Two More Issues

As I indicated in my previous post, “Not everything goes as well as I would like”. On Tuesday, I was reminded of that again. We got off to a good start when she awoke early and seemed to be in a good mood. Over the course of the morning, however, she experienced what I described as a pain in her right leg around the knee that was affected by her stroke almost two years ago. She has not been able to straighten it since then.

I am used to the fact that she periodically lets out a scream or yell which is an unmistakable sign of pain. Fortunately, the pain appears to go away almost immediately, and she is perfectly fine. That morning was different. The pain seemed to go away after she screamed; however, her screams were repeated more than five times over a period of a couple of hours. She was fine after that.

When I returned home after lunch, she was happy to see me. She got along well until it was about time for us to go out for our daily ice cream and then dinner. She had been happy and more talkative than usual, but she began to talk more rapidly. Her smiles turned to expressions of agitation that conveyed she was bothered by something.

I put on some music that is usually calming for her. It didn’t work quickly, and I suggested to the caregiver that we give her some ice cream. We did, and it worked. A few moments later, we left for our normal trip downstairs for ice cream. I decided if any signs of agitation reappeared, we would come back to the apartment. Fortunately, she was fine after that. One of our residents stopped by to speak to her. She is always looking for a smile or verbal response from Kate. Most of the time, she is disappointed, but not that time. The result was that she stayed and talked with us 20-30 minutes before it was time for us to leave for dinner.

I was relieved that we didn’t have any more surprises, but I do wonder if these recent experiences are just isolated issues or whether we might see more things like this in the days ahead. Like so many other things, time will tell.

Not Everything Goes As Well As I would Like

My previous posts about our caregiver situation are signs that not everything goes the way I would like it. The fact that we have had 39 different caregivers since our previous Monday through Friday caregiver had to resign for health reasons is an indicator of a serious problem. Fortunately, that continues to get better. We now have someone who is with us each weekday except Tuesday. We are still looking for someone for that day.

Kate continues to have “Happy Moments” despite her having to adapt to the different ways that each new person handles the various aspects of caregiving. One of those occurred recently when I arrived home after lunch. She was glad to see me. I spent quite a while with her talking about her family. Music was playing in the background, and I started singing or humming to her. She was enjoying herself so much that I took a dozen or more videos of her. Each one is a treasure that I have enjoyed sharing with family and friends.

Later in the day and the next morning, I was reminded that more unpleasant things can also happen. Shortly after we ordered our dinner that evening, she became very agitated. At first, I thought she was responding to a pain in her right knee or leg. That is the one that was affected by the stroke she had almost two years ago. She hasn’t been able to straighten that leg since then. The caregivers and I are most sensitive to that. It makes it hard to dress and undress her as well as getting her into and out of her bed and into a chair. The problem for Kate is that she experiences moments of pain. We always know about it because she lets out a loud scream or yell. It is usually over as quickly as it comes, but this time she remained agitated, so we asked the server to prepare our meals for carryout and went back to our apartment. It wasn’t long before she was calm again, but this was unusual. It was the first time I felt the need to leave any public place because of a problem like this.

The next morning she had a panic attack. This is not the first in recent months and followed the pattern of at least two others. She seemed to be frightened. That fright was expressed in her facial expressions as well as a vocal response I couldn’t understand. She was hot, and her skin was clammy. I did what I had done before. I turned on some music that I know she likes. In this case, it was “Edelweiss. I got in bed beside her and sang along with the music. I played it several times in succession and then drifted to “True Love.” In a short time, she was calm again.

Considering everything, we have lived joyfully since her diagnosis in 2011, but we do have our “ups and downs”.

Making a Good Recovery

Most of my posts reflect a positive attitude about “Living with Alzheimer’s.” My self-perception is that I am an even-tempered person who is upbeat and calm even during life’s ups and downs; however, I have recently focused on the unusually high degree of stress I’ve experienced since the loss of Kate’s primary caregiver on November 9. Four weeks later, we had 29 different caregivers. It’s now been eight weeks, and the total number of different caregivers is 36. That is an average of almost five new caregivers a week. In addition, there have only been 11 out of 49 days when we had just one caregiver for eight hours. One weekend, we had 4 caregivers on Saturday and another 3 on Sunday. As a result, I have not been as upbeat as I usually am.

The good news is that I am making a good recovery. Part of the reason is that the number of new caregivers in a given week has declined significantly. Even more important is what I reported in my last post. One of the new caregivers has chosen to help me by volunteering to come three days a week (Monday, Wednesday, and Friday) during January and February. As I indicated in that post, that removed a major source of frustration, but there is more.

Her first day was January 1. Several weeks had passed since she had been with us, and I had forgotten how much I liked her. Yesterday was her second day, and I feel even better. She seems to be better than other caregivers we have had over the past three years. She has the basic CNA (certified nursing assistant) skills and a caring and compassionate personality that I value. She is also pleasant to have around.

To top it off, Tuesday we had another new caregiver (number 36 since November 9) who was excellent, and she will be back tomorrow. I don’t know about her long-term schedule, but it would be wonderful if she could come on Tuesday and Thursday when our Monday, Wednesday, Friday person is not available. It may not be quite as good as having one person five days a week, but it comes very close. Everything may turn out to be even better than it was before the loss of our previous person. I am hopeful.

2024: Off to a Good Start

As my regular readers know, the last part of 2023 was the most stressful time I have experienced since Kate’s diagnosis on January 21, 2011. On November 9, the caregiver who had been with us since the first of August left us because of health problems of her own. Over the next four weeks, I had 29 different caregivers. That was the only time I had experienced that during the six years I have had in-home care for Kate.

The last two weeks of December were better. At year’s end, we had had 35 different caregivers since November 9. We began 2024 with a significant improvement. We have a person who has agreed to be here every Monday, Wednesday, and Friday through the entire months of January and February and, hopefully, for the rest of the year.

She is someone I liked the first time she came a few weeks ago. I was excited when I saw that she was on the schedule. When she arrived, I thanked her for her commitment. I was stunned and touched when she told me that she made her decision because she felt bad about my having so many different people and knew that was difficult for me.

The day went very well. I was especially impressed by the fact that she remembered several things that I had told her were important to me. Not everything had gone as well as either of us had wanted on her first visit almost two months ago, but she arrived determined that everything would go smoothly. It did.

It is still too early for me to get overly excited but it looks like we may have found someone who will be even better than the previous ones who have been with us for more than a few months.

I should add that I recognized long ago that my active involvement with Kate’s care is not something that not all caregivers appreciate. It means they are under my watchful eye, and I often have suggestions regarding her care. I have learned that most husbands in my position leave quickly when the caregiver arrives and return just in time for her to leave. In my case, I assist each caregiver with the process of getting Kate dressed, out of bed with a lift, and getting her something to eat before I leave for lunch. I am rarely gone for more than three hours of an 8-hour shift.


as we begin the new year, I feel optimistic that we will find someone else to fill in on Tuesday and Thursday. That means I will have four caregivers to cover all seven days of the week instead of the three I had before; however, that should be a piece of cake after the events of the past two months with almost forty different caregivers. Things are looking up.

Not Everything Goes Well

In my previous post, I described “An Extraordinary Day” with Kate. In many posts prior to that, I have discussed other “Happy Moments” in our lives. Monday, we had an experience that was the opposite.

One morning several months ago, I walked into our bedroom to see if Kate might be awake. She was, and she looked very frightened. When I got closer, I could see that she was hot. Her skin was clammy. I took her temperature, and it was normal. She was very agitated. I took her blood pressure, and it was 190/100.

That led me to call the doctor who came to our apartment accompanied by his nurse. They also took her vital signs and got the same results. It didn’t seem as though she was ill. They remained around for a short time, and she calmed down.

Several years ago, Kate experienced delusions and hallucinations periodically. Most of the hallucinations were not unpleasant at all; however, there were occasions when she was frightened in the morning. It was easy to spot even though she wasn’t able to tell me what bothered her.

My interpretation of her problem was that she woke up without knowing where she was, who she was, or who I was. On a couple of occasions, she asked, “Who am I?” I dealt with that by getting into bed and comforting her. I explained who she and I were and where we were. Mostly, I just lay there holding her hand and saying comforting things.

Nothing like that had happened in years, but the doctor and I decided she had had a delusion of some sort and was simply scared. The intensity of her reaction was much greater, and, afterward, I wondered if we might see more of this in the days ahead.

Nothing like that happened again until Monday morning. The symptoms were the same as they were before. She looked frightened. She was hot but did not have a temperature. Her skin was clammy, and she was agitated. Her blood pressure was 195/104. This time I didn’t call the doctor. I got in bed and moved close beside her and tried to comfort her. I also put on some soft music that I know she enjoys. About thirty minutes later, she was calm. She was fine the rest of the day. In fact, she had “Happy Moments” the rest of the day, but will this be something she experiences again? Right now, there is no way to know, but time will tell.

Update on In-Home Care for Kate

Six years ago this coming September, I engaged in-home care for Kate. At that point, all I needed was someone to be with her while I went to the Y and ran errands. It was prior to my feeling a real need for help, but I was becoming uneasy about leaving her alone. At the time, I referred to the caregivers as sitters. All they had to do was spend time with Kate. They didn’t have to dress her, prepare meals for her, or take her places.

Looking back, I view that as the “honeymoon stage” of our in-home care. After a month or so, we settled into a routine with two different people. One came on Mondays for four hours. The other came on Wednesdays and Fridays for four hours. This went well for three years although we made a few changes in the person coming to the house on Mondays. Fortunately, we had the same person for Wednesdays and Fridays for more than three years.

Then came Covid in November 2020. Kate’s Alzheimer’s had been progressing more rapidly in the previous two years. She was in the early stages of aphasia and was developing mobility problems. Her hospitalization for eight days for Covid was traumatic for her. Since then, she has required total care.

The honeymoon with in-home care was over. Finding caregivers was also more challenging because of the pandemic. Apart from the pandemic, fewer caregivers are willing to accept people who require total care. Thus finding and keeping caregivers has been a problem since then.

It is especially difficult to find someone to work eight hours a day five days a week, but we found one person who was with us until May 2022. We were able to replace her with someone who was with us until this week when she decided to leave because of her back problems. That was a low blow to me. She was the most caring and compassionate caregiver we have had. She and Kate got along well, something I consider of paramount importance.

So, we are going through an adjustment. We have a new person who comes for eight hours a day on Monday, Tuesday, and Wednesday and another who comes on Thursday and Friday. We are now in our second week with them, and I am encouraged that they will work out. They are both good but have complementary skills. The MTW person has CNA skills that are among the best of anyone we’ve had previously and she has a caring personality. She does have a minor back problem, so we have elevated the bed another six inches, and I am playing a greater role in the heavy lifting. She also appears to be someone who is easy to work with. She has lots of ideas about how care should be provided, but she is also sensitive to the routine we have established.

Our Thursday/Friday person is very cheerful with a very warm and caring personality. She and Kate connected right away. She even stopped by to chat with Kate while we were having ice cream Saturday afternoon with one of our regular weekend caregivers.

Despite my optimism, having new people for five days a week does mean another adjustment for me. That will mean more work for me to familiarize them with our needs and priorities, but we should soon establish a new routine.

Although I wish I could count on having a regular group of caregivers for a longer period of time, we are fortunate to have had three caregivers who were with us for more than a year. At the moment, only one of them is still with us. She has been coming every other weekend for a year and seven months.

Change always requires adjustments, but it often comes with benefits. That is what I am hoping for with this one. Right now, I am optimistic that Kate’s care will match or exceed what we had before.

Ups and Downs Over the Past 10 Days

In most of my posts, I report on our positive experiences. That’s because we don’t really have many negative ones to report; however, we had two unpleasant surprises recently. A week ago Thursday she woke up early and was fine. I spent some time with her listening to music and chatting with her. We were quiet for a few minutes, and then she seemed to be worried. That increased to agitation. It reminded me of delusions she periodically experienced several years ago. During those times, she was bothered or concerned but never to the degree I noticed that morning.

She felt hot and her skin was clammy, so I took her temperature. It was normal. Then I took her blood pressure. It was 194/130. Her pulse was 96. These are all far above her normal readings. I called her doctor whose office is next door to our building. He and his nurse came over right away. They checked her blood pressure, and it had gone down. She seemed more relaxed. They were with us about 15 minutes, and her blood pressure continued to go down, and she seemed fine. We concluded she must have had a delusion that frightened her.

Two days later, she had a similar experience. Her blood pressure was 193/126. About 20 minutes later, it dropped to 123/76. We haven’t had any other such experiences since then, and I hope this doesn’t become a new part of our lives.

Those two experiences were followed by at least three very good days. On each occasion, she woke up early and was awake for a good bit of the morning before the caregiver arrived. During the afternoons, she was more cheerful than normal and one of those days, she was very talkative. She spoke to people we saw while having our afternoon ice cream as well as at dinner that evening.

When she has happy days like these, I am happy too, so it was a great week for both of us. Her behavior continues a trend that has been taking place for 8-10 months. Over that time, she has felt more at ease. That matters a lot. When she is at ease, it is easier for her to smile and talk.

Yesterday was not a good day for her. She seemed to be fine in the morning, but her mood had changed by the time I returned from lunch. She smiled briefly when I returned, but she didn’t appear to be happy after that. It was only at dinner that she began to change. When she spoke to two guests, the caregiver and I were amazed because she hadn’t been very responsive all day.

As often happens, we had a good evening together. I have no idea what made such a difference during the afternoon.

I drafted most of this post over the weekend, but I am glad to report that this morning she awoke in a cheerful mood with lots of smiles. She hasn’t talked, but she has smiled and laughed at things I have said to her. We’re off to a good start. Right now, I am sitting up beside her in bed as I close this post. She is smiling and talking. I can’t understand what she is saying, but I enjoy her Happy Moments. It looks like we could be in for another good day.

Living with Covid Again

For the most part, Kate and I haven’t experienced many of the health problems that other seniors face, but we are far from being completely free. Clearly, the one with the greatest impact was her diagnosis in 2011. Then, she and I had Covid in 2020 just before the first vaccination came out.  The trauma of her hospital experience itself has had a lasting impact. Eight months ago, she also had a stroke. It was a mild one but a real one, not a TIA. That, too, has lasting consequences.

Now, we are dealing with Covid again. It all began last week when I had lunch with another resident. We were together for almost two hours. Saturday evening, I received a message that he had tested positive for Covid. At the time, I was feeling fine, but I awoke at 3:00 am Sunday morning with a sore throat. I remembered that when I had Covid the previous time, my only symptom was a sore throat. I went to the kitchen and used our last remaining Covid test kit. The test result was negative.

I was far from being confident I had avoided the virus, so the next day I bought several new kits. I took another test as soon as I got home. Once again, the test was negative. I took another test the next morning. It was also negative.

That brings me to Tuesday morning when I took my fourth test. It was positive. So now, we are quarantined at least through tomorrow if I no longer test positive. That also assumes Kate doesn’t get it, and I think that will be hard to prevent.

This experience is a reminder of the benefits of our move to a continuing care retirement community a year and a half ago. They have a procedure for things like this and took action immediately. The dining room will deliver all our meals. They also provided a supply of PPE gear for our caregiver. In the meantime, we are “Living with Covid” in our apartment. Several residents have volunteered to run errands for me. I took one of them up on that yesterday afternoon.

I’m getting better each day. My symptoms are minor. In addition to my sore throat, I have a stuffy nose and experience a few aches in my joints. My biggest concern relates to passing the virus along to Kate. I wear a mask in our apartment, wash my hands regularly, and wear gloves much of the time, especially when I am handling things that Kate might touch.

Our primary caregiver has been very helpful. She is willing to come each day. She also brought us some disinfectant wipes that I use for various places I frequently touch, like refrigerator doors, handles on cabinets, and counters. Kate can’t touch any of them, but the caregiver can. I still think it’s doubtful that I can prevent Kate’s getting the virus, but we will try. I’ll let you know what happens.

A Brief Update

Once again, I find that I am behind on another blog post. On top of my usual excuses is that I’ve had computer problems that were finally solved yesterday. During the past two weeks, my computer wouldn’t connect to our Wi-Fi network or any other one. In the meantime, I’ve been occupied with Kate (many good moments) and other personal issues like an infection in one of my toes and pain on the right side of my other foot. Those involved several doctor’s visits that have solved most of the problems.

The best news is that Kate’s improvement has continued over the past few months. That has given us more quality time together which has boosted my spirits greatly. I’ve been particularly pleased that our evenings are once again very special times. Our love for each other is more consistently evident now than in quite a long time.

I continue to be pleased with our new primary caregiver (8 hours daily from Monday through Friday). I feel less stressed now than I did a few months ago, and my blood pressure is staying at normal levels. Prior to replacing the previous primary caregiver, my blood pressure was bouncing periodically to higher levels than those to which I had been accustomed.

I feel the need to stress again that I don’t mean that her Alzheimer’s is any better than before, only that she is more comfortable and at ease, than she had been since her hospitalization with Covid almost two years ago in November 2020. That, our move a few months later, and then a stroke were all significant events that brought about dramatic changes in our lives. It hasn’t been easy. Some of those changes have been permanent, for example, Kate now requires total care with all her ADLs (activities of daily living). Our world is much smaller now; however, we continued to enjoy life and each other. And I am grateful.

My Experience with Paid Caregivers: Part 2

In my previous post, I outlined some of the unanticipated things that go along with having paid caregivers. I made the point that family caregivers remain managers of their loved one’s care. These things include dealing with insurance companies, selecting an agency that provides in-home care, (many insurance companies only reimburse fees that come through an agency), and handling the finances. As I confessed, they produced a few new sources of stress.

Today’s post looks at managing the caregivers themselves. That’s something else about which I hadn’t given much thought before our first caregiver arrived. I feel sure that I was heavily influenced by our experience with Kate’s mother in 2000 when we arranged 24/7 care for her in our home. That was a very good experience. The agency quickly arranged for 5-7 people to cover all the shifts. Almost every one of them was with us until her mother’s death over five years later. They were a dependable and competent group that could handle the tasks required for someone who needed “total care.”

When I first engaged caregivers for Kate, I didn’t think much about any special skills for her caregivers. I was simply looking for someone who could be with her while I was away for a few hours. I wanted someone who would be a good companion for Kate. After trying several in the first few weeks, we ended up with two who were with us for an extended time, one for more than four years.

The only problem I encountered was finding people who could establish a close relationship with Kate. I wanted someone she would look forward to seeing. The one who was with us for over four years was the best.

Before Kate had COVID, she was still mobile, able to occupy herself and take care of her personal needs. After her hospital experience, she required total care. That not only meant that I needed more hours of help. I needed caregivers with special training in caring for someone with her needs. That was a whole new ballgame. It’s been a year and five months since then and the management of caregivers has become a big part of my life and is often stressful. Here are some of the reasons.

Like other family caregivers, I value the time that I get away for lunch, meet with friends, or take care of routine tasks like grocery shopping. Some, like doctor’s appointments and my weekly Rotary meeting, involve a specific time, and I don’t like to be late. Inevitably, caregivers are sometimes late or have to cancel. That has presented a problem for me from the beginning. It has become a much bigger issue now that Kate needs more care, and there is a staff shortage.

On a number of occasions, our current agency has been unable to replace a caregiver who couldn’t come. Fortunately, our present agency has “floaters” on the grounds. These are caregivers whose job is to move from one client to another during the day to meet immediate, short-term needs like ours – helping me get Kate out of bed and back in bed that night. Between those times, I can care for her myself. Actually, I like that because her needs are minimal once she is up, and we get to spend quality time together. Even with the backup provided by floaters, I often need to change my plans for the day.

One of the biggest challenges (and another source of stress) is finding caregivers that are a good match for our needs. Kate now requires help with all of the “activities of daily living” (ADLs). If I want a caregiver who is trained for this responsibility, I need a CNA (Certified Nurse Assistant). Not all the caregivers at an agency have this certification, and not all CNAs are equally skilled; therefore, it often takes trial periods with different caregivers before settling into one or more who are best suited for our situation. It can be very stressful when I lose a caregiver and have to locate a replacement.

I’ve come to recognize that the qualities I want in Kate’s caregivers fall into two distinct categories that I consider of equal importance. The first, and more obvious, is the technical skills required to perform all of Kate’s ADLs (bathing, dressing, getting her out of bed, and feeding her. The second is to treat her with tender loving care (TLC) although I don’t expect them to treat her as I do. Our relationship as husband and wife is distinctly different. It is much easier for me to deliver TLC than any caregiver.

On the other hand, I have had only one or two caregivers who made any effort to provide the TLC that I would like. Typically, caregivers just sit in the same room with Kate without talking. That has bothered me because everyone, even people in the later stages of dementia, appreciates being treated like a person. I believe the root of the problem lies in the fact that Kate doesn’t talk much at all. This leads the caregivers to believe that she can’t understand and appreciate their effort to be friendly. I also believe that caregivers’ training provides much less attention to TLC than I think is necessary.

Kate’s early caregivers were better with TLC than those with her now. That was a time when Kate could carry on a conversation more easily. The only way a caregiver can do that now is to “get into her world.” That is not an easy thing to do, even for me. We’ve had only two caregivers (and they were filling in for one of our regulars) who could handle this. Each of them sang songs with/for Kate. Kate enjoyed it, and I was surprised when I came home and found them talking together.

I’ve learned that our situation is a bit unusual for most of our caregivers in that I am an active manager of Kate’s care. I am rarely gone for more than three hours of a 7-8 hour shift. The caregivers are accustomed to providing care without another family member’s presence. Usually, family caregivers leave right after they arrive and return at the time they are to leave. As a result, they can be annoyed and resent any involvement or suggestions from the family caregiver who spends more time at home. That has been a particular problem with one of my caregivers, and it has been very stressful.

That leads me to mention something else that can be a problem – the caregivers’ personality. I have also run into this, and it is with the same caregiver whose other caregiving responsibilities don’t include working in the presence of a family caregiver. I’d rather not go into the details, but this has become the biggest problem I have faced with any caregiver. I am working with the agency to replace her, but so far they have had no luck. Our agency is not alone. Caregivers are in high demand, and people who require total care are often the least preferred cases by the caregivers themselves.

In closing, I should say that I’ve been talking about paid caregivers for in-home care; however, what I have said is also true if one’s loved one is in some form of institutional care (hospital, rehab, memory care, adult daycare, or skilled nursing). Following a stroke, my dad was in skilled nursing for the last three and a half years of his life. I visited with him almost every day. From the first day until the last, I found it necessary to communicate aspects of his care that needed to be addressed. Twice, for example, I arrived to find him in a diabetic shock as a result of their continuing to give him insulin despite the fact that he had missed his lunch. The schedule called for him to get his insulin at 3:00. There was no requirement that he had to eat lunch.

All of this is to say that having paid caregivers is not without its own elements of stress. That often arises from the unanticipated consequences of being the family caregiver, the manager of the loved one who needs care. That said, I wouldn’t be able to handle Kate’s care without our paid caregivers, and I am very grateful to have them.