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My Dad

Today, the 105th anniversary of my dad’s birth, I am thinking a lot about him. He was a character. Everyone who knew him recognized that. He enjoyed life and invited others to join him. People, especially Kate, tell me I talk a lot, but I had a hard time keeping up with him. He was also a man with a sense of humor that sometimes fell outside the customary boundaries of propriety. Until his stroke in 2010, he was quite active on email. He was one of those who regularly sent jokes to his distribution list. I wasn’t on his list, but several of my female colleagues at the office were. I also learned that his Kiwanis club asked him to be more sensitive concerning jokes about sex and politics.

It isn’t his talkative nature or his sense of humor that I am thinking about most on this day. He was also a devoted husband to my mother. My mother loved to tell about seeing him for the first time in the ninth grade. She said, “Right then, I knew I was going to marry him.” She was right. They married right after high school when she was 17 and he was 18. After Dad’s death, my brother found a batch of old letters. Among them was an Easter card from my mother that she must have given him in the mid-1990s when she was around 80 and before dementia changed her life. She wrote a note that said, “From the first time I ever laid eyes on you, I have loved you – and I will love you forever.”

Mom and Dad were married 70 years and devoted to each other. That is what I’m thinking about today. Mom cared for him a lot until dementia entered the picture. At that point, Dad rose to the occasion and became her loving caregiver. They moved to Knoxville on Memorial Day weekend 1994. I didn’t recognize it at the time, but I am sure now that she was in the early stages of dementia when they arrived. Although I was with them a good bit, it was three or four years later when I realized that. She died in November 2002.

Dad was her sole caregiver right up until her death. She slept in the same bed with him until three days before she died when hospice brought in a hospital bed and put it right beside their bed. My brother, Larry, and I tried to bring in help without success. The only regular help he had was an adult day care center. Every Wednesday morning he dropped her off. Then he went to Kiwanis and did a little grocery shopping. I helped by visiting with them regularly and bringing in meals.

Although Dad was a big talker, I don’t recall his saying much about what was going on. I do remember his telling me that she would get upset with him and then quickly forget. I also remember that he tied one end of a string around her arm and another around his so that he would wake up if she started to get up during the night. I never heard the first word of frustration or complaint. On days when I took them places, I rolled her to the car in her wheel chair. To get there we had to roll across the grass. That adds a measure of difficulty. When I would fold the chair and put it in the trunk, I wondered how Dad, in his upper 80s at the time, could do this on a regular basis.

So, on this 105th anniversary of his birth, I have a new admiration for Dad. At the time, I had no idea what he and my mom were experiencing, nor did I know that I would be walking the same pathway a few years later. Now, I understand his desire not to relinquish her care to someone else. He felt he was the one who knew her best and could provide the best care for her. That took a toll on him the last year or two of her life. Fortunately, he bounced back after her death and lived another 11 years to celebrate his 100th birthday. He was quite a guy.

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Another Good Day

I am always concerned when Kate and/or I have any special obligations in the morning. That is the time of day when I am least likely to know when Kate will get up and how easy or difficult it will be to get her places. Yesterday, we weren’t going anyplace early, but I had a conference call meeting at 9:30 for an advisory committee on which I serve. The last meeting was almost two hours. This time I had made an 11:00 appointment with a new sitter who will serve as an interim sitter for Anita while she is out for a minor surgical procedure. I had already prepared the committee that I might have to break away a little early if I needed to get Kate up. As it turned out, everything worked out well. The meeting was unusually brief. It was over by 10:15.

When I went back to check on Kate, I found that she was getting dressed. That meant I didn’t have to be concerned about her being ready to meet the new sitter. We had a little extra before she came but not enough time to get a muffin at Panera. I had one in the freezer that I thawed. Then Kate worked on her iPad until the sitter arrived.

The sitter, Marilyn, arrived on time, and joined us in the family room where we chatted for about 30 minutes before going to lunch. We had a little over an hour and a half over lunch to get better acquainted. The interview turned out to be a nice social occasion. I felt very good about her and called the agency to let them know we were pleased and would look forward to her being with us on Monday.

Kate had her bi-weekly massage at 2:00. From there we went to Barnes & Noble for an hour or so before returning home to relax before dinner. She picked up her “Big Sister” photo book that her brother, Ken, had made for her. I brought a chair over beside her and watched as she went through almost the entire book. She loves seeing all the old pictures of her and her family. She continues to comment on several specific photos that she likes. I always enjoy seeing her enthusiasm. When she was near the end of the book, she said she would like to finish the rest tomorrow. Then without closing it, she went back to the beginning and started going through it again.

We had a quiet dinner at Casa Bella. We had already been there for Broadway night last Thursday. The musical performances are held in the larger back room. This time we took a quiet booth in the front of the restaurant and enjoyed ourselves.

From there, we came home. Kate asked me what she could do. When she asks this, I tend to think she is asking because she wants something different than the iPad. I suggested a few things, one of which was to work on her iPad.  That is just what she wanted. She was so engrossed that she continued working her puzzles after I told her I would put on Les Miserables. A little later, she came back to the bedroom and got ready for bed. She was asleep a little earlier than most recent nights. It was a good day and a reminder that we still have many good times.

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The way we think about our loved one’s behavior affects the way we respond to it

Sociologists look at all aspects of social behavior as components of social systems. When there is a change in one part, it has consequences for the others. We commonly hear naturalists who view the natural world in the same way. It’s easy to accept this point of view but not fully grasp its implications. For example, I am sure that quite a few people who lost power during Hurricane Florence found themselves saying, “So the power’s out. I think I’ll just . . .” only to realize that whatever they were going to do also depends on electricity. I know that every time I have the slightest injury to any part of my body, I discover how often I use that little finger, toe, etc. Little things really matter.

Over the course of Kate’s life with Alzheimer’s, l have encountered numerous instances of the importance of memory that I didn’t think of before. I am sure other caregivers encounter the same things day in and day out. One of the most common, and seemingly obvious, ones is to give instructions to a PWD with the expectation they will remember what you have told them. This is really easy to do for a long time after a diagnosis. I am sure one of the reasons is because the memory loss is not 100%. At first, Kate was still able to remember most things. As time has passed, she remembers less and less. Caregivers’ expectations don’t change as easily. On the whole, our loved ones continue to appear very normal, and we continue to treat them that way (as though they don’t have dementia). Thus, we often find ourselves frustrated when we should have understood it was our expectations that got us into trouble.

One of the most relevant examples for me right now is the tendency of caregivers to become frustrated when their loved ones ask the same questions over and over. We do this because we haven’t adjusted to the fact that they can’t remember the answers. When our loved ones change, we have to change the way we think. If not, we experience lots of frustration or irritation.

That takes me back almost eight years ago when Kate was diagnosed. Prior to that, I was pretty sure she had dementia, but I hadn’t fully changed my thinking. As a person with OCD tendencies, I found myself irritated by the disorder I saw in her behavior. The moment I heard the doctor tell us the results of her PET scan, I reinterpreted everything she was doing. That alone was worth our getting an official diagnosis. It made me a more understanding husband. That hasn’t meant that I haven’t been frustrated at times. It means that I understood why she was so disorderly and no longer blamed her. I knew she couldn’t help it. That lesson has served me well. Last night at dinner, Kate asked me at least five or six times where we were (the city). That was in addition to the approximately same number of times she asked the name of the restaurant. Each time she asked, I was able to respond as though it were the first time she asked without experiencing any frustration. I could only do that by fully recognizing that she can’t remember. Furthermore, she asks because she really wants to know. If I were in a city or restaurant whose name I didn’t know, it would seem quite reasonable to ask. I also realize that others may not be able to change their thinking so easily. I feel for them. That makes their lives so much more frustrating.

As Kate’s memory has gotten worse, I see new consequences of that loss. In particular, I am thinking of her memory of the various rooms in the house and the location of things in cabinets and drawers. I can’t know for sure what’s going on in her brain, but I’m very much aware of things that disturb my sense of order. For example, several times lately, I’ve noticed she has opened the drawers of my bedside table, taking out a few things, and leaving them on the table top. These are primarily catalogs and various cables and related electronic accessories. It has puzzled me as to why she was doing this. She had never done so before.

Since then, I’ve also noticed that she has been going through other cabinets, drawers, and closets in the house. It’s easy to notice because she never closes any of them. (That can be a problem for someone with OCD.) Yesterday was one of those days when she neglected the clothes I had picked out for her and made her own selections. I found that she had picked out three pair of socks, two pair of pants (but not a top) and taken them to the bathroom next door to our bedroom where she dropped them on the floor. (That’s the bathroom where she fell out of the shower the other day. I’m trying to steer her away from that one to our bath.) She had taken two towels off the towel racks and threw them on the floor as well as two others she had taken out of a cabinet. I took her clothes back to her room to put them up. When I did, I discovered all the cabinet doors were open in that bathroom.

All of a sudden it hit me. She’s not randomly opening drawers and cabinets. She doesn’t know where her clothes are and often doesn’t notice the clothes that I have picked out for her. That’s true even though I have carefully placed them on the chair next to her side of the bed. Now I see her behavior as quite logical. She’s looking everywhere that one could possibly put clothes. Sometimes it doesn’t take her long to find them. That’s when she opens fewer drawers. Other times it takes a lot of searching.

This also reminds me of something that seems to be getting increasing attention lately.  Most of us have heard that anger can be one of the symptoms displayed by someone with dementia. Some authorities say that is inaccurate, that anger and displays of aggression are not direct outgrowths of dementia at all. Instead, they suggest that the symptom is the PWD has misunderstood the situation. Thus, if we were to interpret the situation in the same way, we might think anger is a reasonable response.

I don’t pretend to be an authority on this matter at all, and, fortunately, haven’t had to deal with anger. I do believe, however, this is just one more example of how differently we might interpret and respond to the behavior of a person with dementia if we had a better understanding of the disease. All of us are in the learning stage, especially those who are dealing with a recent diagnosis.

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Another Difficult Moment

About 7:45 this morning, I went to the bedroom to check on Kate. I don’t know why. Knowing that she sleeps much later than that, I usually don’t check on her before 9:00 or 9:30. I am so glad I did. As I walked in, I could hear her whimpering. She has never been one to cry until the past few months during when she has experienced anxiety attacks and two recent moments when she was very sentimental. Those experiences immediately made me think about her anxiety over her memory loss. I am sure I was right.

I got in bed and held her. I asked what was wrong. At first, she didn’t say anything. She just continued to cry. She often has trouble expressing her feelings. I continued to hold her. A few minutes passed. Her cry became more than a whimper. I said, “You sound like you’re afraid. Are you afraid?” She held her head up and nodded. I said, “Life can be hard, can’t it?” Then I asked “What are you afraid of?” She said, “Losing you.” I said, “You could never lose me, I will always be with you.” Another few minutes passed. She continued to cry softly. Then she said, “I don’t even know who I am.” I told her and then told her about her parents and our children.

I have a wireless audio system that I can control with my phone. I pulled the phone out of my pocket and turned on an album of Russian sacred music. It is very peaceful. She said she liked it. I continued to hold her, and she slowly began to stop crying. Several times she said, “I don’t want to lose you.”

After a while, she said she would like to lie in bed a while. I told her I would get my computer and sit in my chair next to the bed. She rested another 45 minutes. Then she got up. She looked a little confused, but she wasn’t crying. I hope that she has already forgotten what had happened. I just wish I could keep this from happening again.

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Predicting the Future: Part 2

Since writing Part 1 the other day, I had a conversation with someone who asked what I planned to do in the long run with respect to Kate’s care. I told him that was a good question and gave him the following answer.

My desire has been and still is to keep her at home. There are several things that have influenced me to feel that way. First and foremost is the fact that three of our four parents remained at home. After Kate’s father had a stroke, he required round-the-clock care. Kate’s mother learned of someone who could move into their home and provide that care. Her father only lived four months after the stroke. That arrangement worked well. Her mother had a series of TIAs that led to vascular dementia. That also led to the need for 24/7 care. Through their mother’s friends, Kate and her brother, located someone who moved in with her and supervised three shifts of people who provided the needed care. After a year or two, the friend who had moved in to serve as a supervisor had her own health issues. That is when Kate and I brought her to Knoxville to live with us. She lived with us five years and three months with round-the-clock care provided by shifts of CNAs we engaged through an agency.

During this same period of time, my mother was diagnosed with dementia. My dad did not have the same financial resources as Kate’s parents, nor did he have the inclination to have help in their apartment. My brother and I tried any number of times to engage in-home care or to move them to an assisted living facility. Dad tried in-home care but didn’t like it. He ended up caring for my mother at home the entire time. The only help he did accept was an adult day care center. He dropped Mom off every Wednesday morning so that he could attend his Kiwanis meeting and shop for groceries. I regularly brought in meals the last year or two. Before that Dad shopped and cooked on his own. I have a new-found respect for him now. He said next to nothing about any problems he had taking care of her. I was able, however, to observe the toll it took on him. I was quite relieved to discover that he bounced back after her death. He even had a significant other who developed vascular dementia and cared for her until her death. Dad lived 11 years after my mom died and 4 years after his significant other died. He was quite a man and caregiver.

With that background, I was naturally inclined to keep Kate at home. If Dad could do it, I could as well. Besides we have long-term health insurance that will cover a large portion of the financial costs. Dad didn’t.

Since Kate’s diagnosis, I have learned much more about dementia and caregiving. I’ve read a lot of books written by caregivers. I have also followed several different forums for caregivers of PWD. It has also been almost 7 years and 8 months since the diagnosis. I’ve had vastly more personal experience as a caregiver than I had with our parents. All of that gives me a better grasp of the challenges to be faced than I did before. For quite a few reasons I have mentioned previously, I’ve had the good fortune of having a load that is  lighter than that of many people in my shoes.

That leads me to an important conclusion. I don’t believe there is one approach to caregiving that works for everyone. I believe that each caregiver has to assess the numerous ways to provide care. What are the pros and cons of care at home? Care at a facility of some type? Having a good idea of the options that are available will help the caregiver and family determine what is most desirable.

Then it is time to get practical. Do we have the financial resources available to have most or all of the options? (That rarely happens.) How well-suited am I to play the role of a hands-on caregiver? If I want to bring caregivers into the home, should I go through an agency or try to hire and manage caregivers? In either case, what kind of manager would I make? Am I ready to have people in the home 24 hours every day. What about my own family situation? What other responsibilities do I have? Am I employed now, or will I have to continue working to meet expenses?

Caregivers also need to be honest with themselves concerning their own personalities and those of the person needing care. Some people are natural caregivers. Others are not. Most of us fall somewhere in between. I continually ask myself the questions above. So where does that leave me? My desire has always been to keep Kate at home for the the entire time. Am I beginning to have reservations as she enters the final stages of her illness?

My current answer to those questions is that I am still optimistic about staying the course. Nothing new has happened to change my mind. On the other hand, I continue to keep all my options open. I do that because I don’t know what lies ahead. Kate has been very easy to care for up to now. Based on the experience with my mother and Kate’s mother who were also easy to care for, I believe Kate’s attitudes and behavior will continue to be very much like theirs. I should also add that I have never thought of providing all of her direct care myself. I have always intended to work through an agency who will provide 24/7 care. Thus, I am optimistic, but I believe I will always keep an open mind concerning what is best at the time.

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Predicting the Future and Planning Ahead

Among the news dominating the airways today is Hurricane Florence as it approaches the East Coast of the U.S. It reminds me that at some time or other all of us find ourselves attempting to predict the future and consider our options. Of course, some things are easier to predict than others. Predicting the path of a hurricane has improved decidedly over the years; however, a lot of the things that you and I try to predict are much less reliable.

That leads me to comment on my own expectations for the future with respect to Kate’s Alzheimer’s as well as how I will respond to it. First, I’d like to say that I have recognized the importance of living in the moment with Kate. Just about everything we do is geared toward making the most of our time together. I am satisfied that it has worked to our benefit.

On the other hand, I tend to be a planner. I believe in the value of making preparations for the future. For me, that has meant understanding the various options available to us depending on Kate’s situation. Since Kate and I played a significant role in caring for my mother, who had an undiagnosed form of dementia, and Kate’s mother, who had vascular dementia, I have been painfully aware of where the journey ends. I am also well-acquainted and experienced with the variety of care options that are available to us during the progression of her illness.

As far as knowing if and when we might need to exercise one or more of these options, I’ve been far from omniscient. My mother died about four years after her doctor (actually, the social worker) told us she had dementia. My dad and I knew it sometime before then. If I had known then what I know now, I would have approached the doctor earlier. I suppose I was like most people. I just thought she was experiencing normal memory loss that accompanies aging. Besides that, I didn’t recognize ways in which Dad and I might be proactive in making Mom’s life easier. Looking back, I think Dad intuitively did the right things. He kept her actively engaged. Even near the end of her life, he usually took her with him when he went out. Of course, he had little option since he would never accept our getting help.

Kate’s mother died six or seven years after a stroke that led to her vascular dementia. For almost that entire period of time, she received in-home round-the-clock care, a year or two in her home in Fort Worth and almost five and a half years in our home in Knoxville.

Based on these two experiences, I never would have guessed that Kate and I would be able to enjoy ourselves so much at this stage of her illness. My approach as always has been to continue to do all that we can for as long as we can. At each stage, I have tried to look ahead to be prepared. Along the way I’ve asked myself the following questions. How long can we live a normal life?

How long will we be able to travel?

What will happen to our annual trips to Chautauqua?

When will I have to seek in-home care?

Will I be able to keep her at home as her mother did for her father? As my father did for my mother? As we did for Kate’s mother? If so, when will need 24/7 care and for how long?

Will I need to consider either or both of us moving to a care facility of some type? Independent living? Assisted living? Skilled nursing? A continuous care facility?

Shortly after the diagnosis, I thought that in 5-7 years we would be unable to have much pleasure. Within a couple of months, Kate and I both realized that we were living just as we were before. For the most part, that continued for another year or two. I realize now that this varies from one person or family to another. We have been more fortunate than I expected the entire way.

As far back as 2014, I thought our international travel was over. We traveled to New Zealand for three weeks. In May 2015, we took a trip to Switzerland for a similar period of time. That trip convinced me that was our last trip of that nature. It was simply getting too difficult for me to manage her and to handle the travel arrangements as well. In the Fall 2015, I made initial plans for a Mediterranean cruise from Barcelona to Amsterdam for May 2016. I could cancel without a penalty until the end of February. As Christmas approached, I began to question the viability of those plans. I decided to take a one-week cruise to the Caribbean in January 2016 just to see how well she (and I) got along. That experience convinced me to cancel our May cruise. Kate simply didn’t enjoy it as much as I had hoped. I think everything was too unfamiliar for her. It was simply too confusing.

Spending a week at Chautauqua during the summer was one of our favorite things. In 2016, for the first time we spent three weeks there. I was anticipating that as our last time there. I was wrong. I decided to try one more time. We went back in 2017 for a one-week stay. We enjoyed ourselves, but I was convinced that we would not be back. This time I was right.

Making the decision to engage in-home care was a big step. I never felt that I really wanted it from an emotional standpoint. I did, however, believe it was important to seek help if I wanted to care for Kate at home for the entire journey. This past Friday we completed our first year with a sitter. Once again, my guesses regarding the future were not accurate. That is probably a year or two later than I might have guessed after her diagnosis. We began with a schedule of three days a week for four hours each visit. That is still our schedule. I’ve moved slowly on increasing in-home care. I am grateful that we have been able to enjoy many pleasures a good bit longer than I expected, but I see more dramatic changes ahead. That is raising new questions about the future.

I suspect that this fall or winter I will add additional time. I haven’t been particularly good at predicting the future. I hope it won’t be necessary for a while longer.  I’ll say more about that and the possibilities for long-term care in Part 2.

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Connecting with Friends, Discovering More Memory Problems

Kate and I are at that age when we take greater interest in connecting with old friends. We’ve done some of that in the past few weeks. The first is a long-time friend of Kate’s, Meg Wright, who lives in Dallas. She and Kate grew up together in Fort Worth, and Meg was a bridesmaid in our wedding. We don’t see her often, but we have enjoyed getting together with her when we are in Dallas. The last time was almost a year ago. She called a few weeks ago to speak with Kate. They had a nice chat. After they were finished, I sent her an email letting her know how much Kate had appreciated the call. When she replied, she indicated that she may be in the early stages of dementia herself. She said they were experimenting with some medications and was going to check in with the doctor soon. I have followed up with her in a couple of emails including this past week. Nothing is definite yet, but the signs point to dementia. I would have wanted to stay in touch regardless, but now I feel it is especially important to be someone with an encouraging word for her.

On Friday, I placed a call to Reggie Stone who lives in Raleigh. He and I became close friends in Madison where we were both PhD students in sociology. We both began our careers as professors and ended up in the business world. We were very close and had remained in touch for quite a few years. Somehow in the past ten years, we have had very little contact. I decided to end that with my phone call. They were not available at the time, but his wife and I connected via email and set up a phone call yesterday afternoon. Reggie and I talked for almost an hour. It was like old times, at least for me. I hope the same for him.

In our conversation, I learned about a second heart attack and their move to a continuing care facility. He and his wife, Dot, are still active and enjoying themselves, but it seems their lives are also changing. Reggie told me that he no longer drives nor works on a computer. When I asked him a question about something that had happened in the past, he said his memory was not as good as it used to be. I followed up with an email to Dot who confirmed that he has not yet gotten a diagnosis but is encountering memory issues.

In an earlier post I mentioned last week’s meeting with a church friend whose daughter may have early onset dementia. The problem they are having now is getting a clear diagnosis. All of these recent contacts with people I know illustrate that dementia is a more common experience than we often realize. It also encourages me to play a greater role in doing what I can to encourage and help others who are currently living with Alzheimer’s. At this point, my primary role is to care for Kate. I hope that this blog may benefit some people. In the years ahead I may be able to do more to satisfy my desire to help other caregivers and people with dementia.

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Kate changes. I change. Things don’t always work out.

As Kate has been sleeping later in the morning and also becoming more dependent, I have been making my own changes. I know that I have talked a lot about living in Kate’s world, and that it has worked. I’m not sure that I have also stressed that caregivers must also engage their rational abilities as well. That means shifting gears to solve or prevent problems. I’ll give you an example of what happened this morning.

It has become increasingly challenging for Kate to select her clothes in the morning. She has tried selecting them the night before, but she usually forgets some of the things she will need (e.g., her shoes, socks, a top, etc.). I decided to address this issue last week and have been selecting her clothes either the night before or in the morning before she is up. This has worked pretty well.

You may remember that she fell out of the shower last week. I decided it was safer for her to shower in our bathroom that has a walk-in shower. Some mornings, she chooses our bathroom anyway. This past week I caught her before she was about to use a shower in another bathroom and suggested that she use ours. That worked.

When she showers, she often uses several towels. That usually means at least two bath towels. In addition, she often uses one or more hand towels and, sometimes, the bathmat. When she finishes she drops or throws them on the floor or counter tops or whatever is nearby. That’s not a problem for me when she is using another bathroom; however, it conflicts with my OCD when she uses our bathroom. I try to keep all the towels, toothbrushes, and toothpaste in their “proper” places. That means a clean up after she showers. Since she doesn’t know which towels are hers, she often gets mine. To solve that I started keeping two on top of the counter directly across from the shower and pointed them out to her. Once or twice she has used at least one, but she still opens a drawer and pulls out one or two other hand and/or bath towels.

When I had the bathroom redone, I had two hooks installed inside the shower to hold towels. That way the person showering could dry off without opening the door. That gave me another idea. After my shower last night, I hung two bath towels for her on the hooks. In addition, I left the original two towels for her on the counter in case she wanted more. I thought I had it made. I had adequately addressed the problem, for me anyway. The shower issue was no problem for her. It was solely mine.

Now I can tell you the results I had with my little experiment. Kate went to bed earlier last night, so I thought about the possibility that she might wake up earlier this morning. I checked on her once or twice, and she was still sleeping. I got busy on my own things. When I checked on her again, I discovered that she had already showered and not in our bathroom, so I hung her towels back on the towel rack where they are normally kept. I can’t say that my plan for the shower didn’t work. I just slipped up and didn’t get to her quickly enough.

Next I noticed that she had left all the clothes I had put out for her right where I had put them last night. She had gotten out her own clothes except for a top. I went to her closet and brought one to her. I also got her a pair of shoes and socks. She suggested that I let her take care of the rest, and I did. When she was ready to go to Panera (yes, we were early enough for that), I noticed that she wasn’t wearing the top I had picked out. I didn’t say anything because the one she picked out was just fine. This often happens. I am never sure if she just didn’t want to wear the one I picked out or if she misplaced the one I had given her. I think both of those things happen from time to time. I don’t worry about this. The important thing is that she has a top to wear. However, it’s one more example of the things that I do to prevent a problem only to discover it didn’t work the way I intended. I’m just glad our problems are not bigger than this, except for her Alzheimer’s itself. That, of course, is the biggest issue we have faced in our entire marriage.

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What is different between caring for a parent and caring for a spouse?

Sometime during the late summer or early fall of 1993, I received a call from my mother. Calls like this one were always from my mother, not my father. In our conversation, she brought up the topic of their planning ahead and thinking of moving out of West Palm Beach to some place that would be closer to either my brother or me. We didn’t settle anything in that conversation, but after that I talked with Kate and then Larry who talked with his wife. Together we decided that being near to us would be a good option, and over Memorial Day weekend in 1994, I flew to West Palm Beach and drove them to Knoxville. The movers delivered their furniture the following day.

Although I knew that my dad had had several medical problems over the years, I didn’t think that might be the motivation for their move. I still don’t know. I do know that three or four years later, the social worker at their gerontological practice informed us that Mom had dementia. She approached the subject with us very delicately, but we already knew. Exactly when we became aware I am not sure. It wasn’t right away. Now that I have had a little more experience with dementia, I feel sure that she was showing signs of dementia before their move. She died in 2002, four or five years after the social worker gave us the news.

I spent a significant amount of time with my parents immediately after they arrived in Knoxville and through her death. After her diagnosis, I was particularly attentive to helping Dad to the extent I was able. I was still working and traveling, but I was with them a good bit. During the last year or two of Mom’s life, I frequently took them an evening meal. Larry and I worked with the social worker to design a plan for their care as Mom’s condition worsened. Dad was never receptive to having anyone come in to help. Neither was he interested in moving to an assisted living facility. He didn’t have the financial resources to pay for it, but Larry and I were already subsidizing their income significantly and would have been willing to pay for it.

Looking back, I am amazed that Dad was able to handle her care so well. I never heard him complain. He did many things to keep her active. They delivered Meals on Wheels. They volunteered at a local senior center. They attended a local theater. They made a lot of friends. When she died at home, he was turning her every two hours. Fortunately, that lasted only a day or two.

I thought I understood exactly what he was going through as her caregiver. Since Kate’s diagnosis, I feel I really understood very little. I also feel quite different about Kate than I did about my mother. I loved Mom, but I never felt as troubled or sad as I have felt about Kate. I have also read a lot about other caregivers who cared for their parents. As a result, I have made two observations. First, I realize how easy it is for sons and daughters to miss the many signs of dementia. Second, I am often surprised at how long it takes for us to take action. These go hand in hand. Unless we are living with our parents, we don’t fully grasp the symptoms of dementia.

I don’t believe that I have felt differently about Kate’s Alzheimer’s than that of my mother’s because I loved Mom any less. I believe it’s because sons and daughters whose parent is not living with them never have sufficient information to fully understand what is happening. It is easy to miss. Many of the people who have known Kate have been surprised to know that she has Alzheimer’s as well as how far along she is. That is because they don’t have the same opportunity to observe all of the symptoms. They see her doing much better than they can imagine. They generally imagine the latter stages of dementia.  They don’t understand how much time there can be between the first signs and the state of a person at the end. In addition, they don’t understand that someone with dementia still retains many capabilities even as they lose others.

Of course, there is something more that makes me respond differently to Kate than to my mom. That’s the nature of the relationship itself. At least in successful marriages, the two partners live such intertwined lives that in a way each becomes a part of the other. At lunch on Tuesday, I noticed a “Yin Yang” tattoo on the arm of the hostess. I pointed it out to Kate. It was no surprise that is something that has faded from her memory. She asked about it, so I pulled up a picture on my phone and then explained the meaning of it. As I did, I thought it applied beautifully to our marriage and that of many other couples as well. In significant ways, we are very different personalities, but we complement each other. We also overlap in other important ways. During the past 55 years, we have shared many highs and lows together. There is no other person with whom I have shared so many significant experiences. In our particular case, that has been especially important in helping us adapt to the changes brought on by Kate’s Alzheimer’s.

It also means that what happens to her also happens to me. When she suffers, I suffer. When her life changes, my life changes. This helps me understand the difference in the way I feel about her compared to the way I felt about my mom. Not living with my mom, I never fully understood what she was experiencing. Perhaps more importantly, the love relationship between a husband and wife is quite a bit different from the love one has for a parent. It isn’t that it’s any less. It’s just different.

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So, how am I feeling?

I am sometimes asked how I’m doing? I know the question is asked because people hear so much about the stress experienced by caregivers. As someone who has read a lot about dementia and caregiving, I am quite familiar with the dangers we face. One of the things I’ve learned is that over 60% of caregivers die before those for whom they care. As a result, I am very sensitive of the need to take care of myself as well as Kate. So, how am I doing?

I believe I am getting along quite well. Does that mean I don’t experience any stress? Not at all, but I do a lot of things to ease that stress. I just finished reading Support the Caregiver by David Davis and Joko Gilbert. In their book, the authors identify a variety of ways for caregivers to care for themselves. I was glad to see that I have used all of them. I’ve relied on three in particular. Exercise, reading, and social engagement (one of my choices for “Me Time”). How much time I have devoted to them has varied. For example, Kate’s sleeping late in the morning has put a dent in my social contact. Though our morning trips to Panera began for Kate, I found it has been just as important for me. Thankfully, we are still able to eat out and make it to Barnes & Noble in the afternoon. That is good for both of us. In addition, I get together for coffee with a friend every Friday and maintain an active email communication of two close friends from my college days at TCU.

Having less social contact in the morning and the number of desserts we are now eating has led me to increase my exercise. Previously, I was averaging just under 3 miles each morning. My new average is over 4 miles. Very quickly I dropped about 4 pounds that I had wanted to lose for several months. Of course, I could have given up the desserts, but I don’t want to look back some day and say, “I wish I had enjoyed more desserts with Kate.” It’s not just the dessert; it’s those moments of sharing one together. Since my reading is actually listening while I walk and at the Y, that has also increased my reading time. That’s an extra bonus.

Within the last 4-6 weeks, I have added another way to care for myself. I have begun to meditate. I had read so much about the benefits of meditation, I just had to try it. I’m not ready to say that has made a difference in how I feel overall, but I have found it very relaxing. Right now I meditate in the pool for 20 minutes after getting home from my walk. I was motivated to use the pool because I enjoyed cooling down after walking. It won’t be long, however, before the water will be cooler than I like. When that happens, I may sit on the patio. As the fall weather approaches, I will move to the family room.

One of the things I have learned is that there are many forms of meditation. I was influenced by a book that dealt with mindfulness, being mindful of one’s self as well as one’s surroundings. It would come as no surprise that I incorporate music with meditation. I have several albums of sacred music that are very peaceful. I always begin with my eyes open and take in what each morning looks like at the back of our house. The neighbor behind us has a dense growth of trees. That has sensitized me to the sometimes subtle, sometimes dramatic differences each day. Some days the trees are perfectly still. Not a leaf seems to be moving. This morning the trees were swaying in the wind. Although morning can be an active time for birds and squirrels, sometimes I see hardly a sign of either. During the last part of meditation, I close my eyes and listen more carefully to the music and the sounds of nature.

I find that I become very relaxed. When my timer goes off, it feels a little like waking up from a sleep. It’s a good feeling, and I don’t like to end it abruptly. I don’t hurry to get back inside. When I am back in the kitchen (my office), I continue to play very soft music for an hour or two. That is working especially well now that Kate is getting up later. This is becoming another of my options for “Me Time.” I don’t schedule anything in the morning unless it is necessary. I started doing that for Kate. Now I feel that works for me as well.

All of this is to say that I am mindful of the need to take care of myself and believe I’m doing a pretty good job of it; however, I still haven’t said how I feel. The answer is I feel good most of the time. I especially enjoy my time with Kate. I treasure each moment with her because I feel they are drifting away. I have sad moments. Those are usually the times when she is down, but they also occur when I see new signs of her decline. I am continually adapting to her being able to do less and less. At the same time, I have a sense of satisfaction that we have done the best we can to take advantage of our time together. That’s a good feeling. Just as important, I know that we will continue to enjoy ourselves. I hope that we will be able to do that a good while longer.

Let me conclude this post with something I read in Support the Caregiver the other day. The authors distinguish between being “sad” and experiencing “sadness.” They suggest having sadness is an “appropriate and healthy emotion for the loss of a loved one.” Being sad prevents one “from moving forward into a healthy and productive life.” I am not sad, but I do have moments of sadness. I believe the same is true for Kate.