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“All Is Well That Ends Well”

Thanks to everyone for your kind words of encouragement as I faced a minor bump in the road with the norovirus. I discovered one good thing about the virus: It is short-lived, often lasting only 3-4 days. In my case, it was 3 days. I know of several other people for whom it lasted only 2 days.

More importantly, Kate has shown no signs of catching it. I still have my fingers crossed, but it looks like she may have escaped.

As I said in my previous post, we all encounter surprises that require our immediate attention away from other things that are more important to us. In my case, Kate has always been my primary concern, and I am grateful that, as of today, she remains happy and safe.

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There Are Always Surprises

People “Living with Alzheimer’s” face frequent surprises, just like everybody else. I caught the norovirus this past Friday. Based on what I’ve heard from others, my case seems to be somewhat milder than they have experienced.

My primary symptom is an upset stomach. I was up four times on Friday night to toss up whatever I had in my stomach. There wasn’t anything left on the fourth try. I got a prescription for nausea that works reasonably well. I will run out of that today and hope that is all I need.

In addition to the stomach problem, I’m not as “peppy” as I usually am. I’m not a napper and hadn’t taken a nap in more than twenty years, but I took a 30-45-minute nap on Saturday and Sunday.

Of course, my primary concern is Kate. The last thing I would want is for her to catch it. I’m working hard to avoid direct contact with her, but that is difficult. So far, she is fine. She had an especially good day yesterday. She was very cheerful and talkative. That certainly brightened my spirits.

Once again, I am experiencing the benefits of living in a retirement community like Still Hopes. Our doctor’s office is downstairs and a short walk down the hallway to the building next door. My next-door neighbor brought me a package of disinfectant wipes and bottles of flavored water to help me avoid dehydration.

I’m optimistic that I’ll soon be well again and trust that Kate will be able to avoid getting the virus. Time will tell.

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Health Aids and Technology

Since moving into our retirement community, Sarah and I have had more than the usual contact with people who have a wide variety of health issues. I have to admit that we have our own to deal with. Sarah’s primary problem is her Alzheimer’s, but she was also hospitalized with Covid three years ago and had a stroke two years ago in February.

I’ve been relatively fortunate. My biggest problem has been dry eyes which makes reading a challenge. For the past two or three years, my hearing has also become a problem. Like so many things, I found it easy to postpone taking any action; however, my hearing has deteriorated during the past year or so. It has been especially difficult to hear the speakers at my Rotary meeting and other large gatherings. Even in a group of one or two friends at lunch, I’ve found it hard to hear.

I finally decided to take action. After speaking with several people about their own experience with hearing aids, I called a few places for an appointment. I quickly discovered that I wouldn’t be able to get in right away. When our son and his wife were here a few weeks ago, I went with them to Costco. I was able to set up an appointment for the following week. Within two weeks, I had my hearing aids.

The next step is getting used to them. Upon leaving the hearing office at Costco, I was immediately struck by the noise in the store itself. As I walked to my car in the parking lot, I heard a loud crashing sound behind me. When I looked, it was simply a man and his wife pushing their cart with their purchases. Then I passed a couple about twenty feet away who were putting their items in their car. I could hear every word they were saying.

At home, I hear lots of noises I hadn’t noticed before. Simple things like water flowing from a faucet and taking items from cellophane wrappings are much louder now. I guess I shouldn’t be surprised that my own voice is the loudest voice I hear. After all, I am closer to the mike than anyone else. I had been missing more than I thought. Some of those I could live without. The good news is that I can hear, and I am told that my brain will adapt to these new sounds in a month or so. I hope that’s the case.

It wasn’t much of a surprise to learn that current technology has had an impact on getting and using hearing aids. That began with the initial hearing test itself but has become a new addition to my daily living. That involves two new devices to charge. The hearing aids themselves require a daily charge, and they also come with a portable charger that needs to be charged every few days.

Of course, the hearing aids come with an app for my phone. That allows me to raise and lower the volume, and block out (not perfectly) sounds behind, in front, or to the right or left of me.

In addition to my hearing aids, I am now wearing a heart monitor for a month. I am hoping this is just an irregularity in my watch and phone, but the monitor should soon provide an answer.

This began a month or two ago when I noticed that (according to my watch) my heart rate made a number of unusual changes during my exercise on the seated elliptical. Normally, my exercising heart rate ranges between 85 and 100, but I noticed a few occasions when it would jump to 135, or 155, and twice 195. I thought this was peculiar for a couple of reasons. First, I hadn’t observed changes of this magnitude before. I also thought the changes were dramatic enough that I should have felt something, but I didn’t. As far as I could tell, my heart rate had remained within the limited range my watch had measured previously.

At a regular appointment with my doctor, she referred me to a cardiologist for a heart monitor that I am wearing for a month that ends next week. This involves two devices. One looks like a mobile phone and is called the monitor. The other is the sensor that is attached to my chest. The sensor is connected to the monitor by Bluetooth. The monitor transfers the data about my heart via Wi-Fi to the company that owns the monitor. They forward the information to my cardiologist.

As you might guess, this involves more devices that have to be charged. The monitor needs to be charged daily. The sensor requires a 4-5-hour charge every five days. As a result, I now have to charge 8 different devices – my computer, my phone, my iPad, a Bluetooth speaker, the hearing aids, the charging case for the hearing aids, the heart monitor, and the sensor. At least, I live in an apartment where the utilities are included.

One of the nice things is that that this is a completely wireless system. That allows me to take a shower without taking off the monitor. That assumes I don’t drench it. A few splashes are all right. I should say that devoting my attention to technological issues keeps me from worrying about any negative health news I could receive based on the data being collected. At this point, all is well.

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Thirty-four Years of Caregiving

Thirty-four years ago this past Saturday, November 11, 1989, Kate’s father had a massive stroke. It had been preceded by several TIAs, but his stroke had a major impact on his life and the lives of his family.

Until that time, Kate and I hadn’t given much thought to caregiving for our parents. We were empty nesters focusing on making the most of our time together while completing the remaining years before retirement. We never stopped doing that; however, we took on a new role as caregivers.

It began with her father’s stroke. He died four months later. During and after that, we found that her mother also needed care. Several years later, she experienced a stroke as well and developed vascular dementia. Ultimately, we brought her to live with us for 5 ½ years with 24/7 in-home care before she died in 2005.

In the mid-90s, my parents moved to live near us. I didn’t know at the time, but my mother had an undiagnosed form of dementia. She died in 2002, but my father had a significant other who developed vascular dementia. We helped him take care of her until her death in 2009. That same year, my father had a stroke, and in 2011, Kate was diagnosed with Alzheimers.

My father died in 2013. Since then, I have been able to give my full attention to Kate who is in the last stage of Alzheimer’s.

Caregiving always comes with a variety of challenges, but it can also have its rewards. The most important reward for me has been the opportunity to walk with loved ones through the last chapter of their lives. They did a lot for me, it has been rewarding to be able to do something in return.

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Update on Kate’s Aphasia

I can’t pinpoint a time when Kate’s aphasia began, but I wrote a post in September 2019 about her loss of words and difficulty explaining things. Over the past four years, her aphasia has progressed considerably. Her stroke almost two years ago also had an effect on her speech. For a good while after the stroke, she didn’t speak at all. Since then, she has gradually improved. Over the weekend, I compared two videos. One was taken three months before her stroke and the other one Saturday night. The change is striking. Two years ago, she was able to speak much more clearly than now.

Today, she speaks very little. Most of the time when she encounters residents and staff, she doesn’t say a word at all. That is also true for her time with her caregivers and with me; however, she surprises us almost every day with words that we can clearly understand. For example, last week while the housekeeper was cleaning our apartment, she hit something that sounded a little like a knock on the door. Kate was lying in bed adjacent to the room where the housekeeper was working. Without any hesitation, she said, “Just a minute.”

Because such clarity of speech is rare, I jot down some of the things she says. Here are a few examples.

September 30 (In the Dining Room)

Server:          “How are you tonight?”

Kate:             “What about you?”

A few minutes later

A resident at another table tapped on the table.

Kate:             “Come in!

September 26

At Café for Ice Cream

Caregiver:     “Would you like some water?”

Kate:             ”Yes, please.”

When finished:

Kate:            “Thank you.”

September 21

Putting Kate to Bed

Richard:        “I’m going to be with you all night.”

Kate:             “Really?”

Richard:        “Yes.”

Kate:             “Great!”

September 8 (After getting Kate to bed)

Richard:        “I love you so much.”

Kate:             “I know you do.”

August 30 (After the podiatrist finished trimming her toenails)

Kate:             “Good job.”

August 28

Richard:        “I’m going to take my shower. Then we can have an evening to ourselves.”

Kate:             ”I like it.

August 17 (At dinner, Caregiver feeding her)

Waiting for the next bite of food

Kate:             “I’m ready.”

August 2     

In apartment after dinner

Kate:             “Are you going to stay home?”

August 2

After going to bed

Richard:        “You’re a beautiful gal, Kate.”

Kate:             “You, too.

August 1

Shortly after getting her in bed. I notice that her eyes are open, and she is smiling.

Richard:        “I’m right here where I like to be.”

Kate:             “Great. You’ll be here?”

July 18         

Daughter of caregiver stops to say hello while Kate is having ice cream downstairs

Daughter:      “I’ll see you later.”

Kate:             “Really?”

Kate looks at me and says: “She’s so nice.”

In dining room

Kate:             “I love it.”

Caregiver      “What do you love?”

Kate:             “I can’t tell you.”

Of course, my personal favorite occurred a week ago. She woke up early one morning and was talkative. I took several videos, but I didn’t understand anything she said in the first few. By chance, however, at the end of the last one, she said three words that I couldn’t mistake, “I love you.”

Note that these snippets are very short statements. There are times, however, when she is talkative. When that happens, there are a few clear words mixed with gibberish. Regardless, I treasure everything she says. I am grateful just to hear her voice.

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“Living with Covid” While “Living With Alzheimer’s”

It’s been a little more than two-and-a-half years since Covid invaded our world. We all have stories we can tell about the ways in which that has affected us. Kate and I are no exception.

Although Covid has had a continuous impact on us, there are three specific events that are worth mentioning. The first occurred in mid-March 2020. That’s when restaurants and other businesses began to close. Prior to that, Kate and I had been eating out for lunch and dinner every day for eight or nine years. It made life easier for us than my preparing dinner and gave me more quality time with Kate. Along the way, we also went to Panera almost every morning where Kate got a muffin. In the afternoon, we often went to the café at Barnes & Noble. The greatest benefit of these daily routines was preventing us from being socially isolated. We often saw friends at these locations and became acquainted with servers, managers, and other personnel.

The pandemic brought that to an abrupt end. During the first week or two of the pandemic, Kate also lost her ability to work jigsaw puzzles on her iPad. That was her last remaining self-initiated activity. Daily living suddenly became less exciting for both of us. As Kate’s caregiver, that meant I had to work harder to keep her occupied.

The change in our active routine left her bored much of the time. She started napping more throughout the day. I read to her and played music for her, but that wasn’t enough. I also gave her tours of our house, pointing out pictures and furniture that had some connection to her and her family or to special events in our lives.

In spite of my efforts, there were moments when she wasn’t engaged in any activity. That led to her resting more during the day. We had lost a significant portion of the experiences that had given us so much pleasure before.

Of course, the biggest impact of Covid was that both of us tested positive for the virus just before Thanksgiving in 2020. Kate was in the hospital for eight days without me. The experience was traumatic for her. She was so frightened when she returned home that we were unable to get her out of bed for seven weeks. Before getting Covid, she was already on the verge of losing her mobility. Being in bed for so long pushed her over the edge. She has never walked since.

Our third experience with Covid began almost two weeks ago when I tested positive for the second time even though I had received all of the vaccinations and boosters. It’s been a mild case. My only symptom was a sore throat. The policy here in our retirement community is for people with Covid to stay in their apartments for the first five days. For the next five days, you can leave the apartment if you are wearing a mask, but you can’t eat in any of the campus venues.

The social isolation we experienced was reminiscent of the early days of Covid when we could no longer go out to eat. This appears to have had a greater impact on me than on Kate. I miss the contact with other residents and staff. They have played a major role in our lives since we moved here a year and eight months ago. I miss that and will be eager to get back to our normal routine starting today. That’s just in time for a visit from our daughter and son this weekend. We’ll have much to celebrate.

My biggest concern has been the possibility of Kate’s getting the virus. By now, it looks like she has escaped. The biggest and best surprise is that she had four or five outstanding days while we were restricted to our apartment. Not surprisingly, much of that involved music. In addition, however, she has been talking more. That has been especially noticeable with two of her caregivers. One of those is our primary caregiver with whom she feels quite comfortable.

On Sunday, one of our weekend caregivers took an extended amount of time to go through one of Sarah’s family photobooks with her. Kate didn’t seem to notice the photos, but the caregiver told her about the information explaining them. Kate not only took an interest, but she also began to talk to the caregiver. The next thing I knew they were having a semblance of a normal conversation. It wasn’t completely normal because much of what Kate said was impossible to understand. This was especially striking to me because Kate has never shown any special connection or feeling for either of our weekend caregivers.

The story doesn’t end there. When it was time for dinner the conversation ended. Kate took the caregiver’s hand and kissed it. Then after getting Kate into bed, the caregiver told her goodbye. I said, “Wasn’t it nice to have Malia with us today?” Kate looked up at her and said, “Thank you.”

Last night, we had a wonderful time together. Like any other night, we watched YouTube music videos, but there was a difference. Kate has never been as enthusiastic about symphonic music as I have, but last night I played Dvorak’s Symphony No. 9 and Tchaikovsky’s Symphony No. 5 back-to-back. She loved both works, and I was thrilled.

As the music played, I did two things that I believe facilitated her response. First, I explained what was happening as the orchestra moved from one movement to another. For example, at the last portion of both symphonies, I let her know that the music was going through a buildup to the grand finale when the tempo would increase and the music would be much louder. Second, in several portions of the music, I emphasized the rhythm by audibly saying things like “bump da da bump da da bump, bump, bump.” At the same time, I held her hand and moved her arm back and forth. She was fully engaged and laughing. I hope we’ll be able to repeat our performance again soon.

Thus, I am coming to the end of our quarantine with a good feeling that Kate appears to have missed Covid, and she has had an extraordinary series of moments that have been very special to both of us. Life is good, and I am grateful.

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Living with Covid Again

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

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

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

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

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

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

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

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A Brief Update

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

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

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

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

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Covid Still Affects Our Lives

During the early stages of the pandemic, people talked about getting back to normal. By now, all of us are getting accustomed to making further adjustments to our lifestyle. That may be especially true for those us living in retirement communities. Kate and I have enjoyed the many benefits of community living, but the potential for the spread of Covid results in quite a few changes over time. Significant changes were in effect before our move fourteen months ago. They have continued off and on since then. The latest was last week.

For a year, menu service had been discontinued and replaced with a buffet. As the threat of infection had decreased, the rules had loosened. One of the most welcomed changes was returning to menu service in the dining room. We were informed last Thursday that our regular menu had been temporarily discontinued and replaced once again with a daily buffet. The decision was based on an increase in positive tests for residents and the food service staff.

Kate and I had Covid two weeks before Thanksgiving in 2020. Since that time, we have had our vaccinations and boosters and avoided any potential infections. This didn’t prevent our being among those affected. No, we didn’t test positive, but we were in contact with a member of the food service staff who did. As a result, we were “semi-quarantined.” That meant that we could go outside our apartment, but we had to wear a mask. All large-group activities were canceled. More significantly, we couldn’t eat in any of the dining facilities. We returned to carry-out meals.

In the scheme of things, this was a minor change, but our primary social engagement is in the afternoon when we get ice cream and have our evening meal in the dining room. The policy here is that one must remain as isolated as possible for a period of ten days after contact with someone who tests positive. As it turned out, we didn’t learn about the contact until four days later. That meant we had a shorter period of isolation and are now back to our regular routine except that, like all residents, we will continue to have buffet meals rather than ordering off the menu. That isn’t a problem for us. The meals are generally good. The downside is that the food is not as hot as it is when we order from a menu.

We weren’t cooped up for long. After eight days, we were still symptom-free. And we reinstated our routine afternoon trip for ice cream as well as evening meal in the dining room. The temporary removal from social engagement made me more appreciative of the benefits we have of living in a community like this. In addition, the benefits are not just for Kate, but for me as well, probably more so.

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Another Bump in the Road

It’s been three months and one week since Kate’s stroke. She has made a good recovery except for her speech and her right leg, but Friday, we hit another bump in the road. She had a TIA. Just before leaving for lunch, I walked over to Kate to tell her goodbye. The caregiver, who was feeding her, told me that she wasn’t eating. It didn’t appear to me that anything was out of the ordinary. Sometimes she rejects a bite of food or a drink but takes it if offered to her again. I told the caregiver to try again, and I left.

When I returned, I went directly to Kate who was in her recliner. She smiled at me, and I took her hand. She tried to talk to me, but I couldn’t understand her. That’s not unusual, especially since her stroke. Then, I noticed that her mouth was drooping slightly. As she talked, the droop went away. I immediately thought that she might have had a TIA. I called her doctor and told him about it. I also conveyed that it appeared that she was all right now.

Since she seemed to have recovered, we went downstairs for ice cream. She was quiet but she ate all her ice cream. While we were there, I asked the caregiver to tell me more about what happened as I was leaving. She told me that Kate didn’t eat her lunch and that she had fallen asleep. I probed a little and discovered that what she observed was very similar to what I had observed when she had her stroke. She just drifted off, and that lasted about 10 minutes. When I heard that, I felt sure she had had a TIA and was beginning to recover when I got home.

We also went to dinner in the dining room. During that time, she began to get sleepy and didn’t finish her dinner. We bought her back to the apartment and put her to bed. She went to sleep right away, slept through the night, and most of the day Saturday. She ate all her lunch and dinner. That was a good sign. She went back to sleep shortly after dinner, but she awoke for about an hour before I called it a night. She didn’t say a word during that time, but she held my hand and stroked my arm with her other hand. That was a good way to end the day.

Sunday was another day of recovery. She was awake early but went back to sleep a few minutes later. The caregiver arrived at noon, and I went to lunch. When I returned, the caregiver had gotten Kate up and dressed and in her recliner. She was quiet but not asleep. We got our afternoon ice cream and dinner without any problem.

She went to sleep quickly when we put her to bed but woke up less than an hour later. We spent the rest of the evening watching music videos on YouTube. She never said a word, but she gave me a big smile, the first one since Friday. She also held my hand and stroked my arm. Obviously, she can communicate her feelings without words. That makes me feel good.

She’s awake early this morning. I am beside her in bed finishing up this post. I’m not ready to predict what, if any, lasting effects she will have, but I am hopeful that she is going to make a good recovery. She is very resilient.