Reflections on Leaving Our Home

Two years ago this month, I took a big step and made a down payment on an apartment in a local continuing care retirement community (CCRC). I was motivated to do this for at least two reasons. First of all, Kate and I cared for our parents for twenty-four years. We didn’t mind that. We would do it all over again if faced with the same situations; however, we wanted to make sure our children’s responsibilities for our care would be minimal. I don’t recall that we talked about a specific way to do that, but I felt that we needed to plan for an easy transition to the last chapter of our lives. Neither of us wanted to put them in the often awkward position of letting us know that it was time to give up driving or to move out of our home. Living in some type of senior living facility was always an option. I didn’t establish a specific time frame for a move or assume that we would have to move at all. I approached life a step at a time and was prepared to make changes as I thought needed before our children would feel the need to step in.

That leads to the second reason for my decision. Kate was approaching the last stage of Alzheimer’s. I was handling things with minimal help, four hours of paid help three afternoons a week. She had become totally dependent on me, and I began to wonder what would happen to her if something happened to me. That was the catalyst that led me to explore a CCRC. We have several local options, and, in the past, I had visited at least four of them. I’ve known quite a few people who lived or had lived in the one I chose. It was one of two that were located in places I felt would be convenient for us. I knew the marketing director and that they were about to begin construction on a new building for independent living. I made an appointment with him. Two weeks later, I gave him our down payment.

I haven’t waivered in my decision since that time. As time passed, Kate declined, and the pandemic hit us. At least one of my good friends has asked several times if I were eager to make the move. The answer was and still is that I am not eager, but I believe it’s the right decision. It provides access to all the options we might need in the future. That includes assisted living, memory care, skilled nursing, and rehab. In addition, the doctor who established the geriatric practice with which Kate’s doctor is affiliated has opened a practice on the grounds in the building next door to ours. Yes, he makes house calls as well. I haven’t made the change for Kate just yet, but her doctor and I have talked about it. She actually suggested that as a good possibility. I intend to explore it further once we move in.

Having made that decision two years ago, I’ve learned a couple of things. One is that two years is not a long time. It passed quickly. Had I been eager to move, I’m sure I would have thought the day would never come. That doesn’t mean that I have any regrets about my original decision. I don’t. I also believe I made it at the right time. I didn’t want to move when it might have been disturbing for Kate. Her decline during that time has been significant. I don’t expect her adjustment will be difficult although I feel equally sure she will notice some difference in her environment.

The second thing I’ve learned is that a move like this is stressful. I’ve had an abundance of help. In addition to Kate’s caregivers and the woman who cleans our house, I engaged three other people to assist me with different aspects of the move. One is the decorator Kate has worked with about thirty years. She helped me decide on the furnishings to take with us. I know someone else whose business is assisting seniors who want to downsize. She is handling all aspects of the physical move itself. The third is a woman who has cared for the plants in our yard, on the patio, and front porch. She has also taken care of our holiday decorations. She and I have been worked together 6-8 months getting rid of things in our closets, cabinets, and attic.

Despite this assistance, I have found it impossible to turn over everything to them. There are just many decisions I need to make myself. In fact, I view this move, possibly our last one, as a continual process of decisions regarding what is important in life. Numerous times, I have looked at boxes of “things” we have accumulated over the years and thought a person in the ministry could preach a year’s worth of sermons about them. Most of them are of little value to me now. I’ve discovered they are also of little value to our children or anyone else.

That said, I’ve found that what matters most are intangibles. Uppermost in my mind are the memories that I will take with me. Recently, our weather has been perfect for getting outside. Kate, her caregiver, and I have spent time as much time as we can on our patio enjoying the spring flowers and watching the new growth of leaves on the forest of trees behind our house. It’s been a therapeutic break from the preparations of moving and brought back memories of the good times we’ve had here. I especially remember special celebrations like my parents’ 65th and 70th anniversaries, my dad’s 100th birthday and those leading up to it starting with his 90th. There were also grandchildren’s visits and the time spent in and around the pool. I would also include the almost 5 ½ years Kate’s mother spent with us with 24/7 care provided by 6-7 caregivers who became part of our family. But most of all, I think of the good times with Kate before and after her diagnosis, and it is all but certain we will have more of them during the next week that we are here. I will leave with a sense of satisfaction and gratitude for these memories and many more.

The other day I thought about the move my parents made from their home to live close to us. My dad was the same age I am now, nearing 81. They had lived in South Florida much longer than we have lived here. The move was stressful for him. My mom was in the early stage of dementia. He did his best to see that she got acquainted with people. One of the first things he did was join a local senior center. He became active in Kiwanis and a seniors writing group. He loved his computer and kept up an active email correspondence with friends from the past and many new ones. He adapted very well and lived to be 100. I’m optimistic that I’ll do the same.

Why Are Posts Becoming Less Frequent?

From time to time, readers ask if everything is all right. This occurs when the time between posts is longer than usual. The reasons for these occurrences has changed over time but always reflects what is happening in my life. The other day I looked back on the number of posts for each year since Kate’s diagnosis in 2011. It reveals an interesting pattern. (See the figures below.)

2011                62

2012                64

2013                64

2014                82

2015              123

2016              133

2017              236

2018              549

2019              397

2020              167

During the first four years, our lives remained pretty much the way they had been before the diagnosis. Kate’s symptoms remained much the same as well. There was simply less to write about than in the next four years. Since the end of 2016, her changes were more dramatic. There was plenty to write about, but I was able to keep up rather well. In 2018, I averaged 1.5 posts a day. Since then, my posts have been less frequent. Last year, my average was .46 posts a day, a 58% drop from 2019 and a 70% drop from 2018. So, what’s going on?

The answer involves two different but interrelated factors. First, Kate’s changes have required more of my attention. That made it more difficult for me to devote time and attention to writing. Second, the stress of caregiving increased proportionately, and I felt I had to put more effort into its reduction.

One of the first things I did was to relax my self-imposed obligation to write a new post by 9:00 at least every other morning. I decided that I had a wealth of descriptive information about us and could afford to post less frequently. That has proven to help with the stress but not eliminate it. Now, it relates more to my failure to write more often. I feel that way because there is so much that I would like to document. The truth is that it is so much that I can’t even remember the things I want to record. Previously, I had jotted down notes during the day to help me, but I have less time for that now.

Apart from my responsibilities for Kate, I have remained active in several other ways. These have been mostly therapeutic for me, but also have an element of commitment that can be stressful at times. One of those is emailing with two longtime friends from college. We are in daily contact, and often I don’t have the time to write. I have allowed myself to relax on my own participation. At the moment, I think I have reached a balance that involves minimal stress and maximum therapeutic value.

Of course, everyone is subject to other stresses that are not directly related to our own choosing. There are times when these present a problem. That is happening right now, and I will deal with that in another post. Right now, I think I will take a break and read the daily news. I’ll review what I have written and post it tomorrow.

Well, tomorrow is here. I’m going to upload this post right now.

Always a Few Glitches. You have to Expect That.

I think a lot about how the world is and how we think about it. Right now, I am feeling very grateful. Kate has been home from the hospital just over a week, and the past two days she has shown significant signs of recovery. She may not return to exactly the way she was before COVID; however, if we can get her on her feet again, she might be pretty close. She was able to eat and drink successfully if not in the same quantities as before. She was also more cooperative when moved from her back to her side and when we changed her. I have found it helps a lot for me to lie beside her in bed and hold both of her hands while the caregiver takes care of these things. She seems to find some sense of security in that.

I’m also grateful for the numerous people who have sought to make my life less stressful during the past two weeks or so. These interactions have included Kate’s doctor’s office (a great geriatric practice), the hospital’s doctors and nurses, the Home Health agency personnel (especially their nurse and the physical therapist who did an initial assessment), our church, the friends and family who have called, written, or dropped off a meal, three different servers at restaurants we have frequented over the past few years (one of whom brought us a Thanksgiving dinner) as well as a host of Twitter friends who have expressed their concern and support including one who phoned me twice from New York and the AlzAuthors management team who in addition to their emails and Twitter messages of support gave me a gift certificate for Panera. My experiences with each one have reinforced something I already believed in – the basic goodness of people. I’m a rather self-confident and self-reliant person who has been lucky not to have needed such acts of kindness before now, and it has made quite an impression on me. I think I will be “paying it forward” for a long time to come.

In the midst of this largess of support, a few glitches have occurred. Both of the agencies who have had to work quickly to provide the help I had requested made mistakes on the schedule I had asked for – 8 hours a day starting at noon and ending at 8:00. One agency provided help between 1:00 and 7:00, the other between 11:00 and 7:00. In both instances, it wasn’t a misunderstanding. Those were the hours they were able to work out with their CNAs. I called one of them to say that on Monday I have a Rotary meeting at 12:30 and would like someone at noon. They corrected that right away. I talked with the other agency about their schedule of 11:00-7:00. I wasn’t rigid about the schedule I had requested and agreed to try theirs to see how it worked.

The next issue wasn’t anyone’s fault. The caregiver that had been coming on Monday and Wednesday and was my favorite declined to return after the first day because she has a back problem. She felt moving or changing Kate was going to be a problem. I was disappointed, but I could hardly blame her.

The day after I received that news I was eagerly awaiting a visit by the physical therapist at the Home Health agency who was to train me on the Hoyer lift. It turned out there had been a communication problem between the social worker at Kate’s doctor’s office and someone at the Home Health agency. The social worker at that same agency was scheduled to come to the house late that afternoon. She simply got tied up with other cases that day. I was assured that she would come late the next afternoon. It was 6:30 before she arrived, and she was here close to an hour and a half. It became obvious to me that she takes a lot of time learning about her clients’ situations and needs. She liked her, and I never said a word about her not coming the day before.

The following day I received a call from my other in-home care agency letting me know that the CNA who was to be with us that day was sick, and they hadn’t been able to find a replacement on such short notice. Before I could feel any disappointment, the person who called asked about the most important things I wanted to the caregiver to do that day. I told her it was changing Kate, getting her on her side, feeding her lunch, and changing her again late in the day and giving her dinner. She said she would come over and take care of those things for me. I thought that was going beyond the call of duty but accepted her offer. It turned out that although she works as the scheduler in the office, she is also a CNA and very skillfully handled her responsibilities with Kate. I was liked her too.

Given the stress I had been under, I might have been upset (frustrated? disturbed? angry?) by any one or a combination of these glitches, but I didn’t feel that way. I was simply too moved by how much everyone was working to make my life easier that I couldn’t be upset. There will always be bumps in the road. These won’t be the last ones.  It’s important to keep them in perspective even when we are stressed.

Our First Crisis

As noted in a post last week, I have been having greater difficulty getting Kate out of bed for the past few weeks. That became a more serious issue this week and represents our first real crisis. Here’s the story.

Wednesday or Thursday of last week, I noticed Kate was coughing periodically. Then I felt the first signs of a sore throat Friday night. The next morning my throat was worse. I recalled that a sore throat was one of a number of symptoms of COVID. I decided to be tested and went to a nearby pharmacy that afternoon.

Sunday.

I felt better and began to think that I simply had a traditional sore throat. This reinforced my belief that it might not be COVID. I hadn’t had any other symptoms like fever, congestion, or any breathing difficulties.

Monday,

I was beginning to believe I was out of the woods, but I wasn’t able to get Kate out of bed.  I had already cancelled my help for Monday afternoon because we were on quarantine after getting the test.  She was very weak and couldn’t help herself, and I was unable to do it alone. I called 911 to send someone to the house to get her up, to the bathroom and back to bed.

Tuesday.

Tuesday I felt like I was recovering from a cold. I was encouraged, but I had to call 911 again for help getting Kate to the bathroom. It was late in the day when I received the news that I tested positive. That was a low blow that began a crisis that hasn’t been solved; however, I had already contacted her doctor on Monday and continued be in contact with them several times a day.

Given Kate’s weakness and that my problem getting her out of bed might worsen rather improve, I also contacted the agency that provides the regular help I have on Monday, Wednesday, and Friday. I asked if they could find someone to help on Tuesday and Thursday. They said they would  try.

Wednesday

I made an effort to get Kate up between 11:00 and noon. Once again, I could not get her out of bed. She was very weak but was able to speak clearly to me, something she wasn’t able to do the day before. Based on her doctor’s instructions, I had been checking to see if her breathing was labored. She was all right, but at 1:15, I thought she was breathing a little more heavily. I talked with the doctor’s nurse who listened and said she would get an opinion from the doctor who said to take her to the ER.

I called 911 to take her to the hospital. It was difficult even for the two ambulance attendants to transfer her from the bed to a wheelchair and finally to the cot in which she rode to the hospital. This process was painful for Kate and for me as well. It was awful to see how frightened she was to be hauled away by two strangers and having no idea what was happening and where she might be going. As they put her in the ambulance, I couldn’t help wondering if that might be the last time I would see her even though there were no life-threatening signs at the time. She certainly didn’t show any lessening of strength as she tried to fight.

That afternoon I called our agency to inform them of Kate’s diagnosis. That meant they will not provide any help for us next week. It will be Monday of the following week before they can send the regulars back and any added help for the other days.

At 6:00, I spoke with the doctor who had replaced the one on duty when she arrived. She told me that Kate’s vital signs including her breathing were normal. They had drawn a sample of blood and sent it to the lab and would know later if they found any problem. She also said they were going to send her to a Step Down unit or floor where she would be put on a heart monitor.

At 10:00, I spoke with the nurse in the Step Down unit. She confirmed that Kate was there and that she was resting comfortably.

I ended the day with serious concerns about what I would do for help when she returns home.

Thursday

At 6:00 that morning, I called to check on her. Fortunately, her nurse answered the phone. She told me Kate had eaten breakfast and had a bath. She also mentioned that Kate was enjoying the music they were playing for her on the TV. I was pleased to hear that because I hadn’t mentioned the importance of music to her.

During the morning, I placed phone calls to our current agency and the new agency that I am talking with. I got encouragement from the new agency and hoped to hear back before the end of the day if they might be able to help us.

I received a call from her Step Down nurse at 5:00 telling me they were transferring her to a new floor that should be her last room change. She also gave me the new room number as well as the phone number for the nurse’s station. This was just the kind of nurse a family member wants. She seemed informed on Kate and very compassionate toward Kate and to me. She didn’t make me feel I was intruding on her time to ask how Kate was doing.

At 9:45, I called the nurses’ station to make sure Kate was in her new room and how she was getting along. Her nurse said Kate was already in her room when she arrived at 7:30. Kate was very confused – didn’t know her name, where she was, and was hard to understand. I told her that was not new with COVID. I see that frequently. In a sense, she is at least somewhat confused all the time but not always to the same degree. She knew that Kate has Alzheimer’s but didn’t seem to know any more than that. I gave her a brief background so that she would be able to put in context the behavior she was observing.

Friday

I spoke with her again this morning before she left at 7:30. They gave her a light does of Atavan to control her agitation, and Kate slept well during the night. Last night, I began to wonder if they had all her medications. I had assumed so because Kate’s full medical records are available to the hospital, but things don’t always go the way they are supposed to. I was especially concerned because we have made several recent changes. The nurse asked me to call back later when the new shift had had time to be briefed do some of their initial duties after check in. I plan to do just that.

I feel I should comment on how I am feeling. The best general answer is that these have been the most stressful days since we began “Living with Alzheimer’s.” Nothing else that has happened over the past ten years compares. It isn’t simply my reaction to Kate’s having the virus. It is what she has had to go through to get help. She is frightened by many little things like the noise of ice dropping the ice making into a glass. Being hauled out of bed and being transferred from bed to the ambulance to the hospital and three different rooms with different people must have been traumatic for her.

Beyond that, the biggest problem I now face is what to do for her when she is released. Our agency will not provide care for her until 10 days after her diagnosis. That means no help at home next week. I am talking with another agency that looks like it may be willing to fill in, but finding additional help is a challenge for all home care agencies in our area.

I had a conversation with our daughter, Jesse, last night. She has offered to come from Virginia although she and I want to make sure that Kate and I are definitely free of the virus before she would do that. In the meantime, I have also spoken with the care coordinator at the hospital about options for Kate. We will be talking again soon, I hope.

The good news is Kate’s vital signs and blood work show nothing abnormal. It seems that both of us have mild cases. Her symptoms have been a cough and weakness. For her, weakness is the major problem. She had started this before the virus, but I feel the virus exacerbated her decline. Once she is well, she may be somewhat stronger, but I suspect that she may continue to weaken. There are some things we cannot avoid.

Kate’s overall decline has been more dramatic this year and has taken a more significant drop in recent months and even weeks. January will mark the tenth year since her diagnosis in 2011, and we had observed the first signs at least five years before that. We have been very fortunate to have lived so well despite her Alzheimer’s; however, neither of us was ignorant of this part of the journey. I am not happy to be where we are right now but very grateful for the joy we have experienced in the past. I also believe we will have more “Happy Moments” together in the future even though the remaining time is likely to be punctuated by more troubling experiences like this one.

 

Subject: Anxiety: Mine, Not Kate’s: Part 2

When I wrote my previous post, I was feeling better psychologically because I could focus on the problem from the standpoint of caregiver stress rather than a cardiac issue. That meant I could exercise some measure of control over the situation and was comfortable with that.

I slept well through the night. The next day and night (Saturday) my readings continued to be normal. I was fine until 1:10 Monday morning. I woke up and went to the bathroom. As soon as I got back in bed, I realized this was one of those times I wasn’t going to drift back to sleep quickly. I felt very nervous. I went to the family room where I got in the recliner and took my BP. It was 161/91. That seemed a very significant jump, especially since I couldn’t identify any precipitating events that might account for it.

Even though it didn’t cause any harm, I did something I now know I shouldn’t have done without talking with my doctor. I took another tablet of my BP medication that I had taken not quite four hours earlier. I also took four aspirin (.81mg), something I had learned is fine when one suspects a possible heart attack. Having previously had success by simply relaxing in the recliner and listening to soft music, I decided to try that as well. Ten minutes later, my BP was 144/77, but it remained at approximately that level until I went back to bed at 3:15. I felt very nervous during the entire time as I grappled with the decision of going to the hospital or not. I decided not to go. That decision was based almost entirely thinking about what I would do with Kate.

Before fixing my breakfast at 6:10, I took another reading. It was 151/77. I was concerned again. I took another reading after breakfast at 7:00. It had dropped to 133/65. I felt better but continued to weigh the matter of a trip to the ER. That led me to prepare two pages of health/medical information that someone might need if I were incapacitated. I took a break at 7:50. My BP was 143/66. When I finished at 9:00, it was 139/73.

I decided to write a message to my doctor to send through his portal. That turned out to be stressful as I couldn’t remember the password, and the one I had stored was incorrect. I also ran into complications when I tried to reset the password. Ultimately, I decided to print it and hand deliver after Rotary. In the meantime, I tried to get Kate up before the sitter arrived at noon. I was unsuccessful. All this pushed the BP back to 146/84, and my heart rate was 79.

During the balance of the afternoon my BP fluctuated between 128/79 to 149/68. I was still uneasy about having another night like the one before. I called two friends who live nearby. They both agreed to be on call to stay with Kate should I decide to go to the hospital. I invited them over that evening so that I could show them where things are and provide other information that would be helpful. One has a daughter who is a nurse. She came along.

They spent about 45 minutes with me. The nurse asked me to tell my story and then take my BP. It was 146/86. We had a long discussion. To make a long story short, the nurse didn’t think my readings indicated a heart problem. More specifically, she said that if I were getting systolic readings over 170, she would have responded quite differently. Since my BP reached 161 only once, 151 twice, and the rest were a mixture from 111 to the mid-140s, she didn’t believe they looked so bad. In effect, she said, “You are over-reacting. Your problem is not likely to be your BP or your heart. It’s probably stress.”

When I heard that, I felt a release of tension almost immediately. I was very much at ease. That continued through the time I went to bed. I slept well. The next morning I took a 50-minute walk (inside the house, of course) and took another reading. The results were normal: 120/73, pulse 67.

Although everything was going well, I decided to keep the appointment with my primary care physician Wednesday afternoon. I wanted to talk in more detail with him about what happened and hear his opinion based on my records over the past fifteen years. His view was the same as that of the nurse and the friend with whom I had originally spoken. This was a matter of caregiver stress.

I considered that very good news. As I said earlier, I feel much more confident that I can do something to minimize, though not eliminate, my stress. It is now Saturday morning, over a week since my initial concern that became inflamed on Monday. My BP has been within normal ranges since my friends left the house Monday night.

As I reflect on the whole episode, I believe a number of factors were involved in my over-reaction. The most fundamental one was, indeed, the stress of caring for Kate. Although I have often had moments of frustration, this was the first time I had felt so tense. That led me to take my BP in the first place, something I hadn’t done in years since purchasing the monitor.

Beyond that, I haven’t thought much about my BP since the doctor originally put me on medication. That was a big psychological blow to me. Overall, I am a rather calm, easy-going person who has tried to take care of himself. I was wounded by having to rely on medication. A number of times since then, I have spoken with the doctor about discontinuing it because I was doing so well. Each time he has said that was because of the medication and told me I need to accept it and enjoy life.

Along with not thinking about my BP, I had never educated myself about normal fluctuations that occur. As a result, when I saw the first reading of 138/85, I was surprised and disturbed by it. I know now that it has probably been that high and higher during the normal course of a day even before Kate’s Alzheimer’s.

My OCD also plays a role. As in other aspects of my life, I want Kate to have the best care possible and that she is very dependent on me. I don’t want to look back and think that I should have done more to provide her the highest quality of life she can have while living with Alzheimer’s.

I have always recognized the importance of caring for myself. Maintaining my health is essential in order to properly care for Kate. From the point of her diagnosis 9 ½ years ago, I have done and still do many other things to minimize stress. Many of these were also things that Kate enjoys. That has given us many great moments together. Engaging sitters to be with Kate three afternoons a week and my decision to move to a continuing care retirement community are more clearly steps to help me.

But life is changing now. Kate continues her decline. That requires more of me than before, especially since sheltering in place. My experience with this faux-BP/cardiac problem has been an important sign that I need to consider other avenues to control stress.

Fortunately, I am aware of many options to achieve this objective. In addition, I have the willingness and wherewithal to draw upon them.

So, what’s next? I’ll talk about that in another post.

Anxiety: Mine, Not Kate’s: Part 1

Some of you may have noticed that I’ve been quiet over the past week. I usually blame that on being busy, but that is only a part of the reason this time. Let me explain.

I should preface the story by saying that as an adult, I have been attentive to my health and wellbeing. As early as my freshman year in college, I was active in the gym. At that time, I was into weightlifting. I bulked up to 198 pounds, but muscle accounted for a lot of that. I put exercise aside the rest of undergraduate and graduate school. That extended another 5-7 years when I launched a 10-year career teaching college.

During my first two years, I felt that college teaching was not the best fit for me. Finding something else that was more to my liking and talents required time and effort. That proved to be stressful. I took up running. I continued that for about 10-15 years before having some hip trouble. Then I took up walking. Once my business was going in the mid-80s, I joined the Y and have continued to the present time.

I didn’t give a lot of thought to what I eat until Kate was pregnant with our first child. She had gestational diabetes. Her doctor put her on a high protein diet. I went on it with her. Since then I have been more careful about what I eat. Over the years, my waist had grown, but my weight has gone down. I am almost 30 pounds lighter than I was during my senior year in high school.

I mention all this to say that I take my health seriously. It’s one of my OCD tendencies. I am also very sensitive to the impact that caregiving has on one’s health. During the 9 ½ years since Kate’s diagnosis, I have made numerous changes to minimize or reduce stress. Notable examples would be reducing, then ceasing, travel and engaging the help of sitters for Kate three afternoons a week. Another big step was making a commitment to move to a continuing care retirement community the first part of 2021.

Over the past year, Kate has required much more of my time than before. That has been especially true since sheltering in place. These things have clearly raised my level of stress.

That brings me to the past week. Three weeks ago, I had a routine telemedicine appointment with my doctor. He mentioned that I ought to take my blood pressure readings periodically. I didn’t get around to it; however, last Wednesday, I felt under more stress than usual. That made me think about my blood pressure. Although I have been a regular blood donor and then a platelet donor, I hadn’t taken it at home in years. I located my BP monitor that night.

The next morning, I had that same feeling as I walked from the bedroom to the kitchen to get my breakfast. I took by blood pressure. It was about 135/85. That may not be high in general, but it was most unusual for me. I have been on BP medication for ten years or more and my readings have always been about 110-120/70-80.

I ate breakfast and then took my regular morning walk. I walked 50 minutes and took my BP again. It was about the same. By 11:20, I had taken several other measures, all were within normal levels.

Then I went to the bedroom to get Kate up. She didn’t want to get up. I got in bed with her and remained with her for almost 40 minutes. She still didn’t want to get up.

When I got up, I took another reading. This time it had jumped back to 138/85. I relaxed in Kate’s recliner and played some soft music. That dropped the reading to 118/78. I took seven other readings between 12:30 and 7:30. They were all normal.

Friday morning before breakfast, my BP was 151/78. That got my attention. That made me wonder if I might be in the early stage of a heart attack. I thought about the symptoms I could remember. I didn’t seem to have any of them. I went to the computer to look for others.

I still didn’t have any of the signs of a heart issue; nevertheless, I started to think about going to the hospital to be checked. Then I thought about Kate. I knew hospitals had not been allowing family members to be with the patient. I also knew that I couldn’t leave Kate alone. I called the agency that provides our sitters and asked if they would have someone right away. The regular sitter was scheduled for 1:00. They were stretched thin and couldn’t get anyone.

I also remembered that when you go to the cardiac emergency room, they keep you a minimum of six hours and want you to stay overnight. I asked the agency about someone for the weekend just in case. Then I called a friend to see if she could come over if I needed her. She was willing to do that. It turned out, however, that she was able to offer a better perspective on the situation. I should say that she is well-informed about health issues because of her work with the hospital. In addition, her mother cared for her own husband with dementia. I shared by BP readings with her, and she said she thought it looked more like anxiety caused by stress than an impending heart attack but said it would be better to hear that from my doc. I had already left a message at his office.

When I spoke with the doctor’s nurse, she said the doctor’s interpretation was the same as my friends. I felt the same way but also felt I should err on the side of caution concerning a possible heart attack. I scheduled another telemedicine appointment with the doc for the following Wednesday.

In the meantime, the agency was able to contact the sitter and asked her to come early. I had trouble getting Kate up and was concerned about leaving her but planned to do it anyway. I decided to take the afternoon to myself. I ran several errands. I spent the rest of the afternoon at my office relaxing, not working. I watched an interesting lecture and conversation with a couple who are Buddhists. It came at a good time for me in that I was trying to do exactly what they were recommending – living in the moment. As Kate has declined, I have been spending much more time thinking about the future and plans for our move. After returning home, my BP was normal the rest of the day. I felt much better when I went to bed that night.

However, that isn’t the end of the story. This is already a long post. I’ll save that for my next one.

Thinking About Stress: Part 2

In yesterday’s post on stress, I discussed two aspects of caregiving that I believe influence the degree of stress that I and other caregivers experience. My intention was to convey why I believe my stress is less than that of other caregivers. In my earlier post, I suggested that my caregiving load has been comparatively light and that my prior caregiving experience as well as my personal characteristics have enabled me to cope with the challenges I have faced. Today I focus on the ways in which I have been able to minimize stress. I am fortunate to have a variety of ways to address the problem, and I depend on all of them.

Binging on music and eating out are unquestionably my best ways to manage stress. I have written extensively about both of these and won’t say more about them here, but they have been great therapy for Kate as well as for me. They have provided us with pleasure and kept us socially engaged. We are fortunate to share these interests. That is not true for every couple.

Exercise has been a part of my life for a long time. Although caregiving has changed that somewhat, it still is an important part of my life. As I became less comfortable leaving Kate alone, I engaged a sitter three afternoons a week so that I could continue going to the Y as well as doing other things cited below. I reduced the amount of time spent at the Y but added a 40-minute walk every morning.

Reading is another of my pleasures. Before my retirement, I focused on my career. Much of my reading then was influenced by my professional interests Since then I have broadened my reading substantially. After Kate’s diagnosis, I opened an account with Audible and get two books a month. I listen to books while I am at the Y and when I walk in the morning. I like being able to accomplish two tasks at one time. I also read some on my iPad. I wanted to learn more about the experiences of other caregivers and began to read books they as well as people with dementia have written. I have read over thirty of these.

I have participated in voluntary organizations for most of my life. As a caregiver, I have had to reduce that, but I fit some in my schedule. I’ve been a Rotarian for 36 years. I currently co-chair our CART Committee that collects weekly contributions from our membership for Alzheimer’s research. I have been active with United Way for 35 years and serve on two of their committees. Although I no longer serve on the board, I maintain contact with a local hospital foundation that raises funds for the area’s largest hospital system. Until three years ago, I was still active in our church. Now my only involvement is serving on a committee that calls church members on their birthdays. The pastoral staff has remained in contact with me. Kate and I have lunched with three of the pastors, most frequently with our senior pastor with whom we had such a good experience this past week. He was the first person to approach me with a concern about Kate. That was July 2011, six months after her diagnosis. They have definitely stayed in touch.

I also meet with friends for coffee. Mark Harrington and I get together each Friday afternoon for over an hour at Starbucks. I also have a church friend I meet at Panera about once a month.

Email contacts have also been important. In particular, I am in daily contact with two college friends. In the past, we could easily have over twenty messages a day. Our correspondence not as frequent now, but rarely does a day go by without several messages.

For many years, we have had good friends in Nashville. We have a long history of daytrips to visit friends. We have continued those visits since Kate’s diagnosis. One of those is Kate’s closest friend who is now in memory care following a stroke four years ago. We try to visit with her every four or five weeks. In connection with that visit, we often get together with another of our Nashville friends.

I launched this blog and opened a Twitter account in January 2018. These have opened up an entirely new avenue for minimizing stress. They have helped in two ways. First, they provide new activities that I can do right from home. Second, they have enabled me to make new online friends that have been very supportive. I have learned much from them.

All of these activities have kept me active and provided different ways for me to be socially engaged. I expect my stress is likely to increase in the future. That’s because Kate is requiring more personal care than in the past. Up until now, I have had sufficient time for the personal things I like to do. In addition, most of our time together is spent doing things we both enjoy.

The major part of my stress doesn’t arise from my direct caregiving responsibilities. It comes from the sadness I feel as I watch Kate’s decline. Although I can’t predict the timing or all the specific things we are likely to encounter, I know all too well where we are headed. As we move forward, I intend to do what I have done in the past. I’ll take great pleasure in our Happy Moments and enjoy the satisfaction of keeping her as happy and secure as I can. I feel it’s a privilege to walk with her through this last chapter of her life.

Thinking about Stress: Part 1

There is no question that caring for a loved one can, and often does, cause a good deal of stress. Judging by the frequency with which people remind me to take care of myself, caregiver stress seems to be common knowledge. I find, however, that the degree of stress can vary tremendously from one person to another. I don’t think that variation is well understood.

That leads me to a favorite topic of mine: generalizations. All of us depend heavily on them. They are often very useful; however, applying a general pattern to a specific situation (in this case, the stress of an individual caregiver) calls for more detailed information about the specific caregiver and her/his situation.

I usually think about three major elements that play a role in stress experienced by a specific caregiver like myself. One is the sources of stress. Some things produce a lot of stress. Others produce very little. A second category is the personal experience and characteristics  of the caregiver. Some people find it difficult to deal with stress. Others find it less so. The third category involves the things a caregiver can do to reduce or minimize stress. In today’s post and the one following, I would like to comment on how those three come together in my particular case.

As Kate’s care partner I have experienced stress, and that stress has increased as her Alzheimer’s has progressed. As I look to the future, I believe that stress will likely increase. On the other hand, stress seems to be less of a problem for me than for many others. I say that based on reading a variety of online forums for caregivers as well as over thirty books by caregivers who have provided vivid accounts of their experiences. When I consider what they have been through, I see good reasons for my feeling less stress, and the three elements I mentioned above provide an explanation. In this post, I will deal with two of them.

Sources of Stress

All stressors are not equal. The ones I confront are minimal compared to those of other caregivers. The load I carry is simply not as great as that of theirs.

In the first place, I was at a point in my career when I could retire to devote my attention to Kate. Many caregivers have a variety of other responsibilities that also demand their attention. I am especially mindful of spouses who have to continue working to pay the bills and can’t afford to hire someone to help. There are many women who are not only working and caring for one or both parents but also care for children. I am familiar with their stories and recognize the struggles they are facing.

Kate has also been easier to care for than many other people with dementia. It is true that she has been somewhat more irritable, especially as the disease has progressed, but that pales in comparison to other situations with which I am familiar.

In addition, neither Kate nor I has had to deal with any other serious illnesses. That is unusual for people our age. We are approaching eighty, and Alzheimer’s is the only significant health issue for us. I have been sensitized to this fact when Kate has had a cold. That creates an extra demand for me, but it is nothing compared to other chronic illnesses.

Personal Experience/Characteristics of the Caregiver

Many caregivers for a person with dementia have little experience with the disease. They begin from scratch. Often, they are children caring for one or both parents. They face a steep learning curve that calls for knowledge of the disease itself while adjusting to the new role of parent care. This has to be incredibly stressful.

Kate and I had been caring for our parents and my father’s significant other for twenty-two years at the time of her diagnosis. Her father had a stroke and her mother vascular dementia. My mother had an unspecified form of dementia; my dad’s significant other had vascular dementia, and my father had a stroke. I feel as though everything I had learned from those experiences prepared me to care for Kate.

I also believe my personality makes caregiving easier for me than for others. I can’t take credit for that. I thank my dad. He was the same way. He kept his sense of humor and focused on everything he could see as positive and minimized the negative. He was a problem solver in his work and in his personal life. He had faith there was a solution to every problem he encountered. I think I am a bit more realistic than he was, but I recognize many ways in which he and I are similar.

If it were only the things I have outlined above, I believe my stress would have been less than that of other caregivers, but there is more. It involves the variety of ways in which I have been able to minimize my stress. I’ll save that for another day.

Thoughts on Caregiving and Stress

One of the major topics among caregivers and the professionals who provide services to them and to their loved ones is caregiver “burnout.” Marty Schreiber, the author of My Two Elaines and a former governor of Wisconsin, is a very active speaker at many conferences and workshops across the country. He vividly presents his story of trying to “do it all” himself and the toll it took on him. He encourages caregivers to care for themselves and to recognize and seek help when it is needed.

I share his views and have worked hard to minimize my own stress. I watched my dad deteriorate as he cared for my mom. I am much like Dad, but I am not resistant to bringing in help.

At one time or another, almost all of my friends have asked how I am doing and if I am getting help. I appreciate their concern. I am concerned as well. I do, however, believe that I am doing quite well. That’s not to say I don’t experience stress. I do, and it’s increasing. The good news is I’ve been able to manage it pretty well. Let me explain.

My stress seems to come from two distinctly different sources. One is the sheer number of responsibilities I have. The other is a psychological one that relates to watching Kate lose one ability after another with the knowledge that it only gets worse. In this post, I will discuss the stress arising from my responsibilities as Kate’s caregiver.

The 36-Hour Day is, perhaps, the best-known resource for families who are caring for someone with dementia. As the title conveys, the responsibility for caring for a loved one with dementia requires more time than anyone has available. The responsibilities increase as our loved ones decline. If we try to do everything, something has to give, that is, some things will go undone. Often that means caregivers neglect to take care of themselves. Up to now, that has not been a major problem for me. There are several reasons.

One is that I have help. I engaged sitters for Kate a year and eight months ago. I have someone with her three afternoons a week, four hours each time. That enables me to get to my Rotary meetings, to the Y, run errands, and meet with friends. In addition, I have help with house cleaning and the yard. That means I can focus my attention on Kate.

I don’t participate in a support group, but I feel I get support in a variety of other ways. I have two longtime friends from college with whom I am in daily contact by email. One lives close enough to us that we are able to get together several times a year. We have other friends who are close enough for us to make daytrips to see them as well.

Regular readers of this blog know that we eat out for all meals but breakfast and attend live performances like the music nights at Casa Bella and local theater productions. They are both beneficial for Kate and for me. We are not socially isolated. We have church friends and staff that check in on us. I am on a steering committee at United Way and meet with them monthly. I meet for coffee with Mark Harrington every Friday after finishing at the Y. In addition, I stay in touch one or two other friends who are caregivers. I shouldn’t fail to mention this blog and my involvement with Twitter. All of these keep my mind occupied as well as having therapeutic value for me.

In addition, my responsibilities as a caregiver have not been as daunting as those of most others. Quite a few people our age are dealing with other health issues along with dementia. Apart from an occasional cold, neither Kate nor I has had any other health problems to deal with.

Some caregivers face a variety of problem behaviors from their loved ones. Although Kate has been more irritable than she was before Alzheimer’s, she is good-natured, loving, and most appreciative of what I do for her. It would be much harder for me to cope if she were not.

Finally, I believe my past experience with caregiving has helped me. I am now in my thirtieth consecutive year of caregiving. Most of that was with our four parents and my dad’s significant other. Some of that involved overlapping care of three at a time. Fortunately, we had fulltime professional care for both of Kate’s parents. Each of our parents’ situations was different and helped to sensitize me to a broad range of issues. I haven’t felt that I was caught off guard when Kate was diagnosed.

All of this is to say that I haven’t experienced the same degree of stress that faces so many caregivers. I am very fortunate. As I write this particular post, I should note that my stress is at its greatest level. I find myself slipping to take care of a wide range of obligations. Most of them are inconsequential. For example, I had purchased tickets for us to attend a local variety production of Broadway music at one of our local theaters this past Sunday. It is something we would have enjoyed, and we had no other obligations. I simply forgot to put it on my calendar, so we missed it. There are other things that relate to the maintenance of the house that get less attention than they deserve. I have plans to address them a little at a time over the next year. As Kate declines further, I will retain additional help and will likely participate in one or two support groups, but, for now, my stress is still at a manageable level. I am grateful for the concern and support I receive from those around me.

A Change in My Morning Routine

I’ve been pretty open about my following a predictable daily routine. That’s especially true in the morning when I have the most control. After that, I seek routine but always bend to the necessities of the day. I find that I bend a lot more with the progression of Kate’s Alzheimer’s. Her recent changes and the summer weather have made a difference.

As long as I can remember my first order of business has been to eat breakfast. During the past four or five years, I’ve added a daily walk of 2 to 2.5 miles right after breakfast. Over the past few weeks, that’s changed.

I was initially motivated by the weather. The morning temperatures and humidity have been a little warmer than I like, so I decided to walk a little earlier. I tried that, but it was still too warm by the time I reached the mid-point of my walk. That led to what I previously would have thought to be the unthinkable – walking before breakfast. It took me a week to get fully adjusted, but it is working now. That first week I was so accustomed to beginning my other daily activities when I got back from my walk that I forgot to eat breakfast three times. It was only a little later in the morning that I felt unusually hungry. I quickly realized the problem.

One morning I was hotter than usual when I got home from my walk. I decided to cool off in the pool. I was only in the pool about twenty minutes, but I found it a nice way to end a walk, so that has become my new normal. I’m not sure how long I will continue that. I suppose that will be when the water is colder than I like. That shouldn’t be too long. In the meantime, I am enjoying the new routine. I think it may have some therapeutic benefits as well. I’ll say more about that in another post.

With Kate sleeping later than usual, the added stress as she declines, and the increase in the number of desserts we are now eating, I’ve increased the length of my walks. Instead of 2 to 2.5 miles I have gradually increased that to a little over 4 miles. Yesterday it was 4.5 miles. Today it was 4.6 miles. I’m stopping there.

Apart from its stress-reduction value, it also gives me more time for reading (listening). That is especially helpful with longer books. Now I am listening to A Gentleman in Moscow. It would take me 16 days walking my shorter route. My new one will allow me to do it in 12. I should also add that I have dropped almost five pounds. For the past couple of months, I have been five pounds heavier than I like to be. Burning more calories really helps.