Sundowning

Among the many ways in which Kate and I have been fortunate is avoiding sundowning (sundowners, sundown syndrome), and, at this last stage of her Alzheimer’s, I began to think it was something we might not face. Not everyone does. To the best of my knowledge, my mother never did. I know my dad never talked about it. Since I visited them regularly in the late afternoon, it seems I should have had some personal observation if she had the problem.

I am also mindful that life is always changing. That is especially true with dementia. Nevertheless, I was caught a little off guard this past Friday when Kate, who had been happily resting in her recliner, became more talkative. It was more than just talking. The pace was faster than usual. It seemed like she was a bit hyper. Although it was late in the day, the thought of sundowners didn’t cross my mind. After all, I had observed this kind of behavior before and at earlier times of the day.

It was only at dinner when she spoke very sternly to her caregiver who was feeding her that I thought she might be sundowning. That was repeated numerous times before she finished eating. Her mind appeared to be focused on her own thoughts, not food. When it was time for dessert, she had her usual ice cream in which I mix her evening medicine. The dessert became her focus of attention. After that, she was back to normal, and we had a good evening.

Before the caregiver left, I told her I suspected that had been Kate’s first occurrence of sundowners and asked her opinion. She thought that might be the case. The next two days, we had similar experiences late in the day and during dinner. Each time, it was over when dinner ended.

After the three previous days, I was more prepared for a similar experience the next day. When she has been agitated before, my approach has always been to comfort her by speaking softly and slowly and conveying my love and support for her. That has always seemed to help. Based on what I had read about sundowning, I was doubtful that it was likely to work, but I wanted to try it.

Close to 4:30 when Kate became agitated and talkative. She also felt uncomfortable in her recliner and complained about pain. She wanted to get out of the recliner and go home. I kneeled down beside her and told her I would help her with whatever she needed. That had no immediate effect, but I continued my effort to comfort her. She did cool down somewhat but not completely. She was still disturbed.

The caregiver asked me if I had medications to give her for things like this. I told her the doctor had given me a prescription for Seroquel but I hadn’t used it since two days after Kate returned from the hospital at Thanksgiving. I told her I wasn’t ready to use it again. I didn’t want to resort to medication if I might have success without it.

I felt the need for something to distract her. Of course, I thought of music. I pulled my phone out of my pocket and turned on one of Puccini’s best-known arias, “O Mio Babbino Caro.” It’s a favorite of Kate’s. I’m sure it still is, but it didn’t do the trick this time.

I decided to try the Seroquel. The doctor had prescribed 1/2 of a 25mg tablet.  After giving it to her, I told her how much I loved her. As I did, I thought of another song that she likes and that I have often played for her, “A Bushel and a Peck.” I sang it along with the Doris Day recording. As I did, she smiled and started mouthing some of the words. I played it two or three more times. Then I selected a group of very familiar children’s songs from an album of 100 songs. I started with “The Alphabet Song” and continued with others like “Row, Row, Row Your Boat,” “The Bear Went Over the Mountain,” “Old MacDonald,” and “He’s Got the Whole World in His Hands.” Sundowners was a thing of the past.

We had no trouble at dinner. She happily ate everything. Midway the Seroquel kicked in. She was sleepy. As always we took her directly to bed after dinner. The difference this time was that she fell asleep immediately and slept until 9:30 yesterday morning. Normally, she is awake until 10:00 and sleeps until at least 11:00 the next morning.

Yesterday, for the fifth day in a row, Kate had a similar experience just before coming to the table for dinner. The first signs were a desire to go home and discomfort in her recliner. Again at dinner, she protested the caregiver’s effort to feed her. She ate about half of her meal before I decided to go straight to her ice cream for dessert. That turned the tide, and she was fine the rest of the evening.

Although I am unable to pinpoint the cause of these changes, she is obviously disturbed which makes me believe offering her love and comfort along with pleasant distractions have some therapeutic benefit. How well this strategy will work over the long run remains to be seen, but I am going to continue my preferred approach. I will definitely try comforting, music, and anything else I can think of before trying medication. I don’t mean to suggest that medication can’t play an important role in controlling sundowning. I just think it should be used only after pursuing other solutions. I am also going to be more sensitive to keeping her entertained late in the afternoon before dinner. It might postpone or prevent similar episodes.

Coincidentally, we had a telehealth appointment with Kate’s doctor yesterday afternoon. We talked about this, and she reinforced my suspicion that something other than medication is a reasonable first step in addressing the problem.

Recovering and Declining At The Same Time

Kate’s recovery from her experience with COVID and her hospitalization is progressing. We are working our way into getting her out of bed almost every day now. The process doesn’t go as smoothly as I would like, but she is getting more accepting of our (the caregivers’ and mine) role in helping with her physical and mobility needs. That makes life a little easier for her and for us.

Sometimes it takes as long as an hour or more for her to reclaim her cheerful self after we get her up. The other day someone said, “At least they forget quickly.” That may be so if we are talking about her memory for specific incidents that may have annoyed (angered) her. On the other hand, I believe her senses can hold a feeling for a while.

Now that she is recovering from COVID, I notice differences that reflect her decline from Alzheimer’s. Some of that started as long as 6-12 months before getting the virus. One of those I haven’t mentioned involves her salivation. Four years ago, she stopped swallowing her saliva during most of her waking hours. That required my keeping paper towels or napkins in the car all the time. All our servers were sensitive to this and provided extra napkins for her. It declined a little after a 2-3 years, but now appears to have stopped completely. I don’t have a good explanation for it, but it correlates with other things that have changed.

Some of that involves her food preferences. She has never liked onions, but she eats them now so long as they are cooked. She doesn’t realize she is eating them. Similarly, she never liked coconut. Now one of her favorite soups is one we have gotten at a Thai restaurant. It contains a broth made from coconut milk. During the pandemic, we have used a caterer for meals once a week on Friday night. She sometimes includes a homemade version of a Mounds chocolate bar. Kate loves them.

Other changes make me feel sad. For years she has taken great pleasure in the beauty of trees, plants and flowers. Now she rarely comments on them when she sees them. Even when I pick up a plant and show it to her, it doesn’t invoke the same excitement it used to.

More troubling is the fact that she seems to be losing her interest in her photo books and other family pictures even those of her mother. She still maintains a strong feeling for her mother when she talks about her, but it has been weeks since she has expressed much interest in photos of her. Yesterday was a notable exception. We spent about thirty minutes looking at the “Big Sister” album her brother Ken made for her almost three years ago. She enjoyed every minute until she felt tired. If this decreasing interest in her photo books continues it will remove one of the most valuable “tools” in my “Caregivers Toolbox.” I have used them many times to entertain her or to shift her mood.

On a more positive note, it’s been a long time since she has awakened in the morning and felt afraid. I can’t believe that this is a because she wakes up clear-headed and knows where she is, who she is, etc. She just seems not to be bothered by it the way she used to.

The highlight of our day comes after the caregivers leave around 7:00. I usually get in bed with her and watch some of the evening news. While I take my shower, I turn on music videos for her. After showering, I return to bed with her, and we watch YouTube together and chat. She is perfectly at ease, and I treasure these moments.

Delusions, COVID, and Recovery

Like many others with dementia, Kate has experienced delusions. They became more frequent over the past year. With the arrival of the pandemic and sheltering, they increased significantly. I attribute this to the fact that her life was less stimulating. I tried to compensate by entertaining her more at home, but we were still more sedentary than before. As a result, she started taking breaks to rest. Upon waking, she often experienced delusions. By the time she and I had our personal experience with COVID, they occurred during a significant portion of each day.

Once she had the virus, however, they disappeared. Overall, she was simply weak and didn’t talk much. It’s been four weeks since she came home from the hospital. She was gradually recovering but still wasn’t having any delusions. That changed last week when she experienced her first one since contracting the virus. They have become more common since. Night before last, she spent about forty-five minutes talking to me about a delusion that involved a group of people who were with us. As happened so much in the past, she thought we were in a hotel or lodge and had plans to do something with the others the next day.

This has caused me to have an unusual feeling. I had always interpreted the delusions as a sign of her decline from Alzheimer’s. Suddenly, I found myself viewing them as a sign of her recovery, not to her pre-Alzheimer’s self but to the way she was before getting COVID. It might seem strange, but I am happy to see this change. It is far better than the way she had been under the influence of the emotional and and psychological impact of the disease.

Her delusions represent signs that the effects of COVID are diminishing. She is also talking more and expressing more signs of happiness. These are encouraging signs. I just wish her recovery were faster.

Making Progress, But Not Out of the Woods

I am encouraged by the progress that Kate has made in the past week. One of the areas in which she has improved significantly is eating. She is now eating more “regular” meals and in greater quantities than she did the two weeks before. We went from one scrambled egg to two in addition to yogurt in the morning (actually close to noon). We had been relying heavily on soups for lunch and dinner. Now, we are getting her the same takeout meals that I get, and she is enjoying every bite.

Just as important to her caregivers and me is that she is protesting much less when changed. That doesn’t mean she likes it, far from it. She still tries to push us away from her, but her screaming and yelling has almost disappeared. It only comes at the moment we move her. For example, once moved to her side, she is quiet. It still helps that I am almost always with her. I continue to hold her hands to which she holds tightly. Two or three times I have put my arm around her and asked her to give me a hug while the caregiver pushes her over with one hand on her thigh and the other in the middle of her back. That way Kate turns very easily and we continue hugging each other until the caregiver finishes.

I must admit to a touch of sadness when I see her submit to us like this. She doesn’t like what is being done to her but has just given in. I wouldn’t like it either. It doesn’t take a long time, perhaps 10-15 minutes. Yesterday, however, the caregiver bathed her and also changed the sheets. The whole process took almost an hour. I think Kate and the caregiver may have handled it better than I did.

We are making the most of the Christmas season. As I did last year, I called on the woman who attends to our shrubbery to decorate the inside of the house using the decorations Kate has collected over the years. In addition, we have tuned in to YouTube much more than we have before. Yesterday, for example, we played Christmas music on the TV in our bedroom from noon until 8:00 last night. One of our caregivers also found a more beautiful fireplace video that shows a large portion of a nicely decorated seating area of a lodge with a large tree and a grand fireplace. I don’t know that Kate likes it any better than the one I had found before, but I do.

Our daughter, Jesse, was in town Saturday through Tuesday morning. It was a good visit for all of us. She felt Kate was much better than she had expected. She also had time to get acquainted with the caregivers who were here during that time. She was impressed with them and felt I was in good hands.

We had an especially touching moment on Sunday night when she joined us as I read The Velveteen Rabbit. I don’t believe I had known the book is a favorite of Jesse’s. As I read, Kate took Jesse’s hand in her right hand and mine in her left. She squeezed them periodically as I read. She still doesn’t talk a lot, but she is feeling and expressing her emotions.

Over the past week (until last night), we’ve had other wonderful evenings after the caregiver leaves. Kate has been relaxed and enjoyed the Christmas music and an almost nightly reading of The Velveteen Rabbit. Two nights I also read Love You Forever.

Not everything has gone the way I would like, but I think that is natural for someone who has experienced the kind of trauma she faced. The most significant thing is that she still has not gotten out of bed. We have talked about it, and last week, the physical therapist was able to get her sitting up for a few seconds. She came again on Tuesday, and Kate was too lethargic. That wasn’t too long after the caregiver had changed her. It sometimes takes her a while to recover. She is coming today, and we will try again.

As I mentioned above, our nights have gone very well until last night. She was a little upset when we changed her, but she seemed cheerful afterward. After the caregiver left, we watched a band concert in San Antonio in which our youngest grandson was playing. Her mood changed during that time, and she didn’t talk to me the rest of the evening. I even read The Velveteen Rabbit and didn’t get much response at all. When I reached the end, I thanked her for letting me read it and that I like the story. I was hoping to get her to say the same thing, something she almost always does. This time, she was silent.

This morning around 9:30, I noticed that she was running her fingers through her hair and went to see if she was awake. She was, but she didn’t speak to me at all. I went back to the kitchen and mixed her morning meds with yogurt and took it to her. She took it easily. Then I brought her some mandarin oranges. She ate a good serving of those. I took the dish back to the kitchen, and when I returned, she was asleep and still is at 11:30. I hope when we wake her shortly that she will greet us with a smile.

Our First Crisis

As noted in a post last week, I have been having greater difficulty getting Kate out of bed for the past few weeks. That became a more serious issue this week and represents our first real crisis. Here’s the story.

Wednesday or Thursday of last week, I noticed Kate was coughing periodically. Then I felt the first signs of a sore throat Friday night. The next morning my throat was worse. I recalled that a sore throat was one of a number of symptoms of COVID. I decided to be tested and went to a nearby pharmacy that afternoon.

Sunday.

I felt better and began to think that I simply had a traditional sore throat. This reinforced my belief that it might not be COVID. I hadn’t had any other symptoms like fever, congestion, or any breathing difficulties.

Monday,

I was beginning to believe I was out of the woods, but I wasn’t able to get Kate out of bed.  I had already cancelled my help for Monday afternoon because we were on quarantine after getting the test.  She was very weak and couldn’t help herself, and I was unable to do it alone. I called 911 to send someone to the house to get her up, to the bathroom and back to bed.

Tuesday.

Tuesday I felt like I was recovering from a cold. I was encouraged, but I had to call 911 again for help getting Kate to the bathroom. It was late in the day when I received the news that I tested positive. That was a low blow that began a crisis that hasn’t been solved; however, I had already contacted her doctor on Monday and continued be in contact with them several times a day.

Given Kate’s weakness and that my problem getting her out of bed might worsen rather improve, I also contacted the agency that provides the regular help I have on Monday, Wednesday, and Friday. I asked if they could find someone to help on Tuesday and Thursday. They said they would  try.

Wednesday

I made an effort to get Kate up between 11:00 and noon. Once again, I could not get her out of bed. She was very weak but was able to speak clearly to me, something she wasn’t able to do the day before. Based on her doctor’s instructions, I had been checking to see if her breathing was labored. She was all right, but at 1:15, I thought she was breathing a little more heavily. I talked with the doctor’s nurse who listened and said she would get an opinion from the doctor who said to take her to the ER.

I called 911 to take her to the hospital. It was difficult even for the two ambulance attendants to transfer her from the bed to a wheelchair and finally to the cot in which she rode to the hospital. This process was painful for Kate and for me as well. It was awful to see how frightened she was to be hauled away by two strangers and having no idea what was happening and where she might be going. As they put her in the ambulance, I couldn’t help wondering if that might be the last time I would see her even though there were no life-threatening signs at the time. She certainly didn’t show any lessening of strength as she tried to fight.

That afternoon I called our agency to inform them of Kate’s diagnosis. That meant they will not provide any help for us next week. It will be Monday of the following week before they can send the regulars back and any added help for the other days.

At 6:00, I spoke with the doctor who had replaced the one on duty when she arrived. She told me that Kate’s vital signs including her breathing were normal. They had drawn a sample of blood and sent it to the lab and would know later if they found any problem. She also said they were going to send her to a Step Down unit or floor where she would be put on a heart monitor.

At 10:00, I spoke with the nurse in the Step Down unit. She confirmed that Kate was there and that she was resting comfortably.

I ended the day with serious concerns about what I would do for help when she returns home.

Thursday

At 6:00 that morning, I called to check on her. Fortunately, her nurse answered the phone. She told me Kate had eaten breakfast and had a bath. She also mentioned that Kate was enjoying the music they were playing for her on the TV. I was pleased to hear that because I hadn’t mentioned the importance of music to her.

During the morning, I placed phone calls to our current agency and the new agency that I am talking with. I got encouragement from the new agency and hoped to hear back before the end of the day if they might be able to help us.

I received a call from her Step Down nurse at 5:00 telling me they were transferring her to a new floor that should be her last room change. She also gave me the new room number as well as the phone number for the nurse’s station. This was just the kind of nurse a family member wants. She seemed informed on Kate and very compassionate toward Kate and to me. She didn’t make me feel I was intruding on her time to ask how Kate was doing.

At 9:45, I called the nurses’ station to make sure Kate was in her new room and how she was getting along. Her nurse said Kate was already in her room when she arrived at 7:30. Kate was very confused – didn’t know her name, where she was, and was hard to understand. I told her that was not new with COVID. I see that frequently. In a sense, she is at least somewhat confused all the time but not always to the same degree. She knew that Kate has Alzheimer’s but didn’t seem to know any more than that. I gave her a brief background so that she would be able to put in context the behavior she was observing.

Friday

I spoke with her again this morning before she left at 7:30. They gave her a light does of Atavan to control her agitation, and Kate slept well during the night. Last night, I began to wonder if they had all her medications. I had assumed so because Kate’s full medical records are available to the hospital, but things don’t always go the way they are supposed to. I was especially concerned because we have made several recent changes. The nurse asked me to call back later when the new shift had had time to be briefed do some of their initial duties after check in. I plan to do just that.

I feel I should comment on how I am feeling. The best general answer is that these have been the most stressful days since we began “Living with Alzheimer’s.” Nothing else that has happened over the past ten years compares. It isn’t simply my reaction to Kate’s having the virus. It is what she has had to go through to get help. She is frightened by many little things like the noise of ice dropping the ice making into a glass. Being hauled out of bed and being transferred from bed to the ambulance to the hospital and three different rooms with different people must have been traumatic for her.

Beyond that, the biggest problem I now face is what to do for her when she is released. Our agency will not provide care for her until 10 days after her diagnosis. That means no help at home next week. I am talking with another agency that looks like it may be willing to fill in, but finding additional help is a challenge for all home care agencies in our area.

I had a conversation with our daughter, Jesse, last night. She has offered to come from Virginia although she and I want to make sure that Kate and I are definitely free of the virus before she would do that. In the meantime, I have also spoken with the care coordinator at the hospital about options for Kate. We will be talking again soon, I hope.

The good news is Kate’s vital signs and blood work show nothing abnormal. It seems that both of us have mild cases. Her symptoms have been a cough and weakness. For her, weakness is the major problem. She had started this before the virus, but I feel the virus exacerbated her decline. Once she is well, she may be somewhat stronger, but I suspect that she may continue to weaken. There are some things we cannot avoid.

Kate’s overall decline has been more dramatic this year and has taken a more significant drop in recent months and even weeks. January will mark the tenth year since her diagnosis in 2011, and we had observed the first signs at least five years before that. We have been very fortunate to have lived so well despite her Alzheimer’s; however, neither of us was ignorant of this part of the journey. I am not happy to be where we are right now but very grateful for the joy we have experienced in the past. I also believe we will have more “Happy Moments” together in the future even though the remaining time is likely to be punctuated by more troubling experiences like this one.

 

Sunday Incidents That Are Hard to Predict

I’m not sure at all, but it looks like Kate might be moving toward a schedule to sleep later on a more regular basis. That may relate to the fact her doctor put her back on Trazadone to see if we might be able to stop her erratic sleep pattern and, possibly, the recent trouble I have had getting her ready for bed. It’s too early to tell, but she has slept later everyday since starting her Trazadone.

There are always other things that get my attention and deserve an appropriate response. Yesterday, I got her up about 12:45. She was in a good humor and got up rather easily though getting her out of bed is beginning to be a problem. It is hard for her to sit up on the side of the bed, so I hold her right hand with mine and put my arm around her back just below her shoulders. It isn’t as easy for both of as I would like. It’s tough to lift her with my arm under her back, and Kate doesn’t like my doing it. She screams as she reaches a sitting position. This may be a problem with arthritis, but she only complains of it in that moment.

Once she was ready, we were off to pick up a takeout lunch from Andriana’s where we usually eat on Sunday. Everything was going well until getting home. So well, I didn’t expect what would happen next. When I opened her door to get out of the car, she sat there as though I were going in the house by myself. I said, “Let’s get out of the car and eat our lunch.” She didn’t say anything. She just sat there looking straight ahead. I extended my hand and asked her to take it. She was silent. For a couple of minutes, I tried to interest her in going in the house with me. She told me she would just sit there. The look on her face told me she was bothered by something (likely “someone”) that she thought was inside. I asked if she could tell me what was wrong. She gave her typical reply, “I don’t know.”

As usual, I didn’t push her. I just told her I would go ahead with my lunch and to call me if she wanted to come in. I went in and set the table for us and got drinks ready. Then I went back to see if she would like to come in. She came with out a problem. She didn’t seem disturbed once inside, but she ignored the food on her plate. I always cut her meat, use her fork to pick up the first and gave it to her. She liked it. I got another piece and placed the fork on the table and told her she could enjoy the rest. For several minutes, she didn’t eat or drink anything. She just sat there. I asked her about it. She asked where it was. I told her it was on her plate right in front of her. She made no effort to eat. I made several more efforts, but she just sat there. She seemed all right except that she wasn’t talkative and made no attempt to eat.

I went ahead with my meal. I had a salad first. When I finished it, I got up to rinse out the container in which it came. I walked to her and fed her another bite. She ate it. When I asked if she liked it, she said she did. On the way back to the table, I stopped and fed her another couple of bites. She ate them willingly and seemed to enjoy them. She didn’t eat anything after that.

I finished my meal and cleaned up and returned to the table to sit with her. As I had done before, I gave her several more bites. Then I sat with her for the rest of the meal. It must have been 5-10 minutes before she took her first bite, but she continued to eat until there were only a few bites left.

When she was through, I asked her to come with me into the family room where I wanted to show her something. She didn’t respond. It was just like she was in the car. She just sat there without saying anything or making any effort to get up. I told her I was going to the family room and told her I would like her to join me when she would like.

She remained there for about thirty minutes when I went back to ask if she could join me, and she accepted. We looked at one of her photo books a short time before having Zoom call with our daughter and son. She said very little while on the call and closed her eyes for most of it.

She surprised me again when I ordered a takeout meal and asked her to come with me to pick it up. It was one of her passive-aggressive responses. She wasn’t rude or hostile. She just said she wasn’t going. She was right. I phoned and cancelled the order.

We weren’t that hungry anyway because we had eaten so late, so we skipped dinner and retired for the night. We got in bed and watched a series of YouTube videos of musical performances and enjoyed them together. It is unusual for us to watch TV in bed, but I just thought it would be nicer than sitting in our chairs. It was a great way to end the day.

Mixture of Positive and Negative Experiences

About 10:00 yesterday morning, I heard Kate say, “Hello.” Via my web cam, I could see that she was sitting up in bed. When I got to the bedroom, I found she was in a cheerful mood but was having another delusion. The only thing I could understand was that it involved teaching in some way. I listened to her for almost thirty minutes before seeing if she was ready to get up. She wasn’t and let her lie down and told her to call me if she needed anything.

At noon, I checked to see if she was ready to get up. I was careful not to move too quickly so as not to cause her to resist. I was able to get her up and to the bathroom where I encountered my first problem. She wouldn’t sit on the toilet. I shifted gears and told her she could brush her teeth. When she finished, I tried again to get her to use the toilet. That didn’t work, and I took her back to the bedroom to help her dress.

When I asked her to take off her soiled underwear, she refused. She wanted to know why. I explained that she needed to put on clean underwear before getting dressed. She never agreed. Then she wanted to lie down. I decided the break might be a better. If she could rest of sleep a little longer, she might respond differently when I tried again.

That worked. I was able to get her up at 1:30. I didn’t have any problem getting her to the toilet and dressed. She was in good humor at lunch. After lunch we spent the balance of the day until time for dinner looking at her photo books. It was a very bright spot in our day.

This is not to say there were no problems. I don’t think I have adequately conveyed how difficult it is for her to understand instructions and explanations or the seriousness of her vision problems. When I gave her a sandwich and a cup of apple sauce, she didn’t know what they were or what she was to do with them. My explanations were only minimally effective. I was only able to get her to eat her sandwich by picking it up and putting it to her mouth. It was similar with the apple sauce. In that case, she only ate what I spoon fed her and nothing more. Part of the reason is that she doesn’t remember what is in front of her, but it also relates to not seeing it.

We ate out for dinner. After parking, she didn’t want to get out of the car to enter the restaurant. She didn’t respond with a verbal refusal but a passive aggressive one. She just sat in her seat while I held the door open with my hand extended to assist her. It took my repeated encouragement to get her to step out.

As we entered the restaurant, we turned to the right to walk past a line of booths. I had already turned down a seat at one of them because there is a step up of about four inches. When I can, I try to avoid things like that because Kate can easily trip. I didn’t think about a problem as we turned to follow the hostess to our table. Her right foot hit the corner of the first booth, and she screamed. She wasn’t in danger of falling, but she was frightened and definitely got the attention of those in the dining room.

We did not have our normally pleasant dinner. She was rather subdued and out of touch with what was happening around her or in front of her on the table. As I always do, I buttered her bread and placed it in front of her. When I saw that she wasn’t eating it, I asked her about it. She couldn’t see the bread on her plate. Similarly, she didn’t begin to eat her food after it was delivered. I had to feed her several bites of her entrée  to get her started. We haven’t been eating many desserts lately. I decided she might need a treat and ordered one. She didn’t know what to do with it. Again, I had to feed her the first couple of bites. She expressed no pleasure and ate very little.

Once we were home, I gave her a photo book to look at while I caught some of the evening news and then my shower. She took interest and spent almost an hour looking at it. She was confused, however, and asked me to help her understand it when I got out of the shower. I told her I would be happy to do that.  After my shower, I suggested she get into her night clothes and the two of us could look at it together.

She was cooperative. I don’t think that had anything to do with my telling her I would look through the book with her. I think I just hit her in a cooperative moment. We spent about thirty minutes looking at the book. Like our afternoon, it was a Happy Moment together. When I suggested we go to bed, she accepted without a problem.

A Week of Challenges

If you’re a regular visitor to this blog, you have no doubt noticed the long delay since my last post. There are good reasons. Apart from the temporary focus on our recent election, they all involve Kate’s changes that have consumed more of my time. Here is an outline of what happened.

I’ve commented numerous times on Kate’s morning confusion. Sometimes, her response is uneasiness or fright. Until last week, that has been infrequent, and I have been able to get her up. Once she is up, her uneasiness subsides in a short time (10-15 minutes). Periodically, I have also reported that she has refused to get up in the morning. That happened four consecutive days last week.

She had a good day on Monday. She was in good humor and didn’t rest much at all during the day. In fact, I was surprised that she got up early enough for breakfast the next morning. It wasn’t long after that when she rested for 30-45 minutes. We started to look at one of her photo books before she wanted to rest again. This didn’t seem strange because she had lost so much sleep the day before.

The problem occurred when I couldn’t get her up for lunch. I didn’t push her at all but periodically checked to see if she was ready to get to dinner. She awakened periodically during the time she rested and seemed very relaxed. Then she went back to sleep. She was ready to get up about 4:15. We went out to dinner. She went back to sleep right after getting home. That made me think that she would be up early yesterday, but I was wrong.

Not only did she not get up early, but she didn’t want to get up at all. I tried to get her up starting at 11:30. I hoped that I could get her up in time to eat lunch before the sitter arrived at 1:00. She was uneasy, but I got her up. Things fell apart when we got to the bathroom. She wouldn’t go in. It often takes encouragement to get her to use the toilet. She was adamant about not going into the bathroom and insisted on going back to bed.

I tried one or two other times to get her up before deciding to let the sitter handle it. The sitter tried several times before succeeding after 2:30. Thursday and Friday brought variations on this same theme. I was able to get her up before 1:00, but she was very resistant. She was scared and kept saying, “I can’t.” I repeatedly encouraged her and told her I would help her (something I always do anyway). Both days I got her into a sitting position, but she wouldn’t stand up. She sat on the side of the bed between 30 and 40 minutes each day before I was able to help her stand and go to the bathroom.

In addition, getting her to bed is becoming a problem. For a long time, she has been getting ready for bed between 7:15 and 7:30. Several weeks ago, she didn’t want to get ready that early. That broke a well-established pattern, and it started requiring more time and effort to get her to change into her night clothes. That was especially difficult two nights last week. I won’t go through all the details, but here is what happened Friday afternoon and evening.

Although Kate was slow getting up, she lighted up when the sitter arrived. They were having lunch together when I left. She was disappointed I was going but handled it well. When I returned, she and Mary were talking. Kate hadn’t rested at all while I was gone. She was tired and rested about twenty minutes before we left to pick up our dinner. She was very talkative when we went to the bedroom after dinner. She was delusional but happy. I listened to her for almost an hour before attempting to get her ready for bed. I was successful getting her to the bathroom, but she was hostile and refused to get into her night clothes. I decided it was not worth it to try any longer, and she went to bed in her clothes.

Saturday was a good day. She was up in time for me to give her a shower before going to lunch. We had a pleasant afternoon and had no trouble that night.

Yesterday (Sunday) brought other problems. I’ll comment on that in my next post.

So, How Are Things Going?

It’s very hard for someone who doesn’t live with a person with dementia to grasp how far one has traveled on this journey. I know that was true for me. I am sure my dad noticed signs of my mom’s dementia years before I was aware.

I believe the typical image of a person with Alzheimer’s is heavily influenced by our perceptions of the last stage of the disease. Before that, many people don’t recognize the dementia at all or fail to understand how far the disease has progressed. Kate was diagnosed almost ten years ago, but it is only in the past 2-3 years that it has been more obvious to those who spend little time with her.

That is what prompts me to write this particular post. We have crossed another milestone on Kate’s journey. It is easier now for people to tell that she has Alzheimer’s. That is true even for people who are with her a short time. Having said that, I don’t believe many people would recognize just how far along she is. I see it because I am with her so much. That gives me many opportunities to observe how she functions. Overall, her changes have been very gradual, but they have been much more evident even in the past month or two. It even seems like she has changed a lot in the past two weeks. Let me summarize a few of the things that make me say this.

First, and foremost, she has reached the point at which her rational thought/abilities have almost completely vanished. By that I mean her memory for names, places, events, and processes (how to do things) is at a disturbing low point.

Simultaneously, her intuitive thought/abilities are on high alert. Her experience of joy, sadness, fear, and anxiety are more evident. The fear and anxiety are troublesome to me as well as to her. On the other hand, all the positive emotions related to her to her senses bring intense moments of pleasure as well. Sometimes we experience a mixture of both good and bad.

Two days ago, I helped her up after she had rested. She was confused and uneasy. She knows something is seriously wrong with her, and it was evident. I looked in her eyes and said, “I love you, and I want you to know that I will always be here to help you.” She cried, and we embraced. It wasn’t that the underlying problem was solved, but she was comforted. It was touching moment for us, and we were able to move on.

For a long time, she has been insecure, but that has increased considerably. She has always wanted to do the “right thing.” Now that her memory is gone she doesn’t even know the right thing. When I give her choices like “Would you like to get up now or rest a while longer?” Her typical answer is “I don’t know.” It is evident in the morning when needs instructions on everything she is to do in the bathroom.

She often doesn’t recognize her napkin and wants to know what to do with it. When I tell her she can’t understand what I have said. When we eat out, I generally put the napkin in her lap. Invariably, she removes it. She often wants to use it as a placemat. When that happens, I simply ask the server for another napkin. She never remembers what she is drinking or if the glass is hers.

The most obvious sign of her insecurity is her hesitation when walking or sitting down. She walks as though she is blind, very short shuffle steps without lifting her feet very much. Any change in elevation is a problem. Naturally, that involves stairs, but it also includes small variations like flagstone walkways, or any surface with color variations that she perceives as differences in elevation.

I have long heard that putting a black carpet or doormat in front of a door can prevent wandering outside. It is only recently that I have observed this phenomenon with Kate. She is very cautious about stepping where there are contrasting dark and light surfaces. We have a dark blue rug with a white border in our bedroom. She is now very cautious when we enter the bedroom. She is careful to step over the border.

It is often very difficult to get her to see things I want her to notice. That comes up most frequently when we are eating. I always cut her food for her and usually put a bite on her fork and place it right in front of her on her plate. When I try to tell her where her fork is located, I almost always fail. Even when I pick it up and attempt to put it in her hand, she has a hard time understanding what I want her to do.

At lunch the other day, I noticed that she hadn’t eaten any of her rice, something that she usually likes. I mentioned it to her. She couldn’t see it, and none of my explanations helped. I finally picked up her hand and let her feel it.

It is very difficult to predict what she will be like at any moment. Quite a few times, I have mentioned this in connection with her sleep. Sometimes she sleeps or rests in bed far beyond her wake-up time. Sometimes she gets up very early. In itself, I don’t think of that as a problem except for me to adjust my daily routine. The relevance is that it is another sign of change in her condition.

Along with that, she experiences far more delusions than ever before. Sometimes I feel as though her day is one of delusions, and they are positive and negative. We can have great conversations when she is in a cheerful mood although I often don’t understand much or any of what she says.

Unfortunately, she has more negative delusions now. They usually involve things that seem minor to me but very important for her. The most typical is believing there are people in our home, and we are preparing to go out, or do something, with them. She is very concerned and often relieved when I tell her “it’s just the two of us” except when she doesn’t accept that or forgets moments after I tell her.

Another significant change is in our relationship. She is more likely to experience moments when she doesn’t recognize me at all. In some of those moments, she doesn’t immediately feel comfortable with me although she becomes more at ease in a very short time. There are times when she is experiencing anxiety and wants me but doesn’t recognize me. She will say, “Where is Richard?” or call to me by name as though I am in another room. Another interesting thing is that she sometimes refers to herself as “she” and to me as “he.” This can be confusing. At first, I was quick to ask who she was talking about. She can’t answer that, but I’ve learned through experience that “she” and “he” are “we.”

All of this is to say that our world has changed substantially. “Living with Alzheimer’s” is definitely more challenging these days. I am grateful for the good run we have had and that we continue to share so many “Happy Moments.”

An Unusual Saturday

I never know when Kate will be ready to get up in the morning. More often than not, it’s between 11:00 and noon. That means having our lunch rather than breakfast after she is dressed. That happens often enough that I have my own morning plans. When she awakes earlier, I just shift gears. That’s what happened Saturday morning.

I had just finished in the bathroom and was going to the closet for my clothes when I heard Kate say, “Hello. <pause> Hello?” It was just before 7:00. I walked over to her bedside and said, “Hello, I’m glad to see you.” She said, “I’m so glad you are here.” She was very uneasy although not as frightened as she is sometimes. I asked her what was wrong, and she said, “I don’t know.” We spoke a few minutes, but she was unable to tell me what the problem was. Then she said, “I’ve got to get out of here.” I told her I would be glad to take her.

At that point, I figured that if I could get her up and dressed, she would begin to feel more at ease. Then she might be fine. That didn’t work. She got up easily, and we got to the bathroom. She refused to use the toilet or to brush her teeth. She just wanted to get out. I asked her to take off her night gown. She didn’t want to. I explained that if she wanted to put on her clothes, she needed to take it off. She still wanted to get out of the house and soon agreed. We were in the car a few minutes later. I turned on the second movement to the Brahms Violin concerto, and we didn’t talk at all. She settled down.

My intention was to drive around for 20-30 minutes and then return home for breakfast. On the way, I saw a new breakfast place near our house and thought it might be nice to try it out. I drove a little longer before asking Kate if she would like to stop someplace for breakfast. She said she would. I turned around and went back to the new restaurant. She was fine, even cheerful, and we had a good, but heavy breakfast. The ride and music had done what I had hoped.

We were home by 9:00. It was no surprise that Kate wanted to rest and did so for almost an hour while I took a walk. By that time, she was ready for the bathroom. Then we sat down on the sofa to look at one of her photo books. We hadn’t gotten far before she wanted to rest again.

She rested for over two hours and was asleep most of that time. About 1:15, I asked if I could take her to lunch. She wanted to rest a little longer. I tried several times over the next hour and a half. Still no luck. I had been playing very relaxing music for her and shifted gears to something more lively around 2:30.

That didn’t have any effect either; however, I was able to rouse her at 3:15. I decided to go out for an early dinner. We arrived at the restaurant at 4:15 and had a pleasant meal, and the evening went well. We hadn’t followed anything like a normal day, but everything was fine. It pays to be flexible.