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Symptoms

Yesterday our daughter Jesse called to coordinate plans for a couple of trips to see her and her family. Kate had just taken a shower and was getting dressed. I put the phone on speaker and walked back to her room. I told her it was Jesse on the phone. She said, “”Hi, Jesse.” Then she waved me out so that she could finish dressing. When she was ready, she walked by me as I was talking. Then she went outside to pull leaves. Before her Alzheimer’s, she would never have done this. She would have eagerly gotten to the phone and enjoyed a conversation with her daughter

I called Kate’s doctor’s office shortly after 9:00 this morning. I left a message for the nurse. Her doctor was out of the office today. They said the nurse would get back to me. I then called the agency that provides the sitter who was to have been here at noon. I let them know that we might have to go to a doctor’s appointment and that we might not need a sitter. They understood.

After getting up a second time this morning, Kate got dressed to go out for her muffin. She was moving very slowly and acted the same way she had been a good bit of the past 3 days, but we went ahead to Panera. We stayed for about an hour. When we got home, she went back to bed. At noon, I asked if she felt like eating. She said no. This was the first time she had not wanted to eat at mealtime during her illness. Before I ran out to get a sandwich, I received a call from the doctor’s nurse saying we could see another doctor at 1:30. I told her we would be there

Kate got up when I told her we had an appointment, but she was moving very slowly, once again walking as though she was very unsure of herself. They took us in right away and took her vital signs. Everything looked fine. The doctor asked for me to give an account of what had been going on. I did. She said they wanted to draw blood and get a urine sample and that the results would be available tomorrow

When we left, Kate seemed much better. We stopped by Panera to get her a sandwich and stayed an hour. As we reached the house, she asked, “What can I do?” I told her that she could work in the yard. Then she asked me, “Where?” I told her she could start in the back if she wanted to. Then we both came inside a few minutes. Then she asked, “Now what?” Before I could answer, she asked, “”My room or the bedroom?” I assumed she had decided to work on her iPad inside.” I told her that I thought she had said she wanted to work outside. She said, “”I would like to.” She was outside for about an hour before I went out to see if she wanted to get ready for dinner. She said she was just about to come inside anyway. When she is ready, we will go to Chalupas for dinner.

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Doctor’s Visit/Medications

This morning at 9:30 a.m. Kate had her annual physical. This was the second visit with her new doctor. I was happy but not surprised that her weight was almost exactly the same this time as before. In fact, it may have been a pound or two less than last time.

The first part of the visit was with the social worker. This was also a person new to the practice. She had recently graduated from college but had interned with the practice her last semester. I was quite impressed with her. The interview reminded me of the one Kate had recently with the nurse engaged by our insurance company to determine her eligibility for in-home care. She had such a hard time on the questions related to math that she asked the social worker to move on, and she did. She had an especially difficult time subtracting 23 from 100. She finally guessed 97.

The visit with her doctor went well. He asked a lot of questions related to what she could and couldn’t do around the house, health care power of attorney, living wills, DNR instructions, whether at this stage she wanted to go through any treatment that might be required if a mammogram or colonoscopy identified a problem. He explained DNR, and Kate said at this point, she would want to be resuscitated. I would have said the same. We are to get back to him regarding mammograms and colonoscopies. I plan to tell him I don’t see a need to do any more.

Our decisions on the DNR as well as mammograms and colonoscopies represent new markers on her journey. I believe she has too much quality of life ahead of her to have a DNR. On the other hand, if she were diagnosed with cancer, I would not want her to have to undergo surgeries, chemo, or radiation

We also discussed the donepezil (Aricept) she is taking and whether or not we might want to discontinue it. He asked if we thought it had worked. I told him I wasn’t sure because I don’t know how she would have been without it. I also said that what I know is that the progression of her Alzheimer’s has been very gradual. He pointed out that there is some evidence that discontinuing is followed by a more significant deterioration. We are going to stick with it.

This discussion about the donepezil came about because one of its side effects is diarrhea. Kate has been taking 1 tablet of loperamide each night as well as 1 tablet on Sunday and Wednesday of each week. That seems to be the perfect balance to prevent diarrhea and avoid constipation.

I had completed an information sheet before the appointment. It included the kinds of things that she does or doesn’t do around the house like laundry, house cleaning, bathing herself, dressing herself, etc. It also asked about any in-home care. He asked me to explain. I told him that I had engaged Daybreak to provide someone to stay with Kate when I needed to be gone from the house. He wanted to know when that had started. I told him September 6. I was interested that Kate didn’t respond to this discussion in any way. I wonder if she understood or whether she just accepted without thinking it indicated a problem at all. I suspect she didn’t process it at all. There are times like that when she just tunes out and lets me take care of things.

We also talked about her salivation problem. He asked a lot of questions. We (I) described the symptoms as clearly as I could. I had already talked with him by phone yesterday afternoon. We decided then for him to make a referral to a gastroenterologist. We will hear soon about an appointment.

He probed for other problems. We just didn’t have any. Once again, I feel we have been fortunate.

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Where does the time go?

I meant to check in before now and was surprised to see that my last entry was a week ago tomorrow. It has been a pretty busy week and a good one. Let’s see if I can hit the highlights. On Monday we went to see a neurologist, Kate’s regular doctor had made the referral after I had expressed interest in getting an opinion of a neurologist. As I have expressed earlier I hadn’t felt a special need for a neurologist until recently.

I liked the doctor, but I still feel unsure of our present need for him. He said that Kate was already taking the appropriate medication for someone with Alzheimer’s. I also was honest with him about my being unsure we needed him. He understood. We decided to start with an MRI so that he can see get a better grasp of her condition. He asked a lot of questions of Kate and of me to understand as much as he can, but I fully expected that he would want to avail himself of more diagnostic technology. Yesterday afternoon, we went in for the MRI. I suspect the results will be sent to the doctor early this week.

On Monday night we went to our music club meeting. Several voice students at UT provided the music for the evening. They were outstanding. Kate loved it. Two of the singers were people we had heard at Casa Bella.

On Tuesday we had lunch with an old TCU friend and housemate of mine who lives in Nashville. We have seen him on a couple of occasions when we have been in the area. This was another good experience for Kate and me.

For some reason I got all mixed up on Wednesday. That is the day for us to attend the Shepherd’s Center. I forgot and went to the Y as has been my custom. When I got home Kate was working in the yard. We have been to Lowe’s for plants three days this week; so she has been back in the yard. That, too, is good for Kate. I am happy she has this. We headed out to lunch about 11:30. When we had almost reached the restaurant, I remembered the Shepherd’s Center and that I had signed up for lunch. It was a little early and we had already missed our classes. Knowing Kate was hungry, I took her back to Panera’s for a muffin. From there we attended the lunch.

Thursday I had a morning meeting at United Way, a lunch meeting at church, and an evening reception and auction for the foundation. I felt bad about being away from Kate so much, but she didn’t seem to mind at all. A funny thing happened when I got home that night. I arrived home early, about 8:20. She was sitting in the family room with the TV on and working on her iPad. She said she had been sleepy but had stayed up. Remembering that on one other occasion, she had stayed up because she thought I had asked her to do so, I asked, “Did you stay up because I told you to?” She said, Yes. You told me not to go to bed until you got home.” Very shortly thereafter, she went to bed. She wanted me to come to bed as well, but it was too early for me. I delayed a little. At one point, she was disgruntled because I was taking so long. She said, “I think I’ll go back to Fort Worth and marry Rick Wainwright, (pause) but he’s dead.” Rick was her high school sweetheart. She didn’t sound irritated with me as she said it. She was just needling me.

That makes me think about humor in our relationship. It has become a regular part of our daily conversations. She likes to kid me about being vague in just about everything I say (or so it often seems to me). I have to be very clear, or she won’t follow me. It often happens when we are talking about someone or some event or place. I will make a follow-up statement like, “I haven’t seen her in a while,” or “I wonder who’ll be there?” Most people would understand that I was referring to the person or the event we were just talking about, but she usually doesn’t. I will then say, “I guess I wasn’t as clear as I could be.” She will roll her eyes. Then I say, “I will be clear next time.” She will say one of several different things. “We’ll see,” or “You’ll never learn.”

I can’t think of other examples at the moment, but we have a lot of interplay like this in which she is criticizing me for not remember or doing the right thing. By the way, she is often correct. I believe that it is because so much of her behavior is normal it elicits a normal response from me. In time it may get easier though I am not sure.

On a completely different note, I continue to observe that she is depending on me more for things that not long ago she would not have done. The examples I can think of involve clothes. When we get ready to go someplace, especially if it requires her to look nice, she asks, “What will (or can) I wear?” Then I will show her. I try to give her a choice of 1-3 things. I have learned why she has gravitated to wearing my socks. She has forgotten where she keeps her own. Now she just says, “I need some socks.” I go to her drawer and get them. Another example occurred this week when I took her to Target to buy some clothes for her to wear when she is working in the yard. She was quite comfortable with my picking out things for her to try on. After the first pair of pants did not fit, I brought her several others until we got the right size. What I did was move from the women’s to the men’s department. I got her 4 pair of slacks with a 40″ waist. I didn’t tell her. She would be horrified as she was at the neurologist’s office on Monday when she weighed in at 171. She had forgotten that she had been at 174 at her last appointment Dr. Reasoner.

The last point I will make today will be short. We have had a good week, one that had followed a couple of good weeks before. I feel good about this as I was very discouraged after our cruise in January. I thought our good times might be over. She is more dependent now and that saddens me; however, we can still have fun together.

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Kate’s Latest Appointment With Her Doctor

Yesterday Kate had her annual physical. In advance of that, I had written a lengthy letter asking a number of questions and updating the doctor about Kate ’s condition. It turned out that my letter had not gotten to the doctor even though I had mailed it a week ago. I was able to chat briefly with her just before she went in to see the doctor. In addition to letting her know the questions for which I wanted answers, we talked about my being included with Kate and the doctor during every visit. We accomplished this by the doctor’s bringing me in the examination room and telling Kate that she thought it might be good to have another person who could her what was said. Kate agreed. Now I expect this to be a regular part of all future visits.

Before joining Kate, the doctor and I talked about the possibility of Kate‘s seeing a neurologist. She said that would be fine. She told me that not many of their patients see a neurologist. She thought that was because they have a much larger practice of dementia patients. Most people with dementia go to a regular family practice physician or internist, and they are not as familiar with the treatment of dementia. That made sense to me. I did explain that I thought it might be a good idea just to check in with one and not set up routine appointments with one. She asked how Kate felt about it when we were together. Kate looked to me and I gave my nod of approval. We didn’t leave with a referral, but if I don’t hear from the doctor by early next week, I will be in touch to arrange it.

We talked about Kate‘s PremPro and that her insurance company no longer includes it in their formulary. Dr. Reasoner had talked with them, and they agreed to continue it. We also talked about trying to wean Kate off of it. Dr. Reasoner said that would take 4-6 months. We are going to start that right away by her taking 1 pill every other day rather than every day. I’ll start that tomorrow.

We talked about Kate‘s being bored. Dr. Reasoner asked if she felt depressed, Kate said no, something that did not surprise me. She agreed that she is bored. We talked about things she could do to relieve the boredom. Dr. Reasoner encouraged walking, suggesting that would also be good for weight control. She weighed in at 174. That is 8 pounds heavier than six months ago. The doctor mentioned the Shepherd’s Center. I told her we knew people there and would check it out. I had already mentioned to one of them that I was thinking of doing that.

On the way home, I asked Kate if she would be interested in exploring a support group. She expressed an interest, and I am going to pursue this with the social worker. Kate said she thought now would be a good time to do this. She had not been interested in the past.

We also discussed Kate‘s customary visits to her OB/GYN. We decided to have Dr. Reasoner take care of all the things that he has done in the past. She gave Kate a pelvic exam. She also scheduled a mammogram and a bone density scan for March 28.

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A Day of Confusion

Kate and I are both trying to recover from colds we got late last week. She got hers about 2 days later than I, but hers was more severe. Sunday (2 days ago) was very hard for her. She moaned and groaned very audibly. She often does this anyway, but this was much louder and more intense. She was miserable. Fortunately, today has been much better though as I write this post, she is saying, “Oh, Oh, Uh . . .” She sounds as those she is in serious pain. I am hoping tomorrow is closer to a normal one.

By that I mean our “new normal.” Given Kate’s decline, our normal is quite different than it was even 3-6 months ago. Today she has experienced several moments of confusion. This morning, for example, as we were getting ready for lunch, she said she was going to get her clothes and take a shower before leaving. In a few minutes, she came back to the bedroom where I was dressing and asked, “Did you say you laid out my clothes for me?” I told her that I hadn’t. This was apparently one of those occasions when she thought I had told her something but hadn’t. I can’t remember them now, but she mentioned 2-3 other things that she thought I had said.

This afternoon we went to her dentist to pick up her new night guard. She had lost the other one a while back and has been using a temporary one since a week or so before we left for our cruise in January. While she was with the dentist, I went over to Starbucks for a cup of coffee. I got a call that she was ready. When I walked in the door, I walked over to Kate and planned to leave. Kate told me that the dentist was going to come out and explain something. We waited about 10 minutes. Finally one of the women behind the counter called to us. I told her we were waiting on the dentist. She told me that Kate was all finished and that we were free to go.

Shortly after returning home from dinner this evening, Kate called to me. She said, she had left her night guard at the restaurant. She described to me how she had taken it out of her mouth, wrapped it in a napkin, and put it on the table. She just knew that it had been picked up and thrown out as trash. I called the restaurant to see if our server might have found it. She had not. I told them we had just picked it up this afternoon and that it cost almost $600. The person on the phone said they would be happy to look in the trash. Before I could answer, I could hear Kate calling to me that she had found it. It was in its container. I suspect this is only the beginning of many such occurrences.

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Visit to Dr. Reasoner

Kate’s visit to Dr. Reasoner was uneventful last week. I was called in at one point to provide some information about a new prescription (Prempro) for which we were having to get prior authorization. It has now been a month since the doctor prescribed it. I got an email yesterday that it is ready. This is to deal with Kate’s hot flashes.

We are in our third day with Ken and Virginia in Ann Arbor. The visit is going well though Kate has expressed a desire to be home. Last night she was worried that Virginia might be ready for us to leave. I think his was a misunderstanding. It was actually Ken who asked when we were leaving – as a simple question. She translated it as Virginia’s asking interpreted it as being ready for us to go.

I have had two good conversations with Ken. We have exchanged info on Kate’s situation and how she has changed since we last were together at Christmas. He has been open about his own situation and the frustrations he has and that Virginia has. I told him that Kate is more irritable, especially with me, that in general she is more emotional, that her short-term memory is worse, that I notice a decline in the long-term memory as well, that she is frightened by sudden noises, and that she is suffering occasional panic attacks when getting ready to go places.

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Moments of reality

Today Kate had an 8:45 am appointment with her primary doctor. Before going for my morning walk, I checked to see that she was awake and knew to get ready for her appointment. She was, and I turned on the TV to the Today Show.

When I returned, I found that she was up, had had her V8, and was eating her yogurt. This would have been about 7:40. She continued to get ready to go, and I reminded her that we would leave at 8:30. At 8:29, I told her it was time to go. She got frustrated with me and said harshly, “Just a minute.” After a few minutes I went into our bedroom where I could see that she was still not fully dressed. I reminded her we were to be there soon. Finally, at 8:45 she was ready but never hurried at all.

When we got to the doctor’s office, the receptionist indicated that we were late and that they would have to reschedule which we did (for a week from this Friday). I didn’t say anything. There was no need. Kate said she was sorry. When we pulled into our garage at home, I could see that she was depressed. I told her that it was all right, that this was a situation where the consequences were inconsequential. It was clear in reading her thoughts, however, that it really wasn’t the consequences she was worried about; she saw this as another sign of the progression of her AD.

At home, I got my things together to go to the office. I gave her a hug. We didn’t need words. We both understood the situation. I believe this is only a precursor to many more of these times. It may even be sadder when the AD prevents her from feeling low. I really don’t know which is worse. Now I am at the office and concerned that I should have stayed with her.

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Another Instance of Getting Lost

I ended quickly on the last entry because Kate called and said she was in the parking lot and didn’t feel like coming in at the time. As planned in the earlier conversation, we went to Casa Bella. We had our usual veal piccata along with amaretto cheese cake for dessert. For extra measure I decided to try their pistachio gelato which was good but not nearly as good as the cheesecake.

It turns out that Kate got lost as I has suspected. She drove around a long time and finally called the hostess for her meeting that she wasn’t coming. She was clearly frustrated, and I am sure, though she didn’t say so, that she attributed the problem as related to her Alzheimer’s. I commented over lunch that we know that she is geographically-challenged and that we can work harder to relieve any frustrations in that area. I also noted the conversation we had had with her behavioral psychologist commented on how well she does with the verbal area and that that is something that will work in her favor going forward since so much of day-in-day-out social activity relies on such skills. I also said that she might put greater emphasis on making scrapbooks and albums for the grandchildren as this is something she enjoys and that the grandchildren will appreciate in later years.

Having time at lunch in a place that has been special to us was just the right thing. Not surprisingly, she had thought of suggesting Casa Bella herself. She was quite calm during lunch and left for home relaxed and ready to tackle the family album that she and her brother Ken have worked on for the past 4-5 months. During Ken and Virginia’s visit to Knoxville this past week, Ken and Kate were able to make a good bit of headway. It now looks like they are into the final editing. I think they are both beginning to see the end. My guess is that they may let it go sometime in the next 2-3 weeks.

Because of their visit, I haven’t written anything about our visit to talk with Lillian Walters, the social worker at Kate’s physician’s office. The visit went well. Nothing of special note came out of it. We did not schedule another visit but Kate said she would prefer to call when she felt the need. Kate later told me she was glad I had gone with her although nothing occurred that makes me think it is good for me to be there. She began by asking Kate how she was doing, and Kate hesitantly said she had her ups and downs. This surprised me because I would have said she has done remarkably well. At the same time I recognize there are times of frustration that occur. We talked with Lillian about her irritability. She suggested that Kate give herself permission to excuse herself for some of this and to organize her life to minimize frustration. We talked about my doing more things and how Kate feels about that. One thing in particular was taking over the checking accounts. Kate said that was fine with her.

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Life is Normal, But Not the Same

Just a quick note. Yesterday Kate went to her annual visit with Dr. Edwards, her GYN. In the context of asking her how things were going, she told him about the PET scan and diagnosis. Kate gave me her review of the visit last night. She said she had told Dr. Edwards about the AD diagnosis and to him that she was doing rather well. I confirmed that. She is doing remarkably well. She said that Dr. Edwards gave her a hug when she left and noted that seemed a highly unusual thing for him to do. I commented that it was nice that he had shown such sensitivity and she, of course, agreed.

I underscored how well I thought she was doing and indicated 2 things. (1) That we can’t always maintain any given emotion for an extended period and that we seem to gravitate back to “normal.” We seem to have entered a period of time when we recognize that life itself hasn’t changed; it is only the diagnosis, and we can go on with life. At the same time, we now view time as more precious than before. Things will never be looked at in the same way as before the diagnosis. (2) That we had both been encouraged by Dr. Reasoner’s assessment that she has plenty of good time before the part we fear the most.

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Our Latest Doctor’s Appointment

I don’t know where the time has gone. We met with Dr. Reasoner last Wednesday afternoon, and I felt like I wanted to write down our thoughts following the meeting. I just haven’t gotten to it. In fact, I am getting ready to leave for Orlando today and may not write much now.

The key thing to say is that Kate felt much better after our meeting. While she felt as though she “could cry” after Dr. Furner’s  briefing, she felt like she was getting a reprieve. Since that time we both have felt better.

Dr. Reasoner asked Kate how she had been getting along, and Kate told her. Kate seemed very much at ease and comfortable with everything even before she asked Dr. Reasoner how far along she was in the disease. Dr. Reasoner told her she was very early and conveyed (or at least we inferred) that she has a good bit of good time ahead of her. We specifically talked about travel plans, and Dr. Reasoner said there would be no need to restrict ourselves for a long time to come.

Since that meeting, we have both seemed pretty much normal except that I continue to be very accepting of behavior that might have annoyed me before the diagnosis. She does continue to experience frustration with some tasks. She is working on a family photo album with her brother and has been bothered by his urge to finish. She doesn’t like to be rushed. This is one of the signs I had noticed some time ago.

Except for these things, life is very much the way it was before the diagnosis. On the whole, however, we have been more active in doing things since we have known about her AD. We have been to Trustus 3 times and planning to go to Town and Workshop in the next couple of weeks. We have eaten out a lot.

I should also say that I am prepared for us to notice that significant changes might occur in the next 3-5 years which means I still want us to push on doing things. Kate also talks more about her bucket list than before the diagnosis. In fact, I don’t think she had even used the term bucket list before then.

We are definitely committed to the trip to Scotland in May and the trip to Africa at the end of December and first 2 weeks of January. I am also beginning to think about New Zealand in the Fall 2012.