Creating a Caregiver’s Toolbox

Although Kate and I have experienced “ups and downs” while “Living with Alzheimer’s,” we’ve been able to live joyfully from the time of her diagnosis. There are many reasons for our success, but I believe having a large “caregiver’s toolbox” has been one of them.

We began our journey with 22 years of caregiving experience. That included all four of our parents and my dad’s significant other after my mom’s death. Three of them had dementia. We learned a lot during that time, and it made it easier for us to approach our personal experience with Alzheimer’s. That gave us the first tools for our toolbox.

My professional experience also provided relevant knowledge about caregiving. For ten years I was a social psychology professor. As I transitioned to a career in market research, I directed a master’s degree program for alcohol and drug abuse counselors. That fit well with my
social psychology background and greatly expanded my knowledge acquired in academia.

Several years later, I joined the Stephen Ministry program of our church. This program links individuals who are facing personal and/or family problems with church members who serve as understanding companions who meet with them regularly until the service is no longer needed.

Despite that background, I felt the need to know far more than I knew then. Each of the people for whom we had caregiving responsibilities was unique.  I wanted to know how other people dealt with their situations.

My first step was to visit the Alzheimer’s Association website where I found an abundance of information and sources of help for caregivers as well as their loved ones. I read a fair amount of posts on various message boards but found it a little depressing. It was a comfortable place for people to express their problems and seek help, but I wanted to find a source with a more positive outlook.

That led me to check books on Amazon where I found Alzheimer’s Daughter by Jean Lee. Both of her parents had been diagnosed with Alzheimer’s on the same day. She carried a very heavy load as a caregiver. It was far more challenging than any of the experiences with our parents. Although facing significant struggles, she came away with an uplifting message for others facing similar situations.

I liked that. It led me to write her a letter. I was surprised and pleased when she replied. It turned out that she did much more for me than that.

When I created this blog, I communicated with her. It was she who introduced me to AlzAuthors, a not-for-profit organization of people who write about dementia. Becoming a member expanded my knowledge about dementia and caregiving. It also provided me with a much wider range of support. Most of them were caregivers or former caregivers. Others were people who were medical professionals who studied dementia. Still others had been diagnosed with the disease. As a result, I have been asked to serve on panels of workshops on various aspects of dementia and to be interviewed on several podcasts.

It wasn’t just the authors themselves, but many of them were also active on Twitter (now X). I, too, became active. That brought me in contact with a host of other people whose experiences have influenced me.

In addition to the impact that Alzheimer’s Daughter had on me, I was highly influenced by an article I read. It dealt with the importance of a team for a caregiver. The article’s focus was on a team of medical, legal, and financial professionals. I shared the author’s view and already had those in place, but I took that one step further.

I’ve always enjoyed being around other people. I decided to consider everyone with whom I came in contact to be a member, or potential member, of my team. That began with my family and friends but expanded to social media like Facebook and Twitter and the many strangers I encountered. This didn’t require anyone to do anything special. Even people who checked and bagged my groceries became part of my team. Servers in restaurants were especially important. As I look back, having a large team of supporters has played a big role in helping me as a caregiver.

Thus, I began life as a caregiver for Kate with a toolbox of useful tools. That toolbox has expanded considerably over the years. A carpenter always encounters situations that require new tools. That is certainly true for me as a caregiver, In future posts, I’ll talk about other tools that have been especially valuable to me. Stay tuned.

Catching Up on the Past Few Days

Life is still going well for us though Kate has slept late or wanted to three days in a row. I was glad to see that she was up about 8:45 yesterday. It was another day for the sitter, so I was she was up for us to spend a little time together before I get away for the afternoon.

On Wednesday, I woke her about 10:45 so that we could get to lunch before the sitter arrived. She was quite groggy and didn’t want to get up. I told her I would like to have lunch with her before leaving. Then I gave her the choice to remain in bed and have Mary take her to Panera for lunch. I have done that before. She has always said she would prefer to go to lunch with me. Wednesday she said it would be fine if Mary took her. I left her to get up at her leisure. In a little bit, she got up and started getting dressed. By then, we were a little pressed for time, so we went to Panera instead of our usual place. I called Mary and asked her to meet us there. We’ve done that a few other times when we were running late. That seems to work for everyone.

I made my usual trip to the Y and then went to an appointment with one of our associate pastors at church. Since the morning is Kate’s slowest time of the day, we have not been regulars since last fall. The summer schedule is even more difficult for us. The service starts at 10:15. It just pushes Kate too much to make that.

It had been a while since I had spoken with any of the pastors. I like to keep them abreast with how things are going. We met for an hour during which I gave a rather thorough and honest account of what our lives are like. To those of you who are regular readers, it was very abbreviated overview of the things I have posted in the past.

When I got home Kate and the sitter were sitting in the family room. They had gotten along fine. Kate was ready to, so we went directly to dinner. We were back home in time for the evening news. Then we watched a portion of Fiddler on the Roof. It was a good day.

Thursday I had to wake Kate, but she got up easily in contrast to the previous day. We had a very nice and leisurely lunch with two church friends. We ate at the continuing care facility in which one of them lives. It is a very attractive place that lends itself to easy conversation. That’s something very important for folks our age. It had been more than six months since the four of us had been together, so we had plenty to talk about. Since three of us are pretty big talkers, Kate did not say much. However, she had a good time.

We came back home after lunch. I had a meeting for two hours at the house so that I didn’t have to leave Kate. Then it was time for dinner. We went to a restaurant that is a little nicer than the ones we visit most often. The ambiance, meal, and our server were all good. Then we came back home and watched a little more of Fiddler of the Roof. It was a good way to close the day.

Kate’s Brother Ken

Since Kate was diagnosed with Alzheimer’s seven years ago, I have read quite a number of personal experiences with the disease. Most of these have been written by caregivers of a family member with Alzheimer’s, a smaller number by people with it. It hasn’t surprised me that despite having certain things in common, people (both caregivers and their loved ones) respond to the disease in very different ways. Throughout our own journey, I have tried to be sensitive to this fact. I’ve tried not to write as though others’ situations, experiences, and responses are like our own. Even within a family, there are often differences. Let me tell you about Kate’s brother Ken.

In October 2013, two and a half years after Kate’s diagnosis, we learned that he, too, was being tested for Alzheimer’s. They received the diagnosis in November of that year. He is a little more than two and a half years younger than she. That means he and Kate received their diagnoses when they were about the same age. He and his wife, Virginia, live in San Angelo, so we don’t see them very often. We have, however, tried to visit them each time we visit our son and his family in Lubbock. In addition, Ken and I talk periodically by phone and also exchange email messages.

From the outset of their diagnoses, Kate and Ken have approached their situations quite differently. Kate has always wanted to be very private. Other than Ken and Virginia, she has only told one other person about her diagnosis. That was her best friend. Kate hasn’t wanted to join a support group or read anything about Alzheimer’s or other people’s experiences with the disease. She has simply wanted to live her life as normally as she could.

In the early years, she experienced a good bit of frustration from her memory lapses and difficulty completing tasks like working on the computer or dialing numbers on the phone. She has thought a lot about Alzheimer’s, but she has not wanted to talk much about it. We have only obliquely approached the subject. Nowadays, we never mention it. I don’t believe she thinks about it at all except when we go to her doctor’s appointments. She had her latest appointment a few weeks ago, and nothing at all was said about Alzheimer’s. I believe she still recognizes she has the disease, but I don’t believe she associates it with any special problems she has. I never mention it to her. At this point, I don’t see any benefit in her fully understanding the disease, where she is on her journey, and what lies ahead.

Ken, a retired psychology professor, has approached his diagnosis differently. Shortly after he was diagnosed, he informed his family and close friends. He found a support group of others who have dementia and continues to participate in it. He once appeared on the TV news in San Angelo that featured his group.

I’m not sure whether it is his background in psychology or his personality or both that account for his approach. He has also been more deliberate in learning more about Alzheimer’s, ongoing research on the topic, others’ experiences with it, and exercising his brain.

Since I launched this journal as a blog in January, Ken and I have had phone conversations and emails about ways that we might include his experiences and approach to Alzheimer’s within this blog. I don’t think either of us knows exactly where this might lead, but we are going to take a first step.

With that in mind, I thought I would first give you a glimpse of him via a letter he wrote to his sons. The letter, which is copied below, was written in January 2014. This was very shortly after he had received his official diagnosis. He had previously informed them by phone of his test results. This letter was the first in a series of annual letters in which he provides updates. I may share the others in subsequent posts.

Let me point out several ways Ken has responded differently than Kate.

  1. Ken informed his children very shortly after he knew the diagnosis. He and his wife, Virginia, had been with us in Knoxville in October to celebrate my dad’s 100th. At that time, he told us that he was undergoing testing. That was completed in January. After we got the word from Kate’s doctor, we kept the information to ourselves for a long time after that. It was three years later that I told our children because I thought they needed to know.
  2. He was already thinking about a support group and exercising his brain with his photo albums and Lumosity.
  3. He considered some of the most disturbing manifestations Alzheimer’s and wanted to protect Virginia from any potential aggressiveness he might display.
  4. He wanted to clarify his preferences about his care and his desire that she be able to spend her summers in Michigan as she has done for most of her life.

Here’s the letter to his children.

February 2, 2014

Dear (children)

 Virginia and I had a recent meeting with our neurologist to update my diagnosis and discuss strategies for the future.

 He again went over the lab results with more detail, but you already know the general essence of the findings.  To summarize, the results show that I do indeed show clear evidence of mild Alzheimer’s.  While there is great variability and no precise predictability, he said that we are probably looking at a 10 – 12 year time span progression for the disease.

 The good news is that we caught the diagnosis relatively early and that new medications are being developed.  Also, I am in good general health.  Virginia and I are walking together, and we are looking into a “memory support” group for early Alzheimer’s patients.  I faithfully exercise my brain with my photo album projects and play “Lumosity” on almost a daily basis.  The bottom line is that we are being proactive in our efforts to extend the cognitive quality of our lives together.  We hope to have many good years left together for us and our families.

 I inquired about the possibilities of future aggressive behaviors on my part.  Again, Dr. Smith said there are no clear predictors.  It helps to start out with a non-aggressive nature, so I have that on my side.  Some people become passive and withdrawn. However, there does come a time when the disease takes over and “Ken” will no longer be in charge. I saw this with Mother and her stroke-induced dementia, when she occasionally became somewhat combative and argumentative –traits I never saw even once in her normal existence.

 I am writing this letter so that there will be absolutely no future doubt about my feelings on this matter.  If I exhibit aggressive or combative behavior toward Virginia, I want Virginia to have no hesitation to use prescription drugs to control that behavior, even if it further impairs my mental abilities.  I also instruct Virginia to physically move me to a separate living facility when she decides that it is time for that to occur – and I trust her judgment on this issue.  I hope that you will provide advice and counsel on these and related matters, but the ultimate decision will have to be made by Virginia.  I want the decisions to be in her best interests.  I have absolutely no fear of not being well cared-for, or that such a decision will be made “before it’s time”.  In contrast, it is the thought of my not being removed from such a situation that scares me more than anything else – thus, this letter.  Please save this letter and, if I later protest, show it to me as a reminder when the time comes. 

 On a related matter, I want it clear that I wish Virginia to be in Wisconsin during the summers with our children and grandchildren, even if I am unable to make the trip.  If I have to stay in San Angelo, she will get a well-deserved break.

Virginia is not aware of this letter.  I will show it to her the day after I mail it.  I want you to know that I am writing this of my own volition and that she has not requested that I write such a letter.  Please store this letter in your lock box or a safe place where it can be retrieved in future years – if need be.

 I love you all so very, very much.  I also look forward to many good years in the future before we need to face the decisions outlined in this letter.

 Love,

 Ken

“So, how are things going?”

I am often asked how Kate and I are doing. I appreciate the concern, but I always ask myself, “What is the best way to answer that question?” For example, as I reflect on the past week, I would say it’s been a good one. I think that’s true despite my having lost Kate for 20-30 minutes yesterday afternoon. In a previous post I commented on our having had several musical experiences that were special highlights for us. On top of that, Kate has been in a very good mood for the past few days. She’s even been in a good humor at the beginning of the day, something that is more challenging for her since it takes her a while to wake up. Virtually every day ends well. That was certainly true this week. I might say that “things are going very well.”

My typical response, however,  is to say “remarkably well.” I believe that has been a good summary response the entire time we’ve been on this journey. On the other hand, it doesn’t really capture the whole story. For most of the past seven years, Kate has experienced frustration over not remembering things she had wanted to remember or having difficulty with tasks that she used to do with ease. The past couple of years she has been moving beyond that. I don’t believe she connects any of her behavior with her diagnosis the way she did initially.

Over time she has become increasingly bored when she is in the same place for very long. That has been a special problem since she hasn’t been working in the yard as much during the past few months. Almost every day, we move from home to Panera, to lunch, to Barnes & Noble and/or Panera, to dinner, and home for the night.

30-minute break.

I am writing this at Barnes & Noble right now. Thirty minutes ago, a man whom we met here last week dropped by our table to say hello. That led to a good conversation in which we shared a little information about each of us. I am sure that for Kate the highlight of our conversation was her discovery of his Texas roots in Grand Prairie. As she has aged, she has developed a more typical pride in her native state. We discovered several other people with whom we have friendships including a former pastor of ours when we were at TCU. We have many experiences like these at just about every place we go. It makes me wonder if this is part of why Kate likes to get out of the house as much as she does. I know these kind of social interactions boost my spirits. They remind me that even with change, we still enjoy ourselves.

Ultimately, everyone’s life is a mixture of good things and bad, not just those of us who are caregivers. I recognize that some people seem to enjoy a disproportionate amount of good things. Kate and I believe we are among them, and we both feel for those whose struggles have been much greater than our own. That said, I am deeply saddened as Kate continues her decline. Our lives have changed significantly in many ways since her diagnosis. They will change even more in the months ahead. That’s the bad news. The good news is that we continue to have enriching experiences together and with others.

My final observation about answering the “how are things” question is this. The precise answer depends on a number of different things like who is asking the question, how much does the person really want to know, and how much time do you and they have. As I said earlier, I think we are getting along “remarkably well.” That is probably a pretty good response for most people who inquire. For a few others, I may go into greater detail.

First Public Speaking Engagement

For most of the time since Kate’s diagnosis, I have planned to speak to groups about our experience. Until recently, I hadn’t done anything to act on this desire. Almost a year ago, I mentioned it to the program chair for our Rotary club.  I spoke the club this past Monday which is the first time that I have spoken publicly.

Although this was the first time I have spoken publicly, I felt comfortable doing so. I felt that I know the subject well, and I had also prepared well. It turned out far better than I expected. The woman introducing me knew me well and gave a very laudatory intro and did so in a very personal, moving way. When I got to the podium, I said, “Who thought the tears would come at this part in the program?”

My presentation also went well. I could tell the audience was engaged. When I was finished, our president told me that he watched them very carefully as he does every week. He also sensed they were engaged. One person, a retired bishop of he Lutheran church of Tennessee, shook my hand and wanted to tell me something. He was so emotionally touched he couldn’t get out the words. I received quite a few hugs from those who spoke to me including a number I hadn’t thought of as huggers. Since the meeting I have seen a number of other people who had heard me speak and made complimentary remarks.

All this is to say that I feel good about my initial effort. Although I was reasonably confident this would be the case, I still wondered if the audience would be interested. I have now answered that question. Now I will start thinking about when and where to speak again. I had already established contact with two people at the local Alzheimer’s Association. They know of my interest in speaking and/or meeting with support groups. I have also spoken with and visited the director of a local center for caregivers. In addition, my relationship to our major hospital system may present opportunities as well. There may also be possibilities through churches and through Kate’s doctor’s primary care practice. They have a couple of social workers who work with caregiver support groups in town.

Talked with Lois

I called Lois Thomas about an hour ago. She said, “My immediate thought was, ‘Oh, no. Not Kate.'” We chatted about 10 minutes until Kate came in the room. Lois is a talkative, strong woman. She then launched into giving me advice about taking care of myself. She let me know that her father had died taking care of his wife. I was able to shorten the lecture when Kate entered the kitchen

Since Kate still wants to be very private about her AD, I have to be careful with phone calls. I have to plan carefully to make them while Kate is working outside or resting. I would probably call more people if I didn’t have to be so careful. Like some other things I have mentioned, it will be easier for me later on; however, that will be because Kate is worse. I don’t like the tradeoff.

First Noticeable Slip

As I had expected, Kate never wished me a happy birthday yesterday. I showed her cards from Jesse and her boys as well as a Facebook post of Kevin’s. He had posted a picture of the two of us that was taken in March when we visited former piano teacher. He added this nice message. “Happy Birthday today and Father’s Day on Sunday to my dad and my earthly hero.” Kate enjoyed seeing the cards and Kevin’s post, but she never mentioned my birthday. I suspect she never quite realized it was my birthday. Whatever the reason, it says something about her present condition and makes me sad.

Last night we went to dinner at Hathaway’s. When we got up to leave, we saw Cal and Lois Thomas sitting in a nearby booth. They asked us to sit down for a minute, and we did. We have known them since my early days on the faculty at UT. Cal was in the political science department. Their daughter, a friend of Kevin’s, died in April. We visited her in the hospital the afternoon before she died. The next day we ran into them at lunch which was just a few hours after their daughter had died. We also attended the memorial service later that week. We spoke with both Lois and Cal at that time.

That sets the stage for last night’s slip. As we prepared to leave, Kate said, Say hello, to your daughter.” There was a moment of silence. I then said that Polly had passed away. Kate showed surprise and said, “I didn’t know.” Lois then told her she had died in April. Lois is a former nurse who spent her career mostly as executive director of the Tennessee Nurses Association. I feel sure that she understood about Kate. Nonetheless, I intend to call her today to explain.

Going Public for the First Time

Over the past few weeks I have told more people about Kate. For example, I mentioned it to a staff member at church on Thursday. I asked her if she knew, and she said she did. Friday afternoon at a memorial service for a friend of Kevin’s and the daughter of long-time acquaintances from our early days in Knoxville. We met a couple from church. I asked the husband if he knew, and he said yes. I have also told several of my Sunday school class members. Then this morning before class one of the members asked about Kate and then asked a question about Alzheimer’s. That began a conversation that extended into the beginning of the class. I saw one person whom I hadn’t told. I did so before the class began. Then after our opening prayer. I continued the discussion about Kate. They were very understanding and seemed to be quite interested.

I am discovering that more people are aware than I knew about. That doesn’t surprise me in that I have recognized that by my telling selected people over the past couple of years, the news was bound to get around. Kate, of course, is still unaware, and I trust that she will always be unaware. She has enough to be concerned about.

More Signs of Frustration

Last night as we were getting ready to leave for a reception sponsored by the symphony, Kate had a minor panic attack. I don’t recall exactly what upset her, but she finally said, “My life is just falling apart.” This was one of the few times she has expressed such a clear recognition that she is losing her ability to do things. This morning she expressed a similar sentiment. This occurred after I had asked her if she had seen the power cord for my phone. I also noticed that she had put dirty dishes in the dishwasher with clean dishes.

Perhaps this is what prompted me to write Ken and Virginia to let them know I was nearing a decision to inform two of her cousins about her illness. I asked them if they knew any reason that I shouldn’t do so. They both wrote back that I should do what I feel is right. With that in mind, I will notify them either this week or next. I suspect that means next week because this week is pretty busy.

Ken and I also exchanged a couple of emails today. I had asked him how he was doing. I opened the door to our having a phone conversation. He wrote back and indicated that would be best. We will work that out next week. This is something that I would like to do on a regular basis. I think it would be good for both of us.

I am continuing to consider reaching out to others who are going through the same thing. Yesterday I was reminded of a friend who is also in our shoes. I hadn’t thought of contacting him since he and his wife retired to Myrtle Beach, but I will do so soon.

I believe this need to contact other people is a sign that Kate’s continuing decline is related to a corresponding need for stress relief for me.

Being More Open

Over the past few weeks I have become more open about Kate. I was influenced by a couple of people at church who know and have asked me how she is doing. I didn’t hesitate; I told them. Last night I attended a Rotary social while Kate stayed at home. I saw two people who spoke with me about her. We also talked about another couple we know that are going through the same experience. In addition, I spoke with someone whom we have known through church and Rotary. He and his wife have had cancer. He asked about Kate, and I told him. I think I will increasingly find that people know.