Managing Stress

Because Kate and I have lived joyfully while “Living with Alzheimer’s, one might think that stress is not an issue for me. That would be wrong. The only time I have been relatively free of stress was in the first few years after her diagnosis. At that time, the key stressor was juggling my responsibilities between Kate and my dad who was in skilled nursing. Since then, stress has gradually increased.

Since Kate’s diagnosis 12 ½ years ago, I’ve learned a number of things about stress and how to deal with it. One of those is that it is impossible to avoid. It’s a natural part of caring for someone with dementia. The best I can do is to find ways to manage it.

In the early days, that was easy. Shortly after Kate’s diagnosis, we decided that we would enjoy life and each other for as long as possible. That simple decision led to our binging on the things we had enjoyed throughout our marriage – movies, theater, musical events, eating out, and travel. Pleasure was a central part of our lives and helped both of us minimize stress.

As Kate’s Alzheimer’s progressed, I needed to spend more time with her and felt less comfortable leaving her alone. At the same time, stress was increasing. That led to my engaging in-home care three years after her diagnosis. For a little more than three years, we had help four hours a day for three days a week. That gave me time to run errands and get to the YMCA for exercise.

The past two and a half years, she has required total care. That resulted in my increasing our in-home care to eight hours a day seven days a week. Despite that, my responsibilities increased significantly, and that was accompanied by more stress. Fortunately, I’ve been able to manage it pretty well,

I put a high priority on a healthy lifestyle. Except for my days in graduate school and the first few years I taught, my adult life has involved exercise. Since Kate’s diagnosis, I have needed it more. I used to work out at the YMCA three mornings a week. I stopped when I felt I could no longer leave Kate alone in the morning. That is when I took up walking every day. After our move to a life plan retirement community, I replaced walking for workouts in our wellness center downstairs. I get up between 4:30 and 5:00 five days a week and do stretching exercises for 25-30 minutes before going to the wellness center. I ride the seated elliptical for fifty minutes averaging a little over eight miles a day.

I have also taken up deep breathing. I do that periodically each day including the time I am exercising. I’ve made a number of other lifestyle changes that are helpful. One of those is to avoid rushing. I realized that I was rushing to get to the gym as well as going about my daily household chores like fixing breakfast, washing, folding, and putting away laundry. That doesn’t make much sense now that I am retired. I deliberately began to slow down as I go about my daily routine. In addition, I take breaks during the day and have reduced my emailing, activity on social media, and writing blog posts  

I pay attention to my diet. I maintain a high-protein, low-carb diet with an abundance of fish, vegetables, and recently, nuts and fruit. Sleep is also important to me. Fortunately, Kate sleeps through the night. That enables me to get between 7 and 7 ½ hours sleep.

By far the most effective way I have found to deal with stress is to be as socially active as I can. I do this in a variety of ways.

I follow a daily schedule that includes contact with other people than Kate and our caregivers. That is a lot easier now that we are in a retirement community. Three days a week, I eat lunch in a café downstairs. I don’t think I have eaten alone more than once or twice since we moved here. The other four days of the week I eat off the grounds. One of those days is with my Rotary club. The other three days, I eat alone; however, I eat in restaurants where I have eaten for several years and know some of the staff, and I frequently run into friends.

Our afternoon and evening routine includes 30-40 minutes at a café on the grounds where Kate has ice cream. It is also a time to run into other residents, and most of them stop to chat for a few minutes. In addition, we eat dinner in the dining room five nights a week and in a café downstairs the other two nights. These provide additional opportunities for Kate and me to engage in additional contact with residents and staff. That is good for both of us.

Part of my weekly routine is getting together with friends for coffee. Every Friday, I meet a friend who worked for me ten years before using his computer skills to launch out on his own. We have kept up ever since he left. I meet with another group every Saturday. All three were neighbors before our move two and a half years ago. One of them recently moved to our retirement community.

I stay in contact by phone and/or email with longtime friends and family. This includes my undergraduate sociology professor and mentor who turns 101 in September. I also stay in touch with four other college friends as well as three grammar school friends.

I maintain relationships with several organizations with which I have been involved for many years. Those include the United Way, Rotary, our church, our local symphony orchestra, and a local health foundation.

Apart from these social connections, I participate in three different caregiver support groups. One of those is a group for husbands taking care of their wives with dementia. Another is a mixed group of husbands and wives who are caring for a spouse with dementia. The third group is a group of husbands and wives caring for spouses with any illness that requires regular care. The first group meets twice a month. The other two meet once a month.

Of course, the most important stress-relieving relationship I have is with Kate. Some readers may be surprised that I can say that at this late stage of her Alzheimer’s. To be sure, we don’t relate in many of the ways we could before Alzheimer’s entered our lives, but not a day goes by without our having “Happy Moments.” They serve as the best stress reducer I can find. I savor every “Happy Moment” I have with her. I can’t eliminate stress, but I have a lot of things that help me manage it as effectively as possible. I am grateful.

Addendum

I thought I had finished this post yesterday morning, but since then I have had three different experiences I would like to add. Each one involves a “Happy Moment” with Kate. The first occurred yesterday just before leaving for lunch. She was smiling, and I told her what a beautiful smile she has. Then I said, “And you are beautiful. I love you.” The expression on her face changed immediately as she almost broke into tears. I can’t say precisely what that meant, but to me, it was very touching to see her so moved.

The second one occurred after I got home. I walked over to her and kneeled beside her chair. I told her how happy I was to see her and how much I missed her while I was gone. She gave me a smile and whispered, “I love you.” That is a rare event. More typically, she expresses her feelings with her facial expressions as she did before I left.

The third occurred this morning. She was awake early and in a cheerful mood and talking. That doesn’t happen very often. She is usually very subdued and rarely speaks until the afternoon. On days like today, I sit up in bed beside her and enjoy being with her. We had a good conversation even though I couldn’t understand a word she said. The important thing was that we were connecting. It was a very special moment.

Each of these is a good example of the kinds of “Happy Moments” we experience on a daily basis. They don’t happen all day, but they occur often enough that they boost my spirits knowing that our relationship still means a lot to both of us.

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.