Chapter Seven

Being separated from someone you have loved and lived with for more than fifty years is painful. For different reasons, Gayla and I both had difficulties adjusting. Gayla’s have been more lasting than mine.

Gayla

Until now, Gayla has had the comfort of living in her own home with people who love her and with a familiar rhythm of life. The move to full-time residency was a change on a much larger scale than when she entered the day program.

Initially, Gayla embraced the move. But her inability to recognize that Alzheimer’s has impaired her cognitive and social skills caused her to resist caregivers’ efforts to help with personal care, meals, and activities. The attitude she expressed two years ago endures: “I’m me. I’ve always been in control, and just because I have dementia doesn’t mean I can’t control my own life.” It soon became apparent that it would take time before Gayla would accept the need for caregiver support and fully adapt to living at Cherrywood.

Possibly to assert her independence, Gayla started sleeping later in the morning and occasionally withdrawing to her bedroom during the day. The staff understands the adjustment process and has been remarkably patient. When Carol, Judy, Brooke or I pick her up to go out for a meal or coffee, Gayla usually greets us happily and is excited to go. For a couple of months, however, she was uncomfortable when we took her back.

By February, her reluctance had subsided. Gayla was more comfortable in her new home. She likes and respects the people – and the family atmosphere. She announced at a residents’ meeting that she is happy to be living at Cherrywood, but Gayla has remained resistant to caregiver support.

There will always be ups and downs. Alzheimer’s ensures that good moments will eventually be followed by negativity in some form. Like many other residents, for the foreseeable future Gayla will continue to crave independence. We also know that the most challenging health issues are still on the horizon. This is the never-ending curse that Alzheimer’s guarantees. All we can do is keep loving and hang on.

Pete

For me, Alzheimer’s started as a heartbreaking experience that evolved into the dominant reality of my life. I cared, and caregiving became a mission. It was the focus around which all my other life activities drifted. I didn’t do everything right, but I loved and persisted.

As unprepared as I was at the beginning of this journey, I was as emotionally unprepared when Gayla moved to Cherrywood. The following days were aimless. I cleaned the house but didn’t know what else to do besides worry about what was happening at Cherrywood. I knew that I wanted to write about our experiences, but I was overwhelmed by emptiness. That could not last long, and it didn’t. January marked the beginning of my new life. I started thinking about other things, exercising, reconnecting with family and friends, and rediscovering the benefits of a good night’s sleep. And one day, I woke up with the urge to begin writing my book about our Alzheimer’s journey.

Andria had advised me to not fall into the trap of going to Cherrywood every day. Daily visits become an obligation instead of an opportunity. So, Gayla and I go out to lunch once a week and to dinner on Sunday nights. I also stop by for visits once or twice a week. I look forward to my times with Gayla. The hugs are as good as they used to be, and we always find a way to laugh about something. Every smile is a success for both of us.

My new life has many advantages. I feel mentally stimulated, experience less stress, and am refreshed by sleeping at night. Exercise is bringing back the feeling of physical health. While the daily caregiving experience was demanding, there have been rewards that endure. Alzheimer’s taught me more about myself. It gave me a deeper understanding about how important it is to be immersed in connection. Compassion matters. As we age, our greatest joys come from contributing to others and making a difference.

The end of daily caregiving introduced me to a renewed life. Stress has been greatly reduced (I tell friends that I donated my stress to Cherrywood). I am forever indebted to Brooke, who has shared the anguish of this journey and encouraged me every step of the way. Thank you, Brookie. You have endured all the pain and propped me up at the same time. You are remarkable.

I am also grateful for Balfour. From the beginning of our Alzheimer’s journey when we knew little about what the future would bring, their professionals have given us sound advice. Their support was invaluable, and they earned our trust. We are not alone; the last three new residents at Cherrywood all transferred from other memory care facilities because the quality of the Cherrywood staff is exceptional. An Alzheimer’s journey will always be difficult, and having knowledgeable people to help guide you is a blessing.

Lessons Learned

When we first attended the Alzheimer’s Association’s couples’ orientation four years ago, the phrase “If you’ve seen one case of Alzheimer’s, you’ve seen one case of Alzheimer’s” was recited several times. The message, of course, is that every situation is unique, and this observation is validated every time I visit Cherrywood. The experiences Gayla and I have had will differ for others who tread the same path. But I also learned from our support group meetings that many of the issues we face are common, and we gain knowledge and comfort from meeting together. I am not a joiner, but this is one group that proved exceptionally beneficial as I was trying to find inner peace while becoming an effective caregiver. My advice: don’t isolate yourself and try to reinvent the wheel. Millions of people have traveled this journey before us, and there is much we can learn.

Over the past four years, I’m sure I made many mistakes, but in retrospect two stand out. Both mistakes resulted from trying too hard to be a good caregiver. I had been advised to focus on my own health as well as Gayla’s, but I didn’t. I was so tired in the mornings from not sleeping that my life-long habit of morning exercises got tabled. When we started our journey, I regularly did thirty pushups. After Gayla moved to Cherrywood, I struggled to do one. We had belonged to a health club that I used frequently in the afternoons, but we cancelled our membership after I had failed to use it a single time over a six-month period. Now, I am slowly regaining my conditioning, but this is not easy for any octogenarian. 

“Over the past four years, I’m sure I made many mistakes, but in retrospect two stand out. Both mistakes resulted from trying too hard to be a good caregiver.”

I also believe I was not assertive enough with Gayla about getting her into the Cherrywood day program earlier than I did. The program was an ideal solution for both preparing her for her ultimate move and reducing the stress I was experiencing after three years of caregiving. By failing to do so, my stress approached an almost unbearable level. Things could have turned out much worse. I failed to heed the advice I had received about self-care, and I caution future caregivers to not make the same mistake.

Caring for Your Loved One

When I was blindsided by the news that I had become an Alzheimer’s caregiver, I was overwhelmed. “How do you do this?” It took a while before I learned about the perfect playbook to answer this question: Jolene Brackey’s Creating Moments of Joy. It’s a practical guide that provides a basic understanding of the disease and strategies for becoming an effective caregiver. Nothing will ever make caregiving easy, but this book makes it less difficult.

Some foundational thoughts, mostly from Brackey’s book: People with dementia don’t think there is anything wrong with them. They lose inhibitions and respond impulsively. The outcome is not in your hands. Accept reality. Attitude is everything. Tone of voice matters. Your mood affects their mood. Accept where they are in their own minds. They need structure and routine. This will be hard work. To sustain yourself emotionally, you must want to do it. This could never be done well without love.

Based on my experience, here are some caregiving thoughts that will brighten your loved one’s lives.

• Alzheimer’s crushes self-confidence. Criticism makes it worse. Love is the antidote.
• Unexpected neck and shoulder massages feel good and help you reconnect.
• Touching and hugging are good for your loved one – and for you.
• Hug the whole person, hug all your good memories, hug the life you had together.
• Blame anything bad that happens on something or someone else. Including yourself – not your loved one.
• Deductive reasoning and rational conversations cannot cure confusion.
• Reconnect with the past whenever you can. Pictures, scrapbooks, and music can work wonders.
• Laughter enhances your sense of well-being, reduces stress, and improves your ability to survive a crisis.
• Accept their reality and live in their world. Stop correcting them. They can’t change, so in that moment you must.
• Choose happiness over bickering and being right.
• Remind them often that you love them.
• Ask friends to send cards on special occasions.
• When stymied by a disagreement, let it go or change the topic (“I have to go to the bathroom” or “Time out, let’s have a cookie.”)
• Be patient. At first, they will not want to give up making decisions. In time, decision making becomes threatening to them.
• Receiving notes from friends about how meaningful their relationship has been creates happiness.
• When confusion causes uncertainty about where to go, lead by holding hands.
• Never lose sight of the love that you have known.
• The warmth of companionship never gets old.

Caring For Yourself

Self-care for Alzheimer’s caregivers is a more serious issue than most caregivers realize. In 1999, a study published in the Journal of the American Medical Association reported that caregivers for a spouse with dementia had a 63% higher mortality rate than non-caregivers. This is largely because of increased stress, depression and physical health challenges. Taking proper care of yourself could save your life.

Stress for me peaked two times in the past four years. The first was just prior to Gayla entering the Balfour day program, and the second was before her move to full-time residency. In both cases, the changes in the rhythm of our lives provided the relief I needed from stress. Not surprisingly, I’m now a believer in getting professional help. But there are many other actions you can take to improve your life while fulfilling your responsibilities as a caregiver.

• Avoid isolation. Start by realizing you are not alone; you are part of a community. You can help others, and they can help you to understand and cope. Join a support group. There, you will find answers to many of the questions you have.
• Happiness is determined not by the problems you face, but by the way in which you deal with the problems you face. Commit to a positive attitude.
• Enlist the help of willing family members and close friends to provide periodic breaks from your caregiving responsibilities.
• Although we never contacted one, there are independent caregivers that provide professional help when family and friends are unable to meet your needs. This is expensive, but it may give you your life back.
• Professionals in senior living communities, and especially those who provide memory care services, want to help others who are dealing with age-related issues. Find a way to get in touch, and you will be rewarded beyond your expectations. We were blessed when we met Laura, who adopted us and provided excellent advice over a two-year period.
• There are things in life that you cannot control, but you do have some control over your thoughts and feelings. Meditation can help you to quiet distracting feelings and accept the anxiety of a caregiving life.
• Maintaining perspective is critical. Writing a gratitude journal is cathartic and regenerative.
• To deal with flagging patience, think about how much worse things could be.
• If the stress becomes too great, find a therapist who can give you proper support.
• In time, conversations with your loved one will turn banal. When repetitive, they are mind-numbing. Adult conversations are necessary to keep you stimulated and aware. Find a way to connect with others to make this happen.
• A personal favorite: a picture of young Gayla is the background on my phone and a 1982 picture of our family on a Mexican beach is the wallpaper on my computer. I smile about our past lives every day.
• Be proud. When you are confident that you are doing your caregiving job well, you feel that you are living up to your values.
• If you want to be happy, help someone else.
• I asked two of Gayla’s closest friends (Carol and Judy) to be emergency backups if something happened to Brooke and me. They have been exceptionally helpful throughout this experience and graciously agreed. This gave me comfort and fortunately was never required.
• Look at caregiving as a personal growth opportunity and make it happen. It is also an opportunity to role model for your children.
• Plan for your future. Someday you’ll need someone to take care of you.

Selecting a Memory Care Facility

The first time I went into a memory care facility, I was shocked. The people were old. Feeble. Immobile. I was uncomfortable.

I’ve learned a lot since then. Now when I go to Cherrywood, I see the residents as survivors and the staff as miracle workers. Individual residents have their own idiosyncrasies and staff members know how to deal with each of them. The people who work at Cherrywood are there for a reason; they have chosen lives during which they can make a difference. And, they have created a warm and welcoming family environment.

During my four and half years of caregiving, I repeatedly heard about the guilt I would experience when I made the decision to move Gayla to a memory care facility. It was one of my greatest fears, but it hasn’t happened for two reasons. I feel that I did a good job as a family caregiver, and I believe that Gayla now is safer and in the care of people who can meet her needs better than I could.

There have been many media reports about memory care facilities that are not performing as well as they should. Based on my experience, here is what I believe caregivers should explore when selecting a memory care facility:

• Look for a provider that specializes in memory care services. They are more likely to have specialists who understand the unique needs of people with dementia.
• The most important consideration is the quality and motivation of the staff. Good people do not work for subpar employers. The safety, stimulation, and happiness of your loved one depends on the staff.
• Learn about the life enrichment and activities program. Residents have disparate needs, and activities should be available to properly serve each person. (Note: When memory care facilities are under financial pressure, expenditures on life enrichment programs and food preparation are the first to be reduced.)
• Make sure there are enough caregivers to provide individualized attention for each of the residents.
• Check for safety and security. Wandering is a concern and secured entrances are essential.
• Make sure qualified healthcare professionals are available to administer medications and provide medical services as needed.
• Open communications are essential. Ensure that management welcomes your feedback and will be responsive to your needs.
• Check references and customer reviews. Satisfied customers are a strong indication the facility is performing up to expectations.

Financial considerations can never be overlooked and may be paramount. Be aware that organizations that do the best job meeting the eight considerations listed above, will likely charge a premium for their superior services.

A Final Note

Like those of you who are new to your Alzheimer’s journey, this experience was never on my bucket list. And it has been far from a joyful ride. But I have gained a greater appreciation of all the blessings that Gayla and I shared over the years, and I have learned more about what is most important in my life. I sincerely hope that our experience will prove to be helpful to you as you move ahead. I care, and my thoughts and prayers will always be with you.