Chapter Four

3.8.2022

Gayla has now forgotten our normal daily routines. Yesterday, she asked, “Where do we put the recycle stuff?” Today, “How do I let Moxie out to pee?” Each night now, I wonder if she has remembered to feed Moxie. This loss of awareness increases my responsibilities and is something I need to pay attention to. Moxie will get fed.

3.11.2022

Over the course of our lives, each of us has some moments that stand out as exceptional, moments that will always be remembered. For me, today was one of those. I presented Gayla with the short life history book I prepared (Gayla: A Fun Reminder of How Incredible You Are!) that recalls her memories as a child growing up and my memories of our years together from when we met through our early retirement adventures. By itself, this was a special gift. But the thrills that made this gift particularly special were the comments from her closest friends about who she is and what she has meant to them. The messages they left are stunning in their sincerity and respect. She is a remarkable friend who has touched people deeply, and to give her a book that memorializes their love and concern was as meaningful as anything I have done in recent years. Seeing her joy in receiving it, after all she is going through, was as rewarding as anything I have ever done. 

3.12.2022

We have known from the beginning that the Alzheimer’s journey is a rollercoaster. Today was a reminder. Gayla woke up with a sense of joy and fulfillment because she remembered the good vibes that came from yesterday’s gift of the book. But as soon as it was out of her sight, it was forgotten. Later, before I left for an errand, I opened the book to the comments from her friends. When I returned Gayla was upbeat and said that she had read her friends’ comments. She was honored and humbled and unsure that the comments were an honest reflection of who she has been. “I never thought of myself as the kind of person that anyone else would want to be like. I just didn’t think about things like that.” How thrilling it is to know that now, when her self-confidence has been diminished by Alzheimer’s, she can feel that respect. This is a time to remember.

I need to let Gayla’s friends know that they have rejuvenated me, inspired me. I have loved Gayla all my adult life. Watching the decline and seeing her inability to do simple things is devastating. But hearing her laugh and seeing her smile is a reawakening.  

4.6.2022

One month after receiving it, Gayla is still relishing her new book (when she remembers it). She has reread it several times, and it has given her renewed feelings of happiness and pride. This experience has made a huge impression on me. I believe that personal messages and histories like this can be powerful tools for other Alzheimer’s families in the future. Alternative ways to rekindle memories include old photos, videos, and familiar music. The book, photos, videos, and music can make Gayla’s eyes twinkle – at least briefly. But as the disease progresses, I don’t know how much longer these remembrances will work their magic.

4.11.2022

The level of confusion is reaching new heights. Conversations with Gayla are almost always disjointed. Her love, heart, and values remain constants that can be counted on, but rational discussions are lost to history. There are times when this creates a deep frustration that I find hard to control, and I wonder how much longer I will be able to do so. The real Gayla that is being defeated by this ugly disease is becoming more and more distant. How do loving, caring caregivers endure this?

4.19.2022

Today was wonderful, brutal, and then wonderful again. But this is the nature of the disease. Things can work out relatively well when I’m an effective orchestra leader – reacting quickly to changing moods or when Gayla is overcome by boredom. But I am no miracle worker, and when I miscalculate or drift away, the challenges multiply. I look forward to being able to participate in Balfour’s new “Caring for the Caregiver” support group. As Gayla’s illness progresses, caregiving is becoming more complicated. Fresh ideas from other people should be helpful.

4.20.2022

Today we attended a monthly social function in our community. It is hard listening to Gayla tell stories about her past that are false. After one conversation in which she related that we had met in New York (wrong, we went to CU together) and she had been the principal at South High School in Denver (earlier she had recalled that she was principal of Fairview – both stories untrue), I opted to take her home and enjoy a peaceful conversation on our deck. We had a great evening, sans the stress that I feel when she tells neighbors stories that are incorrect. The thing is that Gayla never lies. Her memory just has left her, and whatever is reality in one moment may be totally forgotten in the next.

4.24.2022

After dinner tonight, Gayla captured where we are in the journey when she said, “This has been fun, the last three or four years since we got together. I’m glad we found each other.” This is a confirmation that I am often no longer her “Pete” but am a more recent being in her life. Previously, Brooke had experienced the finality of this revelation, but now we share the loneliness of this difficult separation. 

5.17.2022

I have known for a while that I cannot expect Gayla to remember a sequence of requests, but it is now clear that even one request can be lost immediately. She is great about wanting to help, but I need to steadily watch to make sure she doesn’t get misdirected. It is so hard to see this incredible person struggle with such simple activities.

5.19.2022

This morning, Gayla thought everybody in our house (including imaginary beings) were constantly telling her that she was stupid. Once she is in this frame of mind, I have learned to change the subject. I suggested we take Moxie to the Davidson Mesa dog park. It worked for a while, but she later slipped back into a negative mindset. Going to dinner at Gordon Biersch and coming home to reread the book I put together for her cleaned the slate. We ended the day hugging and looking forward to tomorrow. I am not sure how long my social skills will be able to overcome the challenges, but I’ll keep trying.

5.23.2022

When we are walking Moxie, Gayla still walks on the left side of the sidewalk and cannot remember to move to the right side when people are approaching. But she has a new habit that is more irritating. She disregards my “Pete Time” sign and walks into my office without notice as often as five times an hour. She silently stands behind me when I am at my computer overlooking whatever I am working on without making her presence known. It is all totally innocent, and when I ask her not to do that, she forgets. I am tired. I need for the day program with Cherrywood to get underway.

5.28.2022

“I haven’t cried very often, but frustration builds and tears well up more frequently now. Gayla and I share a deep love, but we are finding more difficulty connecting.”

I haven’t cried very often, but frustration builds and tears well up more frequently now. Gayla and I share a deep love, but we are finding it more difficult to connect. The hardest thing seems to be her flagging ability to understand the simplest realities of the moment. I wish I could find a villain, but there is none. We are trying our best, but this is a low point for me.

6.5.2022

In retirement, I have found that giving is the most satisfying source of happiness and fulfillment that life has to offer. However, at today’s support group meeting, the group concluded that while taking care of an Alzheimer’s patient may be important for the care recipient, we should also acknowledge that caregiver’s lives matter just as much. Thank you, Barbara, for making this point. This is not the way I have viewed my caregiver role, and it will take some time for me to digest it. I know that Gayla’s decline has made her world smaller. What I have not accepted is that it has made mine shrink as well. It is time for some self-reflection.

6.13.2022

The cumulative effect of the last three years is wearing me down. Gayla has lost her ability to entertain herself. Puzzles have been gone for a long time, and now reading is difficult for her, probably because she has lost her short-term memory. She no longer has the initiative to do much beyond walking, sleeping, staring into space, or following me around. When she is engaged in conversations, her mind wanders, and she loses track of what is happening. She now relies almost entirely on me to fill the void. Pete Time, which was so beneficial when we first started it, is now constantly interrupted because she doesn’t have anything else to do, and she disregards the sign on the door. 

I also think that repetitive, vacuous conversations have an adverse effect on me. I’m tired, my ability to concentrate seems to be declining, my thinking is less crisp, and I seem less patient. The need for me to find breaks from caregiving is increasingly apparent.

6.18.2022

As time passes and the stress and fatigue of caregiving mount, it has become increasingly difficult for me to maintain a positive attitude. I have always wanted to be a loving partner and caring caregiver, and my goal has been to have Gayla end each day with the thought, “It’s been a good day.” But as the curse of Alzheimer’s takes its toll on Gayla, it is affecting me as well.

Months ago, I noted that creating moments of joy was a terrific caregiver strategy for day-to-day living, but it was not well suited for dealing with heart-breaking issues like losing the right to drive or moving to a memory care facility. For me, there is another issue that is unfolding, for which creating moments of joy has no answer. While my focus has been on Gayla’s happiness, I have neglected my personal needs. This magnifies my stress and fatigue. I fear becoming selfish, but pressures are increasing. The day program at Balfour is now a holy grail. (Maintaining Caregiver Health)

6.23.2022

As I sat at the dining room table doing a sudoku this afternoon, Gayla approached with her phone in her hand and asked me if I could help her. She said she was trying to call Pete. I responded that I was Pete. She replied that she wanted talk to “my Pete.” I said, “You mean the Pete that you married years ago?” She said, “Yes.” I replied, “I’m an older version of that Pete. Sometimes I serve as his double.” She said, “But I want to talk to him.” So, I said “Would it help if I went outside, you called him, and I answered.” She said, “Yes.”

I showed her how to call me on her phone and went outside. When she called, she said, “I miss you. I haven’t seen you for a long time.” I replied that I would always love her and would always care for her.” When I went inside, she was still confused. So, I asked her if it would help if she went out on the front porch and rang the doorbell, and I answered. She thought that was a good idea. She went out and rang the bell. When I answered, she came in, saw me, and was happy that we could finally reconnect. Confusion reigns but love and caring always seem to be the best answer.

7.3.2022

Several times, Gayla has said that she wants to go home. But she doesn’t know where home is. When I tell her she is home, she seems confused. I’ve been told that the phrase “I want to go home” is her way of saying, “I’m uncomfortable right now.” If I come up with an idea that distracts her, the problem usually goes away. 

7.10.2022

We learned at today’s support group meeting that Balfour’s Cherrywood day program will be closed while the building is being remodeled and will not restart until October. My hopes for caregiver relief by the day program have been tabled. Again.

7.28.2022

Gayla and I planned to go to Jason’s for lunch, but she forgot and had lunch at home a little after 10:00. She tries so hard, but she no longer can process new information or participate in coherent conversations. The repetition and non-sequiturs are frustrating and tiring. Tonight, we were going to have steak and corn for dinner, but she boiled water a little after 4:00 and had corn by herself. 

Gayla is no longer in touch with other people’s expectations and goes about her business as she sees fit. I am trying to be the best husband and caregiver I can be, and I hope that I will be able to keep it up. The Cherrywood day program has been my most fervent hope. October can’t get here soon enough. You know the pressure is building when you escape to the bathroom for a couple of minutes of privacy.

8.1.2022

Many people who feel overwhelmed seek out therapists to find comfort and direction, and they are often richly rewarded by the experience. People from my generation are less likely to take this path, and as an introvert and highly private person, I chose to pursue another solution. In this instance, I found many of the answers I was looking for by reading Book of Joy, the recounting of a week-long meeting between the Dalai Lama and Desmond Tutu a few years ago. Their topic was, “How do we find joy in the face of suffering?”  The enlightened answer was presented as eight pillars of joy. This book has become a warm blanket for me, and I recommend it for others who want to privately address confounding issues.

8.17.2022

Brooke and I went to Balfour’s support group today, and, as always, it was a growth experience. I increasingly identify with others in the room whose situations are totally different than ours. Broad generalizations are not always appropriate, but difficulties between Alzheimer’s patients and their caregivers are unavoidable. While there is no foolproof solution, reverting to love is the best option. And, yet, when that feels unrealistic, we should not beat up on ourselves. We’re human, and this is an extraordinary challenge. 

8.26.2022

This is our 55^th anniversary, and I asked Gayla if she had any memories of our wedding or honeymoon. She had none. That part of Gayla is now gone, forever. The loneliness of this situation is impossible for me to convey. Our relationship, our love, has been such an indelible part of me. But I know that I am not alone. This disease has brought these feelings and this sense of loss to untold millions before me. So, I look to any avenue that will allow me to convert my experience into something meaningful that will help give future caregivers some solace. A book for caregivers is becoming more likely. (Accepting Old Age)

8.30.2022

When Gayla got up this morning, after sleeping in her clothes as she usually does, she looked particularly bedraggled. Without thinking, I said that we should get her some new clothes. She objected and said that she liked what she has. Several follow up comments achieved nothing other than to put her in a bad mood. But shortly after that, she changed into another pair of shorts and washed the ones she has been wearing for many days. Until now, I have been totally committed to the “creating moments of joy” philosophy of caregiving. In the future, I believe there will be more instances in which I should promote behavior that will be expected as she becomes involved with Balfour.

9.6.2022

Gayla is energized whenever she meets with her selected friends. Carol, Judy, and Pam have been great about keeping in touch. After Pam walked with Gayla this morning, she said, “Some people think their glass is half empty; others think it is half full. Gayla’s glass is full.” I enjoyed spending time with Pam after their walk. It was great to have an adult conversation!

Year End Thoughts

10.2.2022

Three years after Gayla’s Alzheimer’s diagnosis, the good news is that she is happy – most of the time. Laughing is still her favorite activity. Her values have not changed. She cares about babies, kids, people, and animals. She sympathizes with disadvantaged people and detests the violence and negativity that dominate the news. She greets people on the street with enthusiasm and is comfortable in short casual conversations. She sees herself as a loving, caring person who wants to help other people and make a positive contribution. In her mind, she is the Gayla who has always existed, and there is no reason for her life to change. 

Perspective

This is still Gayla’s public face, but it is not the whole story. Alzheimer’s is an insidious thief that steals the past, the future, and the ability to reason. Word recall and name recognition decline. Early episodes of short-term memory loss become difficulty processing new information. Time loses relevance. Reality and imagined reality become indistinguishable. Personal initiative declines. Long-term memories turn cloudy, then disappear. Conversations become disjointed and trivial. And nothing can be done to prevent it.

This past year has been difficult. Now, Gayla’s perspective can change from moment to moment. Looking at old pictures triggers warm feelings about Pete, Brooke, and Robb, but she cannot connect those younger people with the older versions of us that are now in her life. Thus, there are two Petes, two Brookes, two Robbs, two Moxies, and even two Judys. A week ago, she walked up to me and said, “I don’t know your name.” Other times, she has confused me with her father. She believes she recently moved into our home and does not think that the clothes in her closet are hers. Normal daily routines have been forgotten. She can read, but she cannot remember what she has read. Often, she wants to go home, but she doesn’t know where that is. While she is most often happy, her moods now change more than ever before. At times, when her reality differs from that of the rest of us, she becomes confused and obstinate. She naps frequently but does not sleep well at night. Fatigue tends to bring about “sundowning,” an increase in Alzheimer’s symptoms as the days progress. 

It is remarkable – and a blessing – that Gayla is not aware of most of her limitations. She knows that she has experienced memory loss and has trouble remembering names, but in her mind everything else is normal.

Caregiving

As Gayla’s world shrinks, caregiving demands increase. Someone else must take the lead in shopping, cooking, walking Moxie, planning, and supervising daily activities. Only rarely does she have the initiative to entertain herself. Because cognitive decline has limited her ability to engage in interactive conversations, even casual discussions require someone else to take control.

Gayla’s constant need for attention creates stress and fatigue, but fortunately I have found tremendous support from several sources. Brooke’s decision to move into an apartment in our home and become actively involved with us has been critically important. Caregiving is a lonely business. It is heartbreaking watching someone you love, wither away day by day. Sharing this experience has been hard on Brooke but has lightened the load for me. Thank you, Brookie. You are a blessing, and you add greatly to my happiness by daily sharing the joy in your personal life. 

Brooke and I have both benefitted from our relationship with Laura, an exceptional professional with Balfour Senior Living, who has provided advice about managing our Alzheimer’s journey and who created a valuable support group for caregivers. To this point we have been unsuccessful in involving Gayla in Balfour’s day program, but we expect that to change soon.

Personal interactions are essential for all of us. Fortunately, the increasing isolation over the past few years has been mitigated by my reading and writing. This year, I was most deeply affected by The Book of Joy, the summary of a week-long discussion in 2015 between the Dalai Lama and Desmond Tutu about happiness and fulfillment. I would recommend it to anyone but particularly to caregivers who are challenged by the unknown. It provides powerful insights into how to overcome adversity and make our lives meaningful. 

As difficult as the year has been, there have also been some lighter moments, triggered by the disease: 

• Gayla’s belief that Moxie is really two dogs surfaced one night when she was about to feed Moxie dinner for the second time. I tried to intervene, and she objected, “Maybe you have only one dog, but I have two.”
• When she wanted to listen to music on Spotify, she put the ear plugs in her ears but neglected to plug them into her phone. She was mystified why the music failed to play. Don’t you just hate it when things don’t go your way?
• Perhaps my favorite: Gayla has a habit of rinsing out her water glass three times before putting it in the dishwasher. When I suggested that this was not necessary, she looked at me dismissively and responded, “You do it your way, and I’ll do it mine.”

The Future

“… it has been painful watching the decline, and now I am beginning to think more about what will undoubtedly be lost in the future.”

Gayla has been the brightest light in my universe, and I never want to let this go. Since her diagnosis, my goal has been to help her feel each day is a good day. But it has been painful watching the decline, and now I am beginning to think more about what will undoubtedly be lost in the future. I think about how lonely it will be when I can no longer care for her. Her laughter has always made life better for me and all the people around her. Alzheimer’s is an unwinnable war, and the only way to survive is for love to prevail. And yet, while we face harsh times on the journey, we also gain insights into what life is all about. If we are paying attention, we cannot escape questions about family, love, meaning, purpose, expectations, longevity, and a host of others. Sliding through life is not an option. Most importantly, misconceptions are shattered, and we discover more about who we really are.