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One of Those Days

Kate and I have many good days, but not always. Sunday was one of those exceptions. It began around 9:00 when I got a call from the agency that provides two of our three caregivers. The one who was to come was sick, and they were looking for a replacement. They had identified someone who might be able to take her place, but she would be on overtime, and they wanted to know if that would be all right. I gave my approval.

A little later, I received another call telling me that person couldn’t come. After we hung up, I called them back to say that if they couldn’t get someone for the whole day, I would be happy to have someone for a short time to help me get her up for the day and return later in the day to help me get her to bed.

They found someone who could come under those conditions and that she would not be on overtime. They let me know that she was inexperienced and would need my help if I were agreeable. Since I’ve been an active participant in Kate’s care, I agreed.

When she arrived, I learned that she had been in training as a medical technician. She had taken a temporary position with the in-home care agency to make a little money before continuing her previous educational plans. It didn’t take me long to find out that she was not skilled in the kind of care Kate requires. She wasn’t good at changing or dressing someone in bed, and she had never used a lift for a patient.

This was not an ideal situation, but I began optimistically with the thought that I might have learned enough to make things go smoothly. I think of myself as a pretty good assistant to our regular caregivers, I quickly learned how unskilled I am in direct patient care and training of other caregivers. Trained and experienced caregivers clearly handle situations like this without any great difficulty. I won’t go through any of the details, but it took us at least twice as long to get Kate up and in her wheelchair. Fortunately, using the lift went more smoothly.

In addition, Kate was more confused and not as cheerful as she is other times. I’m not sure that I have mentioned that for the past 4-6 weeks she has had more experiences when she doesn’t recognize me. That normally disappears after I give her my name and tell her some of our history (where we met, falling in love, having children, that we have been happily married more than 58 years, and that I love her dearly ). After that, she usually responds to me as though she knows me. It usually lasts for the rest of the day or at least a few hours. On Sunday, she asked, “Who are you?” off and on until we retired for the night.

I’ve frequently mentioned that I like routine. This was a day that was far from that and, therefore, somewhat uncomfortable for me. That was particularly true in connection with the difficulties with a substitute caregiver. I had become comfortable and dependent on our regulars. A new and unskilled caregiver was an abrupt change.

Despite that, there are good things to report. For the first time, I took Kate for ice cream without a caregiver. We went down the main hallway that is officially named “Main Street.” Our building is at one end, and the café with ice cream is almost at the other end. It was a nice stroll and a treat to enjoy time to ourselves.

After the caregiver left that night, Kate and I had another good evening. At first, she couldn’t remember who I am. I gave her my routine explanation a couple of times and ended by telling her how much I love her. That seemed to stick. We watched YouTube videos with music by The Kingston Trio and The Brothers Four. The day ended well as it always has.

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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.

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A Day of Anticipation That Ended in Disappointment

Yesterday began with a meeting with the owner of the new (to us) agency that is providing the help this week and in the future. This will be in addition to the three days a week now covered by our current agency. We had a good meeting. I feel very comfortable with them. That is especially true after my interaction with three of his staff last week. He was here about an hour. During that time, I gave him background on Kate and showed him the key areas of the house with which he and his staff should be familiar. He had a CNA prepared to be at our house at noon, but we decided I should call him as soon as I heard that Kate was being released. The nurse and the CNA were to head to our house for a brief orientation and to be present to greet Kate upon her arrival.

In the meantime, that gave me time to make a few preparations. When Kate’s mother lived with us, we had bought a steel ramp that we used to make it easy for her CNAs to get her down the two steps from our family room to our patio. Her mother passed away in 2005. It has been stored in our garage since then. Although it is very heavy, I was able to slide it across the floor of the garage and lift it in place on the top of two steps into the house.

Word about Kate’s hospitalization had gotten around, and I received a number of phone calls and emails offering support. This is the first time I have ever been in this position. I quickly learned something that I had only thought of before when it was someone else in our position. Some people hesitate to call because they may catch me at a bad time. My personal feeling as a recipient of such calls is that they are welcomed. I did have to cut short two or three when I received a call from the hospital or someone else with whom I was coordinating Kate’s return. I found the conversations themselves to be therapeutic. They also filled my day as I was somewhat nervously, but eagerly, waiting to see Kate for the first time in six days.

Shortly after 3:00, I received a call from Kate’s doctor at the hospital. She began by telling me it was her first time to see Kate and was trying to get a clearer picture of her “baseline” before COVID. I filled her in on the fact that she had been declining recently but had been able to stand and walk and was eating well. I explained that COVID had pushed her over the edge, and she had been very weak.

Then she told me that one of the things they had been monitoring involved a measure of muscle tone or strength. I wasn’t too clear on this, but it related to her ability to walk.  The measure had gone up to 700 from 200. The doctor thought it might have something to do with hydration. Kate has been on an IV to keep her hydrated, but she pulled it out the night before. They want to try again and see if they can improve the numbers before releasing her. She went on to convey that she didn’t want my expectations to be too high for her immediate recovery.

This was a gut-wrenching way to end a day of anticipation of Kate’s being back home with me. Perhaps, I will get better news today.

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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.

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Update on Our Recovery

I’m glad to report that I’m almost fully recovered. I haven’t had a sore throat the past five days, and I’ve never had any other symptom.

Kate’s situation is much different. She hasn’t had any of the other typical COVID symptoms, but she is still weak. She has slept most of the time she has been in the hospital. The first day she enjoyed her breakfast, and talked to the nurse. The nurse had turned on the TV to a music channel, and Kate enjoyed it. I was happy to know the nurse had thought of this because I hadn’t said anything about the importance of music.

The hospital’s biggest problem with Kate is that she fights them every time they move her. That happens a lot – when they turn her from her back to her side and back again. They have been bathing her, but I believe they are all bed baths because it would be such a struggle to get her up. I know they have not gotten her up to walk, and that is at least partially because it would be so traumatic for her.

Kate is a very gentle person. This behavior is not consistent with her personality. I think she is simply scared. I try to imagine what she might be thinking. I’m sure she doesn’t understand where she is and who all the “strange” people are. The nurses and other attendants have, no doubt, explained that she is in the hospital, but she wouldn’t be able to remember that longer than a few seconds.

Friday, I arranged for her nurse to connect us for a phone call. That didn’t go well. She never said a word. I tried for almost ten minutes to get her to talk. I told her my name and reminded her that we had met in college. I also talked about our children and grandchildren. I told her I loved her and missed her, but nothing worked. Yesterday, we had a FaceTime call. That, too, wasn’t the answer. It never appeared that she saw or recognized me. Her eyes certainly didn’t light up if she heard my voice.

I received some good news this morning. The nurse told me that Kate had mentioned my name and that she said, “Kate Creighton” when the nurse asked her name. I realize that comes and goes all the time, but I think that was a first since she was hospitalized.

Even better, I was able to talk with her this afternoon. The third try, over the phone, was a charm. She could hear me and was talkative. We had a 10-minute conversation. What she said was clear in terms of words I could understand, but she didn’t make a lot of sense. That happens all the time at home. I was thrilled to hear that her voice was strong and that she laughed as she spoke. I was ready for more good news and was quite encouraged that she seemed to be getting stronger. It truly made my day.

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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.

 

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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.

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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.

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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.”

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All’s Well That Ends Well

Morning confusion isn’t something new for Kate. She isn’t usually frightened by it, but that happened earlier this week. She was sleeping soundly at 11:00 when I went in to wake her. The look on her face is always the first sign of how she is feeling. She often smiles. Sometimes, she is quite cheerful. Sometimes, I see the look of confusion. This time, I sensed fright and said, “You look scared. Are you?” She nodded.

I launched into what has become a common routine. I try to be reassuring and say, “I can help you. You and I met at TCU and have been together ever since.” She looked doubtful that I could do anything for her. I went on to tell her that I knew a lot about her and her family. Then she said something that I’ve never heard her say before and can’t remember her exact words. She conveyed that she wasn’t able to think of anything, something that fits what I have perceived before as her mind’s being a “complete blank” though she had never been able to articulate it.

When I repeated that I would like to help her, she said, “What can I do?” I told her it would probably help if she could get up and get dressed. I went on to say that I thought she would feel better after she got up. She surprised me when she said, “You’re probably right.” I was encouraged by that, but when I asked her to give me her hand to help her, she said she couldn’t do it.

I sat down on the side of the bed and talked with her a few minutes and tried again. She wasn’t ready. I gave her a little more time but continued to sit with her. When I tried again, she was cooperative. She was very uneasy as we walked to the bathroom and had the normal confusion about what to do once we were there. As we completed each step, she seemed to be more at ease. By the time we walked into the family room on the way to the kitchen, she seemed fine. We stopped a few minutes for her to enjoy the flowers and plants and to rearrange a few things on one of the tables.

Breakfast went well. She enjoyed her food, and the music I was playing. When she finished eating, I asked if she would like for us to spend some time together in the family room. She wanted to stay at the kitchen table. I don’t think I have commented on this before, but she seems very comfortable sitting there. One of the sitters told me that once she wanted to remain there after lunch, and they stayed there for a couple of hours.

That evening she was fine when she got in bed. Two hours later when I was about to get in bed, she had that look of fright on her face and asked who I was. She wasn’t reassured after my telling her. Then I thought of The Velveteen Rabbit. She wasn’t particularly interested, but I read it anyway. Midway through the book, she was making her audible responses to the passages I read. She was fine when I finished. I said, “I love you,” and she said, “I love you, too.” Another rough edge smoothed out.