Posted on

A Thought About Caregiving

I am reading an interesting book on caregiving, I’m Still Here by John Zeisel. His primary message is that even though someone has Alzheimer’s, they are still people with feelings and abilities. They just aren’t able to do all the same things in the same ways they have done in the past.

I like this perspective and have tried to follow it though not always successfully. The underlying assumption is that it is the caregiver’s responsibility to adapt to changes; the person with the disease can’t do it. This is not a new idea, but it is another reminder to those of us who have assumed this role. It can’t be said enough. I suspect many of the frustrations we experience might be reduced if we kept this in mind when we relate to our loved ones.

Occasionally, I have told a few people that a significant part of a caregiver’s time is spent trying to prevent or to solve problems. For creatures of habit like me, it can be a chalengel to continuously adapt in order to fulfill these responsibilities. We won’t always succeed, but we can keep trying. Years ago, I knew a counselor who worked with parents of children with behavior problems. One of the things he told parents is that they may do the wrong thing one time, but there is always a chance to do the right thing the next time. Caregivers also get multiple chances to do what works best. Most of us don’t come to this role with all the knowledge and skills to be effective, and we don’t develop them by simply receiving instructions. It takes practice. We have to develop patience with those for whom we care. Just as important, we need to be patient with ourselves.

Posted on

Her sleep pattern keeps changing

For years, Kate has had a pretty predictable pattern of sleep. At least that is true since she started taking Trazadone. That was shortly after her diagnosis just over seven years ago. She used to go to bed between 9:00 and 10:00. She would wake up around 7:00 or 8:00 and get some juice and yogurt. Then she returned to bed and worked jigsaw puzzles. She would get tired and fall asleep for a little while and get up for good between 8:30 and 9:30.

Early this year, she gave up the juice and yogurt routine as well as going back to bed. Her morning routine was rather stable until she got the flu. It wasn’t long after that when she had a lingering cold. I think that upset her sleep pattern. Since then, there have been several times when she has slept close to noon. I woke her up one day about 12:20.

Until this morning, I thought she might be working her way back to a regular pattern. I woke her at 12:25. I’m not entirely surprised. Last night she didn’t get into bed until after 10:00. Once she was in bed, she was talkative. She was talking about how fortunate we are. As she and I often do, she talked about our marriage, our children, grandchildren, and her extended family. I suspected she might sleep a little later today. I just didn’t anticipate how late.

That’s not an unfortunate thing for me. I got in my morning walk and took care of a variety household responsibilities that I have been putting off for a while. Being a creature of habit, I’m just thrown off a bit when I can’t be sure when she will be up. One of the ways I have adjusted is not to schedule anything during the morning. That works well. It certainly did this morning. I’m glad I didn’t have to rush her. Next week we are going to Memphis to spend a couple of days with our daughter and her family. I decided to make it a very leisurely trip by stopping overnight in Nashville. That afternoon we will visit Kate’s friend, Ellen, who is still in rehab after a bad fall. The next day we will have a leisurely drive to Memphis.

Some things are more of a challenge. Two weeks from today, I have a routine doctor’s appointment. I am scheduled for my labs the day before. Because I’m not supposed to eat breakfast before hand, I try to schedule the earliest appointment of the day. That’s not a time when I have a sitter, and I don’t want to get Kate up early enough for us to make an 8:00 appointment. I have scheduled this one for 10:30 and hope that I won’t have any problem getting Kate ready. If it is a normal day, that should be no problem. If it’s a day like today, I may have a challenge on my hands.

Posted on

Special Moments Brighten Our Lives

Although I try not to deny the trials that accompany living with Alzheimer’s, Kate and I are quick to acknowledge how fortunate we have been thus far. Her diagnosis came at a time when I was able to retire, neither of us has had any other significant health issues, we have traveled, and we have remained socially active. In addition, there are always unanticipated things that happen to brighten our lives. I’m thinking of one of those right now.

For many years, Kate’s brother, Ken, has put together hardbound albums of family photos. These include ones that focus on particular trips or events as well as an annual volume that summarizes the entire year. Recently, he told me he was making an album of photos for Kate celebrating the many special people and moments of their lives. It is a full 140 pages of memories. It begins with their births and goes up to the present. He intends to surprise Kate with her own copy when it is ready in the next few weeks.

A few days ago, he asked me to look over the album and make any edits or suggestions that might be appropriate. I was overwhelmed and touched by what he has done. Kate has always valued her family and often speaks of what it has meant to her. As her memories fade, this will be a treasure for her, especially as it is such a personal gift from her brother. I will no doubt say more after she receives it, but I have a warm feeling of gratitude that Ken is doing this for his big sister. Living with Alzheimer’s doesn’t mean an absence of special moments like this.

Posted on

We’re off to a good start today.

After a somewhat rocky day yesterday, I wondered what might be in store for today. Kate often takes a while to fully wake. Sometimes it just takes longer than others. Yesterday was one of those. Today she surprised me when she was ready for her muffin at Panera before I knew that she was up. In terms of my own preferences, she was up at an ideal time. It meant no rushing to get to Panera and then for her to have lunch before the sitter arrives at noon. I can’t stress enough how much better she and I feel when she can take her time getting ready.

It has been a relaxing morning for the two of us. I have taken care of some email communications with Kate’s brother, Ken, met with someone who has given me a quote on a new water heater, arranged a phone call appointment for tomorrow, updated my file on the sitters, and the other things that my friend, Tom Robinson, refers to as his “morninglies.”

Kate has almost finished her sandwich, something she doesn’t always do. I don’t think I have ever commented on the way she eats sandwiches. Most of the time, she doesn’t pick up her sandwich and take a bite. She takes on the top slice of the bread and picks out the various items between the slices. I see that today she didn’t eat any of the slices of tomatoes or the lettuce. She did eat the slice of cheese and the turkey. She also finished the two slices of bread but left all the crust. She doesn’t like anything “crusty.” Lately she has been taking most of the breading off her fried shrimp and the fried chicken she gets at one of the restaurants we visit regularly. She does not eat the bacon if it comes on a sandwich. I have learned to order most sandwiches without bacon or lettuce. We’re always adapting to change.

Posted on

We had a good finish to a somewhat rocky day.

Just before 6:00, Kate came into the family room where I was listening to music and making some notes for my blog. She was ready to eat. She was Back to normal. When I asked about her leg, she said that it still hurt but that it wasn’t bad. We were off to dinner.

In the car I turned on some music that I know she enjoys. We didn’t have far to go, but she really appreciated the music. She was in good spirits throughout the meal. As we came home, I played more music. When we arrived, she looked at me as if to say, “What now?” as she often does. I told her we could relax in the family room and I would play some music. She liked the idea, so we did.

We spent almost an hour and a half there. She and I both were enjoying the music. She began to reflect on her mother and said how happy she was that we had been able to keep her in our home the last 5 years of her life. That led to other things about her family, our marriage, and children. This occurs regularly, and I am happy to support the conversation. We are both very grateful for our parents, our children, and our lives together. We often reflect on the many things we have been able to do over the past 55 years. About 20 minutes before we went to the bedroom to get ready for the night, I played a few pieces of music that she likes a lot. She was moved by the music in a way that I have observed a few other times recently. She became very teary as the music played. I was touched as well. Music as been very important to me. I am so glad that she is able to be moved by it as well. What had been a more difficult than usual day for us ended up on a very high note. I am grateful.

Posted on

After Lunch

Once we were back at the house, I suggested we change clothes and relax a while. She told me she didn’t want to change. I told her that was fine. I got her a Tylenol to help the pain in her knee, and we sat in the family room. I started this post, and she worked on her iPad. We have been here a little more than an hour. She has been working on her iPad steadily and peacefully all this time. I thought all was well. Then she said, “I’m ready when you are.” I asked if she wanted to go to Barnes & Noble. She said, “I’m just tired of the same old thing.” We went to Barnes and Noble and were there about an hour before she was ready to leave. During the time we were there, she seemed fine.

On the way home, I stopped by Walgreens and bought a sleeve for her knee. I had no idea whether or not it would help, but I didn’t think the Tylenol had made a significant difference. I was ready to try anything. When we got home, I put it on for her. She immediately felt better. I should add that she hasn’t given it a real test so far. She has been sitting in bed with her leg stretched out straight. We’ll soon be off to dinner. That will give me a better idea of how well it works.

I just checked to see how Kate is doing and was pleased to see that her mood had changed completely.

Posted on

At Lunch Today

They were having an Easter buffet today. We walked slowly to the tables where the food was displayed. I just got salad with the intention of going back for my entrée. It looked like Kate was doing the same thing. She only had salad items on her plate. She had no greens, but did have some boiled shrimp, a large helping of mandarin oranges, some black olives, and another generous serving of shredded cheddar cheese. On the way to our table we passed the desserts. She got a cupcake and two slices of pound cake.

When I finished my salad, I went back for a serving of roast beef and salmon and brought some back to Kate as well. As I was serving myself, I saw a server we knew had known for a long time. She asked how we were doing, and I told her about Kate’s Alzheimer’s. She asked where we were seated and said she wanted to speak to her.Then she asked if Kate would know her. I told her I didn’t think so, but she responded well socially and would enjoy seeing her. Before I got back to the table, the server met me and said she had spoken with Kate and that she had responded as I as said she would.

When I reached the table, I gave her a slice of roast beef and a some salmon. She started to eat the salmon with her fork, but she ended up eating it with her hands. This is not a very unusual thing for her to do. She usually does it discretely and doesn’t pick up the food with her hands throughout a meal. I do, however, wonder what may be ahead in the future. If that becomes a typical way to eat, that could affect our dining out though I would think it depends on how noticeable it is.

Posted on

It looks like another marker on our journey, and it involves clothes.

This past week Kate’s doctor had asked if she needed any help with dressing. Kate was offended by the suggestion, and I confirmed that she dresses herself. That was only a half-truth. She does need help in putting on the right clothes for a specific occasion as well as selecting clothes that are not too soiled. This morning we may have crossed another marker. She needed my help getting dressed.

We ate lunch at a nicer restaurant than those at which we usually eat. It is also Easter Sunday, so I knew people’s attire will be a little dressier than usual. With that in mind, I carefully chose everything for her and put the clothes on her bed. I even included the specific shoes along with appropriate hosiery.

When I was aware that she had gotten up, I went to her room where she was just getting out of the shower. I told her good morning, reminded her about our lunch plans, and said that I had put her clothes on the bed. I came back in about ten minutes and found that she had selected different clothes and was just about to put them on. I explained once again that she would need something a little dressier and that I had put out the clothes for her. At that time she was sitting in a chair that was only two or three feet from the end of the bed where I had put her clothes. She seemed a little irritated that I was helping. I told her I would get out of her way and let her dress.

In a few minutes, she came out ready to go, but she wasn’t wearing a single item I had picked out. She was also wearing black shoes that didn’t match. I said, “You didn’t put on the clothes I picked out.” Having said that, I quickly realized that wasn’t the best response I could have made. Fortunately, it didn’t seem to bother her. She just said, “Where are they?” I took her back to the bedroom. Her clothes were still there, but I noticed that the shoes were not. I showed her the clothes and started to look for the shoes. She asked me not to leave and said, “I don’t know what to do.” It was painful to see. She was so confused that she didn’t realize that the top I had given her and was in her hand was what she should put on. I couldn’t find her shoes or the hose I had gotten out for her.

After she was dressed, we went back to our bedroom where I had seen a pair of shoes she had worn yesterday. I knew they would be a good substitute for the ones I had originally picked out. She put on the shoes, and we were on our way.

The next issue we faced, and one that continues, is the pain in her knee. I have been unable to tell if the Tylenol has helped. One thing for sure is that she is indicating more pain today than I have observed in the past. Again, it makes me wonder if this isn’t something more than a case of arthritis.

Getting ready did not lead to a panic attack, but Kate was definitely experiencing more emotion as a result of learning she had put on the wrong clothes and having to change. I think that is what caused her to be so confused as she was getting dressed. It was about 20 minutes before we needed to leave for the restaurant, and I didn’t think it was worth it to drop by Panera. I suggested we go to the family room and relax a few minutes before leaving. I gave Kate her iPad and put on an album of soft cello adagios. That seemed to work. She was calm by the time we needed to leave.

When we got in the car, I played the second movement of the Brahms Violin Concerto in D. That is another piece of music I have found to be very relaxing. I have played this often when she has had an actual panic attack. We didn’t speak on the drive to the restaurant. When she got out of the car, I could tell the pain in her knee was bothering her. I parked in the closest place I could, and we walked very slowly to the restaurant.

Posted on

Things pick up in the afternoon.

Kate has never been a morning person, but I think her cold has made it especially difficult to get going. She didn’t get up until shortly after 10:00 today after going to bed close to 9:30 last night. When we got to Panera at 11:20, she was still not fully awake and not very jovial. She didn’t recover during lunch. After getting home, she went directly to bed where she rested about 45 minutes. When she got up, she joined me in the family room where she worked on her iPad for another hour. We didn’t talk during that time, but she seemed to be more alert. Finally, she indicated, though not in words, that she was ready. She just closed her iPad and said, “Well.” I said, “I guess you are ready to go.” She said, “Whenever you are.”

As we drove to Barnes & Noble, she was quite cheerful and talkative. I was playing a CD of the musical Cats. When she heard “Memory,” she said, “I love that song.” I said, “It is interesting that it is probably the best known song from the musical, and it’s the only one not based on one of T. S. Eliot’s poems.” She hadn’t remembered that the musical is based on his book, An Old Possum’s Book Of Practical Cats. She said, “That’s got to go in the album.”

She was talking about her photo album of our family. She hasn’t worked on it in at least two years, but she still occasionally mentions things that she wants me to remember to put in the album. I could tell she would never finish the album more than two years before she stopped working on it. The only thing she has ever done to create the album is to select some family photos for inclusion and edit them. She has never put anything into the software that she would use to make the albums. She did edit and edit and edit the photos. That was the first of her activities to go. That left her with the yard and jigsaw puzzles on her iPad. Now it’s looking like the yard may become a thing of the past as well.

Speaking of the yard, spring is on the way. We see various trees and shrubs beginning to bud and flower. I have been watching to see if we might get any new leaves on the shrubs around the house. I am glad to see that at least some of them are coming back. I haven’t seen any indication that others have any new growth. They are completely bare. I’m not going to give up hope just yet, but it’s not looking good.

The short rest that Kate had gotten after lunch must have done the trick. She has been just fine since she got up. Once we were at Barnes & Noble, she got rather chatty. She started reminiscing about her mother and father as well as our marriage and how good she felt about our children and grandchildren. These are things she says quite often. She and I talk about how fortunate we are. Periodically, she would say, “Okay, I’m going to stop now.” She would look down at her iPad. Then she would start talking again. She must have done this at least four or five times before she really stopped. At that point, she said, “Now, I think I’m going to play.” Then as though she had to justify that to me, she added, “You know, you can’t do serious things all the time.” I am glad to see I’ve got the “real” Kate back now, and I am grateful that we always seem to have good afternoons and evenings.

Posted on

What do I do next?

I am becoming more confident that Kate’s asking for permission is as much or more her asking “what should I do?” rather than “what may I do . . .?” It seems to be a little of both. I think she is unsure of herself and looks to me for guidance. Clearly, I do correct her on some things, so I do think she wants to please me. I don’t, however, see any sign either in the tone of her voice or the look on her face that seems to convey any resentment, just wanting to know what she should do.

Tonight we had another very peaceful and very pleasant evening together. We always do. We had spent almost an hour at Panera that was very relaxing. Then almost another hour at dinner. As we waited for our pizza, she looked over at me and said, “You know you’re the most important person in my life.” I suspect that is something that every caregiver would like to hear. Then we came home where she worked on her iPad while I watched the evening news. The next thing I knew it was 8:45. I went to take my shower. She continued with her iPad.

While I was in the shower, she opened the door to the bathroom and in a soft voice said, “Richard.” I said, “Yes.” Then she asked, “Can I get ready for bed now?” As always, I said, “Yes.” She is now in bed while I write this post. Chris Botti is playing on my sound system. It’s been another good day. I think I’ll join Kate.