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My Best Christmas Gift

As we approach the end of this Christmas season and the beginning of a new year, I am feeling grateful for many things. Most of all, I am grateful that Kate is still with me and that we continue to experience “Happy Moments” together. They come and go as she experiences different moods throughout the day, but I come to expect them at some point every day. Christmas Day was like that.

She was still asleep when the caregiver arrived at 11:00. After getting her up and ready for our Christmas buffet at 1:00, she was still quiet. She remained that way for the balance of the day. I call this her “neutral” time because she expresses little emotion.

I have also grown accustomed to very nice evenings with her after the caregiver leaves at 7:00. I wasn’t sure that night would be one of them, but I got in bed with her right after my shower and turned on a YouTube video of “Christmas in Vienna” from 2008. We attended that very concert. That led me to reminisce with Kate, and I extended that to include many other experiences we have had during the Christmas season as well as other special times throughout our marriage.

As I talked, Kate perked up and began to smile. This continued for almost an hour until it was time to call it a day. She never said a word during this time, but her facial expressions conveyed her happiness and her love. Most of the day hadn’t been that special, but it ended beautifully. Her smile, facial expressions, and holding her hand made all the difference. It was a beautiful way to end another Christmas Day together. That was my best Christmas gift.

Two nights later and again last night, we had very similar evenings. I know moments like these may seem trivial, but they mean the world to me at this stage of her Alzheimer’s. They are part of why I say Kate is my greatest source of stress relief.

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Something Funny

Among the many things for which I am grateful is the support and encouragement I receive from my family and friends. One of those friends called me Sunday morning.

As noted in an earlier post, I got my first hearing aids about a month ago. Since then, I’ve been learning how to use the app that came with them. So far, things have gone well. One of the things I like is the connection of phone calls to my hearing aids. Generally, it works like a charm, but I encountered a problem with my friend’s call.

When the call came in, I was listening to music. I didn’t think it was too loud, but I couldn’t hear my friend very well. At first, I thought it was because the music was coming from my phone, and the phone couldn’t handle two audio signals simultaneously. Then I realized that the music was really coming through my audio speakers, not my phone.

As my friend began talking, I tried to determine what I could do to hear him better. I opened the hearing aid app on my phone and turned up the volume from 1 (the lowest except for zero) to 15 (the highest). It helped, but it also increased the sound of the moving air coming from our apartment’s heating and cooling system.

I picked up the phone with my left hand and raised the phone to my ear. I could hear him better. I thought my friend’s voice must be coming from the phone and not my hearing aids. Then I tried a second time with my right hand, and I couldn’t hear him any better.

I thought about asking my friend if he would hang up and initiate another call, but I didn’t want to break the flow of the conversation even though I was missing much of what he said.

The noise of the airflow was making it difficult to hear, so I thought of a place where the air wasn’t moving. Ah hah, a closet. I went to the closet in our guest bedroom that is loaded with stuff I didn’t have room for in any other place. That included an old Hoyer lift to get Kate in and out of bed or her wheelchair. I purchased a new one about a year ago and stored the old one.

I walked into the closet and closed the door. I forgot to turn on the light, but I remained in the dark closet with the rest of the “stuff”.

I found that I could hear my friend pretty well, and we continued the conversation which lasted 40 minutes. As we were winding down to say goodbye, I rested both of my forearms on the arm of the lift that is the height of my shoulders. When I did that, my friend’s voice was much louder than at any other time in our call. I looked to my left where the sound was loudest. It was coming from my watch. In other words, I had accidentally answered the phone from my watch; therefore, our entire conversation had been via my watch. I told my friend, and we ended our call with a good laugh. A nice way to start the day.

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Sources of Stress in My Life as a Caregiver

I participate in three different support groups for caregivers. In virtually every one of the meetings, people talk about the various things they find stressful.

Most of the conversations in the groups with which I am involved deal with the frustrations caused by their loved one’s behavior. One of the most common is repeating the same questions over and over. Another is the loved ones’ denial of the diagnosis and the refusal to cooperate when the time comes to issues like giving up the keys to the car, needing a walker, or willingness to accept a caregiver. The frequency with which the others are mentioned varies a good bit with the individual situations and the stage of the dementia.

At present, I believe my greatest source of stress relates to Kate’s in-home care. I emphasize “present time” because I depend more heavily on paid help now that Kate requires total care. When caregivers are sick or have other personal issues that prevent them from being on the job, it is stressful for me.

These situations have always occurred periodically since I first engaged paid help six years ago in September 2017. In the beginning, this was a minor issue. For the first three years and two months, the caregivers’ responsibility was simply to be a companion for Kate, and we had help only three days a week for four hours a day. If a caregiver was late or unable to come, it was not a big problem.

Life is very different now. For almost three years, Kate has required Total Care. Without help, I can’t get her dressed, out of bed, and into her wheelchair. I need help more than ever.

That leads me to another problem – getting someone who can come regularly. For the past two-and-a-half years, we have been fortunate to have two different people who were with us for eight hours a day Monday through Friday. One of them was with us for a year and a half. The other left after a year. To cover the weekends, We have had two people who alternate weekends. One of those has been with us two years this month, the other person has been with us for close to a year.

Four weeks ago, our latest Monday through Friday caregiver developed a health issue of her own and had to resign. The agency that provides our caregivers has had trouble finding people who would commit to a full 8-hour shift. As a result, they have divided the day into two shifts of 3-5 hours. Since then, we have had 28 new caregivers. On top of that, one of my regular weekend people called two Saturdays ago to say she couldn’t come. Another new person came to take her place. That makes 29 new people in four weeks.

I am working hard to maintain a cool head, but I have to admit that it has been quite stressful.

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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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Not Everything Goes Well

In my previous post, I described “An Extraordinary Day” with Kate. In many posts prior to that, I have discussed other “Happy Moments” in our lives. Monday, we had an experience that was the opposite.

One morning several months ago, I walked into our bedroom to see if Kate might be awake. She was, and she looked very frightened. When I got closer, I could see that she was hot. Her skin was clammy. I took her temperature, and it was normal. She was very agitated. I took her blood pressure, and it was 190/100.

That led me to call the doctor who came to our apartment accompanied by his nurse. They also took her vital signs and got the same results. It didn’t seem as though she was ill. They remained around for a short time, and she calmed down.

Several years ago, Kate experienced delusions and hallucinations periodically. Most of the hallucinations were not unpleasant at all; however, there were occasions when she was frightened in the morning. It was easy to spot even though she wasn’t able to tell me what bothered her.

My interpretation of her problem was that she woke up without knowing where she was, who she was, or who I was. On a couple of occasions, she asked, “Who am I?” I dealt with that by getting into bed and comforting her. I explained who she and I were and where we were. Mostly, I just lay there holding her hand and saying comforting things.

Nothing like that had happened in years, but the doctor and I decided she had had a delusion of some sort and was simply scared. The intensity of her reaction was much greater, and, afterward, I wondered if we might see more of this in the days ahead.

Nothing like that happened again until Monday morning. The symptoms were the same as they were before. She looked frightened. She was hot but did not have a temperature. Her skin was clammy, and she was agitated. Her blood pressure was 195/104. This time I didn’t call the doctor. I got in bed and moved close beside her and tried to comfort her. I also put on some soft music that I know she enjoys. About thirty minutes later, she was calm. She was fine the rest of the day. In fact, she had “Happy Moments” the rest of the day, but will this be something she experiences again? Right now, there is no way to know, but time will tell.

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An Extraordinary Day

Once in a while, I highlight unusually positive experiences that I call “Happy Moments.” I use the word “moments” to emphasize that the experience is not usually long-lasting although it can occur over several hours.

On a typical day, Kate doesn’t express much emotion until the afternoon. She rarely says a word until after 2:00. This past Friday was very different. It began about eight o’clock in the morning and lasted until she fell asleep around 8:30 that night. It was a day filled with “Happy Moments.”

Kate generally sleeps late. Sometimes, she is asleep when the caregiver arrives at 11:00. Recently, however, she has waked up as early as 7:00. At 8:15 Friday morning, I checked on her. As I approached the bed, I could see that her eyes were open. I have a little routine that I follow each day when I see that she is awake. I say, “I think I see Kate. Yes, it is Kate. She’s my Texas gal. I’m so glad to see you.” Then I remind her that we started dating in our senior year of college, fell in love, and became engaged a year later. I go on to tell her that we’ve been married sixty years, and have two children, and five grandchildren.

Sometimes, but not always, she smiles. That day she smiled and started talking. She has aphasia, so I couldn’t understand much of what she said, but, as usual, I tried to play the role of facilitator saying things like, “Really?” “Tell me more.” “That’s interesting.” From that point, I got beside her in bed, and we began to talk. She dosed a few times, but we talked on and off until the caregiver arrived at 11:00.

A new person was filling in for our usual caregiver, so I wasn’t sure how Kate might respond to her, but she was fine as I left for lunch. While I was gone, the caregiver walked Kate around the hallways in her wheelchair and stopped to visit with residents in a couple of places. I learned later that she had been smiling and talking with other residents who had stopped to say hello.

Friday afternoon I had coffee with a longtime friend. When I arrived home, I went directly to the café where the caregiver had taken Kate for ice cream. I walked up behind Kate. As I looked around to see her face, she gave me a big smile. That happens frequently but not always. When it does, it warms my heart.

From there, we went to dinner in the community dining room where she always receives a lot of attention from the staff and other residents. She remained cheerful and talkative the entire meal. I can’t tell how long moments like these will last, and this time I was in for a surprise. She remained the way she had been all day until I turned out the lights around 8:30. It was an extraordinary day, unlike any I have seen before. I treasure moments like these.

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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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Something New, and It’s Good

For the past two and a half years, Kate and I have followed a rigid routine. The caregiver arrives at 11:00 each morning. The first item on the agenda is to get Kate dressed and out of bed. Until recently, we put her in a recliner in a sitting position where the caregiver served her lunch. She remained in the recliner until we went out for ice cream shortly after 3:30.

While I was away, Kate often felt sleepy, and the caregivers got in the habit of setting the recliner in a reclining rather than a sitting position. I began to feel that she was spending too much of her day on her back and decided to move Kate from her bed into her wheelchair instead of the recliner. Originally, I was concerned that being in the wheelchair all day might be uncomfortable for Kate, but she accepted the change without a problem.

After we changed our primary caregiver 3-4 months ago, the new person asked if she could take Kate out of the apartment. I told her that would be fine. It turned out much better than I thought. She has responded well to the additional attention she receives. I meet them for ice cream after returning from lunch. I frequently find them talking with other residents and staff in much the same way as when I am with her. Kate herself doesn’t often say very much, but she often smiles. That lets all of us know that she is happy.

This has now become a regular part of our daily routine. I’ve always felt that even the best of our caregivers don’t give her as much attention as I would like. The new routine solves that problem. It works for everyone. Kate and the caregiver like getting out of the apartment and mingling with other residents and staff. I, too, like it because it provides Kate more stimulation than when she and the caregiver are alone in our apartment. It’s a “Win-Win-Win” situation.

This is another reminder of the importance of intuitive thought or abilities. This change did not stop the progression of her Alzheimer’s. Her rational thought or ability hasn’t improved. Her memory of people, places, and things is gone. Her aphasia means that she says very few things that we can understand.

Nevertheless, all is not lost. Her intuitive thought and ability remain. As a result, we continue to enjoy life and each other. What more could I ask at Late Stage Alzheimer’s?

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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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Kate’s Connection With A Caregiver

I know I sound like a broken record, but I want to add another Happy Moment to this blog. We don’t experience such moments 24/7; however, Kate has gradually improved during the past year. She continues to surprise me with her cheerfulness, smiles, and overall good humor.

I wondered how it would go when I learned that our previous M-F caregiver was going to fill in for our new caregiver one day this past week. It turned out beautifully and began the moment she arrived. When Kate saw her and heard her voice, she burst into one of her biggest smiles. It was obvious that she remembered her.

I’ve written before about this caregiver. She was especially attentive to Kate, and they bonded. Almost a year ago, I nominated her for “Employee of the Month,” an honor she received in March. That put her in contention for “Employee of the Year” among the winners of the other eleven months. She won that award as well. I was very disappointed to lose her, but she was having back problems and also wanted a change in her schedule that didn’t match our needs.

The day went very well, but the “Grand Finale” occurred after we returned to our apartment following dinner. Kate and the caregiver began what was at least a 15-minute conversation. For someone with aphasia who rarely speaks that is remarkable. She was perfectly comfortable and talked as much or more than the caregiver. It warmed my heart to be an observer.

Nothing has happened that could match that since then, but the past few days have also been good ones. Three days in a row Kate woke up with a smile, and yesterday she was also talking. This is not typical. That’s another change that has occurred more often in recent months. My explanation for the changes she has made in the past year has occurred because she feels more at ease. She receives a good bit of reinforcement from everyone, which makes her even more at ease. It also makes me very happy.

Addendum

At the time I uploaded this post yesterday morning, the first sentence in my closing paragraph was true; however, I couldn’t anticipate what would happen yesterday afternoon. When I returned from lunch, I found her especially cheerful and talkative. She and I talked steadily for almost an hour before we went out for her daily ice cream and dinner. She was less talkative during these times, but the situation was less conducive to conversation. When we came back to the apartment, we continued to talk. That lasted until she was in bed for the night. I took thirty-four short videos (mostly 20-45 seconds) during our conversations. It was an amazing experience.