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It’s Beginning To Look A “Little” Like Christmas

Like everyone else Christmas is a special season of the year for Kate and me. We used to do all the things that usually accompany the season. Kate always loved these things, decorating the house, shopping for just the right gifts, and sending Christmas cards. Over the years, we have done less. Sending Christmas cards was the first thing to go. I don’t recall exactly when that happened. I am reasonably sure it preceded Kate’s diagnosis. Come to think of it, that might have been one of the earliest signs of her AD. I do know that it was things like that that caused me to recognize she was making changes that didn’t match her long-standing personality.

Since the diagnosis, decorating the house had become a priority only when we were entertaining during the Christmas season. We gave up hosting any Christmas events several years ago. For several Christmases, we have done next to no decorating. It was never something that I had been actively involved with. My responsibility was the tree and in the past four or five years an additional tree in the front yard. Our area garden club sponsors an annual Christmas tree sale and encourages everyone to put a Christmas tree in our front yards near the street. Apart from that and a wreath, I don’t think we put up any decorations last year. I know we haven’t had a real tree for a while.

This year, I felt like I should take the lead and do a little more. First, I tried to convince Kate to help by locating our decorations and going with me to buy a few things. She wasn’t interested; so I took care of this myself. I bought a new wreath and put it on the front door. I bought some red bows and ribbons and attached them to some greenery and put one in each of the windows on the front of the house. Yesterday afternoon, I also put up the outdoor tree and the lights. I located a small artificial tabletop tree for a table in the family room. I found several hangers for the mantel. Now if I can only find the stockings, we’ll be set. Years ago, Kate had bought a 3-foot Santa that she has always placed in the family room. I have done that. This is only a tenth of what Kate used to do, but it is something, and we plan to enjoy the Christmas season. We would have done that anyway, but I am thinking this may be the last Christmas that Kate will be able to appreciate. I’d like it to look a little like Christmas.

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It Helps To Be Flexible

Many times I have remarked how fortunate Kate and I have been throughout this journey. I hope you have also been able to tell that that doesn’t mean we don’t face many of the same challenges that others are having. Caring for someone with AD always requires daily adjustments. For example, Kate and I got home from Panera about 10:15. As usual, she asked if she could “pick a few leaves” and then asked me where she should start, the back or the front. Usually, I just say wherever you want. This time I said, “Why don’t you start along the driveway.” We came inside. She brushed her teeth and then went directly to the back yard instead of the driveway. Of course, this was no problem because it doesn’t make any difference to me where she works in the yard. It’s just an illustration of the everyday things that occur because her memory is gone.

I should add that we are going to a Christmas special at the Flat Rock Playhouse this afternoon. Although this won’t be a “dress up” affair, I didn’t want her to mess up her clothes working outside. I didn’t mention this to her because I knew she wouldn’t be able to remember it. As we were approaching the time for us to leave for lunch, I looked out back and saw that she was sitting in a flower bed pulling up weeds. I knew that meant a change of clothes. It also mean adjusting our time schedule by going to lunch a little later. This didn’t bother me because I had already thought about going straight to Flat Rock from the restaurant. It worked out fine.

I relate this incident because it so illustrative of what happens everyday. As someone who has OCD tendencies, I generally follow through on my plans once they are made, but that doesn’t work with someone who has dementia. The result is that I often find that we start on one plan and shift to another before we even take the first step. It really pays to be flexible.

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Another Positive Experience With The Sitter

This morning I finally woke Kate at 11:00. It took her over an hour to get ready to leave for lunch; so that meant we didn’t have as much time as I would have liked before Anita, the sitter, was scheduled to arrive at home. Rather than rush Kate, I decided to call Anita and ask her to meet us at Panera where we were having lunch. That worked out well. That allowed me to leave and go back to the house to get ready for the Y. Kate and Anita stayed at Panera.

Once again, I am finding that four hours is not a lot of time when I go to the Y. After exercising, I met Mark Harrington for coffee. He is my technology guru and has handled the technical aspect of this website. We try to get together once a week. When we parted, I dropped by the ATM for some cash. Then my four hours was just about up.

When I arrived at home, Kate was sitting in a flower bed behind the house as she cleaned out some of the weeds. Anita told me they had taken a drive after leaving Panera. They had gone across town to Krispy Kreme. When they got back home, she said Kate went straight to the back yard. They had had a full afternoon themselves.

As Anita was about to leave, I thanked her. Kate quickly chimed in and said, “I’m the one who should be thanking you.” Then she walked over to Anita and gave her a hug. I never imagined things would go so well. It makes me happy.

After Anita was gone, I said, “So you went to Krispy Kreme.” Kate gave me a strange look. It was obvious that she didn’t remember going there.

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Flexibility Required

2017-10-21 (5:39 pm)

We’ve had a nice day. We made another visit to Sadie’s café for a cranberry scone and a large slice of pound cake, one of my favorites. We were there for about an hour before coming back to the hotel for another hour. As we were leaving the hotel room, Kate said, “Haywood Park.” I knew she was trying to show me that she recalled the name of our hotel. Of course, it was wrong again. I didn’t say anything, but the look on my face must have given away my thoughts. She said, “That’s not right?” I shook my head and told her it was the Hilton. She accepted it without a problem.

We met our son, his wife, their son as well as Kate’s brother, Ken and his wife, Virginia, at our favorite BBQ place for lunch. It was good to see each of them. We had seen our son in September, but it had been June since we had seen the others. It was especially nice to see our grandson who is now a freshman at TCU.

At lunch, we learned that the powers that be had decided to “stripe” the stadium by having people in certain sections wear black shirts while others wore gold, the University’s school colors. The section in which we were to sit was asked to wear black, and we didn’t have black shirts. To rectify this, we stopped by a shop and bought black golf shirts with the WF embroidered in gold on the front.

We got back to the hotel where Kate wanted to rest. It wasn’t too long before she wanted to get out of the room. This, as I may have said before, is not unusual. I suggested we go to Panera where we are planning to meet Ken and Virginia in the morning. Just before 5:00, I suggested we go back to the hotel before leaving for the football game at 5:30 or shortly thereafter.

When we got back to the hotel, we discovered that all the parking spaces were occupied. We ended up parking on the street about a block from the hotel. As we did this, I noticed a lineup of buses with TCU colors. It appeared that they were going to the stadium. I thought this was fortuitous as I didn’t really want to drive the car to the stadium and fight the traffic. I checked and learned that it is a free shuttle service to and back from the stadium.

Then we walked back to the room where Kate had wanted to rest before leaving for the stadium. We hadn’t taken but a few steps when she said, “Do we have to go to the game?” I hesitated a moment and said we didn’t have to go but that I had wanted to go. We tossed this around a few minutes, and I decided it was better not to push her even though she had said she would go. We came back to the room where I sent a text to our son and his wife informing them of our decision. Then I took our tickets to the front desk of the hotel and asked the man behind the desk if he knew someone who might like the tickets. He did.

The truth is that I didn’t have my heart set on the game at all. I did believe it would have been nice to be with our son and his wife for the game. It was that experience and not the game itself that was important to me. I also have to confess that I’m the kind of person who makes plans and then follows through on them. Thus, it requires a good bit of adaptability to decide not to go to a game for which we bought tickets a couple of months ago, bought shirts for a few hours ago, and came back from Panera to get ready to go to the game an hour ago. On the other hand, it illustrates two things I believe are relevant. The first is that living with Alzheimer’s involves lot of changes in plans. Second, it illustrates the importance of adaptability. If I were less adaptable, I would be miserable. As it is, I am disappointed, but I understand the need for the change. I feel for people who have more difficulty making this kind of change.

 

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Travel, Confusion, and Learning How to Address It

Kate came into the living area of the suite to which we had been upgraded. She looked very groggy and confused. I asked her if I could help her. She gave me a confused look. Then I took a more direct approach that is not like me. I said, “Let me tell you where we are. We are at the Haywood Park Hotel in Asheville, North Carolina.” She said, “Oh, yeah.” I went on to tell her that we were going back home this morning and that we had no time schedule to meet. That seemed to satisfy her. Then she asked, “Can I rest a little?” I told her that would be fine. Then she said, “If I can find where to go.” I said, “Let me show you.” Then I walked her to the bedroom.

I find that I am always learning and changing the way I approach things with Kate. My normal style is not to be abrupt or too directive. I know she does not like to be controlled. There are times like this one, however, when she is disoriented or in need of direction. In this kind of situation, I have learned enough to know that she won’t realize where she is when she wakes up when we are traveling. I can make things easier for her by simply telling her and not acting as though she does know.

Three weeks from tomorrow we leave for Texas where we will spend a week visiting family and friends. I will need to remember how important it is to provide regular information of where we are, what we are doing, etc. in order to maintain her comfort level in strange surroundings. This is more difficult than it sounds. It is amazing how easy it is to fall back on the way I have related to her over the course of our marriage. In so many respects, she continues to appear quite normal, even to me. That makes me want to respond to her in the way I would have before her diagnosis.

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Progress on In-home Care

This morning at Panera, Kate and I met with the social worker from the agency that is going to provide in-home care. I had arranged for the social worker to arrive after Kate so that we could make it appear to be a chance encounter. This worked beautifully. I saw her when I got up to get a cup of coffee and brought her back to the table where Kate was seated. I had left the seat across from Kate open for the social worker. I introduced Kate to her and told her that she and Marilyn had something in common. Then Marilyn explained that she had been the social worker at the primary care practice where Kate goes and where Kate’s mother and my parents had gone. That led into a very natural conversation. Marsha was with us about 30 minutes before leaving.

The agency that will provide the care requires an interview the person who will receive care before they assign a caregiver. At first, I had wondered how to explain this to Kate without saying that I was getting ready to bring in someone to care for her. Then I thought it would be natural for us to have this kind of meeting at Panera. It was like so many others we have there. It turned out to be a good idea.

The next step, of course, is to explain the presence of a caregiver. I have been struggling with this, but Kate has been increasingly accepting of whatever I do. I think that I may be able to tell her truthfully that I don’t like to leave her alone and thought that she might like to have someone with her who could be a companion and also help her with anything she needs. I may mention some help organizing clothes. It would be wonderful if she and Kate could work together to sort through the things that she is not likely to wear any more and organize her closet with just those things that she will wear. We are scheduled to have the first visit on September 6 after Labor Day. That gives me time to talk with the social worker again and to think through the best way to make this transition.

Although I am concentrating on making this go well for Kate, I am also mindful of the transition for me. This is a big step symbolically. In addition, I have enjoyed and become adjusted to being her sole caregiver. That will be hard to sacrifice, especially since I am not doing this to relieve the stress of caregiving. It is more an effort to make me feel comfortable when I need to be away from the house. For example, this will enable me to continue going to the Y, to Rotary, the grocery etc. I am confident that she and I will adjust. It is just a big step.

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Transitioning

As I have mentioned on a couple of occasions, perhaps more, I have noticed that Kate is looking to me to take charge of things she had controlled in the past. Specifically, I have commented on her willingness (though reluctantly) to receive and even ask for my help finding the right clothes to wear.

There are a couple of recent things that I have not made a point of. Yesterday evening, for example, when we drove into the garage from dinner, she asked in the style of a little child, “Can I go around to the side of the house and work for a little while?” I told her I would be happy for her to do that.

After she came in, she brought a handful of clothes into the kitchen and said, “These are wet. You might want to wash them right now.”

These things are especially striking to me since she is also more frequently commenting on how much I want to control her life. She occasionally refers to me as “Master” in a derogatory sense. And despite the fact that I am constantly thinking of the things that will make her happy or not in an effort to keep her upbeat, she occasionally remarks that “You don’t think of me. If you were the one who is hot, you would see that the air conditioner (in the car) is on right away.” I take these things as part of the transition to a period of greater dependence on me. This is something to which I do not look forward. I treasure the fact that we have been able to enjoy ourselves so much since her diagnosis. I will always be grateful for this time. I would also like to postpone as long as possible the stages that remain ahead.

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Our Day

I am very happy to report that we got to the Shepherd’s Center just before class and that registration was a snap, just a matter of turning in the registration form and check that I had completed before. We went directly to our class and were able to find 2 seats together. The best news is that when the class was over, Kate said, “He is really good. I want to be here every time.” The class we attended is about the Holocaust and is taught by a retired UT professor. I was not overly impressed at the depth of his lecture, but he was ideal for Kate.

Immediately following the class we bumped into one of my dad’s friends who had taught the writing class he attended for several years. Since we are going to Nashville to see Ellen today, we didn’t stay any longer. We have a little time before leaving; so we came back to Panera to get muffin a muffin and to pass a little time here.

As I was pulling into a parking space, Kate told me she was going to take off her hose. They were too tight. I just finished buying 5 pair last week. I ordered while she found a place for us to sit. When I got to our seats, she was in the ladies room. In a minute, she came back and said now she was more comfortable. I asked what she had done with the hose. She told me she had thrown them away. This is another problem in that it was one of the 5 pair purchased last week. I am almost positive that they were her size. It does concern me that we waste so much money. I just hate being wasteful. We have spent most of our lives being conscious about our spending. This is just one of the things that requires changes in my habits.

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Enjoying Home

Today marks our third day at home after the cruise. I continue to question my plans for a Mediterranean  cruise that I booked for May. I have serious doubts though I haven’t done it officially. I will probably do it this week. Being home has been much more relaxing. I haven’t felt the same degree of stress to take care of Kate. She also seems to have enjoyed being here. We have been back to some of our favorite restaurants. We went to Lowe’s after lunch on Sunday. She bought another $145 worth of plants. Then she worked in the yard for four hours. It was good for her.

We still don’t talk directly about her Alzheimer’s, but occasional oblique references occur. Today, for example, she remarked about something she had done. I said, “”Don’t we have fun?” She said, “”Well, I wouldn’’t go that far.” I said, “”At least you keep your sense of humor.” This afternoon she couldn’t find her iPad. I found it. She was so relieved. She said, “”At least I didn’t lose it.” She said it seriously, not as a joke. It conveys to me how much frustration she experiences over misplacing things all the time.

I have noticed other signs of her acknowledging that she looks to me to see if it is all right to do things in much the way a child might do. One of those occurred yesterday when she had picked out something to wear. She asked, “”Is this all right?” I told her it was perfect.” Tonight as I was getting ready to take a shower about 8:30, she said, “”I am going to bed. Is that all right?” I told her she could go to bed anytime she wants.

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Making More Adjustments

As we prepare for the music club at our house this coming Monday, I am coming even closer to adjusting to Kate’s inability or unwillingness to take care of some of the things necessary to get ready for entertaining. She has cleaned up the large guest room and the small guest room. I am not sure where she has put everything, but her office is still a mess. Although she had told me on Monday night that she would let Libby help her clean up, she refused to do so yesterday when Libby was here. As I reported yesterday, she was almost in tears when she told me we would just keep her door closed for the music club. I have let it go; I know everything will be fine. I was never concerned about the music club. I just thought it would be a good excuse to get cleaned up.

I am more interested in the outside of the house now. I have arranged for hardwood mulch to be delivered today. I also contacted a young man to come over tomorrow and spread it in the flower beds. I have also asked Libby to come on Saturday help with some last-minute things like the patio and garage.

A few days ago I had asked Kate not to do anything to mess up the yard after the woman who cuts our grass had come. She was here yesterday. I know that Kate will have forgotten and plan to drop it. I’ll just let her do what she is able and wants to do. That is working in the yard as long as she cares to do so. We bought more plants yesterday. She wants to go back for more today. She has planted a lot of what we have purchased but not all.

I am slowly learning the lesson that I must learn and that is not to have any expectations that she will be able to do anything to prepare for events like this one. The disease simply won’t allow her. Of course, I have been doing this all along, but it is not something you just start doing. That is especially true since she is always trying to assert her independence and not accept any suggestions or help that I want to give. Increasingly, I am learning to let her do what she wants and can do. I can tend to the other things.

One of the ways in which she is declining is not to notice things that are in front of her. For example, at dinner last night we split a shrimp and flounder platter. She said she was getting full. I noticed there were still two shrimp on her plate and asked if she were going to eat them. She said, “”Where are they?” I showed her. They were in plain sight. She wanted and ate them.

When we returned home, I picked up the mail. There was a card from Ellen thanking us for taking her and her daughter to lunch for Easter. I left it on the island where I thought she would see and read it. Later I asked her if she had read Ellen’s note. She hadn’t; so I got the card and put it on her side of the bed while she was brushing her teeth. When I came back into the room, I asked if she had read the note. She said she hadn’t and asked where it was. I saw that it was on her bedside table; so she had picked it off the bed and put it there. She hadn’t noticed or felt any desire to read it. She had simply put it aside. This is a common thing that she does with email and regular mail. It is as if she doesn’t see these things which I do believe is part of it. Frequently I notice that she can’t see or read things that I point out wherever we are. It reminds me of the exercise I took one time at an Alzheimer’s workshop. We were asked to put on sunglasses in a dimly lit room and go from table to table trying to sort different items. I just couldn’t quite make things out. This was to give us an idea of what it is like to be an Alzheimer’s patient.

Two days ago I finished a book. I still have a day or two before getting my new Audible credits; so I started listening to Jan’s Story. It is written by Barry Petersen who was a CBS journalist. His wife, Jan, had Alzheimer’s. I have listened to it twice before. At that time and now, I feel that it is really his story and not hers. Most of what he says tells more about his adjustment than hers. This time, however, I found myself more able to relate to what he says because I am experiencing some of the same things. I also notice differences in their situation from ours in the same way that I have done when I have spoken with friends who care for a spouse with Alzheimer’s. All of this reminds me that as similar as we are, we are different as well. We are not identical.