Caregivers’ lives matter, too.

10.3.2022

Yesterday, Brooke and I attended a support group meeting at Balfour, where we learned that delays in regulatory approvals have pushed back the reopening of the Cherrywood day program until mid-November. This is beyond disappointing for me. I have been anxiously waiting for some relief from the constant demands of caregiving. Now, it’s going to be another six weeks. More stress. More fatigue. Last night neither Brooke nor I got any sleep.

10.11.2022

I need to confess some raw feelings. I have loved Gayla for more than fifty years because in my view she is extraordinary: her temperament, love, magnetism, motivation, discipline, and achievement are inspiring. But as I look at this list, I know that Alzheimer’s has whittled away at these qualities. The loss of cognitive abilities has resulted in conversations that are tedious and unrewarding. She is a shadow of her former self. The Gayla I have loved has been overtaken by the Alzheimer’s Gayla. Am I now in love with memories? Maybe, but I am still in love.

10.15.2022

Tonight, I got a different peek into Gayla’s world. I have heard that people with dementia often believe that other people are stealing their money or belongings. For many months, Gayla has talked about (imaginary) people who are living in our home, and now they are coming into her bedroom and taking stuff. She lost her wallet a few times in recent days. Today, she said that someone stole some of her jewelry. Now I know this is because she moves things to protect them and then is unable to remember where she put them. The good news is that the thieves can’t find them either.

11.6.2022

Today’s support group at Balfour was eye-opening. Brooke and I opened-up about how Gayla’s rapid decline in recent weeks has drained us. Our love and concern for Gayla have not faltered, but the disconnection and confusion that have enslaved her have exhausted us. Andria, who is now our group facilitator, concluded that we need immediate help. In her view, we are burned out and our health is at risk. We need to become husband and daughter again, rather than caregivers. The day program is still around the corner.

11.13.2022

Last night Gayla called me at 3:15 because she didn’t know where she was or what she was supposed to be doing. I again went to her room to hug and console her. Today, she constantly shadowed me, including entering the bathroom after I closed the door.  She simply is unable to pursue activities on her own initiative. It is exhausting and frustrating. My stomach is growling at me.

11.15.2022

The last 24 hours have been a nightmare. I couldn’t sleep last night (only two hours). At 4:15, I got a call from Gayla in which she was completely disoriented. I went down to console her. This morning when I went into the kitchen, I smelled gas and realized that the gas to one of the burners was turned on. I shut off the gas, opened the back door, turned on the ceiling fan, and was stunned by the risks involved living with someone who is so totally confused. I taped the gas controls on the stove in the off position. I see Dr. Mondrow in two days for my annual physical and will ask for his advice about Gayla before I take any definitive actions. 

11.17.2022

Today, I had my annual physical at Dr. Mondrow’s office. My physical health is fine, but Dr. Mondrow is concerned about the lack of sleep and the mental pressures that are so challenging. He agreed that our primary goal is to get Gayla engaged in the Cherrywood day program and that action must be taken to make sure that our home is safe. Next, I will again attempt to get Gayla to voluntarily participate in the program. If unsuccessful, we will make an appointment with Dr. Mondrow, during which he will direct Gayla to participate.

11.22.2022

After explaining Dr. Mondrow’s concerns, this time my appeal to Gayla to get involved with Cherrywood was successful. We agreed that she will start the program this coming Monday. She will be a “volunteer,” and her job will be to support the staff members and provide encouragement to the residents. We billed it as an opportunity to apply the skills she used as a principal. I need to constantly remind Gayla that she has committed to make her time at Balfour a positive experience. 

I made the decision to replace the gas range with an electric/induction upgrade. Just to make our lives more challenging, last night our furnace failed. The technician who responded to our call for help advised that we need to replace our furnace. Fortunately, he had a temporary solution until we can get that done.

11.28.2022

Gayla’s first experience at Cherrywood could not have gone better. She felt that she made a difference in interacting with the residents and staff and was pleased with the positive feedback she received. Brookie and I cheered silently as Gayla told us she was comfortable there. Here’s hoping the positive interactions continue, but I know there will be bumps along the way.

12.5.2022

Gayla was on a real “high” after her visit with Balfour today. She seems to be getting comfortable with the “nice” people, facility, and her role as a volunteer. There is satisfaction from feeling that she is being helpful, and the constant stream of activities is interesting. This is encouraging, as her cognitive abilities continue to decline. Yesterday, she took the wastepaper basket from the utility room out to dump the contents in the trash barrel in the garage. When she returned, she couldn’t remember where the wastepaper basket came from. Ouch.

12.10.2022

The intrusion of this illness has no bounds. Today, Gayla followed me throughout the day. When she is not at Cherrywood, there is no escape. She loves me and wants to be with me, but the driving force is that she cannot figure out what to do with herself if no one tells her what she should be doing. This is hard because suggestions like reading, watching TV, or listening to music are not well received. She cannot use her computer or phone (other than to call me by tapping my picture icon on her screen). She needs a full-time caregiver at home, but there are limits to what I can do. Hiring an independent home caregiver will not work with Gayla because she would constantly want to check up on me (defeating the purpose). As of now, I have no solution. (What to Do?)

12.15.2022

When I arrived to pick Gayla up at Balfour yesterday, she was so involved in conversation with two residents, she didn’t even notice that I had arrived. The staff and residents love her because of her positive attitude and penchant for caring, the same reasons that her family and friends have loved her forever. (Two staff members told me that Gayla often changes the attitude in the whole room.) Later, Gayla talked about how she felt she was making a difference and added that being at Balfour was often better than being at home, where she often feels bored and can’t figure out what to do. 

For a change, I slept well last night, and when I awoke this morning, I felt a sense of calmness and peace that has been missing in my life. It was indescribable. I have always believed that my role in life is to make things happen. For a brief time, I felt that I could allow myself to let things happen. I hope to revisit this world again.

12.31.2022

Gayla spent at least six hours napping today. When awake, she was disconnected, and her time was mostly spent staring into space. After dinner, she retreated to her bedroom. When I encouraged her to come out to the living room for a while before going back to bed, she had trouble figuring out what to wear. First, she put on shorts, which was a bit strange on a freezing December 31^st night. After I suggested she wear longer pants, she tried mightily to put on the long pants over her shorts. I had to help her take her slippers off, remove the long pants, remove the shorts, and then put the long pants back on. Remarkably, she seems very comfortable with me providing the help, because she seemed at a loss of how to do this on her own. Until now, we have experienced the loss of memories and vocabulary, disconnection with reality, and ignoring personal care tasks like showering and grooming. But difficulty putting on clothes is new. Happy New Year.

1.10.2023

An interesting phenomenon is evolving at Cherrywood. Most days Gayla is happy when I pick her up, the exceptions being when she has not been engaged in the activities that have taken place. But in the mornings, she often is lukewarm about going there. I am hopeful that time will overcome this reluctance. 

1.13.2023

Alzheimer’s is a journey of ups and downs, but “touching” is always good for loved ones and caregivers alike. My goodnight hugs with Gayla are the best of the best. Touching brings back the closeness and love that have enhanced our lives. It puts current disappointments into timeout, where they belong. May I never lose this exhilarating feeling.

1.29.2023

There are times now when it is apparent that Gayla is not aware of activities taking place right in front of her. This afternoon, Brooke and Gayla were in our living room, when Gayla wanted to talk to Pete. Brooke called me on her phone and when it rang, I came into the living room from the kitchen to answer it. Gayla carried on a phone conversation with me when she was six feet away and didn’t seem realize that the person on the phone and the person in her line of sight were the same individual. 

This evening, Gayla and I went to Flatz for dinner. There were three TVs telecasting the AFC football national championship game between Kansas City and Cincinnati, and I was watching the game intermittently. Gayla said she was watching the game and enjoying it, meanwhile staring at the one wall in the room that had no TV. Later she asked if Denver had won.

2.12.2023

I relearned a lesson today, but I am sure that I will have to relearn it again. After a wonderful mountain drive this morning, Gayla made lunch for herself, and three hours later made a second lunch. I commented that she had already eaten lunch, and she was offended and certain that she had not. Eventually, I got back to basics. Would I rather be right or have her happy? No contest! When will it finally sink in?

2.16.2023

I enjoyed watching Gayla reread the book that I gave her nearly a year ago. She reveled in reading about her life and was thrilled to learn about some of the things that had happened. It is rewarding to see her cherish the past that she forgets and the reflections from friends she no longer sees. 

2.24.2023

Brene Brown says that life is about connection. The Alzheimer’s caregiver learns that Alzheimer’s is about the loss of connection, with our loved ones and friends. It’s a slow and painful decline in life as we have known it. To survive – to regain our wholeness – we need to reintegrate with the world around us. This is hard when we feel so fatigued and devastated, but it also explains why we find such comfort in support groups that share feelings and provide compassion. 

5.19.2023

For several weeks, I have taken leave from journaling for a couple of reasons. As I look back over earlier entries, there is too much repetition, and more similar entries do not seem relevant. For me, the more pressing issue is that after three and a half years of caregiving and journaling, I needed a break. 

There are cumulative consequences of caregiving. Stress and fatigue fluctuate but feed off each other. The addition of the Balfour day program to our schedule has been a blessing, but when Gayla is home there is no lasting escape from steadily declining skills. She lives in her own world, which is rarely connected with the reality the rest of us perceive. She is still in denial about her limitations, and I find that living with disconnection is challenging and tiring. Our more meaningful discussions of the past have been supplanted by banal chatter. This is mind numbing.

6.10.2023

After dinner tonight, Gayla talked about how she originally was reluctant to go to Cherrywood. Then she followed up with comments about how she likes the people she talks with when she is there. She loves most of the staff, but she is also very comfortable with the residents who, in her view, are good people who have just gotten older. They care about one another, and this is a world in which she feels at home. While she cannot see herself as a resident, she is coming to understand that she is getting older and that the future can be a positive place to look forward to. Gayla is a treat for a lot of reasons but especially for her ability to find goodness almost everywhere.

7.16.2023

The caregiver support group at Balfour has been meeting for over a year now, and the group has gelled. The cumulative knowledge in the room is uplifting. Understanding and helpful advice can come from every corner. I am not a joiner, but this has really been a positive force for Brooke and, especially, me. It is empowering to see that we have such trust and care for one another.

8.4.2023

Gayla can no longer be counted upon to perform the most basic activities. When asked to take the trash or recyclables out to the garage, she cannot remember which bin to put them in. When taking a pill the other night, she put the pill in an empty glass and stared at it, wondering what the next step should be. She sometimes wears her shirts inside out and is apt to wear unmatched earrings. She is most comfortable when she is attended by someone who she likes, trusts, and who can give her direction about what to do. This is why she follows me around the house and sits quietly staring at me when I am reading or working at my computer.

8.10.2023

With the continued decline in Gayla’s cognitive function and the mounting stress for Brooke and me as caregivers, we want to increase Gayla’s involvement at Cherrywood beyond the current fifteen hours per week. However, we do not want to push this issue too fast or too far and risk having her develop a negative attitude. 

8.13.2023

Yesterday, Gayla said that she would like to spend more time at Cherrywood. She feels that she is making a difference by helping people there, but at home she just wonders what she is supposed to be doing. Today, she could not remember ever saying that she wanted to increase her time at Cherrywood. Instead, she thinks it would be better to cut back to only two days a week. This is like playing racquetball when the ball never stops! 

8.16.2023

“This was a shocking wakeup call for me! … I finally accepted that I need to stop living in a world that cannot be.”

Today was a reality check, heartbreaker, and glimpse into the future. Brooke and I met with Andria, who was our support group facilitator and knows Gayla, Brooke and me well. She has observed the changes in us as Alzheimer’s has taken its toll. Andria understands what we do not and has a clear vision of what the future will bring. She advised us to start thinking about moving Gayla to Balfour, perhaps within six months, because this is soon going to be the right decision for all of us. This was a shocking wakeup call for me! I knew the day would come, but in my mind it was two years off. After thinking about it all afternoon, I finally accepted that I need to stop living in in a world that cannot be. I want to object, but I know that Andria is right. As a first step, I will meet with Drew, the new Executive Director of Cherrywood, to map out a plan to increase Gayla’s participation in the day program.

8.18.2023

A new beginning? Today, I met with Drew, who brings energy and a refreshing new approach to memory care at Cherrywood. She indicated that future activities programing will be upgraded to better meet the needs, interests and capabilities of individual residents. This is encouraging. I know it will be particularly beneficial for Gayla, who is among the higher-level functioning participants, and she has not been stimulated by some of the generic activities available in the past. We decided to increase her schedule at Cherrywood to five days a week. Other adjustments may be made when we learn how Gayla responds to the new schedule. 

9.4.2023

Gayla’s disconnection may have advanced to a new level. She was on the other side of a room staring in my direction. I made a comment, and she was unresponsive. I waved my hand at her, and she still did not respond. Finally, when I moved toward her, she appeared to come out of a trance and was reconnected. I don’t know what this means, but I have not experienced this behavior in the past.

9.20.2023

A health scare today made a huge impression on me. Fortunately, everything worked out, but I now have even more concerns about the future.

At about four, Gayla came into the living room and sat quietly for a few minutes before she murmured through closed lips, “I don’t know what is wrong, but I can’t talk.” Her face was drawn, and my heart skipped a beat. I asked if she would like to try a glass of water or suck on an ice cube. After she shook her head, I walked over to look in her mouth. Her tongue was swollen and filled her whole mouth, possibly blocking her ability to breathe. We went to the emergency ward at Avista, where she was diagnosed with angioedema caused by a reaction to one of her medications. Treatment solved the issue, we were home by 7:30, and a new prescription has been substituted. This narrative does not capture the intense feelings when there was a question of whether the swelling would shut off her ability to breathe. And now I worry about what other medical emergencies may await us.

9.26.2023

When it was time for Gayla to take her evening pill, I placed the pill and water glass before her and left her alone for about ten seconds. When I returned, she had put the pill in the half-filled water glass and was staring at it. I guess she was wondering what comes next. A couple of weeks ago, there was a dry run on this act. There is no way to know what is going on inside an Alzheimer’s infested brain.

Year End Thoughts

10.2.2023

The first three years after Gayla’s Alzheimer’s diagnosis, I wrote annual updates tracking the progression of the disease and its effect on our lives. We have now reached four years since her diagnosis and ten years since the first signs of short-term memory loss. This unrelenting disease is the elephant in the room that never goes away.

The year started off with a major breakthrough. After two unsuccessful years of trying to convince Gayla to visit Cherrywood Village with the goal of having her become a “volunteer,” we finally succeeded in December 2022. The results have been beyond our expectations. Gayla usually comes home positive and satisfied. The exceptions have been on days when she did not find the activities stimulating. 

This issue is now being addressed, and we believe Gayla is more engaged. With the significant decline over the past year, she views herself less as a volunteer and identifies more with some of the residents as friends.  When home, she relies on me to plan and orchestrate each day. On a few occasions, I’ve commented that she seems to be happier at Balfour than she is at home when I am working on my computer or separately involved in other activities. She agrees. 

Assessment

From the beginning, Gayla’s Alzheimer’s journey has been tiring and difficult. This year is even more disheartening because the impairment is more pronounced. Now, reality and imagined reality are indistinguishable. Self-confidence has given way to insecurity and indecision. Ingrained optimism has sometimes been replaced by abrupt mood swings. Leadership has turned into dependency. Confusion is magnified by disconnection. Midnight restlessness has been replaced by excessive sleeping.

All our lives we have been advised to live in the moment, but Alzheimer’s challenges that idea by showing how shallow life can be without an ongoing awareness of the future and the past. Nobody lives in the moment more than a person cursed with Alzheimer’s. Each moment stands alone without the benefit of hindsight, foresight, or sense of control. And, as memories are lost or become distorted, they are replaced by fabrications about what has happened in the past.

Gayla is still social and shines in short conversations when meeting people on her walks. Most of the time, however, she seems to be living in her own world. Processing new information is either difficult or impossible. She participates in conversations, but her comments are often unrelated to the discussions taking place. She no longer Initiates activities like reading, taking showers, or listening to music. She cannot do puzzles or make phone calls. She has become accustomed to sitting in her chair and dozing or staring into space. She does not even recognize the clothes in her own closet. The Gayla we all have all known and loved is no longer herself. 

Two journal entries from earlier this year provide a glimpse into the confounding life that Gayla is now living.

2.25.2023

Yesterday, we decided to take Moxie on a walk when the temperature outside was in the twenties. Gayla proceeded to take her shoes off and started to put her bedroom slippers on. Tonight, when we were getting ready for bed, she started to put on her overcoat, thinking we had to go to another house to find her bedroom. There is no longer an expectation that her perception has anything to do with reality.

4.12.2023

On a walk today, we ran into Pat, a 90+ year old acquaintance and neighbor, who broke down in tears as she related that her son (a mentally challenged man in his sixties, who had lived with his parents all his life) had died from multiple Covid-related problems. This is on the heels of her husband’s death 14 months ago. No one (certainly most of all not me) could have handled the situation more gracefully, sincerely, and tactfully than Gayla. She hugged Pat, looked directly into her eyes, kissed her, and demonstrated deep-felt love and affection, as I stood by awkwardly, uncertain, and thinking that this is the reality of living at a very old age. Gayla’s Alzheimer’s has brought challenges, but the values that have made her so loved live on.

The first of these two journal entries shows why Gayla needs the assistance she receives at Cherrywood. The second shows why she has been so well embraced by the Cherrywood residents and staff.

Caregiving

Laughing has always been Gayla’s favorite activity. So, when we learned about the Alzheimer’s diagnosis, I committed myself to a goal of helping Gayla live as happy a life as possible for as long as possible. To do that, Brooke and I adopted the Creating Moments of Joy approach to caregiving. It is tailormade for optimists, and works especially well for people, like Gayla, who are oblivious to the extent of their impairment and the long-term ramifications of the disease. Unfortunately, we are approaching the time when denial will be confronted by reality. This is the moment I have dreaded from the beginning.

The truth is that Alzheimer’s has created less stress for Gayla than it has for other family members. (See Brooke’s journal entry below.) Brooke and I have experienced the painful decline every day. For me, this has been the biggest challenge of my life. Fortunately, despite the stress, neither Brooke nor I have faced new major health problems. But we’ve flirted with them.

The problem I am wrestling with is determining the point at which the demands of my role are too great. How I will recognize when it is time for Gayla to move to Cherrywood and have professional caregivers assume control? This issue is agonizing and won’t go away. I have no answer. I only know that I have been losing parts of Gayla for a long time, and I want to hang on to what is left as long as I can. 

I’d love to end this journal entry on an upbeat note. Gayla and I have been blessed, have had fulfilling lives, and are thankful beyond words. But there is another even greater concern that haunts me now. Genetics is what brought Gayla to this point. Her aunt had Alzheimer’s, her mother had dementia, and her sister is battling dementia in Balfour’s Longmont, Colorado facility. My greatest concern is for our kids and grandkids. Will this ever stop? Fortunately, researchers are making progress. So, there Is hope.

Brooke’s Journal Entry

This past year has been gut-wrenching, emotionally demanding, funny at times, devastating at others, exhausting, fulfilling, heart-warming, filled with love and gratitude, and overwhelming. My overriding experience has been one of concern for my dad. The year has taken a tremendous toll—physically exhausting and emotionally draining him. I’ve been worried about his health and wellbeing, worried I’m not doing enough around the house or to support him, worried I’m not pulling my weight. Dad insists that I need to live my life, which I continue to do, but I always feel like I have one shoe in whatever I’m doing and another shoe ready to run for home and be here just in case. So, I never feel fully present when I’m not home. I live in a constant state of fear that something is going to happen to Mom while I’m gone and that Dad will have to handle it on his own.

“I live in a constant state of fear that something is going to happen to Mom while I’m gone and that Dad will have to handle it on his own.”

Mom has gone downhill significantly. She is just floating right now, mostly hard to connect with but still incredibly loving and kind to me. That is the silver lining in all of this—we have the most loving and warm relationship we’ve ever had. She loves me deeply and makes sure I know it. But she can’t carry on a conversation, stares into space, and is so confused much of the time. At her 56^th Anniversary party with Robb and the kids she repeatedly sang “Happy Birthday” to Robb, no matter how many times we told her it was her anniversary. It was so sweet and funny and just tugged at my heartstrings. 

Mom being at Cherrywood has been a game-changer for us, but even with that Dad has been stressed. We’ve had several appliances break and other house issues arise. It all feels like too much. This has once again left me anxious and scared for my dad, worried that he doesn’t have an outlet for his stress and that he will deteriorate. Mom relies on him for everything. She loves me and trusts me, but she turns to him for everything. I am no substitute for Dad. He has had to take on several tasks and chores that he did not used to have to do, but I have asked him which of these I can take over.

As for Mom…she lives in her own world, talking to herself and to Moxie. Butting into conversations to ask what we’re talking about but then losing interest because she can’t understand. Sitting in her green chair staring into space or dozing off for hours on end. I wonder what goes on in her head, if anything. She is always very happy to accompany me on any errands I have, but her contributions to the conversation are things like “down it goes,” (observing the garage door descending). Mom listens attentively when I talk to her about what is going on in my life, but it’s apparent from her follow-up comments that she does not really understand the meaning behind what I’m saying.

I miss her. She’s here but she’s not here. Her volatility has increased—she is quicker to anger, and while she can be redirected easily, it’s no fun when she has her angry energy. Like when she thinks she’s fed Moxie, and she hasn’t. Whenever she mis-remembers something that Dad and I know is inaccurate it gets awkward and challenging. She’s stubborn and defensive, and those moments are difficult. She accuses us of calling her/thinking she’s stupid, says she’s right, etc. We never quite know what to do in these situations except try to change the subject as soon as possible, but sometimes it’s a situation that needs to be dealt with. Those are the times that I just feel lost and sad. I’m out of my element. I don’t know what to do and I miss my mom—the smart, outgoing, put-together, positive, and upbeat Mom I grew up with. The mom of today makes sure I know how much she loves me and how proud she is of me. I love this mom more and more every day and just want to protect her and shield her from all danger and negativity. I treasure my time with her, and I am so blessed to live here with her. But I miss my other mom, too. 

I’m sad about my mom a lot of the time, but I don’t always want to talk to Dad about it because he has enough on his plate. I also feel a little numb. I can’t cry about her, and that makes me feel cold and heartless, but my therapist says it’s a way of protecting myself. Because I’m certainly sad enough to cry. But I also feel a great joy at the love that flows so freely between the three of us, and between my dad and me and between my mom and me. I am so grateful and so blessed. Moving in here was the best decision I have ever made. Truly. There’s nowhere I’d rather be.