Yesterday afternoon we arrived back home from Chautauqua. We had a terrific stay at The Spencer and have already reserved the same room for next summer. Kate got along well and enjoyed herself immensely.
Spending Money
I have always been very careful about spending money. Since Kate’s diagnosis, I have found myself changing somewhat. I now attach a higher priority on making the most of my time with her. Sometimes I wonder what I will wish I had done when I had the chance. For that reason, I have found myself spending more money on experiences this year than in the past. For example, I just arranged for a trip to NYC in Dec at a B&B that sounds appealing. New York has always been a special place for us. We especially enjoy it around Christmas. We have traveled there more than any other single place. I will look forward to this trip knowing that the number of trips we make there will be fewer in the years ahead.
The other day I did something I wish I had not done. We were in Niagara-on-the-Lake, Ontario, and I had not arranged for international calling. That means that calling back to the US is more expensive than it would be otherwise. Kate made a phone call to her friend, Janice. Afterward I reminded her about the expense of international calling. She felt horrible. I tried to tell her it wasn’t that important but I shouldn’t have said anything. Being careful with spending is still a part of me. That is especially silly since the call could not have been more than a few dollars. I’m still learning to adapt.
Funny Things Happening in the Brain
Last night after we got back from taking Heather to the Nashville airport to catch her plane to Lubbock, we sat around and caught up on things we hadn’t been able to do during her visit. Kate asked me if I wanted an “Alzheimer’s Update.” I said that I did. She then told me that her brain had been doing funny things. She couldn’t recall much of the specifics but was able to tell me that it involved seeing places she had been in the distant past. One example she was able to recall was seeing herself going down the stairs into the family room at our first house in Knoxville. She said she was well aware that she wasn’t actually there or actually seeing it but that she would just have a flash of some past memory. We don’t know but tend to think this is in some way connected to Alzheimer’s. I suspect we may learn quite a few other things that we haven’t known before.
She also said she was adapting and thought she was getting along pretty well. She seemed to speak comfortably about it last night although we did not take much time, and I didn’t ask a lot of questions that usually annoy her because it is hard for her to answer. My dad has similar experiences.
I tend to think she is doing well except when she is under pressure to handle some task. The mother’s family album was one of those things. She is trying to finish up two PEO scholarship applications that are due this Friday. She has indicated any number of times that she is just about finished, but she continues working. I have worked with her a little and can see that she doesn’t follow instructions well. That seems to be particular important when you are completing an application online. She has been quite frustrated which bothers me. I want to help and have done a little, but she really wants to do it herself. I hope that she does not do this next year. This is simply too much.
Our Granddaughter’s Visit
This past week our granddaughter from Tom has been with us from. It has been a great week with her. She has been an especially good companion for Kate. Throughout the week Kate has been impressed (as she has in the past) with Heather’s keen observance of things around her. She notices many things that we miss. I can’t help thinking, however, that this has been especially noticeable for Kate as her own memory declines. Two quick examples. Kate and I were looking for a picture I had taken of a Crowned Crane in Africa. It wasn’t long before Heather showed her the framed picture hanging on her wall in her office. Similarly, Kate had received a photo taken of Ken and her when they were young children. Kate commented that she already a copy of that picture but couldn’t recall what she had done with it. Not too much later, Heather showed her the picture that was displayed in our family room.
On a similar note, I was struck by a couple of things that Kate could not remember as she and Heather were preparing a special Father’s Day and birthday dinner for Dad and me. First, Kate asked me where we keep our placemats. Although we don’t eat at home much, we do get the placemats out often enough that I was surprised that she didn’t remember where they are kept. She also asked me where the spatulas are kept. A little less surprising is that she also asked where the blender was kept. This is less surprising in that I am the one most likely to use it. I use it regularly to blend soups for Dad.
We both thanked Heather for being with us and how helpful she had been. Heather commented on Kate’s forgetting things. I believe, however, that she doesn’t suspect the actual situation. She simply thinks of Kate as having a bad memory. This may be the story we see played out with the rest of the family.
A Brief Overnight Trip to Nashville
Yesterday we went to Nashville to visit our friends, Ann and Jeff Davis. We had a nice lunch with them and then went back to their home for a visit. We had a good time, but as we left, Kate said she felt a little insecure with them. The Davises are both very smart. She felt it was difficult for her to join in on the conversation and felt a little left out. I was disappointed because Ann is someone Kate has always admired. At one time, the Davises had lived in Knoxville. I hope that our next visit with them is more successful.
Before meeting the Davises, we went to a mall in Franklin. As is our custom, we wanted to go our separate ways and set a time to meet at Belk’s. I waited for her about 15 minutes before calling her on her cell phone. It turned out that she was waiting at Sears. Today we went back to the mall and arranged to meet at same place. While I was waiting for her, she called to ask where to meet me. It can be difficult to coordinate with her.
Sometimes You Just Can’t Win.
It has been almost two years now since Dad has been at Mountain Valley, a rehab and skilled nursing facility. During that time I have tried numerous ways to make life easier or more pleasant for him. Often I have been successful. The best things have been his birthday parties and going out to eat. On the other hand, there are quite a few little things that have failed. Early on he found he was unable to see the TV; so I bought him a table-top radio with a cd player. I found he couldn’t see well enough to work the controls. In a short time he had knocked it off the table and broken it. After that I tried a small transistor radio that was a real gem. I got ear buds so that he could listen to anything without disturbing anybody. That failed quickly as well. He could never work the controls and then broke the antenna.
There is no need to attempt a recitation of the many other things I’ have tried, but this week I found another issue. Dad got a new upper plate in the past 30-45 days. He complained that they wouldn’t stay in properly while he was eating which made it difficult for him to eat. I bought him some Fixodent and have been using it each afternoon when I visit him. He had mentioned, however, that he didn’t know where it was kept; so he was unable to use it at other times when I was not there. I put it in his top drawer and, unfortunately, assumed that either a nurse or CNA would help him. Yesterday afternoon when I arrived, he reported that his teeth were hurting him, specifically the roof of his mouth. He wanted to take his teeth out, but I said we were going down to the dining hall and thought he should wait until after eating. When we got to the dining hall, he complained again and I took out his teeth. When I did, I discovered that there was an enormous amount of Fixodent in the roof of his mouth. It turns out that he had applied the Fixodent himself and got too much. After that he didn’t feel like eating; so he didn’t touch anything except the soup I had brought him.
About 15 minutes ago he called to say that the roof of his mouth was very sore and that he couldn’t even eat a banana that I had left with him yesterday.
The point of all this is to express the feeling that many times I (and I assume other caregivers) can’t win. In fact, Dad is like a bull in a china closet. He can break almost anything around him. He is regularly losing things and always blames the staff. I am sure the staff is sometimes to blame, especially in the loss of things like his teeth and cell phone. At least twice his cell phone has been taken to the laundry. The same with his upper plate. On the other hand, Dad in his condition is hard on things.
Caught Between Father and Wife
This afternoon after we returned home from church and lunch, Kate encountered a frustrating situation that I suspect will either become more common or she will adapt to avoid such things. Either way life will change. Here’s the story.
She is working with a PEO sister in connection with a scholarship program. She has done this for a couple of years. This past year she found herself in an awkward situation when she failed to send in a candidate’s recommendation to the international PEO office. I don’t recall the exact details, but she ultimately sent the recommendation by FedEx but apparently gave the wrong address. She suffered no ill consequences except for some embarrassment for not having gotten the letter in at the time it should have been in.
A week ago the two of them met with about 10 new candidates for the upcoming year. Nominations must be in by June 15. They decided on two candidates their chapter would nominate and were looking for other chapters to nominate the others. They were scheduled to meet this afternoon at Bojangles to go over the details. Kate’s assignment was to simply type the basic information about each of six candidates. She had all the information on handwritten notes she had taken down at the time of the interviews.
I was in the kitchen while she was working in the family room. I could hear that she was frustrated. She finally asked if I could come and help her. As it turns out, I did very little but stay with her until she was finished. It took her a total of 3 hours to complete 3 pages of material. For the most part it was a straight copy from notes to the computer file. She is finding it very difficult to work with the new version of Microsoft Word and Windows 7. I can understand this as I am trying to do the same thing; however, she makes many mistakes that are in my opinion a direct result of her AD. She would delete information she shouldn’t delete. Her use of the program was so inefficient that she kept having to correct herself. That took more time than it should have.
She commented specifically on her inability to do the task. The real problem was that she doesn’t want to tell Shirley that she has a hard time doing this. That would be embarrassing and also might tip her off that she has AD. At one point, I tried to sympathize with her and said she would have to decline these types of things in the future. She said she knows that and was slightly annoyed at my suggestion. This is really hard. This is one of the things that others can’t quite imagine unless they have gone through it. Most people only think of the latter stages of the illness and believe that, as I have noted before, that the person with AD doesn’t know enough to experience frustration or sadness or any of the multitude of other emotions that go along with AD.
During the time I stayed with her as she was completing the task, she repeatedly said, ”Don’t leave me. You don’t know how much you are helping me.” For the most part, I was simply a source of security for her. I don’t mean to minimize the importance of this, but want to make clear that I did little in the way to actually organize the task or do it for her.
Since this occurred at the time of day when I would normally visit Dad, I did not get out to see him until she left to meet Shirley. I was a little anxious since Dad is sick right now, and I felt the need to check on him. It turned out not to be a problem. When I arrived, he was still asleep as he usually is. He had not eaten dinner. The nurse had checked his blood sugar. It had been 49 and 79 a little earlier. She had given him something to raise it. I told her to call me with any problems and that I was concerned about the low blood sugar.
It is now 6:35 pm, and Kate is not yet home. I expect her to be here any minute. We’ll take some time to be together and attempt to lower the stress level until the next time rolls around. This was the most serious situation since the problem with the letter of recommendation, but was similar to what was going on when she and her brother were working on a photo album on their mother’s family. I know Ken was probably wondering what was going on. One day he will know.
Forgetting Is A Problem
On way to airport this morning Kate realized she had lost her iPhone. I placed a call to her phone but did not get an answer. Shortly, I got a call back from a restaurant where we had eaten the day before. They had found it and will ship to her.
While at the Residence Inn, Kate and gone out to get something for breakfast. She forgot our room number and had to ask the person at the front desk who called me in the room. She did not seem to be disturbed and said she handled it well.
Being Forgiving/Understanding
Since Kate’s diagnosis, I have come to view most of her behavior in a completely different light. Being someone with more than a few OCD tendencies, I found myself annoyed by many things, all of them unimportant. These would include little things like the way she loads the dishwasher, misplacing the remotes, etc. I wish that I had always been so understanding as I am learning to be now.
I find myself thinking about the future, our relationship, and how life will be changing. This is especially true when I attend a funeral service. Something similar happens when we are attending happier events. For example, we recently attending the wedding of a close friend. I kept reflecting on our own wedding and the happy times we have had over the years.
A very different kind of event the other night also led to a feeling of sadness for her. She recently learned about a conversational Spanish class offered at a branch of the library near us. She went to the first class by herself. A few minutes after the class had started, she called me to come over. I did. We went to Chalupas for dinner. She told me that she was feeling intimidated and wanted me in the class because I speak a little Spanish. It saddens me every time I observe her insecurity that arises because so many things are difficult for her.
Feeling Guilty
Once in a while I feel a little guilty about the way I respond to both Dad and Kate. Last night, for example, I had turned my cell phone on vibrate while we were attending our music club meeting. I forgot to turn it back to ringer when we returned home. This morning when I got up I noticed that I had missed 3 calls and had 3 voicemails from Dad – all around 11:30. He indicated that he was a little disoriented and was sitting on the side of the bed and could not find his call button. In his first voicemail, he said something about thinking he was in a kitchen somewhere. Although 99% of his calls involve no urgency or crisis, once in a while he needs something like last night when he couldn’t find his call button. Two nights in the past week or 10 days, he has placed 10 calls one night and 8 calls another. Most of these calls he doesn’t even say anything because he can’t hear anything said on my end. Nonetheless, I want him to feel that he can reach me when he is unable to get attention from the staff; so I feel guilty that I wasn’t available for him.
Similarly, I occasionally find myself not being as patient with Kate as I should be. In spite of her forgetfulness, she does remember a lot; so I tend to expect her to remember things that she doesn’t remember. The other day I asked her if she remembered some person or occasion from a few years back. She indicated that she had no memory of him/it and said, “”You forget I have Alzheimer’s.” Most of the time I do remember and don’t criticize or even point out her mistakes, but sometimes I give a response that shows I am treating her as though she does not have Alzheimer’s. I feel a tinge of guilt when this happens.
Late yesterday afternoon we went over to Panera Bread to get a bite before going to the music club. It was beautiful outside and we chose to eat at an outside table. We sat at the very same table we had sat at a few days ago. After sitting down, Kate said, “”This is the first time we have sat outside here.” I said, “”Do you want me to answer honestly?” She naturally said, yes.” I told her that we had just eaten outside a couple of days before. Then I felt guilty because I felt she had no choice but to say she wanted the truth but that giving her the truth did not serve any useful purpose.
The weekend was stressful. Kate had agreed to help with refreshments for Monday’s meeting of the music club. When she did this, I was concerned and suggested we purchase what we needed rather than prepare them ourselves. She felt she really wanted to make them herself. I notice there are a number of occasions when she wants to volunteer to do something like this when I think it is too stressful for her. It seems important to her, however, to retain as much of her ability to do things as she can. I can easily understand this, but what troubles me is that 1) I know I will need to help her and that will be difficult for me because they are usually things that are not my cup of tea and 2) she is going to be stressed in doing what she wants and has committed herself to do.
At any rate, as we go to the weekend, I told her I would go to the grocery store for her. Then I had to push her a little to actually get started with the cooking on Sunday afternoon. I was pushing especially hard because I wanted to accomplish as much as I could before going to see Dad and also because she wanted to attend a performance of Verdi’s Requiem Sunday night. She is very slow to move. This has been true for several years. In fact, she has never been sensitive to time. I now believe one of the consequences of Alzheimer’s is moving more slowly because the brain functions more slowly.
One of the first things that I noticed in cooking was that she let me take the lead in getting things done. That is very unnatural for us in that I am not and have never been a cook in the baking sense. Cooking meat on the grill is a different matter. Despite her wanting to do things for herself, when it gets down to getting it done, she has to depend on me. When she does this, I get the greatest sense of her having Alzheimer’s.
In other situations she does beautifully. For example, last night at the music club, I don’t think anyone would ever suspect that she has Alzheimer’s. She is able to converse quite naturally and confidently. It is only when she has to make her brain work – e.g., figure something out like quantities in a recipe the way we were doing Sunday. Sunday she put 2 cups of sugar in the crust for the lemon squares and the sugar was supposed to be in the lemon itself. Fortunately, the lemon squares were edible and people in general liked them, but the crust was crystalized sugar and not like it usually is. Before leaving the house on Monday morning, we tried to prepare praline cookies. I left just as she was putting them in the oven since I thought the recipe was simple and one she had prepared many times. It turned out that she had to throw away one cookie tray because she had overcooked them.
When we got home last night, she was able to unwind. She was happy that people had liked what she had prepared even if we did not think they were up to her standards. When we went to bed, she indicated that she was relaxed and did not plan to volunteer to something like that again. That certainly made me feel better.
