Chapter Two

Our World Changes

I could not foresee the future in September 2019, but I knew it was time to start a journal to preserve the past.

9.26.2019

Tremendous anxiety on the eve of Gayla’s neuropsychological exam. Our lives have already changed, with me spending much more time with Gayla and providing support when appropriate. Lots of things have become team efforts (e.g., walking Moxie, going to parks, shopping). I have been doing the driving, but Gayla has been able to make short trips on her own. She knows she can’t do some of the things she has done in the past but does not recognize the extent of her limitations. She fears the loss of independence – the ability to do what she wants to do whenever she feels like it. Losing the right to drive is a major threat, and she knows that tomorrow’s testing might result in unwanted consequences. The next few days are going to be difficult.

10.2.2019

The follow up meeting with Dr. Stabler went well for about a half hour: no surprises in his findings. Then, the bomb. The test results strongly suggest Alzheimer’s. My heart dropped in my chest. Deep sigh. A horrible break! I listened to the rest of his presentation, but I couldn’t concentrate on what he was saying. My mind was bouncing around the room: our past together, the future, the pain, the disappointment…. We’ve always been optimists, always looked for the silver lining. This is what has made Gayla’s and my lives together so wonderful all these years. But Alzheimer’s eliminates the possibility of a happy ending.

I am taking this harder than Gayla is, and this probably is normal. Dr. Stabler indicated that one of the characteristics of Alzheimer’s is that patients do not recognize the changes taking place. But I clearly see the road ahead: personality changes, loss of ability to perform ADLs (Activities of Daily Living) and IADLs (Instrumental Activities of Daily Living), and eventually even loss of recognition of family members. Our journey is going to be much worse than the one we witnessed with Kitti (Gayla’s mom). We need to make the most of the time we have together now – before our road is non-negotiable. If you can’t look to the future with optimism, you must make the present as positive as possible. My job is to help make Gayla’s life as good as it can be.

After dinner, we went to Brooke’s house to let her know. She was shocked. The pain of this reality is paralyzing. I’ll have lunch with Robb on Friday to inform him.

10.5.2019

The pain won’t go away. I cannot stand the thought of Gayla suffering through the last stage of this disease, which is brutally described in the Working with Seniors textbook for the Society of Certified Senior Advisors. “Late-stage Alzheimer’s disease reflects a further decrease in mental function and communication skills. During this stage, people with AD lose the ability to recognize family members, friends, and caregivers. Activities of daily living require full assistance. People in the final stage cease to speak and eat, lose muscle control and swallow reflexes, slip into a coma, and eventually die.” Gayla is so remarkable; this is a fate that in unconscionable. And Brooke, Robb and I are in for a hellish ride as well. How do you remain an optimist – one of my cardinal life goals – when facing the terrible inevitability of this?

10.12.2019

I’ve been thinking about the future, both near and long-term. Near term, my role is simple. I’ve promised Gayla that we will take this journey together. By that, I mean that I will be there for her and be able to help with the things she can no longer do. I recognize that this is an ideal, and in practice there will be exceptions. As Brooke and Robb remind me – and the Alzheimer’s Association literature confirms – I need to take care of myself to survive this journey intact. But my near-term goal is to help make Gayla’s life as happy as possible. Be positive. Find activities that are enjoyable. Overcome the boredom.

Longer-term, there are basic decisions that must be addressed. Gayla and I have long said that we want to live in our house as long as we can, but Gayla’s condition will change, and in time she will need additional assistance. One option will be to move to Balfour Senior Living or a similar facility. This is an expensive option and a rejection of our long-held goal of living in our own home. An alternative is to convert our basement into an apartment and rent it to someone who could provide caregiving services. But there is no assurance that we would be happy with the tenant, and we don’t need the additional stress. We could offer the apartment to Brooke, which would be ideal in many ways. But I don’t want her to feel obligated, and I do want her to have the freedom to live her life as she sees fit. I guess I can suggest it to her for consideration. Yesterday, Brooke mentioned that her landlord may eventually want to move into the house she is renting. This could be a solution for her as well. I will start the discussion when we have lunch on Thursday.

10.17.2019

Last night Gayla was very quiet, and it was clear something was bothering her deeply. Carol had contacted her to schedule a breakfast this weekend. She asked me if I was okay with her driving to Boulder, I said yes, but she would have to tell Carol that this would be the last time (her birthday is next Wednesday, and she will not be getting her driver’s license renewed). This hit hard because she recognizes that her life is changing in irreversible ways that she hates. The pain is not only losing the right to drive. It is accepting the reality of the illness and having to tell other people about it. All her life Gayla has been an optimist and has been exceptionally successful at virtually everything she has done. Obstacles have routinely been overcome. But this one cannot be defeated, and she is devastated. This breaks her heart, and I can’t stand it!

10.18.2019

Reflecting back on the past few years, I feel like I have been living a life of denial. For a long time, there have been indications that Gayla was headed toward dementia. Over five years ago, we recognized that she sometimes seemed confused, repetitively asked the same questions, and had difficulty recalling words and names. In 2014, I wrote a letter to her saying that her kids and I had observed a decline in her memory, and we felt she had a choice between living her life to the fullest without confronting the issue or, alternatively, getting baseline testing done and taking whatever action was available to delay the decline. In either case, we would love her with all our hearts. With my total concurrence, she chose to live her life as fully as possible while she was able to do so.

After all this time, we are both glad that she took this path. We have had a wonderful time together and are still doing so. My life has changed, but I have no regrets. She is such an incredible mate, and I have been blessed beyond measure. I plan to be there for her through the coming challenges. But the imminence of it has become more apparent and challenging each week, as the disease creeps forward. Conversations are less coherent and more repetitive. The love is there, but obstacles are mounting. It is a crushing feeling, not of hopelessness but of wishfulness. The past has been a blessing, and I know I have no reason to be jealous of anyone else. We have been fortunate and lived well, but this is so hard.

11.6.2019

Gayla came into my office, upset about the whole procedure associated with her medical evaluation. She stated that she has always done things right, has had no traffic tickets or accidents, hasn’t gotten lost, and doesn’t feel any different, other than she can’t remember some things. Why does she have to go through this? I responded that no one is worried that something that will happen this afternoon or tomorrow, but the disease is progressive. Her condition will worsen. It is important to accept this and not end up in a position that can hurt her or anybody else. I want to help her avoid situations in which she would be uncomfortable. This means that I should be with her to help whenever I am needed. Gayla is frustrated. She feels that other people are taking control of her life. Anger flared, followed by an apology and the comment: “It is what it is.” Sadness replaced the anger. I am devastated. I hate seeing the person I love so much suffer the indignities of this disease. Our mantra must be: “Make each day as good as it can be.”  But how?

11.11.2019

We had an open discussion about the disease, what it is doing to our lives, and the degradation that is to be expected in the future. We cried together, and I reiterated that she could count on me to take the journey with her and be available for support. I mentioned that I had contacted the Alzheimer’s Association and met the regional manager, who was a good guy who had invited us in for a visit and discussion about how they could help us. He said that their support groups (for patients and caregivers) were particularly helpful because we would benefit by relating to other people sharing the same experience. Finally, I asked Gayla to join me at the Alzheimer’s meeting in Boulder.

12.3.2019

Today, we met with Ralph Patrick at the Alzheimer’s Association office. He did a terrific job of orienting us, and Gayla was open and honest with him. Ralph strongly suggested that we participate in a ten-week couple’s program that will be offered after the holidays. Reluctantly, Gayla agreed to attend the program with me.

1.15.2020

The decision has been made. Rick Diemert will construct an apartment on the lower level of our home, and Brooke will move in this summer. Gayla and I are delighted that Brooke will bring her much-needed positive energy and family love. It is a special blessing for me, as I think about the increasing demands of the future.

2.14.2020

This was our third Alzheimer’s couple’s session, and it made a greater impression on me than the first two. As people discussed their experiences and concerns, I felt connected. They are experiencing what I am experiencing. My sense is that their spouses are further along the path than Gayla is, and the frustrations they feel are more pronounced. I am inspired by their love, strength, openness, and concern for their loved ones. But it is also overwhelming. They lament their sagging patience and mounting frustrations. Yet, they are adapting to the realities of their situations. This program is good for me. I am not alone.

2.21.2020

Gayla and I were scheduled to attend our fourth of ten weekly Alzheimer’s support group sessions today. She has not felt comfortable in any of the earlier sessions, and when she got up this morning, she told me she did not feel well, which I interpreted as her signal that she did not want to go. When it was time to leave, she said that she didn’t want to go to any of them from now on, that she hadn’t benefitted from the ones she had gone to, and that they were a total waste of her time. The truth is that Gayla remains in denial. She does not relate to other people who have the disease and does not believe that she will succumb to it. This is not going to be an easy road. (Dealing with Denial)

2.25.2020

“Whenever she is forced to acknowledge that she has been diagnosed, she invariably turns within. She becomes quiet and secretive about her feelings.”

 

In thinking about the events over the past several months, I came to an important conclusion. Gayla has had more periods of sadness and boredom than has been her norm but generally has remained positive. In the face of this horrible condition, this is encouraging. But the thing that stands out dramatically is that her denial of Alzheimer’s makes this positive attitude possible. Whenever she is forced to acknowledge that she has been diagnosed, she invariably turns within. She becomes quiet and secretive about her feelings. Her worst days have been those in which she went to Alzheimer’s meetings. This is contrary to the advice that we have been given that the people who are most successful negotiating the Alzheimer’s journey are those that accept reality and work to make the best of it. We need to have a better understanding of how to handle this situation. Maybe this dynamic will change as Gayla becomes more aware of her limitations.

3.6.2020

An observation. With a little research on the Internet, I found that the best estimate of the total number of human beings who have lived on earth is 100 billion. When we are lamenting the personal difficulties that we are facing, one way to gain perspective is to ask ourselves how many of those 100 billion people Gayla and I would have been willing to switch places with. Few, if any! Our lives have been good. When we wouldn’t switch places with any of 100 billion people, we shouldn’t feel very sorry for ourselves.

3.8.2020

For the most part, Gayla has been in a more positive space recently. Today, she hit the wall. We had a great morning together and a nice walk at Sawhill Ponds after lunch. Then she took a nap and woke up feeling horrible about what is going on in her life. “I’m bored. This whole process is just hard. I feel like I’ve lost my house…my life.” I understand her frustration, and I wish I could change things. This is painful. It is not her fault, and it is not mine, but like it or not it is reality.

I want to be more creative, but there are times when resignation may be the only option available. Bask in the good moments. Bask in memories. Bask in the pride we have in our kids. Bask in the joy and exuberance that we see in our grandkids. And bask in the wholeness that comes from reflecting on our life-long journey. Sweep today’s sorrows away and know that we have been blessed. Great sentiments, but so hard to do when the one you love most is hurting.

3.9.2020

The country is now under siege from a new strain of coronavirus that has become a worldwide phenomenon with rapid transmission and death rates well above those typically found in annual flu epidemics. It spread from China, and all of Italy is now under quarantine. The risk of a pandemic is high.

3.12.2020

The World Health Organization declared coronavirus a pandemic. In our country, governors have declared statewide emergencies. Colleges, universities, and public schools are closing. Amateur and professional sports leagues and events have shut down. Theaters, concerts, and other crowd-drawing events have been cancelled. Businesses are laying off employees. Congress and the president are scrambling to come up with funding to respond to the mushrooming cases of the illness. Our Alzheimer’s support group meetings are among the casualties.

4.23.2020

For days, Gayla has had difficulty understanding the timing of her May 21st appointment for labs in preparation prior to her annual physical with Dr. Mondrow (our PCP). Almost every day, she has said, “I have my labs tomorrow at Dr. Mondrow’s office,” and I have reminded her that the appointment is still a month away. Today, I heard her call their office and ask if the labs were on May 21st, and they confirmed the appointment. Tonight, she repeated that she had her labs tomorrow, and again (for perhaps the tenth time) I agreed that the labs were on May 21st but that we still are in April. She got huffy and insisted that her labs were tomorrow on May 21st.  “I know what they told me!” We no longer can resolve differences with facts and logic.

4.28.2020

I have constantly thought about the challenges Gayla faces, but I also recognize that there are changes happening within me. Based on what I learned from taking the course work to become a Certified Senior Advisor fifteen years ago, I do not believe they are beyond normal aging issues. But I know that my physical abilities and memory are not as good as they were, that the constant stress that comes with caregiving is mounting, that my moods are more likely to shift than they were before, and that I have less control over the cascading events around me. All of this coalesces into the realization that I am human – and getting older. This may be normal, but that doesn’t make it any easier. (Normal Aging versus Alzheimer’s Disease)

What is most reassuring is stepping back and looking at the big picture. The most important thing is that Brooke, Robb, Marin, and Holden (our grandkids) have opportunities to live meaningful lives that bring them happiness and fulfillment. My advice to all the people that I love: Dream and aspire. Care and give. These are among the greatest joys that life has to offer.

5.29.2020

Our appointment with Dr. Mondrow for Gayla’s annual physical was professional and uneventful. He had read the neuropsychological test results and has full knowledge of the diagnosis. He reviewed and evaluated Gayla’s medications to make sure they were appropriate. Understandably, he wanted to get Gayla’s read on how she feels, what her expectations are, and what concerns she may have. He started by saying, “We have talked about memory issues in the past, and I want to know how you feel about how things are going for you?” Gayla enthusiastically responded that she feels great, she wakes up every morning with a positive attitude, she is fortunate to have a lot of close friends who she enjoys being with, and the only complaint she has is that her back has been hurting, and she hasn’t been able to run, play tennis and golf like she has in the past. She wants to get the back issue solved so that she can go back to being who she always has been.

There is no way she was going to be roped into talking about dementia. That, simply, is not part of her reality. Although he must have been surprised, Dr. Mondrow didn’t miss a beat. He said that was great, and he was delighted that this is how she feels. But he also wanted to talk about long term planning because this is appropriate as we get older. When he asked her questions about what concerns she might have about the future, what she felt her strengths might be as she got older, if there were any threats that bothered her, etc., she would not let any light shine because those are not thoughts that have ever entered her mind.

I believe that Gayla’s and my proclivity toward optimism has been at the core of the great relationship we have maintained over the years. And I admire the approach Gayla is taking toward the future. Optimism can shelter us from unnecessary frustration, anguish, and pain. But ultimately, it cannot shelter us from reality. At some point, the fall will be devastating. This needs to be digested and addressed.

6.11.2020

The coin flipped, and today was not so good. We had worked out a plan for Gayla and Dee to get together tomorrow, but Gayla again got confused and thought her haircut on June 16th would conflict with her meeting with Dee on June 12th. She called Dee and postponed their meeting for a week. She has lost the ability to conceptualize temporal planning. Thus, she has difficulty discussing future events in relation to past events. I’ve tried to explain, but there is no acceptance. It seems that when she sees a written notation about a past, present or future event, her expectation is that the event is about to happen.

6.24.2020

What a wonderful day for Gayla! Pam came at 10:00 a.m. for a planned dog walk with Gayla and Moxie. She took Gayla across the street to Heritage Park where eight of her tennis friends were waiting for a surprise visit. Gayla was on a cloud, and I wrote Pam to let her know that Gayla was singing in the kitchen when she made her lunch. It is so fun to see her that happy. This always makes my day.

7.15.2020

Gayla is the best thing that ever happened to me, but she is now accompanied by a new and vile burden she never asked for and had no opportunity to reject. Alzheimer’s silently takes away her qualities, her strengths, her memories – the essence of who she has always been. God, I hate it. But we march on and try to make the best of things. At times, it is particularly difficult. She has lost memories but is adamant that she has not. And she is deeply offended if she thinks anyone is questioning her memory.

Other times, the situations can be funny. In preparing for the carpet layers for Brooke’s apartment, we had to clean out our rooms, which involved sorting the things she wants to keep from the things that can be thrown out. Easy enough in concept, but when the sorter forgets every few minutes which pile is which it becomes a bit futile. I need to maintain patience, a positive attitude, and a huge reservoir of love. She has been so great for so long that this is not a major problem yet. But I am nervous about the future.

8.11.2020

Brooke moved home today, which all of us view as a blessing. There will be ups and downs, but the family ties are indelible. She is so loving and caring for Gayla and is such an incredible source of love and support for me. I am eternally thankful. As planned, we had steak and corn for dinner, but when it was time to butter the corn, we could not find the butter. Fridge. Freezer. Counter. Closet. Different cabinets. No. Finally, next to the bread in the last cabinet we checked. Of course, butter belongs with bread.

8.27.2020

“… many of our memories are no longer shared because she cannot recall them…. It is sad to reminisce alone.”

One particularly difficult thing for me is that many of our memories are no longer shared because she cannot recall them. This is apparent, because when she is not connected, she goes silent. It is sad to reminisce alone. There are also times during which she sits comfortably, just staring into space. This, too, is sad. But she usually looks at peace.

9.19.2020

Several days ago, Gayla was standing in her bedroom staring straight ahead when I went in to wake her up in the morning. I asked her if she was okay, and she replied, “I forget what we do in the morning.” I reminded her that the first thing she did in the morning was greet and feed Moxie. When she got up today, she had totally forgotten about Moxie and went about her own business. I’ll just start feeding Moxie in the mornings.

9.29.2020

Yesterday, Brooke said that Gayla had mentioned some men who were upstairs. Today, Gayla told me that Brooke got up this morning to run in the mountains with her friends who live with her downstairs. I am finding that she frequently makes references to imaginary images or stories. This is one of the lapses that the Alzheimer’s literature suggests is an indication of the decline that occurs in Alzheimer’s middle stage: having difficulty distinguishing between the real and the unreal. This, in combination with the increasing need for help in doing simple tasks drives home the realization that we are now in a different place. Oh, how I miss my “whole” Gayla. And, yet, at bedtime she still felt it was a good day. One step at a time. I know that at some point we will look back at these as the good ole days.

Year End Thoughts

10.2.2020

Today is the first anniversary of Gayla’s Alzheimer’s diagnosis. It has been a challenging and life-changing year, and I expect that the future will be more difficult. But this is an appropriate time to recall what has happened and consider how we should approach the future.

Adjusting to the reality of this illness is difficult. During the early stage, the symptoms have multiplied and increased in intensity. Initially, difficulty recalling names and repetitive questioning were most noticeable. But other characteristics have appeared, including temporal and spatial confusion; difficulty concentrating, reasoning, and making decisions; reduced word recall; disjointed conversation patterns; multiple daily naps and long nights of interrupted sleep; and fading longer term memories. Activities she had always loved were either eliminated or drastically reduced, including tennis, golf, running, reading, and initiating activities with her friends.

Losing the right to drive was the most difficult adjustment Gayla faced during the early stage of Alzheimer’s. She has been unaware that the changes taking place in her brain are as significant as they are. To her, the loss of independence seemed unfair and unwarranted. But Brooke, Robb and I agreed that this step was necessary for her safety and the safety of others. As unhappy as this move made her, she reluctantly accepted it (while continuing to feel mistreated). (Dealing with Denial)

After a lot of planning and work, in August this year Brooke moved into her new apartment. She, Gayla, and I have all been very happy with the change, and it could not have been more timely. Over the summer, symptoms of Gayla’s illness markedly progressed. One time she asked me if I have any brothers or sisters. She asked Brooke if she knew Robb. She called me to the kitchen to help with a problem: she had turned the disposal on and forgotten how to turn it off. On one occasion, she could not recall Brooke’s name and referred to her as “the person who lives downstairs.” She also admitted that she thinks that there are two Brookes. She talks frequently about how much she loves and respects Brooke and Robb for how they are living their lives, but she is does not believe they are the same people that she gave birth to. These examples reflect a substantial decline that leads us to believe that Gayla has now entered the middle stage of the Alzheimer’s decline.

Watching Gayla’s daily decline has taken an emotional toll on us. One of the joys of loving someone is being able to share common memories. It hurts when those conversations turn into monologues that fall on deaf ears. Even worse, Brooke is devastated to find that the mother she has idolized and loved all her life no longer can see her as her daughter.  

But we move on looking for positives. Currently, Gayla lives with love in her heart, is positive most of the time, and continues to exhibit excellent social skills. She has always been socially outgoing. She loves greeting people on our walks and invariably stops to talk with children. Her lifelong love for kids and animals is as strong as ever. People do not suspect that she has dementia until they have had an extended conversation with her.

The truth is that she is almost always in a state of confusion. New information is often not comprehended or processed, and old knowledge and memories have faded. Now, reality and imagined reality overlap. She lives entirely in the moment. Sequential thinking is nearly gone. Operating her phone and computer are confusing. Because she is no longer involved in many of the activities that previously were central to her life, she becomes bored. This results in wandering and frequently coming to my home office because she doesn’t know what else to do.

People who suffer with Alzheimer’s live in a scary world in which the past is disappearing, and the future is depressing, but Gayla’s innate optimism is an advantage that most others with Alzheimer’s do not share. As horrible as this disease is, we are blessed with this reality (at least for the present). I am also blessed with Brooke’s support and love. I believe that we will manage this journey as well as it can be managed.

While Gayla’s mind no longer works like it has in the past, it is remarkable how much of the Gayla we love lives on. She has caring, loving instincts. The goodness that has made Gayla Gayla is alive and well.

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