12-18T17:45:00.000-05:00

Make a Smilebox greeting

Impaction - Don't read if it is TMI :)

2009-07-31T16:07:00.001-05:00

Rick has been doing pretty well lately. No seizures and his medications seem to be adjusted so that he is alert and social, trying to interact with others. He is sleeping through the night most of the time with only getting up to the bathroom once. He is eating well.

The hardest thing that I have to deal with right now is taking him to the bathroom when we are not at home. He gets very anxious, is uncertain that the toilet seat is there for him to sit on, and won’t sit down. He is very strong and I cannot even push him down. When he gets anxious like that and I do get him seated, he won’t relax enough to go. This gets very frustrating. Sometimes even at home it takes 2 or 3 tries to get him to urinate. He just can’t seem to realize that it is ok to let go. But we are managing.

This past week I have noticed that he hasn’t had a bowel movement at all. Saturday and Sunday 072509 & 072609 I am for sure he didn’t have a BM. I don’t remember before that. Then he was at the center during the days and I didn’t know what happened there. Wednesday night when we were getting into the car to go to church, he complained of pain when sitting down. Of course, he couldn’t tell me where the pain was. But he was holding himself off the seat with his hands. He finally sat down saying, “It hurts”.

Well, I had been giving him Shaklee’s Herb Lax 2 a day. In the past, that has helped. Thursday morning early he had a good sized BM and then again when we got up in the morning he had another one. So I thought he was alright. He wasn’t complaining of pain. So he went on to the center.

When I got through with work that night we sat down to watch TV and Rick had a hard time sitting on his easy chair. Again saying “It hurts.” I decided to give him a couple of senokot. Well, he went to bed without difficulty and slept all night. When we got up this morning about 6 am, he couldn’t have a BM. So I decided to go get a fleet’s enema to give him. I gave that to him about 7:15 or so, and about 5 minutes after he was ready to go to the bathroom. All the liquid came out but no BM. I put gloves on and could feel a huge mass too big to come out. So I was ready to dig it out for him. I put him on the bed but he wouldn’t lay still for me. I didn’t know what to do, so I called the family doctor. Of course, I had to wait for her to call me back.

In the mean time, he went to sleep lying there on the bed. I went into the office to check my email. I had emailed my manager to let her know that I was going to be late for work. I was only in there about 5 minutes, when Rick comes walking down the hall. He was drizzling a trail behind him. I got him in the bathroom and he had success! He seems to empty everything out. Praise the Lord!

What an awful experience. It was so painful for him and I didn’t know how to handle it. Now I have glycerin suppositories on hand, plus another enema. But I hope this doesn’t happen again. I will watch more closely, to be sure.

How Bazaar!

2009-06-17T10:44:00.001-05:00

Rick didn't sleep much last night. He went to bed at 9 pm and then woke up sometime in the night (I can’t remember the time) to go to the bathroom. I took him, and then went to the other bathroom to go myself. When I came back into the bedroom, he was still on the toilet. So I climbed back in bed to wait for him to get done. I guess I fell asleep and didn't hear him get up or come into the room. (I have done this plenty of times and hear him come into the room, get up and help him in bed and then go back to sleep.) I didn't wake up until the alarm went off this morning. He was up wandering around in the bedroom. At first I thought he had just gotten up. But then I realized that I didn't remember getting him back in bed again last night. He was walking around without his pajama bottoms or underwear on, just his tee shirt. He must have been up a long time last night.

I went looking for his pj's and finally found them on the porch outside my office. It is a little porch with no access to the yard. He had laid them down on the farthest part of the porch almost off it. Of course it had been raining so they were wet.

I got him dressed and decided to have him lay down while I got ready. He went to sleep and so I decided that I would keep him home from the center and let him sleep. But he woke up again shortly and so we ate breakfast and went on to the center. He will probably be sleepy today. I have let Lynn, the nurse at the center, know what transpired during the night.

Pool fun!

2009-06-15T10:12:00.001-05:00

Saturday we went to the pool for the afternoon. Rick did so very good in the water. He walked down the steps into the water without hesitation and swam around enjoying himself. He actually swam under water a couple of times. I was so surprised.

But then I really messed up. I forgot to give him his medicine Saturday evening. So Sunday morning when he woke up he was not acting himself. His eyes were slits and he was jerking some. He had gone to the bathroom when I remembered that I had forgotten to give his medicine. So I went and got it right away and gave it to him. I gave him the 100 mg of Topamax that he should have gotten the night before, instead of the normal 75 mg he usually gets in the morning. Then I put him back in the bed. He was stiff and didn't move easily. He kept his knees pulled up. I was finally able to get him to lay them to the side still bent up. Then, in a little bit, he went to sleep and slept it off. We didn't make it to Sunday School yesterday because I let him sleep as long as he wanted to. When he woke up he was still a little resistant to my direction but he ate his breakfast fair and we went on to church. He was fine the rest of the day.

I get so mad at myself when I forget to give him his medicine. I'm much better at it than I used to be, but every now and then it still happens.

I was talking to the nurse, Lynn, at the center last week. She says Rick is so much better than he was. He doesn't sleep during the day at all. He is up walking around visiting with the others there. She can talk to him across the room and he responds. He comes to her office trying to tell her something. Lynn says he isn't a typical Alzheimer's patient. She suggested that I ask if there could be a misdiagnosis. Wondered if he should get a CT scan or MRI? I will ask.

Going down on med too faxt?

2009-06-07T21:48:00.001-05:00

So Rick has been down to 75 mg Topamax since Friday. That’s Friday morning, Friday night, Saturday morning and Saturday night, and this morning (Sunday). We finally got home and settled down to watch some TV about 4 pm or 4:30 pm. Rick slept most of the time I was watching. About 5:30 pm, he started talking like sleep talking. He was calling the name of Jesus. He has done this before and I didn’t pay a lot of attention to it. I kept looking at him every little bit but didn’t get alarmed. Then about 5:45 pm I looked at him and his hand was stretched out and he was jerking a little bit. He was still talking and would even respond to me when I talked to him. But he didn’t open his eyes. He was a little stiff. It took about 30 minutes for him to get back to normal. I guess this was probably a petite mal seizure. He finally woke up enough for me to take him to the bathroom. But he didn’t do anything. I put him in the bed after taking off his clothes. He didn’t go to sleep. I sat on the bed beside him talking to him. He said some things that didn’t make much sense. He smiled at me and said my name. But I’m not sure if he was calling my Joyce or talking about me. I finally got him up to have supper and I gave him his pills. I gave him 100mg Topamax tonight. He finally got back to his normal self. Maybe I went down too fast. I will talk to the doctor tomorrow.

Changing med dosing again

2009-06-06T21:54:00.001-05:00

060309

I am still wondering if Rick is getting too much Topomax.

He continues to be seeing things. He is agitated much of the time. Resistant to my direction. It is hard to get him to sit down on the toilet and then when I finally get him down he gets up without doing anything. Some times it takes 3 tries before he finally will urinate. I have had to sit down beside him and hold his hands still before he will calm down enough to use the bathroom.

These aren’t life threatening, but I know he is not enjoying feeling this way and I don’t enjoy having him this way. The few days after getting off the Dilantin and going up on the Topamax was his best time except for the seizures.

I am wondering if he has too much Topamax in his system now. I asked Valerie to talk to Dr Bell if going down to 75 mg bid would be a good thing to try?

Rick is sleeping well at night, but he wakes up with a start about once a night. He is ready to jump out of bed and does if I don’t catch him first. I can usually calm him down in a couple of minutes.

Most of the time he eats well, feeding himself. Occasionally I need to redirect him back to eating.

He is sleeping more during the day in the last few days. Saturday he slept much of the time while we were at the pool and then again when we got home. Sunday afternoon he slept all afternoon. We went to church that night again and then he slept when we got home again. There for awhile he stayed away most of the day.

I just feel that we jumped up to the 100mg bid of Topamax pretty fast because of the seizures, and he didn’t have a chance to try the 75 mg bid.

Valerie wasn’t able to get up with Dr Bell until Thursday, 060409. He is not opposed to trying Topamax at 75mg BID.

So we started taking 75mg bid on Friday, 060609.

Letter to Valerie, Dr. Bell's nurse

2009-05-21T11:33:00.001-05:00

Dear Valerie,

As far as seizures go, Rick is doing fine. But there are some other things that are concerning to me and I wonder if they could be side effects of Topamax.

I think maybe he is having some hallucinations. It is hard to tell since he can’t talk. But he gets very anxious, maybe frightened, at times, saying, “Ohh..oh no.” Once he even slapped his leg like something hadn’t gone the way he thought it should. Sometimes he has said , “I’m sorry.” He wakes up at night at least once each night with a start, jumping up in the bed and trying to get out of it, very anxious. I can calm him down in just a minute or two and he goes back to sleep. Then usually sleeps the rest of the night without incident. May get up once to go to the bathroom.

He seems to be a little more agitated this week also. Friday was a great day. I can’t remember when he started getting this way. But most of this week he has been more agitated, rubbing his hands together. Not staying focused on his eating. Not sitting still in his chair. Looking worried. More resistant to my direction. Hard to get him to sit on the toilet and chairs. He pulls his hand away when I try to lead him somewhere. Sometimes he doesn’t want to move his feet.

These things have happened in the past but I felt they were medicine induced. Especially since he has been so good about all of this with the Dilantin gone.

Do you think that his Topamax is too high? I just started with the generic yesterday and these symptoms have been going on all week.

Valerie's response:

Dr.Bell says to try staying at current dosages of Topamax and Keppra for now---give it another week to see if these symptoms resolve. If not, then he says we can try reducing the Topamax by 25mg to see if that will help with side effects but keep seizure control.. He feels like if we give it a little more time, that he will become more accustomed to the medication and the symptoms will fade away.

My comment:

I didn't think about the fact that these symptoms might be part of the adjustment to the medicine and may go away in a little bit. I will keep observing.

No More Seizures

2009-05-19T12:18:00.000-05:00

Rick is doing fairly well now. He isn’t a zombie. He is much more alert and talkative. He is eating well. It seems the Topamax is working. He hasn’t had any more indications of seizures. Praise the Lord!

He seems to have some hallucinations. It has been hard for me to tell if he has had any before this since he doesn’t talk much. But he wakes up in the night with a start and is very anxious. I can usually calm him down quickly and he goes back to sleep. He sleeps all night except for these occasions and that is usually only once a night.

This morning on the way to the center, He started saying “Oh! Oh! Oh no!” over and over, slapping his leg. I asked him what was wrong. Of course he couldn’t tell me. But he looked at me with a frown on his face like something terrible was wrong. I wondered if he was hallucinating then. I need to ask Valerie to ask Dr Bell it this could be a side effect of Topamax.

Good Report

2009-05-15T09:40:00.001-05:00

I got a very nice note from Lynn, RN, at the center today.

Hello Joyce,
I wanted to let you know that Rick had a great day! He took a bath without struggling with the CAN’s, he’s been very alert, smiling and talkative. No seiqure activity noted! He ate lunch without assistance and walked about most of the day.
Thought I would send you a happy note. :)
Lynn

Praise God for a good report!

A good night

2009-05-13T12:09:00.000-05:00

Well, Rick slept all night except getting up at 12:30 am to go to the bathroom. It is 6:30 am now and he is still sleeping. He woke up a little bit and rubbed his eyes, but has gone back to sleep again. I don’t know if I will take him to the center today. I need to be able to observe him yet, until he gets back to normal. I decided to not work today too, so that I can observe him better.

He ate good for breakfast. I only gave him 75 mg of Topamax this morning. He has been walking around and then finally sat down on the chair and went to sleep.

I talked to Valerie, Dr. Bell’s nurse, this morning. She said it was ok to only give him the 75 mg this morning but then go to 100 mg bid from here on out. I hope he doesn’t become a zombie on this medicine also.

More seizures

2009-05-12T19:30:00.000-05:00

So I increased Rick’s Topamax Thursday to 75 mg bid. He seemed to be fine. Then on Sunday he was having the little starts off and on all day and then again on Monday morning. I called Valerie, Dr. Bell’s nurse, and she said Dr. Bell said to give him 100 mg at his evening dose and keep the 75mg at his am dose. So he got his first 100mg dose about 6:30 pm last night.

I went to Bible Study Fellowship last evening and Debra Riley was here with Rick. She said about 8 pm he had a seizure-ish episode with muscle jerking and being out of it, not unconscious, lasting about 5 minutes. Then he was ok and ate a bowl of ice cream all by himself.

This morning he seemed ok and was easy to get along with. I took him to the Center. About 8:45 am I started getting calls on my cell. I was on a conference call for work and didn’t respond to them. But then my home phone called. So I decided I had better answer it. It was Lynn, RN at the Center, saying Rick had a grand mal seizure there this morning about 8:30 am. He fell forward and bumped his forehead on the floor and got several abrasions on is face from the carpet. So I went to pick him up. I spoke with Dr Bell’s nurse, Valerie, who spoke to Dr Bell and they said to give him a bolus of Topamax today of 50 mg when I got him home and then another 50 mg this afternoon and then his regular dose at supper. She told me that it takes about 7 days for the Topamax level to get up in his system and become effective. So hopefully the bolus will help to bring it up faster.

Rick is home now and sitting in his chair in the living room watching TV.

Rick has been so much more social since he has been down and off the Dilantin. He is more alert, stays awake more, tries to make jokes, says more meaningful things and laughs a lot.

The other evening we were sitting on the couch in front of the living room windows. It had been a beautiful day and I had the window open and the whole house fan on pulling the cool air in from outside. It was getting a little chilly. All of a sudden Rick looked at me and said, “I’m cold.” He does get cold a lot easier than I do. That was a very good statement letting me know what to do for him.

Rick was in the living room in his lounge chair watching TV. I kept checking on him while I did other things. He didn’t seem to fall asleep at all. He just sat there with his head up looking toward the TV. I decided that I should be able to go back to work after lunch, so I emailed Mary Beth, my manager, to let her know this.

Then I proceeded to prepare lunch. I got out some frozen hamburg and put it in the microwave to thaw it. I was going to make sloppy joes. It took me about 30 minutes to get it ready. Just then Rick came walking out to the kitchen. So I sat him down at the table and brought his plate to him. He picked up his fork right away trying to eat it. I hadn’t gotten it cut up for him yet. As I was cutting it, I noticed he was having those little starts every few seconds. I went to get his second dose of Topamax bolus – 50 mg. I gave it to him but he had trouble swallowing it. Those little starts interfered. I was afraid to let him eat much because he might choke on it.

So I decided to call the doctor again. I reached the receptionist and told her that I needed to speak to Dr. Bell or Valerie in person, not just leave a message. She went to get Valerie. Before she got back Rick had a second grand mal. He was sitting in his chair, so didn’t fall. As soon as the jerking was over, about 30 seconds, I pulled him in the roller chair over to the couch to try to lay him down. This was a very difficult task. He was limp, dead weight. Just as I got him on the couch I saw that he was wetting himself…and my couch. I also found blood on his mouth. He must have bit his tongue during this seizure. I hadn’t noticed that at all with the others.

This all happened about 1 pm. I had to email Mary Beth again to let her know that I wasn’t going to be working at all today. Rick slept until 3 pm. He then woke up enough to get to the bathroom. I was able to take off his wet clothes and put his pajamas on. He is in the bed sleeping again now.

Valerie called me back saying that Dr Bell had two options. We can wait to see if the Topamax will take effect, or we can give him a bolus of Dilantin to hold him until he gets regulated on the Topamax. She said Dr. Bell would call me after he got out of his meeting this afternoon. I opted to wait until this afternoon to talk to Dr. Bell. I really hate to put him back on Dilantin, but will if Dr. Bell thinks it is the best thing to do.

4:05 pm. Rick is waking up again, but has just turned over in the bed and is settling down again.

Dr. Bell called me about 5:30. Rick had been sleeping most of the afternoon, only getting up to go to the bathroom a couple of time. We decided to see how he did with this bolus of Topamax instead of going back on the Dilantin.

It is now 6:30 and Rick is starting to get more active. He got up by himself and walked around the end of the bed and then it happened. He had one of those little starts. I said, “Oh, no. You are not going to do that.” As if that would stop them. I put him back in the bed and went to get his supper time pills. There is 100mg of Topamax in that dose. I crushed them and put them in maple syrup and he took them without difficulty. But he keeps having those starts. Even while he is lying still in the bed. I just don’t know what I’m going to do. I hate the violence of the seizures. It hurts me to see him have them. I hope the medicine kicks in soon. It’s 6:40 pm and he has gone to sleep.

7 pm. We just got back up to the bathroom. He didn’t do anything but he had very minimal little starts. I could hardly make them out. He is back in the bed resting. Not asleep, but close to it.

7:07 pm. Rick is asleep. Praise the Lord!
7:14 pm He is awake again. He went back to sleep again and has been sleeping for the last 2 hrs. He would wake up and change positions and then go back to sleep again. I sure hope he will sleep tonight when I’m ready to go to bed.

Rick's Journal

2009-05-12T18:03:00.003-05:00

I have finally entered Rick's journal into the blog. It goes back to May 2008. If you want to read it chronologically, you will have to go back to the May 2008 link and scroll down to the last post and work your way up.

These are the notes and comments that I have written down as things happen to him. I hope they are not too boring.

Finally off Dilantin, but now seizures

2009-05-06T17:30:00.000-05:00

Rick took his last Dilantin Saturday night 050209. He hasn’t had any indications of seizures. One morning he had a couple of those little jerks that are probably the beginning of a seizure but it didn’t amount to anything. I hardly noticed them.

This morning, after sleeping all night, he had a grad mall seizure. He had gotten up and gone to the bathroom. I washed him up and had gotten his underpants on. He had a little trouble getting them on but he did with my help. We had gone over to his side of the bed to get his clothes on when he started his seizure (6:51am). I was able to lower him gently to the floor. He jerked for about one minute and then slept with deep breathing for a couple of minutes. Then he slept with normal breathing until 7:06 am. Then he woke up trying to get up. He couldn’t get up so I was able to get him comfortable on the floor again. He slept like this waking up off and on trying to get up. Finally I was able to get him in the bed. Again he would sleep and wake up restless, sleep and wake up restless. He finally went to sleep and stayed asleep for a good while. He just got up to the bathroom (9am). He was a little unsure on his feet but we made it there and back again. He has gone back to sleep.

He got up about 11:45 and we got lunch. He ate well and he has been up ever since. I tried to get him to lie back down, but he didn’t stay there.

We went outside for a little bit to look at how the garden and flowers faired in the thunderstorm last night. He did fine, acting his normal. I had to keep calling him back or he would wander away.

3 pm. I think he is back to normal now. I still haven’t heard from Dr Bell. I hope he calls me soon.

9 pm. We came home from church and had a message on the phone. Valerie, Dr. Bell’s nurse called saying she talked to Dr. Bell and he said to increase Rick’s Topamax to 50 mg am and 100 mg pm.

Rick's conversation with Howard

2009-04-09T17:16:00.002-05:00

Rick has been down on his Dilantin now for 3 weeks and he is much more coherent and talking more. Howard and Bonnie have been here this week and today Howard was talking to Rick. Rick was trying to fold a pair of pants and Howard helped him. Howard asked Rick, “What do you want me to do with these?” Rick answered immediately without hesitation saying, “You can do anything you want to with them.” Then Howard was saying to him how much he enjoyed being here and Rick responded, “You can come…any time you want to.”

Seizure Doctor Appointment

2009-03-19T17:13:00.000-05:00

We went to the appt with Dr William Bell today, the seizure doctor. Rick’s Dilantin level yesterday was 25.5. On 021809 it was 14.3. He has been on name brand Dilantin about 2 weeks. His last seizure was 021809 and his last grand mal was 010809.

His medications are:

Topamax 50 mg bid
Keppra 1500 mg bid
Dilantin 100 mg 1 am 2 pm
Zoloft 50 mg qd
Children’s multivitamins
Vitamin C 300 mg qd

The plan is to decrease the Dilantin to 2 qd for a month and then down to 1 a day for 2-3weeks and then discontinue it. We may increase the Topamax by 25 mg if he has any seizures. I am very happy about this plan.

Another Partial Seizure

2009-02-18T17:11:00.000-05:00

Rick had another spell today. Bev, his sister, is here and so Rick had stayed home to be with her. I was working and he and Bev were in the living room.

Bev called, “Joyce!” I knew something was happening. As soon as I could, I hung up with my phone call and went out. Rick was standing in the living room and Bev was trying to get him to come with her. Each time she reached for him he would move away. I went to him. His eyes were glassy and he was jerking, separate body parts, arm, shoulder, leg, etc. I was able to get him to sit down in his chair but he was moving rather stiffly. He continued to jerk while sitting and remained glassy eyed. He kept trying to get up, but we kept him still.

This lasted about 15 minutes. Then he began to chuckle and try to converse with Bev.

I was on the phone with Dr. Pearce. He said that his brain must be getting worse and the medicine isn’t working anymore.

Dr Pearce is going to send some Topamax samples home with Cade, our son in law, today for Rick to start 25 mg bid for 3-4 days and then go up to 50 mg bid. Hopefully this will help.

Rick finally got up and went to the kitchen and ate a good lunch. He went to the bathroom after lunch.

Partial seizure?

2009-02-07T17:08:00.000-05:00

Last night Rick woke up about 2 am. He went to the bathroom but when he came back to bed he acted seizurish for about 30 minutes or so. He had that glazed look on his face and he tossed and turned in the bed. He would have gotten up if I had let him. He had severe body twitching. Finally he settled down and went to sleep.

Then at 6 am he woke up with a start and started moaning. Again he had severe body twitching. Sometimes he would hold his breath. This was a little different than the earlier episode. I felt this could actually be a seizure, just not the grand mal. It lasted about 10 minutes and then he went back to sleep. It is 8 am now and he is still sleeping. He hasn’t had his meds yet this morning.

Seizure like episode

2009-01-31T17:05:00.000-05:00

This morning we woke up at 8:15. Rick got up and went into the bathroom and then turned around to come back out. I got him and helped him to the toilet. He started peeing before he actually got seated.

When he got up he wasn’t acting normal. He didn’t want to move his feet. He took baby steps. I finally got him back over to the bed and sat him down to put his slippers on. His eyes were glassy and he was having body jerks, his arm, leg, etc. He had not had his meds yet. He had just gotten up. So I decided we needed to get to the kitchen for breakfast. With much effort I got him to walk down the hall. When we got to the steps he wouldn’t budge. I put my arm around his waist and his hand on the rail and pulled him down, moving his feet one at a time. We finally got down. He seemed to have something in his mouth to spit out so I took him to the sink but he wouldn’t spit. So I put him down in the roller chair and pushed him up to the table. He continued to shake badly this whole time and his eyes were glassy. So I decided it was not a good idea to eat or take pills. So I pulled him into the living room and transferred him into his lounge chair. I was then able to give him his medicine crushed in maple syrup. This was about 8:45 am. In a little bit he looked at me with a normal expression on his face and smiled. Then he went to sleep and is sleeping now. 9:45 am

Zombie

2009-01-30T17:00:00.000-05:00

This morning Rick’s feet looked better. They are still swollen but not as bad. He hasn’t had any Lasix yet. I still have to get it filled at the pharmacy.

He still is like a zombie. He leans to the left. He isn’t feeding himself very well. I had to help him a lot with his breakfast this morning.

At the center this morning, he got out of the car by himself and walked towards the door without my direction. He got distracted though, by the bus that was at the door and walked toward it instead of going into the center. I was right behind him and able to get him back in the right direction.

He had his first Lasix at 8 am today.

Dr Visit

2009-01-29T16:58:00.000-05:00

We went to the doctor today to check out his swollen feet. Dr. Snider gave him a prescription for Lasix to use for a few days until his swelling goes down.

I got his Dilantin level drawn again and Dr Snider also did some blood work.

Rick is presently taking Keppra 1500 mg bid, Dilantin 100 mg 1 in am and 2 in pm, Zoloft 50 mg qd. As well as his vitamins.

Improving

2009-01-28T16:55:00.001-05:00

This morning he seemed more like himself. He responded in his usual ways. He smiled at the aide and the nurse. He tried to talk a little.

His feet were a little less swollen today but still hard to get his shoes on.

We went to church tonight. He responded to the people normally. But during the service he fell asleep and lay right down on the pew. He would wake up and then go back to sleep and lay down again.

VA respite & cruise

2009-01-27T16:53:00.000-05:00

Rick was at the VA respite while I went on a cruise from 012009 to 012709.

I went to pick Rick up from the VA this morning. They said he was sleeping a lot during the day and wandering during the night. His feet were swollen very badly. I hadn’t seen them that swollen before. They have been swollen at times before but not as badly and they would get better. They weren’t swollen when I took him there.

He was sitting in the day room sleeping when I got there about 8 am. I went in to wake him and he wouldn’t look up at me. So I got his hand and helped pull him to his feet. Then I had to tip his face up to look at me. He smiled at me but didn’t seem very excited to see me. So we got the rest of his things and left.

When we got to the center (he slept the whole way there), he got out of the car by himself and walked into the center without me having to guide him. When he saw Debbie, the receptionist, he made his funny sounds like he does when he tries to make a joke. And he laughed. But he barely acted like he recognized me.

This evening when Gerald brought him home he acted more glad to see me.

At the supper table I asked him if he was glad to be home. He said, “Yes!....I am, I am, I am.”

He woke up throughout the night several times with a start. Hopped out of the bed before I could stop him. A couple of times I took him to the bathroom, but most of the time I would just calm him back down and get him back in the bed and he would go back to sleep. I wish he would sleep all night!

Dilantin roller coaster

2009-01-19T16:45:00.002-05:00

Well after Ricks 2 seizures on 010909, Dr Pearce increased Rick’s Dilantin to 4/day. It didn’t seem to take long for Rick to start getting lethargic and lean to the left some. He’s been a zombie most of the past week.

We saw Dr. Pearce on Thursday, 011509. He said to decrease the Dilantin back to 3/day except Tuesday and Friday he should have 4/day. We started that on Friday. We got his Dilantin level drawn Thursday at the VA. It was 25.1. Already it was too high. Dr. Pearce said to keep the Dilantin dosage at 3/day all week, instead of doing the 4/day 2 days a week.

I will plan to get his level drawn again next week sometime.

The girls at Dayspring are working on getting an appt at the seizure clinic at NCBH. This will be good to have doctors who work regularly on this to look at Rick.

Two seizures in the same morning

2009-01-09T16:41:00.003-05:00

4:30 am

Rick woke up very agitated. I took him to the bathroom and then got him back in bed. He started having those little spells. I kept him as still as I could in the bed. This went on for about an hour. He seemed to settle down a little and I thought he was getting better. Then he got agitated again and went into a full blown seizure. He jerked for about 30 seconds and then went into the deep snoring breathing for about 5 minutes. Then he moved a little and went back to sleep breathing deeply but not the heavy snoring. (5:34 am) He would try to get up but go right back to sleep with heavy breathing and some snoring. He had 4 Dilantin yesterday. One at breakfast (7 am) one about 10 am and 2 at supper (7pm)

During the first part of this time when he seemed to be calming down, he started crying and said, “I hurt for her.” Many times he would look at me and smile. At 5:50 am he wet the bed. I got him up to the bathroom and he voided some more. I was able to rig the bed so he could get back in it. Then he went to sleep.

He woke up at go to the bathroom at 8 am. I had to go to a doctor’s appt so Chantel, the HHA, stayed with him. She took him back to bed after he finished in the bathroom. He slept about 15 minutes and got up again. She was able to wash him and get him dressed and get his breakfast. She gave him his morning pills about 8:30 or 9:00 am. He started having his little spells. She called me on my cell phone asking what to do. I told her she could take him to his chair in the living room. So she did that but before he got there he had another full blown seizure, jerking, and heavy breathing with snoring. By the time I got home she had been able to get him up in his chair. He woke up and we tried to get him up to the bedroom. He couldn’t pick his feet up to go up the steps. So we took him back to the couch in the living room. He’s been sleeping there ever since. It is 10:45 now. He woke up at 11:30 and seemed to be pretty normal. He went to the bathroom without trouble walking up the steps.

He has slept but now he is walking around. Rick and Crystal have invited us to go to supper tonight. I think we will try to go.

Seizure like episodes

2009-01-08T16:06:00.001-05:00

This morning Rick woke up with the alarm at 6 am. We didn’t get out of bed until about 6:15. Rick went to the bathroom and then I noticed him having one of those little spells. Just a cough (not really) and a start. I put him back to bed and was able to get myself dressed. Then even in the bed he continued to have those spells. He got restless and very sweaty. He didn’t want to stay in the bed, but I kept him there. He got up once to go to the bathroom again. He said, “I’ve got to get out of here.” So I figured he needed to go. He didn’t do very much, so we went back to bed.

By this time Chantel, home health aide, was here to give him his bath. But that didn’t happen.

Rick stayed this way until 7:45 am. He acted like he needed to get up. I asked him if he needed to go to the bathroom. He said, “Yes.” So we went. He emptied his bladder this time. Then he went back to bed and went to sleep.

Oh, I forgot to say that I gave him his meds at 7 am. So probably they were taking effect by this time.

The entire time he was having these little spells. He would settle down for a short time and then get restless again. This was going on from 6:15 to 7:45 am.

I start work at 11:30 am today so we will see if I can take him to the center later this morning.

Seizure

2009-01-02T16:04:00.001-05:00

Rick had a seizure last night. It was a full blown one. Yesterday morning about 4 am he woke up agitated. He had several of those little episodes. I prayed with him and kept him in the bed and that is all that happened. He finally settled down about 5 am. I didn’t go back to sleep, but he did.

I had been trying to give him his meds at 7 am and 7 pm to keep him on a regular regimen. He was on Dilantin 100 mg bid. So we were having a lat supper after having Christmas with Erin and Robert. I was just finishing up getting dinner ready and had stopped to get Rick’s meds ready. He was standing by my side. I had spoken to him a couple of times telling him I was going to get him something to eat and get his meds.

Then he had the seizure. He sort of doubled over and I was able to grab his arms and lay him down gently on the floor. He seized for about a minute and then fell into the heaving sleep with deep snoring for about 10 minutes. Erin and Robert were here. They helped me get him to bed. They carried him. He would sleep a little bit and then get agitated and kick the covers off. Then he would go back to sleep. This went on for about an hour or so. He finally went to sleep for the night about 9 pm. At 9:30 pm I decided he needed his meds, so I finished mixing these and woke Rick up to give them. He took them without problems and went back to sleep, after a trip to the bathroom. He slept until 4 am. We got up to the bathroom and then he went back to bed. He went on to sleep but I didn’t. I maybe slept 20-30 min just before getting up at 6 am.

I called Dr Pearce today. He said to increase his Dilantin level back up to 3 a day. He said that maybe it will be best to keep his Dilantin level up as long as he doesn’t have the side effects.

Help is on its way

2008-10-15T16:00:00.001-05:00

101408 I got a call from Diane at the VA. She is in the daycare division. She said that they can provide temporary help while I am recouping from the broken arm. She is looking for an agency that will provide help in the morning from 6:30 to 7:30. Yeah!

101508 Dr Pearce called. He said Rick’s Dilantin level is 26.5. We decided to keep him at the same dosage at this time and repeat the level in 3 weeks. He doesn’t seem to have any signs of toxicity at this time.

Broken Arm

2008-10-07T15:57:00.000-05:00

I increased Rick’s Zoloft back up to 50 mg daily on 092608.

I fell Thursday evening (100208) at 5:30 pm and broke my left humerus. This has made it difficult to take care of Rick. It is hard to get him washed and dressed with one hand. Getting his shoes and socks on is hard, as well as buckling his pants. Most of the time I don’t put a belt on him.

Sunday morning, 100508, he had a seizurish spell lasting 15=30 minutes. He has those little jerks several times and was very agitated. I finally got him to lie down with his pants half on and no shirt. He eventually went to sleep and slept while I got dressed. When he woke up he was ok.

Yesterday morning Rick became very resistant. He wouldn’t let me help feed him the last of his cereal and milk. I tried to give him the liquid vitamins and he grabbed my hand and caused the vitamins to spill on the table and floor. I didn’t even try to brush his teeth. He got in the car without difficulty.

This morning when we woke up at 5:50 am he was very anxious. I moved over closer to him in the bed and he calmed down for about 10 minutes. The alarm went off at 6 am and then he was restless for the next 20 minutes having some little spells and a lot of jerking and twitching. This was much more than any normal twitching as you fall asleep. He finally got up to the bathroom and did ok after that.

Then at breakfast he did well until it was time for me to help him with the last of the milk in the bowl. Then he said, “No!” and wouldn’t open his mouth. I tried to get him to drink his juicer and he said “No!” again over several times. I didn’t’ even try to give him his vitamins. When we went to brush teeth he wouldn’t open his mouth. Because I only have one hand I couldn’t hold him still to get the tooth brush in his mouth. Again he got into the car without problems.

Sleepless in Kernersville

2008-09-15T15:55:00.001-05:00

After the good report yesterday, Rick did not sleep well last night. He was up at 1, 2, 3 and then didn’t go back to sleep after that. He would get in the bed and I would cover him up and he would moan and say, “Oh…oh…oh” and then get up again. I tried to sleep in between times but it wasn’t very satisfactory. Finally at 4 or 5 am I just decided not to pay attention to him, to let him wander around, and I went to sleep.

I didn’t wake up until the alarm went off at 6 am. He was right back in the room when he heard the alarm. So he hadn’t fallen asleep in the living room like I thought he would.

I’m sleepy this morning, needless to say. And so is he. He fell asleep in the rocker while I was getting ready.

Things Rick has said.

2008-09-14T15:53:00.001-05:00

Yesterday afternoon I was cutting his fingernails. He grunted like I had hurt him. I asked, “Did I hurt you, Rick?”
“Yes,” he said.
“Oh, I’m sorry.” I said.
“Yes, but it wasn’t so bad.” He said.

Today going up the stairs at church, I was following him.
I said, “I’m behind you. I’m backing you up.”
“I know you are.”

He stayed awake during the sermon except the last 5 minutes.

While praying with him at bed time, he looked at me while I was praying. (Usually he closes his eyes and just about goes to sleep.) As I was praying, he nodded his head at times and when I was through he said,
“I believe you and me…”
“God has big plans for us, doesn’t He?” I said.
“Yes, He does!”

Thank you, Jesus, for praying for me, for loving me, for honoring me and calling me precious.

Lord, my faith falters at times. Please help my unbelief! I know your word is true. These things that Rick says help to boost my faith. I DO BELIEVE THAT YOU ARE HEALING HIM and that you have a PLAN FOR OUR LIVES.

Rick was so resistant today, this morning. He wouldn’t eat his breakfast at home or at church. But he stayed awake during the sermon and seemed to catch some of it. He would chuckle occasionally to something Pastor would say. I don’t’ know the correlation.

Thank you, Lord, for giving me your grace! You are faithful. Help me be faithful. Your mercies are new every morning.

Teach me how to hear you speak to me and give me direction!

Thanks you, Lord. I bless your name!

Agression

2008-08-31T15:50:00.002-05:00

I’m not sure exactly what day this happened. I didn’t write down the date. I just know it was after 081309.

Lynn, RN at the center, called saying that Rick had shown some aggression that day. Gladys took him to the bathroom and he grabbed her arm twisting and squeezing it. It took two others to get him to let go of her. Then he proceeded to follow her around, his face showing anger. It was 30 minutes before he stopped following her.

He didn’t smile much this day. He walked around looking straight ahead.

Sleeping more again

2008-08-13T15:48:00.001-05:00

I got a phone call from Lynn, RN at the center. She said Rick was sleeping in the chair leaning forward and must have fallen out onto the floor. She asked him if he was alright and he laughed.

She said she noticed he’s been sleeping more in the mornings lately, having a worried look on his face and rubbing his hands together more, his knees bouncing. Maybe I need to go back up to the full dose of Zoloft. I will wait a little longer before I do that.

I will get his Dilantin level checked next week. It will be 3 weeks then.

Ups and Downs

2008-08-06T15:44:00.001-05:00

I got a call this morning from Lynn, RN at the center. She said the only things she has noticed different in the last couple of weeks was more knee bounding and rubbing hands together, more stressed.

Today he has been very talkative. He responded to her across the room when she complimented him on his shorts and shirt. He immediately said, “Oh” and looked down at himself, “Thank you.”

We decided to leave things as they are for a while yet, because he may still be adjusting to the new medicine regimen. Decreased Zoloft to 25 mg last Sunday, 072708, and added Exalon Patch this past Sunday, 080308.

I hadn’t realized he wasn’t bouncing his knee anymore until he started doing it again this week. He has been resistant at times but more times than not he has been compliant.

Lynn also told me last week when they gave him his bath they went to get him and took his hand. He pulled it away and said, “No!” They tried again a little while later and he did it again. They were eventually able to give him his bath. He came home last Wednesday, 073008, with a bag of wet clothes. Sometime after his bath he had an accident.

So we will watch to see if this keeps up or if it gets better again.

Back to his normal

2008-08-04T15:40:00.001-05:00

On 080108 Rick had a little spell in the morning.

I reduced Rick’s Zoloft last week, 072708, to 25 mg qd. I didn’t notice much change in him. We started the Exelon Patch yesterday. He didn’t seem to have any nausea or loss of appetite. The only thing I noticed is that he watched the TV a little bit more last night. He laughed at something that happened on it.

Just for the record, Rick has been back to his previous level of functioning since we discovered his high Dilantin level. And reduced the amount he was taking. He is walking without difficulty, standing up straight, participating in conversations, making jokes. He has been much easier to take care of. He still gets resistant at times grabbing hold of things and not letting go. But basically he is back to his pre-toxic state. Praise the Lord!

Todd Bentley Crusade

2008-06-20T15:35:00.000-05:00

Rick and I went to Concord to the Todd Bentley (This is the evangelist holding the Lakeland,FL Revival.) meeting there last night with Kristin Paarsons and Alicia Kalaczuk. It was a good meeting and I was glad to hear his testimony. It brought a little more credibility to his ministry.

We has trouble getting into the arena due to all the traffic and they were telling us they were turning people away. We finally parked our car on the side of the road and walked the rest of the way.

When we got there they wouldn’t let us in. Erin was already inside and had seats saved for us. So she came and was able to get Rick and I in. They would not let Kristin and Alicia in. That was hard because Kristin had had been so good to drive us down. I felt really bad that they couldn’t get in.

Rick was prayed for several times. Once Todd B”ently laidhandsonhim and prayed for him.This was in the prayer line and wasn’t concerted prayer for Rick. There wasn’t any definite outward sign that Rick was healed.

It was 12:30 am when we left there and 2:20 before I got in bed. A very late night. Those from Columbia, SC were going to be even later.

Not much sleep

2008-06-18T15:32:00.001-05:00

Last night Rick was great. Very responsive. Making jokes, laughing. He ate his peanut butter and jelly sandwich in the car without a problem. We went to a meeting and he interacted with the people there. We came home and ate a better supper. He went to bed without difficulty.

But he was up in about an hour. Then he was up at 1, 2, and 3 am. So I decided to give him a Xanax. I kept putting it off because I thought he would go on to sleep and stay there. But finally I decided I needed to sleep so I gave him one. He slept the rest of the night.

He woke up this morning with the alarm at 6 am. He isn’t as alert today as yesterday. He seems to be out of it. A blank stare, not responding much. I got him dressed without difficulty and he ate his breakfast well. Just no laughing and joking or actual recognition in his eyes. I’m not sure if the Xanax did that? If that is the case, I don’t want to give it to him again. Maybe I need to c\decrease it also. I can break the pill in half. It is a 1 mg tablet.

I got a note from Lynn, RN at the center today:

Hello Joyce,

Wanted to let you know Rick had a very good day! He ate 75% of his lunch and has been smiling and talkative.

Thanks,

Lynn.

Improving

2008-06-17T15:27:00.000-05:00

Rick seemed to be better last night. He ate well. He smiled at me. He slept most of the night with getting up only once to go to the BR. He slept until almost 7 am. I had gotten up, washed my hair, gotten dressed and was drying my hair when he got up. I said “Good Morning” and he said, “Good Morning” to me. After he finished on the toilet I told him I loved him and kissed him. He kissed me back and put his arms around me.

He was very compliant through washing, getting dressed and eating breakfast. After we prayed before eating I kissed him like I usually do. He again put his arms around my neck and hugged me.

This morning when I took him to the center, he walked in without any problems. I was told that he didn’t get his beard trimmed yesterday because he wouldn’t let them.

I spoke to Lynn, RN at the center. She said she has not given him any more Xanax since that one time she had called me about. That is good! She said Rick had a very good day yesterday and is doing good today also. She said she asked him this morning, “How are you today?” He answered, “I’m here, aren’t I?” and then laughed.

I’m glad to see this improvement. Yesterday and today he only had 50mg of Zoloft. Could that be the difference? Is God healing him?

Resistant

2008-06-16T22:43:00.001-05:00

061608

Rick has been getting very resistant to my direction lately. After coming home from the hospice home, Friday, 060608, Rick seemed to be the best he’d been in a long time. He is walking upright and more alert. He ate everything on his plate without assistance. He was like this all weekend. He ate well Saturday and Sunday.

Monday, 060908, when I got him dressed to go to the center he did fine until after I was dressed. When it was time for us to go eat breakfast, he wouldn’t sit down in the chair. I couldn’t force him down and he wouldn’t eat his breakfast. Once he grabbed my arms and wouldn’t let me move. I asked him, “Rick, why are you acting like this?” He said, “Because you!” And that is all he could get out.

When we went down the stairs to get into the car, he wouldn’t get in. He finally got one leg in but held on to the top of the car and the door to keep from sitting down. I tried closing the door some to give him the suggestion that he needed to get in but it didn’t work. After much pushing and shoving he finally got in and I shut the door. Then I got in and leaned over him to get the seatbelt. He grabbed it and wouldn’t let me hook it. Little by little I was able to pull it long enough to hook. Then he grabbed my arm and wouldn’t let go. I couldn’t get the keys in the ignition to start the car. I gave him my water bottle in place of my arm and that worked. We were able to get on the road. But every time I tried to get my bottle to get a drink he wouldn’t give it to me. Finally, when we were about 5 minutes from the center, he let me have the bottle. That was when I knew he was relaxing. He walked in to the center without a problem. I couldn’t believe it.

I got a call from Lynn, RN, at the center, mid afternoon saying he’d been restless and agitated most of the day. Wouldn’t eat lunch. She gave him a Xanax and he calmed down.

So he has been like that ever since. If I give him a Xanax he gets manageable. I really don’t understand what is happening.

I have been cutting back on the Xanax these last couple of days. He was down to 2 on Friday. Saturday he had one mid day. (We were at Fairy Stone) Sunday I can’t remember giving him one. He did pretty well. We went to Don Juan’s for lunch and he ate very well. He started getting agitated in the afternoon about 3:30. We took about a half hour walk. He was exhausted when we got back. I gave him some tea and then he lay on the couch and went to sleep. When he woke up he got up and started roaming the house. He sat beside me trying to talk to me.” I’m a dorf.” He said. I told him he wasn’t, of course. I told him I loved him. He said, “No, you don’t’.” I couldn’t’ get him to kiss me.

He finally got tired about 8:30 pm and I put him to bed. He woke up before I got to bed. I put him back in bed a couple of times before I finally crawled in about 10:30 pm.

I didn’t sleep too well. I must have had too much tea, not necessarily due to Rick being up. He was up several times. This morning he did fairly well. I did not give him a Xanax.

While I was praying last night I started thinking that maybe there could be a relationship to the increase in his Zoloft and this resistance. The first recording I have about his resistance was the end of April. We increased the Zoloft from 50mg to 75 mg the first part of April. So now I’m thinking about reducing it to the 50 mg again and maybe even going off it. (I read about the side effects of Zoloft and aggressiveness, irritability and hostility are listed.)

I tried to contact Dr. Pearce this morning but he is on vacation. I want to run it by Rich but haven’t been able to get up with him yet. I only gave Rick 50 mg this morning. We will see what happens.

Hospice Respite

2008-06-12T22:23:00.002-05:00

We were able to use the hospice home for respite for Rick, while I went on vacation with Cheryl and Jeremy and kids to Massanutten. He was there May 30 through June 6. This was a real blessing. Bev came down and stayed there with him for the first few days. It was such a nice place it was almost like a vacation.

But since we had gone down on the amount of Dilantin he was getting, the doctor there saw his improvement and decided that Rick didn't qualify for hospice anymore. So the next week, 061208, the nurse came out for the discharge visit.

I'm glad Rick is better, just miss the wonderful services of hospice.

God has a plan for our lives!

2008-05-20T22:38:00.002-05:00

While riding home from taking Rick to the center, I was seeking to be in God’s presence. Since we are to call Him Abba Father or Daddy, I tried imagining that I was curled up in His lap. I asked Him, “Daddy, why haven’t you given Rick his healing?”

“Because I have better things planned for you and him.”

This is hard for me to accept. Did God, Abba Father, really say that to me?

Lord, I want to hear your voice. I want to be sure it is you, not just my imagination. Teach me to hear you. I am your sheep and I want to hear and know your voice.

Yesterday Rick finally had a good BM. I had been concerned that he was not having good BM’s. Then the past few times he has stayed on the toilet for long periods of time with only small amounts coming out. A couple of times the stool was big and hard and there was bright blood on the toilet paper. So Saturday night I gave him 2 senna plus. Then again on Sunday night and yesterday morning. Last night when he came home from the center, Debbie took him to the BR. Apparently he got seated crooked and ended up with stool where it didn’t belong…on the outside of the toilet and on the floor. Poor Debbie! She cleaned it up.

Rick has been better since I have decreased his Dilantin. He stayed awake all the way into the center today. He is walking normally again and eating better…feeding himself. He does better at home than in a crowd. The commotion seems to distract him. He is still sleeping most of the night with only one potty break. That is good for me. He3hasn’thad any of those anxious spells. He still shakes his legs, chatters he teeth and has muscle jerks. He is still hesitant to turn, step forward sit down. All of these things he needs firm direction on.

Hospice 2

2008-05-16T22:13:00.003-05:00

Hospice came yesterday, 051508. Judy Moore, RN and Julie, SW. Judy did blood work for Dilantin level.

Rick has been very unsteady on his feet, leaning to the right when walking and shuffling. Sleeping most of the time.

Last night I got a call from the Hospice Triage nurse, Freda, saying the Dilantin level was 44.3 and this is toxic and she needs to report it to Dr. Pearce. I called Dr Pearce and he said to decrease the amount of Dilantin Rick is taking from 4 per day to 3 per day. This could be why Rick is so unstable and sleeping all day. We are expecting changes for the better.

I called Lynn, RN, at the center. She said Rick was sitting up straighter and he talked to her and followed her with his eyes. She said he was better today.

Hospice

2008-05-15T12:09:00.001-05:00

We had our first visit from the Hospice nurse, Judy, and social worker, Julie, this morning. They said that the nurse who went to evaluate Rick at the Center on Friday, found him sleeping and could not arouse him. That is probably why he was accepted into the program. Jean Small, director fo the Center, said that shortly after the nurse left the center Friday, Rick was up dancing with her.

Julie is getting a wheelchair, bedside commode, and shower seat for us. They are being delivered this afternoon. Now that is fast work. They will provide a hospital bed if and when we need it. They discussed making a ramp for our front door steps. They have people who volunteer to do this.

We have requested to use the Hospice Home for while we go on vacation. They provide respite for 5 days. Anything over that we have to pay for. It is $180 a day, but is based on income. I feel we will not qualify for a reduction.

I spoke to Jean Small today and told her that I had told the girls that I felt that, baring a miracle and we are still believing for that, Rick probably has only 1-2 years yet. Jean just shook her head and said it was probably less than that. Hospice requirement for admission to their program is 6 months. Dr Pearce had to sign the papers indicating that for them to even evaluate Rick. They said that doesn’t mean that he will only live 6 months and that they have had people who have been around for 2 years after admission. Anyway, these are all new thoughts for all of us.

I asked Jean what stage of Alzheimer’s she felt Rick was in. A few months ago she said she thought he was in the lower part of stage 3. But today she said he was in stage 4. I looked it up on the list of the stages and this is what it says:

Terminal Stage – 1 to 3 years

Symptoms
• Can’t recognize family or image of self in mirror
• Loses weight even wth good diet
• Little capacity for self care.
• Can’t communicate with words.
• May put everything in mouth or touch everything
• Can’t control bowels, bladder.
• May have seizures, experience difficulty with swallowing, skin infections.

Examples
• Looks in mirror and talks to own image.
• Needs help with bathing, dressing, eating and toileting.
• May groan, scream or make grunting sounds.
• May try to suck on everything.
• Sleeps more.

I believe Rick still recognizes all of us. And I think he is still recognizing himself in the mirror. He hasn’t lost weight yet. But he isn’t gaining anything either. He definitely needs assistance with his care. He has not been able to communicate for a long time. He is not putting things in his mouth or touching everything. He dose see little things on the floor and picks them up and holds them between his thumb and finger. He is still continent. But if I miss his cues, then he has been incontinent. This has happened 2 times at the center and once here at home.

So now you have it. The most up to date report on Rick’s condition and the assistance that we are getting.

Again, I am so thankful to God for His provision. The Hospice services, I believe, are another way God is letting me know that He is taking care of me and Rick. I give Him all the glory.

To God Be The Glory

2008-05-13T08:42:00.001-05:00

These last few weeks have been rather difficult. The change in Rick has brought about an urgency to find a care facility for him. The girls are concerned about my health and ability to stand up under the stress of caring for him. And I believe they are not able to care for him if I should need to be away for my job.

So we went looking at assisted living and nursing facilities last Thursday. Neither situation was what I wanted but would consent to it if need be. I had spoken to Jean Small, the director of the Adult Day Care Center that Rick goes to daily and she suggested we check into the Palliative care options that Hospice has to offer. So I placed a call to Hospice. They needed a referral from Dr Pearce, who gave it readily. The social worker came out last Thursday and the nurse went to see Rick at the center on Friday. Monday I received a call saying that Rick has been accepted into the hospice palliative care program. Praise the Lord!

This is what I am getting through this:

The nurse will see Rick regularly. They will do much of the assessments so that I don't even need to take him to the doctor. She is coming Thursday morning early before I take him to the center for her first visit. I was telling her about his jerking and she asked if it was time to do a dilantin level. I told her I thought it was, so she is calling Dr. Pearce to get his ok for her to draw his blood for the level. That is wonderful. And I don't get a bill for it. They will provide his meds for him, too, at no cost to me.

They bill Rick's Medicare for their services. There is a special part of Medicare for hospice services. They won't provide any service for us that is not covered by Medicare, unless they tell me first and I decide that I want to pay for it out of my pocket.
We may see about putting him into the hospice hospital, Kate B Reynolds Hospice Home,while we go on vacation. They do offer respite for care givers. (Cheryl's family and I are going to Massenutten, VA for the first week in June.) I don't know exactly how that works, but I would like to find out. It will be valuable for when I have to go to TX for my work. Cheryl says she doesn't think she can handle Rick like he is now. And I am pretty sure that is the case. It is hard for daughters to help their father with his personal needs. This will allow me to get a good night's sleep for a week or so and then I will be refreshed and ready to get back to caring for him. Even this is covered by hospice Medicare.
I have access to CNA services to assist with personal care. This isn't someone to come and stay with him for several hours a day. Just to come in and give the bath, assist with dressing, or whatever is needed. This may be helpful in the future.
There is a social worker to help with emotional support and other challenges that might come up. He/she knows what agencies might be helpful for our needs.
There would be a chaplain available to provide spiritual support. I can request a chaplain from my denomination.
There is a volunteer who may provide companionship, respite for family members, assistance with transportation and errands, and other support as needed.
They have grief counselors for me and anyone else in the family that needs it.
And Hospice is the first to call in case of an emergency, instead of 911. The hospice people will already know Rick's condition and will be much better able to decide what needs to be done for him.
All these people who work with Rick will meet regularly, I think I was told weekly, to discuss Rick's situation and come up with a plan for his care.
The way I see it is that I will have a host of people in the know about Alzheimer's and community resources to help me make the best decisions for Rick's care. I already have a sense of relief, just knowing that I will have these resources.
I do hope I don't have to put him in a facility. I really want to keep him at home if at all possible.
The girls want me to come up with a plan as to what constitutes the time that I can't care for him anymore and need to put him in a nursing home. I am thinking about this and hope to come up with something soon. They have been a big help and support to me. I am so blessed.
Thank you all for your prayers and love and support. Again, I am so blessed to have such a wonderful family, immediate and extended, who love and care for me.
It is my desire that God will be glorified through this situation. The fact that Rick has been accepted into Hospice services is one more way that God is saying, “I’m taking care of you and Rick. Continue to trust Me.” PRAISE HIS NAME!

Update on Rick

2008-04-29T09:00:00.001-05:00

It has been a long time since I have posted on Rick’s blog. There hasn’t been much to talk about. He has been holding his own pretty much. But the last couple of weeks have brought some changes that are notable.

Saturday, 041908, all 3 grandchildren were here and we spent the day outside. It was my goal to get some things done in the yard. It was a beautiful day and Mara and Emma played very nicely in the back yard together. Jake loved being outside. He walked around exploring everything, trying to keep up with the girls. Rick enjoyed being outside too. He likes to walk around the perimeter of the fence with Kasee, our chocolate lab. This has been a means of exercise for him. This day, though, he got bent over with his torso bent at the waist, parallel to the ground and his steps were short and shuffling and fast. This caused him to be unbalanced and he ended up falling at least once. He didn’t seem to know how to get back up. I had to put my foot in front of his foot and pull him up. After he got started up, he figured out what to do and was able to get his feet under him again. But he went right back to that awkward walking. He kept it up for a while and then I realized that he didn’t know how to stop. So I got a folding chair and helped him sit down on it. He immediately went to sleep, slumping over his knees. After a while I heard the girls shout, “Papa, Papa, Are you alright.” He had fallen out of the chair.

This was all very strange to me.

Sunday, he was better. He walked upright and was socialable with people at church. He seemed to be back to normal the rest of the week.

Friday, I picked him up from the center because we were going to Tamara’s church for their Good Friday service. He was leaning to the left very noticeably. He sat that way as well. I took him to a restaurant to eat before going to church and he didn’t respond well. He leaned to the left in the booth. I ended up having to feed him most of his meal.

I worked out in the yard again on Saturday, 042608. We went to Lowe’s first to get things that I needed. It was very hard to look around because he wouldn’t steer easily. I had to pull him to get him to walk with me. And then when I needed to stop to look at things, he would keep walking. That was very tiring. When we got home I let him sit down in his chair and he slept for the first of my time working outside. When he was outside, he had an accident in his pants. I guess I was too busy working to recognize his cues.

Through all this time, he has been very difficult to direct. When I try to direct him in walking, he pushes back so that I have to push him to get him to go where he needs to go. To get him to sit down is very difficult. It used to be that a light touch on his stomach would do it. But now he just pushes back and won’t bend his knees to sit down. Sometimes I have to get very forceful to get him to sit down at the table to eat or on the toilet. When taking off his jacket or shirt he grabs the sleeve and won’t let go of it. It is like he is afraid that he is dropping it. But the more I try to get it off the stronger he holds onto it.

I am having to learn new techniques for dealing with this kind of behavior. I haven’t learned them too well yet. I still want things to happen when I’m ready to do them. But I need to stop pushing him and try again later. That doesn’t fit into my schedule. So I get frustrated.

This is especially so in the night when he gets up and needs to go to the bathroom. I have gotten used to getting up and helping him sit down and then I go back to bed. But now he is resisting sitting down and I get really frustrated. This morning, early, he was up and I went to help him sit down and he resisted. He got part of the way down and wouldn’t go the rest of the way. He is soooo strong. His legs can keep him from sitting down. Also, he puts his hand out to hold onto the back of the toilet to keep himself from sitting down. I have absolutely no patience in the early hours of the morning. I just want to get back to bed to sleep. So this morning, I did manage to get him to sit down with much pushing. I went back to bed. He didn’t come to bed right away so I looked and he was standing up in front of the toilet, bent completely over at the waist with his hands touching the floor. I got up to help him pull up his pants and they were wet. I don’t know what happened, because he was sitting on the toilet when I left him. The only thing I can figure is he was still in his resistant mode and got back up and then voided.

So I lay in bed wondering how I am going to handle these new behaviors. How am I going to deal with incontinence? I don’t look forward to that. How am I going to deal with him not being able to go up and down the steps? Our house is a split level. There is no access to our house that doesn’t have stairs. The front entrance has the shortest steps, about 5 or 6. Then in the house there are 3 steps up from the living room/kitchen area to the bedroom area and bathrooms. This will pose a problem that I have not figured out yet.

I know Cheryl and Tamara think I should consider assisted living/nursing home for him. I don’t want to have to do that. I know I’m not ready for that at this time. And of course financially it will be tough.

On the brighter side, Rick still remembers people he has known in the past. The other week we went to Tamara’s school for their school musical and met a PA that Rick knew when he was in PA school. Rick really seemed to know who he was. Of course, couldn’t say his name. But he was happy to see him. Rick still tries to make jokes with people and laughs. He still eats pretty well. Sometimes I have to help him finish up his meal.

I’m wondering if background noise affects his response level. Like television, the radio, the grandchildren’s noise. I’m certainly not ready to stop the grandchildren from coming over. He (and I) will just have to deal with it.

Well, thanks for listening. I don’t like to be a complainer. And I’m not really complaining, just relating what is going on. God is my strength. He still has a plan for my life and Rick’s. We are just waiting to see what it is.

March 2, 2008

2008-03-02T22:05:00.001-05:00

We went to see Erin this weekend. Her church was celebrating their one year anniversary with a “Signs and Wonders Conference.” Wayne Neal was the guest speaker. Bro Wayne is the evangelist we had at Faith Assembly several years ago for revival that lasted 18 months. It was very good to see him again.

But the best thing was the move of the Holy Spirit that was experienced. Each night God’s Spirit moved on people. Rick and I were prayed for each service. Today’s service was really special. During the altar call, many laid hands on Rick and prayed, believing for his healing. Many felt that God is not through with Rick yet and that he is going to be healed.

We went home to Erin’s for lunch. Her roommate, Jessica, Jessica’s sister, Hannah, and Erin’s boyfriend Robert were there to share our meal. After dinner, Rick and I were informed that they were going to pray for him. They laid hands on him, anointed him with oil, and prayed for him for nearly an hour. They were very tenacious. They wouldn’t give up. There was a sense of God’s presence there, almost more so than at church. Rick stood quietly receiving it all. He did respond throughout the time with thanks and praise to God and agreeing with us.

I came away from this weekend with a renewed sense that God is going to heal Rick. That God has a plan for his life and it is a plan for good, to prosper him and to give him a future.

Hannah gave me a prophecy saying that she saw a box shaped like a heart coming up out of the depths of the ocean. This box represented my hopes and dreams that had been dashed and buried with the diagnosis of Alzheimer’s. But the coming out of the ocean indicated that they are being restored and will come to pass.

I believe that God’s word is true and I’m standing on His promises. I know that in His timing, He will bring about Rich’s healing. I believe that God is not finished with Rick! I can’t wait to see what He is going to do with and through Rick. Praise the Lord

Watching Jake Play

2008-01-29T21:50:00.000-05:00

Jacob Reese Fisher

2008-01-19T22:04:00.000-05:00

It looks like Jake is going to be a pianist.

Snow, snow, snow, snow, snow

2008-01-19T22:02:00.000-05:00

We finally got some snow today. It snowed all afternoon and
this is all we have to show for it. But it is pretty.

This is our back yard.

Christmas Day 2007

2008-01-01T22:30:00.000-05:00

We started at our house with Erin, Rick and myself opening our stockings.

Rick didn't know what to do with his. We had to get out the presents and actually open them for him.

Then we went over to Cheryl and Jeremy's to enjoy Christmas with them.
Jake really liked his new rocking horse.

Emma is enjoying one of her new toys.

2008-01-01T22:29:00.000-05:00

Relaxing after all the excitment of opening presents.

Erin and Joyce

2008-01-01T22:28:00.000-05:00

Christmas dinner table.

Goodie table

Enjoying Christmas Dinner

2008-01-01T22:27:00.000-05:00

Christmas at Kessler's

2008-01-01T22:26:00.000-05:00

Then we had Christmas with Tamara and Cade at their house on Friday, December 28th. So we had an extended Christmas.

In their dining room after dinner, ready to dive into presents.

Tamara, Emma, Mara, Cade

Erin thought all she was getting was tissue paper.

2008-01-01T22:25:00.000-05:00

We all got hand painted frames with a picture of Mara. Mara did the painting.

Emma and Mara opening one of Emma's gifts

Mara's night gown

Cade opening his gift from Mara.

Christmas Eve 2007

2008-01-01T22:04:00.000-05:00

Erin and Rick

Judy and Al came for dinner. Everyone was working on a game I had called "Name that Christmas Tune" It was a fun time.

Timothy and Jeremy

Jake has just started walking. He is 13 months.

More Christmas Eve 2007

2008-01-01T22:03:00.000-05:00

Emma with a game she got from her Virginia grandparents. She had just gotten back from their house and their Christmas time togehter.

Timothy really enjoyed playing with Jake!

Al taking a snooze.

Rick also sawing logs.

Christmas Eve 2007 continued

2008-01-01T22:02:00.000-05:00

Timothy with Jake and Judy with Emma.

Jeremy is working on his camera.

Judy reading to Emma. She put Emma to sleep.

Merry Christmas!

2007-12-12T09:19:00.000-05:00

This is Rick on a snowmobile in Vermont February 2007. We made a trip up to see his sister, Bev, hoping to give Rick a good time in the snow. Well, he did have a good time but I ended up with a sprained knee. I tore 2 ligaments in my knee and was on crutches from day one. Bev, her son, Randy, and Cousin Candi, took over where I left off. Well, since they are Vermonter’s it does make more sense that they drive the snowmobile, doesn’t it? Our first trip out on the snowmobile with me driving was not good. I tipped the machine over and tried to catch it with my leg. It didn’t work! So I watched the rest of the week.

The picture looks like Rick is driving, but he isn’t. Bev stepped off the snowmobile to take the picture. Isn’t it beautiful?

Rick is holding his own, it seems. He had two more seizures this year, one in April and one in November, but he seems to be functioning at the same level. He needs assistance with bathing, dressing and toileting. He can’t speak a complete sentence most of the time. Once in a while he does get out the entire sentence. That is always a celebrated occasion. He still loves to be with people. He seems to be more alert when he is with others. He laughs and plays, trying to make a joke. You just have to laugh with him. He continues to attend the Adult Day Center in Winston Salem, Monday through Friday. This is a real blessing for me and him. I can work without worrying about him and he gets the stimulation he needs.

I continue to work for the company that makes Betaseron. I am now a phone nurse and not a field nurse. This was a traumatic transfer for me but as always, hind sight is better than foresight. Now I can see that God knew the future and worked things out for me to have the job that I could handle best and still be able to take care of Rick. Praise the Lord! I sit at the phone taking incoming calls and making follow up calls to the patients who are on Betaseorn. It is a much less stressful job. I am so glad that God has a plan and it’s a plan for good.

We are enjoying our home in Kernersville. It is so good to be only 10 min away from church. We have a wonderful support system there. Cheryl is 1.8 miles away from us. Tamara is in Winston Salem, about 20 minutes away. Erin moved to Columbia, SC the first of the year. So she is the farthest away. We have 3 grandchildren now. Cheryl has our only boy. He turned a year in November. He is special. Erin is still single.

We are so thankful for our family and our friends. We love each of you.

May God bless you richly this Christmas season and through the New Year.

Rick & Joyce