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.