About 15 minutes before we were to leave for Kate’s PEO meeting, I went back to her office/dressing room. I found that she had already dressed and was wearing a top that I didn’t think was suitable for her meeting. I told her I had several others she might choose from that would be better. I brought them to her, and she picked one out. I left her to change tops while I put the other two back in my closet. A few minutes later Kate came out with a totally different top that I thought was not as suitable as the one she had previously picked out. I said, “You didn’t wear the top you picked out.” She was horribly frustrated and asked, “Where is it?” She became emotional and started crying. I went to her room and picked up the top she had originally chosen and brought it to her. She continued to be upset as we drove away. I decided that I should put on some relaxing music to calm her as we drove. When I turned on the audio system, it was set on high volume and I was unable to turn it down quickly enough. She is very sensitive about sudden noises, especially loud one. I apologized. She said, “You always do that.” So this was a case of my adding insult to injury. I didn’t handle this well though my intentions were good.
This morning I washed my clothes and took them out of the dryer about 10 minutes before I had to leave for Sunday school. I folded and put away my underwear and socks but left the rest (not very much) on our bed. I almost always wash my things separate from Kate’s because so often she has gotten my clothes and worn them. This is an easy way to retrieve them. That has been a special problem with my socks and t-shirts. She wears the t-shirts when she is working in the yard, and they get so dirty that they don’t come clean during washing. Being something of a “Neatnik,” I don’t like to wear them to the Y. Before I started doing my own washing, I had to buy extra t-shirts, but that didn’t help. Invariably she would get them. I now have only a few shirts that I can wear to the Y.
When I got back from church, I noticed that she had folded several pair of socks and underwear that I had missed before leaving. This afternoon as I was watching football, she worked in the yard. Kevin called, and I went out to the yard to get Kate. I noticed that she was wearing one of the two of the t-shirts that had been in the wash. When I got off the phone with Kevin, I looked in my closet where I keep them and found that she had not put the other nicer t-shirt in there. About 15 minutes ago, I went out to check on her. I mentioned that I had noticed that she was wearing my shirt. She immediately reacted with sorrow. I told her it was all right. I just wanted to make sure that I got the other shirt. She was so hurt that I didn’t follow up on it. This is the kind of thing I try to prevent from happening. I don’t want to hurt her. On the other hand, I do want my shirt. I think I will try buying new shirts and just work hard to wash them and put them up before she can see them.
About an hour later, I was getting my clothes ready for tomorrow and noticed that I needed to get that t-shirt back from Kate. Then I went to get out my socks and noticed that the three pair of socks that had been in the wash were nowhere to be found. I went to Kate to ask. Once again she had a mild emotional reaction as though she were going into a panic attack. She had no idea where they were and didn’t recall having seen them. I looked on her bed in her office and found them. I found the t-shirt on the bed in the large guest room. I will continue to try not to put her in this position, but I fear these things will only increase.
I have the responsibility of putting Kate’s medications in her pill box every week. I also assume responsibility for checking behind her to see that she actually takes them. Yesterday I slipped, and she missed both her morning and evening medications. This is not critical except for Venlafaxine which she takes every morning. In the past I have found that if 48 hours pass since her last dose of Venlafaxine, she suffers from an unsettled stomach.
When I discovered that she had not had her Venlafaxine yesterday, I knew that she needed it right away and that if she didn’t get it by noon she might have the effects of an unsettled stomach. It turns out that this started shortly after I gave her the morning medications including Venlafaxine. I went to the Y and also to have coffee with a friend. When I got home to take her to the bank where she was to sign some papers, I discovered that the stomach problems had occurred even though she had had her Venlafaxine. We went ahead to the bank, but she did not feel well and didn’t want to stop for lunch. We headed home. Once home, she still did not feel like eating; so I went to get a bite. When I returned home, she was feeling all right. I asked her if she wanted me to take her to get something to eat. She said that she didn’t, that she would just get something here. She is now up and dressed. She walked into the kitchen where I am typing this post and said she was ready to get something to eat. That means we are off. We’ll probably return home, before leaving for her eye doctor’s appointment at 3:00 p.m.
During the time we were in Chautauqua, Kate lost a sweater left under her seat at the opera and her purse that I left beside her seat at Scott Roselle’s radio talk show that we attended each morning. We recovered both of these. They had been delivered to the Lost and Found office.
On the trip home, Kate left her iPad either on the plane or the ladies room. We went back to both places and did not find it. On Monday I went out to buy another one. It was delivered to our house yesterday while we were in Nashville visiting with our friends, Angie and Tom Robinson.
While I can blame Kate’s Alzheimer’s for the major part of these losses, I feel responsibility as well. After all, I should be the one to make sure that we have all of her belongings. I am not good at remembering to get her things. I will continue to work on it, but I find, especially while traveling, I often have my own things to look out for, and it is easy not to take specific note of her things as well. I am far from perfect.
I am also thinking of the fact that I have lost her a number of times. That, too, is partially (perhaps largely) my fault. If I never let her out of my sight, this would not have happened.
Last night I bit the bullet and booked a 13-day cruise from Rome to Amsterdam. I had requested information on the cruise on their website on Monday and received an email that night. I sent an email asking about cancellation penalties if we should not be able to make the trip. I told him about Kate’s Alzheimer’s. His email response indicated that we could book for $600 and cancel up to Feb. 23, 2016. At that time we could purchase insurance that would cover the balance of the period before and during the trip. I called to talk with him after dinner last night. I discovered that the rooms were going rather quickly as this would be the christening cruise for one of their new ships. After asking questions and checking room availability. I went ahead with the booking figuring that I should have a much better idea of whether or not we can do it by Feb. 23.
Tomorrow we leave for Niagara-on-the-Lake and Chautauqua. We return on Saturday night, August 8. Things continue to go well though Kate’s short-term memory still brings surprises and requires careful coordination. For example, last Friday night after seeing Dreamgirls at the Bijou, Ellen told us she was having abdominal pain and that it was similar to what she had felt when she had had a kidney stone about 7 years ago. We ended up in the emergency room at Providence until almost 3:00 a.m. We got to bed at 3:30 and I was up at 7:30. Kate slept a little later. At lunch I asked her if she felt sleepy. She looked puzzled and asked why I would ask that. I explained that I thought maybe she hadn’t slept well. She said she had slept fine. It was clear that she had forgotten that we had been at the hospital with Ellen most of the night.
Yesterday we had a bump in the road. I had hired someone to power wash our patio, driveway, and brick wall. We had been to Lowe’s yesterday morning to buy some plants, and Kate had taken a large plastic container that I use in the trunk of the car when we bring home plants. This helps protect the trunk of the car. At any rate she had left it outside. It had rained and had created a mess in the container. She took it around back and dumped it out on the freshly clean drive right behind the garage. I reacted immediately and said something like “I just paid the guy the clean this.” That was all it took. She said, “I can never do anything right.” I have learned it is better for me not to say anything after a misstep like that. She went on to talk about how picky I am. Fortunately she calmed down, and it was all forgotten.
Then tonight we had another hiccup when I asked her if she had packed the new clothes she had bought the other day. She looked puzzled. I know that she has no idea where they are. She was frustrated and asked me to help her when we got back home from dinner. I told her I loved her, that I wanted to help her so much, but she wouldn’t let me. At least two of the outfits she had been pleased with and believed would be ideal for Chautauqua. My problem is that she won’t let me help her put them up so I know where they are. I also try to take pictures of new clothes, but she put them up before I could take pictures. It is frustrating for me, and I know it must be even more so for her.
It is now fall. That means another time for planting. We have been to Lowe’‘s a couple of times already. Friday Kate mentioned that she wanted me to take her back to get some more mums. Today after lunch I did just that. When we got to Lowe’s I noticed that she walked right by the table with the largest selection of mums that is right outside their main section. I got a cart and took it to her. I found her looking at a small section of mums like the ones she had purchased before. She didn’t get any. She walked around without appearing to have a plan. I am confident that she didn’t. Then she picked out a couple of plants that were not mums and continued looking at other plants that were clearly not mums. I suspect she had forgotten that she wanted to get mums; so I reminded her that she had wanted mums, and I wanted to make sure she didn’t get a full load before getting what she said she came for. She seemed to accept this, but before we could get back to the mums section, she picked out several other plants. If I hadn’t reminded her again, we might easily have purchased a full load and not gotten what we came for.
This, of course, is looking at it from my perspective. The reality (I believe) is that she doesn’t have a formal plan anyway. She just likes to buy things that she likes when she sees them. She can always find a place for them. She can tell when I get frustrated which must bother her, and it bothers me. I need to develop more patience to just let her do what she enjoys without trying to get her to approach things the way I would do.
The past two days with Dad have been super ones. On Monday he was up when I got there. Yesterday he was still asleep but awoke easily. This has been a pattern for 3 weeks or so. Prior to that he had always complained that “I’m still asleep.” I am beginning to wonder if the change in his medicine might have made a difference. That’s the only reason I know of.
Both of the past two days he has been alert with no delusions. In fact, he entered into a conversation with the daughter-in-law of a woman who eats at the next table from Dad. I turns our her father was from Rogersville where Dad lived while a boy. They chatted about familiar things. He was amazingly clear headed. He also has continued to eat well. I think they are following up on my concerns about his diet and giving him things that don’t choke him as easily. For the most part, however, he has generally been eating well for several weeks starting about 2 weeks after coming back from the hospital.
There are several things to report about Kate. First, I hurt her unintentionally last week. It was a Monday night, and I had brought home something for us to eat. It was a beautiful afternoon; so we decided to eat outside. She wanted to eat at the table, but when I went over to the table I notice that it was messed up with potting soil that she had spilled while potting plants. Some of the soil had spilled over onto our new cushions. It had also rained earlier so there was a slight mess on the chairs. I said something to her about her having promised that she would watch out for the news cushions so they wouldn’t get messed up. I didn’t want them messed up so quickly, especially since we had done this in preparation for Dad’s birthday party.
I thought that I had made my remark as gently as I could, but it hurt her deeply, and I felt miserable. One of the things I have discovered is that she is very sensitive. I also believe a major part of this is that each event like this is another sign of her inability to do certain things. She is finding fewer and fewer things she can do well.
One example of her difficulty doing things is posting a message on Facebook. She asked me to show her how; so I brought up the screen with the space to enter her message and left the room. I’m not sure what happened, but she let me know it didn’t post. I set it up again, and she ran into another problem. Finally, on the third try with me by her side, she did it.
The really good news is something that I have mentioned before. In most respects, people would never know that she has Alzheimer’s. She is good in conversation. She only slips up on remembering who people are, but it is usually easy to get around that by being pleasant and acting like she knows them. The other day a neighbor, pulled up in the driveway when she saw Kate working in the front yard. Kate didn’t recognize her at all. She asked Kate for a copy of our neighborhood directory to give to 2 new families that have moved to our street. Kate told her to see me and that I would give them to her. When she asked me about the directories, I told her I was unaware that we had any remaining directories. I did this because Kate had been unable to locate any several weeks ago when we were working on the information for a new directory.
The directory is another of those tasks that is a problem for her. I have taken that over, and she hasn’t said a word. There are many things like that. She takes most of them very naturally. Other times she is bothered by my trying to help her with something she feels like she is able to do.
I am re-listening to a book by Barry Peterson called Jan’s Story. It is an account of his experiences with his wife who had Alzheimer’s. One of the things he mentioned is the change in conversations that he and his wife used to have. That is definitely happening to us. Kate cannot follow anything that is the least bit complex. I am quite accustomed to her saying, “Let’s not talk about it.” Often it doesn’t leave much that we can talk about except to reminisce – past experiences, places we have been, special moments shared together.
I am also noticing more memory loss. That is something that most people see as the key problem with Alzheimer’s, but I have felt that in the early years it is the inability to function well on everyday tasks that is the real problem. Before I really believed she had Alzheimer’s, I thought she was having a problem with depression. I have no doubts now that the problem was Alzheimer’s.
I continue to believe we are better off for having learned of her diagnosis. It has given us the opportunity to take advantage of our time together. I think we have both been committed to this end, and it has worked. We continue to enjoy ourselves. When we go to dinner as we did last night, it becomes a special moment for us even though it was just a Tuesday evening dinner. I am optimistic that we will have many of these times ahead even as she declines further.
I am with Dad in the hospital. I received a call from Mountain Valley at 6:00 am Friday morning saying they had discovered rectal bleeding and recommended that he go to the hospital. This morning they performed an endoscopy and discovered that he has 3 ulcers in his upper intestine. That’s good news as it can be treated with Nexium which they are doing intravenously now. He’ll probably go back to Mountain Valley on Monday.
This is the second time in a week that we have taken him to the emergency room. It is on these occasions that one becomes keenly aware of the multitude of people Who are here on a daily basis. Yesterday as I took a break to call Larry, a woman in the parking lot called to me. She told me her daughter was very sick and needed a wheel chair. I went inside, got a wheel chair, went to her car and brought her in. I noticed the mother was struggling from some type of foot problem and suggested she might need a wheel chair as well. After leaving the daughter with an attendant at the check-in desk, I took another wheel chair out to the mother and brought her in.
Two friends from Littleton, CO, visited us for 2 nights this week. It was good to see them. Kate enjoyed their company and was unusually talkative. She gives a fair amount of misinformation, but it doesn’t usually matter as the listeners don’t know and won’t have occasion to discover the mistakes.
She continues to spend time in the yard which I have noted on several occasions is her therapy. The plants don’t complain or give suggestions and neither does anyone else. For me it does occasionally present a problem. That is usually when we are scheduled to go someplace, and she gets caught up in the yard rather than getting ready. That occurred this week as I was focusing on getting the house ready for guests. She had brought in cuttings from the yard and put them in a small vase around the sink in the laundry room. While it was a nice touch, she didn’t notice that there was dirt all around the sink. If I hadn’t specifically suggested cleaning the area, she would probably not have noticed.
Recently Kate has become more sensitive about being corrected. I am having to learn not to say anything that might make her feel bad. One of my bad habits is asking, “Do you remember . . .” Because there is less and less she does remember, this is not a good thing to say.
Wednesday night we got back from NYC. It was everything I had hoped it would be. We saw more shows than ever (5), 1 opera, a performance of Handel’s Messiah, and the new movie, Lincoln. We are treasuring the memories of such a special trip.
Back home, I see Kate dealing with the frustration of accomplishing things – mostly on the computer. Yesterday I could sense she was depressed which I took to be related to this frustration. When I got home from visiting Dad, I asked her what she would like to do for dinner. When I suggested one possibility would be to bring something in, she didn’t look excited. Then I said, “”How about going to Casa Bella?” This is one of our favorite restaurants in Knoxville? We almost always get the same thing, and it has come to be a comforting place when we are low as well as times when we are celebrating. She responded quickly saying, “”Could we?”
I told her I would like to go ahead and get my shower. She said she was ready but would continue working on the computer while I got ready. Her power cord is damaged again; so she was using mine. She has repeatedly has power cord problems because she uses the computer with the power cord plugged while lying in bed or sitting in a location where the cord is pulled. Within two months of getting the latest computer, we had to replace the piece in the computer into which you insert the plug as well as the power cord itself. We had done this on her previous computer as well. We have discussed why this is happening, and I have encouraged her not to use it that way. In addition, I bought her an iPad because I thought she could use in it instead of the computer, but she has not gravitated to the iPad. I think that is mostly because the bulk of what she does is making photo collages using Microsoft Publisher and Creative Memories, neither of which she has on the iPad.
This is all a preface to one of my failures in handling a situation last night. Just before we left and while she was working on the computer, I told her again that it was better not to use the power cord while seated on the sofa. (That is because it requires the cord’s being pulled to the side which can cause the same damage to my cord as to hers.) She said, “”I am trying to be super careful.” I answered softly but inappropriately, “If you were trying to be super careful, you wouldn’t be using the computer this way.” She then broke into tears and went to get her coat.” When she came back with her coat, we embraced and I told her I loved her. She said, “I just hate this; I can’t do anything right.”
We had a perfect evening at Casa Bella. We caught them on a very busy night, but we had good service, the veal piccata was better than usual, and we topped it off with white chocolate cheese cake. When we got home, she was tired and got into bed before I did. While I was brushing my teeth, I heard her, and asked if she were laughing or crying. She said, “”Crying.” I asked, “”Why?” She said, “”I don’t know.”
These are continuing signs that she is getting progressively worse, and she realizes what’s happening. One of the things that hurts me is that she keeps most of this to herself. I wish she were able to talk about it more, but I think it is not just to spare me but to protect herself. I suspect that she feels the more she dwells on her condition, the worse things are. She is really frightened.
Once again, events of yesterday reinforce the superficiality of social relationships. At noon yesterday, we had our Sunday school class Christmas lunch. She sat at the same table as our pastor. He has told me before that except for knowing from me that she has AD, he is unable to tell when he speaks with her. I suspect that even though they sat at the same table for more than an hour, he wouldn’t have been able to tell. On the other hand, I can see so many things that make it difficult for her to function effectively.
This makes me wonder how long we can keep this from our children. I really want them to know so that they can make the best of their relationship with her the way I have been able to do. At the same time, Kate does not want people to look at her as a patient. I will honor this desire until or unless the children begin to suspect. That could happen this summer when we spend a week together in Jackson Hole. If it doesn’t, this will be further evidence of how long someone with AD can keep it hidden from others.
Quite a while ago I mentioned that Kate had asked me never to use “that word ‘remember.'” I feel like I have tried to honor this request, but I have failed miserably. It is amazing how conditioned I (we) have become to automatically saying that when someone fails to remember something we told them. Normally this is not a big problem, but with someone who has AD, it is. That is because there are so many instances of forgetting something that has happened or something you have told them. It seems particularly difficult because for a long time, the person does remember so many things. These instances of remembering reinforce that the person is normal. Our expectations then are that she should remember everything.
I have been unusually sensitive to this pattern in recent months, but I continue to say, “Don’t you remember?” or “I told you . . .” When I do this, I feel guilty because I know it is a constant reminder that she cannot remember. At least she does not ask me not to say this. I feel confident she does not remember telling me not to say this. Last night was one of those moments of confusion. I had reminded her the day before that I had a meeting of the executive committee of our music club at 6:30 pm and that it might be a long meeting since the first one had been long. I must admit that I was never too specific about this; so it may have been clearer in my mind than hers. Nevertheless, she thought I would be home much earlier than I was and got worried. She had envisioned that we would spend a quiet evening together following all the activity of the past few days. The reality was that I didn’t get home until 8:30, and we still hadn’t eaten dinner.
As I have said before, this forgetfulness is getting worse. It makes me wonder when the children and others will notice. I suspect we will get along without revealing her forgetfulness when we are with our children at Thanksgiving and Christmas, but next summer in Jackson Hole for a week is another thing. I hope for Kate’s sake, they don’t notice.
Another issue that Kate is facing (and I along with her) is a loss of self-confidence. She is learning not to trust herself because she knows she makes so many mistakes. Last evening her computer was not working after she had supposedly charged it. I asked her to bring me the power cord. When I tried to plug it into the computer, it wouldn’t go in all the way. I got mine, and we charged it. This morning I looked at her power cord to see if I could identify the problem. When I did, I discovered that the slim metal connector in the tip of the cord was bent. A couple of months ago we had to buy another power cord because the first one was broken. This happened because Kate lies in bed or sits in a chair with the power cord attached. The way she holds the computer it often presses up or down on the end of the cord that is attached to the computer causing the connection to fail. When I found the problem this morning, I was able to straighten out the slim metal connector, and it worked. I reminded her how that happens. She said she already knew and looked hurt because I was telling her. I said, “I know it seems like I am always correcting you. I’m sorry.” Then I said, “It must seem like everyone is always correcting you.” She nodded yes. To me this is a further indication of the small ways in which she is feeling less confident and confused about things.