Current Thoughts on In-Home Care and Caregiving

Although I engaged the services of a home care agency over three years ago, Kate’s recent decline and then her bout with COVID have led to a radical change from the past. Previously, her caregivers had little responsibilities other than being with her. That is why I have always referred to them as sitters rather than caregivers or CNAs. They engaged Kate in conversation and helped her identify people in her photo books. I always had her meals arranged for her before they arrived. Frequently, they spent time with her as she ate, but they never had to fix a meal. Neither were they involved with toileting or getting Kate dressed or ready for bed. Much of the time they were here, Kate rested.

It’s a different story now. She has been bedridden since arriving home from the hospital. They need to change her underwear, try to keep her turned (which hasn’t been successful so far), bathe her, feed her, and, if we can, to get her out of bed and into a wheelchair and back again.

Since I have been home most of the time (8-hour shifts) they are here, I take note of the things they do for Kate and the skillfulness that training and experience provide. Although some people have encouraged me to bring in more help in the past, I had relatively few challenges that I felt I couldn’t handle. That is not so anymore. In the past, I never looked forward to having the caregivers. Now I am eager to see them. So far, I have been an assistant to them while they are learning more about Kate, but in the future, I envision their functioning pretty much on their own. When that happens, my role will be that of a manager/supervisor. That will be more comfortable for me.

It is too early in this new phase of in-home care for us to have anything like an established routine. Kate has been sleeping a lot. We monitor her via an iPad connected to the web cam that I’ve had a couple of years. We frequently go into the bedroom to check on her as well. When she seems to be awake, we make an effort to turn her, change her and/or get her up.

As for meals, I take responsibility for getting them. I’ve purchased a variety of soups, yogurt, fruit as well as bread and cheese for her cheese toast. I also bring in some of her favorite takeout meals. The caregivers generally put the meals together and feed her. So far, this is working although Kate is not eating as much as she did previously. The bigger issue is keeping her hydrated. We are depending heavily on apple juice and Dr. Pepper. She likes both of those.

From time to time, I have mentioned that as situations change, I am required to think about solutions to new problems. Usually they come one at a time. Since coming home from the hospital, the problems have multiplied. It’s not that they began at home. The hospital was having the same ones. That is why they never got her out of bed until her release after eight days.

This new world does lead to creativity. The caregivers and I have tried a variety of things without much success. One thing I thought of last night involves her lift chair that I bought this past spring. I am thinking about replacing her chair beside the bed with the lift chair. If we were able to get her from the bed to the lift chair, we would be able to get her up rather easily. Then it would be only a step or two back to the bed. Since the chair reclines as well, she would still be able to rest or sleep in it as she desires. It might be of more value to move her from the bed to the wheelchair. That is also under consideration. Of course, both options depend on our getting her out of bed in the first place.

I spoke with Kate’s nurse at her physician’s practice a few minutes ago. They ordered an Hoyer lift for us. That would also facilitate getting her out of bed. That might still require a fight, but her doctor has called in a prescription of Seroquel to ease her anxiety. I will pick it up as soon as the caregiver arrives.

I am obviously in a learning mode right now. As I suggested above, my personal skills and my “toolbox” have been up to all the earlier challenges, but it is time for some new tools. That is exactly what I am doing. It’s just that some tools can be difficult to access at a moment’s notice.

Thanksgiving and the Day After

Because of the pandemic, I had expected our Thanksgiving would be different, but I had no idea that we would be so directly affected by COVID. As it turned out, however, it was a Thanksgiving for which I was truly grateful. Kate’s coming home from the hospital made all the difference in the world. The bonus was that she was much stronger than I expected and appeared quite rested.

I will say that her return didn’t go exactly the way I hoped. When I spoke with the doctor that morning (Wednesday), she said that Kate would probably leave around 3:00 or 3:30. I conveyed that to the agency. They said they would have someone at the house by 4:00. At first, I thought that might not give me as much time as I wanted to brief her before Kate’s arrival.

That turned out not to be a problem. At 4:30, I received a call from the hospital saying they were about to release her. It’s a 20-minute ride from the hospital to our house, so I was confident they would be here by 5:00 or shortly thereafter. She didn’t arrive until 7:30. The CNA was scheduled to leave at 7:00 but stayed until 8:00. My uneasiness about Kate’s getting home so much later than expected was immediately forgotten when I saw her.

Once she was in bed. I played YouTube videos that she enjoyed until after I had showered and was ready for bed. It was a lot like our lives before she left for the hospital.

Thanksgiving morning she was awake at 8:30 while I was in the middle of my morning walk. I went to the bedroom and found that she wanted to rest a little longer, so I finished my morning walk. Then I went to the bedroom where I spent the next two hours with her until 11:00 when the  CNA arrived.

Although Kate had met her the night before, I reintroduced her. Kate received her as she would a guest in the house. I told her that I thought we would need more help now and that Tisha was a nurse whom I had asked to be with us while she was recovering from her stay in the hospital. She accepted that without question and agreed that we would need the help. I don’t think, however, that she really had any concept of why Tisha was here.

I was especially pleased when we were able to get her out of bed about 1:30. By this time, she was tired and back in bed before 2:30. We put her back to bed where she remained the balance of the day.

She didn’t sleep much, however. She dosed a little but was awake in bed most of the afternoon. I thought she would go to sleep easily that night, but she was concerned about something she need to do and wanted me to help her. I could never understand what she was talking about, but her concern lasted a good thirty minutes or more. I took the approach of simply comforting her. I told her I would help her, and it might be better if we did that in the morning. I took her hand and told her I had missed her and was very happy to have her back with me. I talked about the fact we had been together so long that it didn’t feel right when we are apart, something with which she agreed. That conversation diverted her attention from whatever was disturbing her.

The next day (yesterday) she was wiped out. She rested the entire day except for those moments when Tisha changed her or tried to move her to a different position.

Two different nurses came by for intake interviews. One was from the new home care agency we are using. The other was from the Home Health agency. Apart from the information they gathered from me, they took Kate’s vitals. Neither was bothered by the fact that she was resting/sleeping so long and said we should let her rest through the day. Tisha and I did just that.

Kate was awake when Tisha left, and we spent a couple of hours watching opera videos on YouTube. It was a nice way to end the day. I was afraid that Kate would be awake all night, but that turned out not to be a problem. She went to sleep easily and slept through the night.

Today we have a new person who will be helping us. I hope she is as good as Tisha and that Kate will be awake a little more. As we’ve been doing, we’ll take it a step at a time and adjust accordingly.

Good News

I’ve made no secret of the fact that Kate and I have faced serious challenges during the past 10-12 days, but we are beginning to see rays of sunshine. My conversation with Kate on Sunday afternoon was one of those. Yesterday, I continued to see a few things falling in place that will ease our burden significantly.

Yesterday morning, I received a call from the new agency with which I have been arranging additional help for this week and in the future. They confirmed that they have someone who can be with us today through Friday and then again on Sunday while they continue to locate a person for Saturday. They will be here from noon until 8:00 p.m. each day. I chose that time period because those are the hours that Kate is usually awake. She rarely gets up before noon these days and is normally in bed by 7:30 or 8:00. As with so many other things we have faced, flexibility is essential. If this schedule doesn’t work out, I’ll change it. I also contacted our existing agency to increase from four hours each visit MWF to eight.

Of course, the best news is that Kate is coming home today. I suspect that will be this afternoon. They are supposed to call me regarding a time. She will be coming home by ambulance.

When I spoke with the hospital yesterday, they said they are recommending the full plate of services for Home Health Care paid by Medicare. I don’t know that Kate will need or qualify for all of them. We will learn about that after her assessment. I spoke with a representative yesterday. He is awaiting my call to tell him when Kate is coming home.

So, how am I feeling about all this? The truth is that I am hopeful and a little sad and apprehensive about what lies ahead. I want to think that Kate’s strength will eventually improve to her pre-COVID level, but I am not confident since she had been on a steep decline in the preceding weeks. The fact that she has been bedridden for nine days is of concern as well.

I am also uneasy about her overall mobility. Will this experience be the catalyst that makes her wheelchair bound? If so, that will be a dramatic adjustment for both of us. It would obviously make if more difficult for us to get out and about. That doesn’t mean we can’t do it. I see people in wheelchairs almost everywhere we go. If others can adapt to it, we will as well. I am confident of that.

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.

Sunday: The Story Continues

Sunday morning began with another challenge. I keep my iPad beside me at my desk in the kitchen. It is connected to a camera in the bedroom. About 8:45, I noticed that that she was sitting on the floor beside the bed. When I reached her, I found that she was relaxed and fine. She apparently had slipped out of bed while sleeping. (Recently, she has been moving around on the bed a good bit. When she gets in bed, her head and shoulders are in the right place, but her feet often hang over the edge. I move her legs over, but she invariably moves them back. I have been concerned about her falling out and have ordered a bed rail that is supposed to be delivered today.)

I immediately recalled her fall several weeks ago. That one required my calling 911 to help get her up. This time she was in a better position, sitting up with her back against the bed. It was easier but took 20-30 minutes. I put an ottoman in front of her. With a lot of coaching, I got her to put her arms across the top of it. Then with my arms under her arm pits I lifted her while she got her legs in position to stand.

I was able to get her to the bathroom and dressed, and we left for lunch about 11:45. Lunch went well, and we got home just before 2:00.

She wanted to rest and did so for almost an hour. Then she started one of her long conversations, much of which I couldn’t understand. It involved some kind of project she was working on. It’s not that I can’t understand many of her words. It’s that she mixes incorrect words and sometimes unintelligible words. The conversation lasted almost an hour and a half.

I finally distracted her by putting her robotic cat in her lap. That entertained her until we began a Zoom call with our son. That went well. As I did on our previous call, I left for 5-10 minutes while she and Kevin talked. I hope to do that in our future calls as well.

It was time for dinner after that, and we got a takeout meal. She was quiet during most of the meal but started talking about a project in which she was working. It involved helping people with something I couldn’t figure out. She was so wrapped up in this that once again, I could not get her interested in changing into her night clothes and going to bed.

I needed to take my shower, and she came into the bathroom twice to get me to come to her and continue our conversation. I told her I would come as soon as I got out.

After my shower, I was still unable to interest her in getting ready for bed.

Around 8:45, I went to her  where she was seated on the love seat in the family room. I spoke to her as though our earlier conversation had never occurred. I was cheerful, took a seat beside her, and told her I was going to read a book I thought she would enjoy. She surprised me by sitting down to listen as I read The Velveteen Rabbit. It wasn’t long, however, before she picked up one of her photo books. I told her I would read that as soon as we finished TVR. She reluctantly accepted that.

I had just started reading again when she began to look for something else to amuse her. I got the robotic rabbit. She was interested for a while but then looked for another distraction. I gave up on reading and told her it was time for bed. I told her I was going to the bedroom and invited her to come with me. She said, “I’ll just stay here a while.” As I left the room, she was talking as though another person or group of people were with her. She talked constantly after I left. I went in twice to see if I could get her to come back to the bedroom. She was very calm and said she would just stay there.

Shortly after 10:00, I wasn’t sure how much longer she might stay up talking. I remembered having a partial prescription of Trazadone. She had taken it for several years to help her sleep. With her doctor’s approval, I discontinued that in the spring. I decided to give her half a tablet and went to bed. I set the alarm on my phone for 30 minutes. It went off at 11:00.

I went back to the family room. She was still talking. I told her it was late and asked if she would like to join me in the bedroom. She agreed, and we went to bed without any further complications.

She woke up around 10:00 yesterday morning and seemed fine until I was ready to get her up. She wasn’t ready. I told her I would come back later which I did at 10:45. She was in a good mood and got up with minimal difficulty.

It was still a little early for lunch, so I gave her some apple juice and a slice of cheese toast. She ate only half of it but drank two large glasses of juice. The sitter arrived while we were at the table. It was time for me to leave for Rotary. Kate didn’t seem bothered by the fact that I was leaving. I attributed that to her not knowing me. Neither was she pleased that Cindy had arrived.

When I returned, Cindy told me that Kate didn’t eat the sandwich I had left for her lunch. She just sat there for a long time without engaging in conversation though Cindy tried to get her to agree to go to the family room. After an hour, Kate agreed. Once in the family room, she wanted to rest and was still resting when I got home.

I was able to get her up for dinner at a nearby Mexican restaurant. As we left the restaurant, Kate was too frightened to step off the curb to get to the car. Twice, without success, I moved the car to get close to the curb so that it might be easier for her. After ten minutes, we walked back to the restaurant where I asked the owner if he could help me. I got in the car and drove the car close to the curb in front of the restaurant. I was definitely close. The front tire was partially up the curb. Then the restaurant owner and I worked together to help her into the car. That will probably be our last time at that restaurant unless I can get a board to serve as a portable ramp to carry with me.

Kate was tired when we got home and was in bed by 7:30 without our encountering a problem. That was a relief.

Earlier in the day, I sent a message to Kate’s doctor through the patient portal. I described the events of the past week and talked briefly to her nurse who has forwarded the message to the doc. I hope to hear from her today.

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.