Searching For Answers
The Alzheimer’s journey is uneven and challenging but seemed particularly difficult in mid-October 2020 when I was experiencing problems sleeping, the Covid-19 epidemic was raging, and political dysfunction poisoned the national presidential race. But attitude is a choice, and I strive to be optimistic.
10.15.2020
Ralph Patrick of the Alzheimer’s Association asked for comments about the “silver lining” of Alzheimer’s Disease for publication in his Thanksgiving newsletter. My response:
As challenging as Alzheimer’s is,
it sharpens our senses,
makes sunrises and sunsets more vivid,
and small problems less challenging.
It makes small joys more precious, and takes love to new heights.
Alzheimer’s reminds us of how fortunate we have been
through most of our lives.
10.27.2020
When Gayla and I moved back to Colorado from New York in 1969, we purchased a 19th Century school clock from an antique store on Colfax Avenue in Denver, and it has become one of the family keepsakes that we treasure most. Today, Gayla was gazing at the clock with a smile on her face and said, “That clock was made by a clockmaker who lived a couple of houses away from us when I was growing up. He loved his clocks.” Her realities are not reliable anymore, but she feels good reminiscing about the childhood she now remembers. How valuable a positive outlook is!
11.6.2020
Gayla is disturbed by how her life has changed, and she asked me several times to promise that I won’t put her in a mental institution. I light-heartedly respond that we will be going together. For years we have laughed that we will go together, have adjoining rooms and be able to meet someone new every day. (This is not as funny as it used to be.)
Decades ago, when we had a more sober conversation about old-age illnesses, we agreed that if it ever got to the point that one of us lost contact with reality and the ability to communicate effectively with other people, we did not want the illness to destroy two lives instead of one. It was a well-reasoned discussion, but it did not consider the intense emotional attachment that dominates when the possibility of that situation becomes likely. The more I learn about Alzheimer’s, the more I dread the late stage of this disease. But I try not to think about it when there is still so much love we can share.
11.17.2020
“The disease is winning, and Gayla is no longer able to carry on stimulating conversations that light up every room. But my love for my best friend will not fade.”
I have made the point that Gayla’s periods of confusion ebb and flow, but the lows are now more prevalent. The disease is winning, and Gayla is no longer able to carry on stimulating conversations that light up every room. But my love for my best friend will not fade. She has made my life wonderful! I can’t imagine ever dishonoring that.
11.22.2020
For the past 26 years, we have had an established pattern of Gayla sitting in “her” chair and me sitting on the couch when we watch TV. During the last few days, she has come over to sit close to me on the couch. I think this is another indication that she is more secure and comfortable when I and/or Brooke are near to her. But today, a weird twist. She was sitting in her chair, and she looked across the room at me and asked, “Do you live around here?” Should I laugh or cry?
11.28.2020
Gayla confused Brooke with Kassie (Brooke’s cousin) and then talked about the “other” Brooke. As dinner time approached, she decided she didn’t want left-over turkey and ate a blueberry muffin instead. By 6:15, she was through and abruptly went to bed. By 6:30 she was up and “back to normal.” She stayed up until a little after 8:00. This is an example of “sundowning.” She had “had it.” She was tired and needed to go to a safe and quiet place for a while. It’s frustrating never knowing what’s next, but if I will take time to recognize what is going on, I will be able to handle it better than I did. This is an illness that requires us to be “on call” every moment. I wonder when it will be too much. (Caring for Your Loved One)
11.30.2020
In recent months, Gayla has been living in a world in which reality and imagination are intermingled. She has referred to two Brookes living downstairs, to other people living upstairs, and to the belief that “when I came here there were dogs upstairs.” She mentions other people who lived here when, in fact, we were the people who built this house and are the first and only residents to have lived here. In some conversations with Brooke and me, she has talked about “Brooke” and “Pete” as though we were not even in the same room with her. When she did this with me this morning, I stopped her and said, “I’m Pete. Why do you talk about Pete as though I am not even here?” She said that she was talking about the other Pete. I tried to get her to explain the difference between the two Petes, but she was unable to explain it in a comprehensible way. Later, when thinking about our conversation, I came up with a construct that allows me to come closer to understanding (or, at least, dealing with) what is going on.
There are not two Brookes or two Petes. There are two Gaylas. The Gayla we know and love is the Gayla we always have known and loved, grounded in reality. She has lost many memories, but when she is reminded, she can often recall and appreciate her past and the events that occurred. Reviewing old pictures is a great path into a conversation with this Gayla. As time progresses, this will become increasingly difficult.
The second Gayla is the Gayla that has been shaped by Alzheimer’s. The deterioration in her brain has changed her perceptions of her world, with altered realities and imagined memories. This Gayla is becoming predominant and is squeezing the real Gayla out of the picture. Thus, in her view there are two Brookes and two Petes, generated by different states of mind. At different moments, each is real to her.
12.3.2020
Today, I sent the above journal entry to Laura (a professional at Balfour Senior Living) and told her that Gayla was depressed and had said “I don’t know who I am or where I am going. I just want to get back to my normal self.” I asked for her advice, and here is her response:
“I wanted to tell you that your analysis is close to the way I explain it. Yes, she feels there are two Brookes and two Petes. The reason is that her mind is now divided in two. With any type of dementia, patients start losing their short-term memory. They focus on the long term. For that reason, the Pete that she is talking to you about is the young man she married. The one from the past. Alzheimer’s is not allowing her to connect both.
“The most important thing you should do is not correct her. Go with the flow. You can even start a conversation such us, “Where did you go on vacation with Pete?” Just bring her to the past, even if you have to talk in third person. Encourage her. Tell her the doctors are working on helping her and that she has you and Brooke to support her. If you see her start to get upset during the conversation, try to divert her attention. Talk about something positive. I would not stay on the topic of her confusion or frustration for too long. It won’t help. Of course, she needs to be validated and feel supported, but talking about it too much will just make it worse.”
1.3.2021
A sad but humorous story captures how Alzheimer’s is affecting Gayla’s cognition. She often presents ideas in support of her opinion about something, only to follow that up with a conclusion that is totally inconsistent with the argument she just presented. (It is impossible to employ deductive reasoning when you have lost the ability to remember your viewpoint from one sentence to the next.) Something similar happened today when she was washing clothes. She removed the clothes from the dryer, but one pair of Levi’s was still a bit wet. The logical response would be to run the drier a little longer to finishing the drying. Her solution, however, was to put the Levi’s back into the washing machine and give it another chance. You can laugh or cry. I choose laughter.
1.22.2021
One of the greatest difficulties for me in my caregiver role is the loss of privacy. Gayla can no longer do the things that previously were central parts of her life, like running, tennis, golf, driving, initiating contacts with friends, etc. She can only read in short doses. Without these activities, she lacks direction and motivation. She admits that she is bored and has nothing to do, and as a result she wanders around the house or our community. During these winter months, the ultimate destination often is my home office. No matter what I am trying to accomplish, this results in constant interruptions. This is particularly frustrating for me when I am trying to write or work on matters that need to be privately handled. As a result, my productivity is poor and satisfaction from my work is missing.
2.4.2021
Gayla wanted to ask me a question. She opened her phone up and pointed at the three picture icons of Brooke, Robb, and me. She said, “I know these are pictures of Brooke and Robb, but is this other one of my dad?” I replied that it was me, and it had my name under it, Pete. She said that she knew I was Pete, but this looked like her dad. I mentioned that her dad’s name was Bill. She replied that she knew his name was Bill, but when he was young, he was called Pete.
2.5.2021
I have found that in the middle stage of Alzheimer’s successful caregiving requires changing our approach. Over the course of our lives, we learned that happiness and fulfillment come with honesty and integrity, but these qualities cease to be strengths when Alzheimer’s has advanced. Reality (including rational thinking) is no longer a reliable solution and is often an obstacle. We need to shift gears and live in their world, which means that my communication with Gayla requires accepting her feelings and beliefs and letting her thrive with them.
2.17.2021
Today, I got my first vaccination against Covid-19 (ten days after Gayla received hers), a long-awaited happy breakthrough. Gayla knew it was a good thing, although she can’t remember how many shots she has had, how many I have had, how many are necessary, and even why we had to get them. This all culminated at dinner when she asked if, because today was such a good day, would we be rewarded with more shots after dinner. She still makes me laugh.
3.4.2021
Several weeks ago, Laura introduced Brooke and me to Creating Moments of Joy, a brilliant book of advice for Alzheimer’s caregivers. It did not take long for the concept behind the book to sink in. The minds of Alzheimer’s patients are chaotic. Each moment is divorced from those that precede or follow it. Thus, Gayla can ask me whether I have any brothers or sisters, and shortly thereafter can talk comfortably about our past gatherings with Marie, Mike, and Andy.
I think that understanding this phenomenon is a key to learning how to live with a person who has Alzheimer’s. It explains why timeouts are a solution to resolving differences. Differences can be overcome by changing the subject or buying time. “Let’s come back to that in a minute” is a way to open the door to happier interactions. (Communication Tips)
3.25.2021
This afternoon, Brooke and I sat in the living room and listened as Gayla summed up her understanding of where she is in life, how she is living, and what her expectations are for the future. The inability to understand the past, present and future was painful. I am sorry that Brooke must see this play out day after day and glad that Robb, who has so much else on his plate, is shielded from the constant anguish. As much as he loves his mom, he doesn’t need this unrelenting stress. Thank you, Brookie, for being both my companion and tonic. I don’t know what I would do without you.
4.8.2021
Our appointment today with Dr. Mondrow to review Gayla’s cognitive functioning was a study in professionalism. He was able to meet Gayla’s needs, my needs, and leave us both bowled over by his skills. Dr. Mondrow and Gayla were together for a long time in the examination room, during which he administered the same competency test (Mini-Mental State Exam) he had used twice before. Gayla had decided she would be upbeat and open with him and greeted him with positive enthusiasm, starting out by saying “I have dementia.” They were candid with one another and laughed together. Then, I was called in. Mondrow explained that: (1) her performance on the test was lower than before, which was to be expected because dementia is a progressive illness, (2) confusion should be expected to become more frequent (to which Gayla, because of the openness that had been created, said that she already was confused almost all the time), (3) Gayla was very fortunate to have a positive attitude and that dementia does not mean the end of life or laughter (He noted the difference with previous clients who had different temperaments and said her approach would benefit her in the future.), (4) in the future she should be willing to accept help from other people because she will need that help (her friends were fine, but she would need to rely on others as well), and (5) he wanted to have a follow up meeting (her annual physical on June 1 was the perfect timing).
4.15.2021
Today was one of those wonderful days that we dream about. Gayla and I drove to the Denver Museum of Science and Nature. We found peace in the exhibits, but the best part was watching Gayla love the kids and young families in the playroom. There was joy in her being, seeing the excitement and happiness in young people – both children and parents. Nothing could have made me happier than seeing my dear wife, who has endured so much, smiling with her whole body.
A thought occurred to me for the first time since first learning about Creating Moments of Joy. Previously, I understood that phrase to mean that life for the Alzheimer’s patient has been reduced to isolated moments that each have a life of their own. Today taught me that when we love someone with this disease, the joy that emanates during those moments of joy become moments of joy for all who care. I loved seeing Gayla happy more than anything else that happened all day long.
4.21.2021
Recently, I’ve been coordinating the meds that Gayla and I take. At 1:15 last night, she came into my bedroom totally disoriented, cold, and quivering. She had been wandering inside our house and was concerned that nobody was around. I had her crawl into bed with me and hugged her until she relaxed, and she told me she had taken her pills for tomorrow. I took her back to her bed and tucked her in. When I got up this morning and went to the kitchen, I found that she had taken all her pills for Wednesday, Thursday, Friday and Saturday. I called Dr. Mondrow for advice about what to do. He said everything would probably be alright but suggested we go to Avista Hospital so that the emergency department staff could monitor her, because it was uncertain how she would react to taking four days of high blood pressure medicine at one time. At the hospital, she had an EKG and blood workup results were analyzed by poison control. Then, she was released. Dr. Mondrow later confirmed that there were no further concerns about this incident, but from now on I will keep all medications in my possession.
6.5.2021
I have repeatedly been warned to take care of my health because Alzheimer’s caregivers are vulnerable to our own health problems. Frankly, I haven’t done a good job of addressing this. Since Gayla’s diagnosis, my exercising has been greatly reduced, I haven’t socialized with my friends, and writing – my favorite retirement activity and greatest source of mental stimulation – has been limited to posting in this journal. This spring, I was diagnosed with sleep apnea and atrial flutter. While it is unlikely that caregiving was the cause of either of these conditions, it certainly has not been helpful. I know it is important for me to focus more on this, and I need to make changes in our daily routine so I can do it. (Caring for Yourself)
6.22.2021
We want to encourage Gayla to “volunteer” at Balfour’s day program, which would introduce her to the staff and facility and be a break from the boredom she experiences at home. It would also provide me with the personal time I need. During her annual physical, Dr. Mondrow asked her if she had ever considered volunteering as a way of becoming more socially engaged. Gayla became defensive, saying that she has always loved being with people and feels that she is very social. She likes her lifestyle as it is. This may take a little time to implement, but we do need to make changes. This is a marathon not a sprint.
7.9.2021
“So many of Gayla’s and my conversations now seem non-sensical, but when I am truly tuned in, that doesn’t matter. It is all about being together, sharing moments, and realizing that we have been and always will be intertwined.”
So many of Gayla’s and my conversations now seem non-sensical, but when I am truly tuned in, that doesn’t matter. It is all about being together, sharing moments, and realizing that we have been and always will be intertwined. I know that the future will challenge this. But it is a comfort knowing that in the past and now, we are one together. Joy and sadness are joined in warmth. These intimate thoughts come more naturally now that I realize we are moving closer to changing our daily routine to provide more social engagement for Gayla and periodic relief for me.
7.27.2021
In a discussion about whether our right or left eyes works better, we decided to take a little test. I closed one eye and looked at the view. Then I closed the other and made the judgment that they were both about the same. Gayla kept both eyes open. She looked to the left and then to the right. She concluded they were both about the same.
8.9.2021
This morning, Gayla asked if I had given Moxie her breakfast. Immediately after I said “yes,” she proceeded to fill Moxie’s breakfast bowl. At the dog park, she picked up a warn-out tennis ball and headed toward the “poop’ dumpster that was clearly marked “dog waste only, not for trash.” I cautioned her not to put the tennis ball in that dumpster, and five seconds later she did just that. We are at the point in which simple declarative statements may not be received or comprehended. Ouch!
8.14.2021
Clouded thinking was evident again tonight. To start a discussion about past experiences, I asked Gayla to pick any year during our lifetimes. She picked 1912. I asked her to pick another year, one that was between 1943 and 2021. She picked 1910. I observed that this was well before we were born and asked her to take another shot at it. She responded, 1912. Then I decided to pick the year myself. She was not the least bit offended or concerned, but she did say that she could do a better job if she had a calendar in front of her.
8.18.2021
I had hoped that after my appointment with Dr. Mondrow yesterday, a follow-up discussion with Gayla would lead to her accepting the volunteer opportunity at Cherrywood day program. It did not. She simply does not understand the severe impact Alzheimer’s has had on her, and she is unwilling to give Cherrywood an honest try. We still have more work to do.
8.24.2021
A thought about caregiving: Your time is divided between savoring the moments that you have with the person you have known and loved and caregiving the person who is emerging. As time progresses the ratio of the two changes, and this becomes increasingly challenging. So far, love is winning, but human limitations are undeniable.
9.17.2021
Since our efforts to get Gayla to volunteer at Balfour have failed, I have to do something else. Today, Gayla and I talked about restructuring our days so that I get 12 hours of “Pete Time” each week to restart my personal life and serve as a break from caregiving. I plan to have four hours (9:00 to 1:00) to myself on Tuesdays, Thursdays, and Fridays. I will exercise, reconnect with old friends, and get back into writing. When writing, I will post a “Pete Time” sign on my office door to remind Gayla not to enter.
9.20.2021
This afternoon brought another example of jumbled thinking. I asked Gayla if she wanted to accompany me when I drove to Sister Carmen to donate some clothing. When she agreed, we got in the car and started out on our errand. A few moments later, she asked where we were going, and I reminded her we were going to Sister Carmen. Two minutes later, she asked, “Were the lines long at Sister Carmen?” I told her we had not gotten there yet. She answered, “I got confused.”
9.25.2021
Today marks the end of the first week in which I had four hours of “Pete Time” on Tuesday, Thursday, and Friday. The sense of freedom from the on-going pressure was palpable. It is refreshing and restoring. But on top of that, when I returned to my caregiving responsibilities, I felt more motivated to being the loving caregiver that I want to be. I was told over and over how important it was for me to have breaks from the constant strain of being responsible for Gayla’s well-being. This has already proven to be spot on.
Year End Thoughts
10.2.2021
A year ago today, I wrote a journal entry summarizing the major events that had occurred during the first year following Gayla’s Alzheimer’s diagnosis. This year, before updating the damage the illness has caused, I want to recall the remarkable person who is now enduring the ravages of this disease.
Throughout her life, Gayla has always achieved at the highest level. In elementary school, she was so athletic her gym teacher suggested that she let some other girls win some of the time (which triggered her father’s ire). In junior high, she was fourth in Colorado’s state spelling competition and was selected for the role as Baby Doe’s daughter at the world premiere of The Ballad of Baby Doe Tabor at the Central City Opera House. In high school, she was a cheerleader who graduated in the top 4 percent of her class. In college, she was president of one of the largest sororities on campus. After getting three college degrees, she was highly regarded by students, parents, and peers as a teacher, counselor, dean of students and principal. In road racing, she repeatedly placed first, second, or third in her age group at the annual Bolder Boulder 10K, and in tennis she was ranked first in her age group in Colorado. As a wife, mom, friend, and co-worker she has been unmatched. Competent, lovely, loving, and caring, she’s simply the best.
It is depressing to realize that a person with such exceptional competencies can be forced to fight an unwinnable war against an enemy that erases memories of the past, destroys cognitive abilities, and steals dignity. But that is what is happening. Alzheimer’s is nondiscriminatory, and we are all at risk.
The truth is that Gayla can no longer function on her own. She is not able to drive and now forgets that she ever did drive. She cannot use her computer and has difficulty using her phone. She has poor name and word recall. She naps a lot during the day and wakes up frequently at night. She confuses dates and times, including thinking it is time for a morning coffee date in the middle of the night. At times, she believes that the clock jumps around during the day, and she doesn’t know what is real. She cannot reliably make decisions. She got confused when she saw her pill organizer and took four days of pills at the same time. She cannot remember how old she is and believes that she and daughter Brooke were on the same swim team at the Meadows Club. She has confused me with her father and now believes that she lives with two Petes and two Brookes. Logic and facts are no longer relevant. She has lost the ability to use deductive reasoning and think sequentially. She is often disconnected from reality and her reality is constantly changing, resulting in persistent confusion. She admits to having dementia but has no understanding of how severely her cognitive skills have been impaired or what the future holds. She does not feel she needs help because she cannot see the reality of her situation.
As devastating as this is, Gayla continues to lead a relatively happy life. She thrives on the comfort of connection and routine: knowing that I am here, interacting daily with Brookie, knowing that she is safe. Our dog, Moixe, is a reassuring and stabilizing force in her life. She loves her friends, babies, children, and animals (especially dogs). She has compassion for disadvantaged people and contempt for people who lack compassion. She greets others on the street enthusiastically and is socially skilled in brief encounters, but she can no longer maintain flowing, extended conversations. Gayla openly tells stories based on her faulty memory but has a delightful manner that captivates the people she talks to. She loves her frequent meetings with Carol and Judy and less frequent conversations with other friends. She remains a lovely and endearing mate.
Our current situation causes us to reflect on how fortunate Gayla and I have been throughout our lives. So many people have struggled so much more than we, and we are exceedingly grateful for our good fortune. You can look at our current adversity and think that it is horrible, or you can look at it as a challenge to be accepted near the end of lives of plenty. We choose this latter course. As we learned from Atul Gwande’s work, in the end it is quality of life that matters, not longevity.
Caregiving
Caregiving for people with Alzheimer’s is challenging and exhausting. We were blessed when Brooke moved into a newly created apartment downstairs and became a more active part of our lives. This has made a huge difference. Early in the year, Brooke and I met with Laura, a skilled professional with Cherrywood Village, the memory care division of Balfour Senior Living in Louisville, Colorado. She adopted us and has provided exceptional advice as we negotiate the challenges Alzheimer’s caregivers face. Laura also introduced us to Creating Moments of Joy, a book about the most effective approach to Alzheimer’s caregiving. While Gayla has vetoed our initial attempts to get her involved in a part time day program at Cherrywood, this is an option to be readdressed in the future.
Beyond having two people share the caregiving role, we are blessed that Gayla has such a positive temperament. In Surviving Alzheimer’s, a primer for caregivers, Paula Spencer Scott observes that there are four dementia personality patterns: happy in the moment, depressed/anxious, apathetic, and paranoid/frightened/angry. Gayla clearly falls in the most favorable pattern: happy in the moment. Over time, patients may move from one pattern to another. But, at least so far, we have avoided the most difficult challenges many other Alzheimer’s families face. I am so proud of Gayla for holding on to the most positive outlook possible during this trek.
Even so, after nearly two years with few breaks, I realize the stress is becoming overwhelming. I haven’t had a major writing project, the one activity that until the diagnosis had largely defined my retirement life. I have missed the stimulation that comes from interacting with others. For the past two years, the most significant change in my daily life has been my intensive role as a caregiver. My days have been devoted to meeting Gayla’s and Moxie’s needs.
Brooke’s involvement in this daily challenge has taken a toll on her as well. She is exceptionally sensitive, loving, and caring, and being totally engaged while Gayla’s memory and cognitive skills steadily erode has been heartbreaking for her. There is no relief from the sadness this illness creates.
The new regimen in which I have four hours of designated “Pete Time” on Tuesdays, Thursdays, and Fridays has brought some comfort. Since having this personal time, I am sleeping better and feel more refreshed in the mornings. I believe that this has helped me to be more engaged and effective in my caregiver role, but I know that this is not an adequate long-term answer.
Outlook
I have been writing this journal now for two years, and it seems like I am repeatedly discussing what is being lost. The simple truth, however, is that it is going to become more challenging as the disease advances. At some point, we will look back on the past two years as “the good ole days.”
There have been some precious moments of humor during the past two years, and with Alzheimer’s it is important to grab onto humor whenever you can. Here are three of my favorites.
- In the middle of the night, Gayla phoned me to tell me she was scared. I went to her bedroom, gave her a big hug, and chatted until she was feeling better. I went back to bed and was restless for the rest of the night. This morning, she was very apologetic. I told her everything is okay now that she is feeling better. Gayla confirmed that she was – but followed that with: “I promise to never burst in on you again when you’re taking a bath.”
- Gayla opened the door to my office and peered in. Hesitatingly she said, “Pete and I are going out to dinner tonight, and I wanted to know if you would like to join us?” I told her, “I’ll be there.”
- I sent the following email to Brooke, “At dinner, your mom dwelled on how much she loves you and respects you. It was fun for me to hear, but then she added, ‘She is a good, good, good person…in spite of the rain.’ Love her and laugh!”