Alzheimer's and Hope - A Gift or A Curse?

EPISODE 12 --  Hope: Gift or Curse?  

Hope is a quality I’ve pondered since I was a child. In the 1950s, I watched Peter Pan, hoping enough people would believe in fairies so that the dying Tinkerbelle would live. She did. 

A few years later, I hoped Dorothy Gale would believe in the power of her ruby slippers and make her way back to Kansas. She did. 

In 1963, I hoped my mother, age 41, would survive a heart attack. Physically, she was frail. Mentally, she was tough. I believed she would survive. She did not. At 15, I lost faith in everything I believed in. 

Real life is just that. Real. So decades later when my husband lay in the hospice bed in our dining room with last-stage Alzheimer’s, I knew better than to believe that he would miraculously recover. That stage of our journey was long gone. 

And I needed hope more than ever. 

Hope. A gift or a curse? That’s what I explore in episode 12. 

My husband had Alzheimer’s. He died in July. Two weeks later, the caregivers support group I belonged to had to shut down. The organizers said they planned to regroup early next year with in-person meetings. 

In the meantime, I was one of four regulars who saw those bi-monthly meetings as safe havens where no question was too personal, where our fears were never dismissed, our failures never judged. 

Rather than have our little group disband, even for six months, I offered to use my Zoom account to keep the four of us connected. 

Before the pandemic, when the meetings were held in person, eight or ten people would show up. Most of the caregivers were dealing with a loved one who had Parkinson’s. A few, like me, were caring for a loved one with Alzheimer’s or some other form of dementia.  We had a few husbands caring for wives, a daughter caring for her mother. Most of us were wives caring for husbands. 

The men and women being cared for did not attend these meetings. Their absence gave us, the caregivers, the comfort to ask about sensitive topics, and the freedom to vent. 

Now and then, a woman would talk about the negative side effects of a new prescription her husband had been given. Someone else might ask if there was anything promising on the horizon for experimental drugs. 

We all knew that the professionals running the group weren’t there to provide medical advice. We were just looking for a reason to hope. They always gave us a reason. But I, for one, didn’t recognize it. Not at first.  

I think that when you work in the field of Alzheimer’s, Parkinson’s, Lewy Body and other forms of dementia, you know the outcome. Of course, people are different, so timing and symptoms and the actual cause of death will vary. But the outcome is always the same.  

When you’re a caregiver and you first enter that foggy field, not because it’s your profession but because your spouse is lost in that mist, you’re lost, too. All those past memories and future plans you shared, the bond of love that stabilizes your life … it’s all threatened. The ground of your heart shakes. You’re lost. 

Desperate for a signpost, you buy books that claim to cure. You buy books that claim to prevent Alzheimer’s and berate yourself for not following the protocols years ago. You read magazine articles about alternative treatments. You cling to blog posts written by people who are further along on the journey. You turn up the volume when there’s news about a new Alzheimer’s drug. That’s what hope looks like in the beginning…when you’re lost. 

I remember those days. Then time passed. I didn’t feel lost anymore. I felt angry. I watched the commercials on television. There’s one with an old man who can’t remember how to tie his shoes. Another shows an old woman sitting in a manicured garden staring at the flowers. In these portraits of Alzheimer’s, there’s usually a daughter, a son, a caretaker, or a spouse. Those people are always smiling. 

That person and the patient with Alzheimer’s might sit side-by-side and hold hands. They might work a jigsaw puzzle, or take a walk in their picket-fence neighborhood, admire the beauty of a sunset, or laugh over their dripping ice cream cones. 

Those images didn’t match my reality. 

I remember a  well-meaning volunteer I met through my local Senior Center. She came to my house and tried to engage my husband in a card game that matched pictures of shapes and colors. Dick got frustrated. 

The volunteer offered to take Dick out for ice cream. That didn’t work. Depending on his frame of mind, it could take half an hour to walk 10 feet from the front porch to the car door. 

And as for gazing at a sunset…No. Sunset wasn’t a good time of day.  What professionals call “the sunset effect” is real. Dick would often get anxious then. He might pace. He might yank the kitchen faucet. He might get visibly sad. He might cry.  

And then there’s that commercial with the kind-looking old man, dazed, wandering around, hopelessly lost. You hear the comforting voiceover of a woman who says that someday, someone will be the first patient to survive Alzheimer’s. Sure. Someday. But I knew that day wasn’t going to come fast enough to save my husband. 

Do I sound cynical? That’s how I felt back then. I remembered Pandora. I’m talking Pandora from Greek mythology, not Pandora, the company that makes pretty bracelets. 

Pandora was entrusted to care for a box. She was forbidden to open it.  Curiosity got the better of her. She lifted the lid (or in an earlier version, she uncorked a jar), and out popped all the evils of the world – violence, disease, greed, sorrow, and more. There was no way to recapture the evils. They took root in the land and in people’s hearts. The world was forever doomed. 

Or was it? 

That’s when the story’s twist is revealed. There was something else in the box, something that didn’t escape: Hope. 

Why was hope in that box? Was hope a gift to humanity, held captive in the box? Was hope put there by mistake? Or was hope another one of the world’s evils, designed to encourage and endlessly disappoint? Picture the comic strip character Lucy holding the football for Charlie Brown to kick. 

I saw hope as a curse. I felt cynical.  

Depending on where you are in the caregiver’s journey, you might feel cynical right now. There were times when I couldn’t move past that feeling and didn’t think I ever would. 

But, of course, I did. I realized I didn’t want to spend what energy I had being angry at the world. The world would go on. My husband was dying. 

I can’t say when the bitterness lifted but I did notice its absence in the spring of 2021. That’s when I got the official word that Dick and I would have to move from our condo in June. We would need to live someplace else for five months while the crumbling foundation of our building was replaced. 

Immediately, the calendar ruled. I had no time to reminisce about the first time we used the fireplace, or all the times Dick rocked our grandson to sleep in the living room, and just a few years later taught a five-year-old how to play pool in the basement.  

No time to remember the past; no time to dream of the future. Dick was well into the late stage of the disease and there was no way to predict when and how the last stage would be triggered. All I could focus on, all that was real, was now. 

Dick and I had more than 40 years of our lives in the basement. I had to empty it all. Arrange for the carpet to be removed, for the walls, the ceiling, the plumbing, to be demolished. The company replacing the foundation would remove the oil tank, furnace, and hot water heater. I still had to get the basement down to the studs. Same for the garage. Like it or not, a bulldozer was about to change my world. I had to focus on what I had to do. Now.  

Between March when I got the notice and June when we actually moved, Dick and I experienced a lot of stress. At least I knew what was happening and why. He did not. And I couldn’t fix it.  

We spent five months living with our daughter, son-in-love, and grandson. Dick and I moved back to our home in November. The disease had progressed. Six months later,  the end stage began. 

Somewhere along this whole journey, I stopped looking for an experimental drug, stopped hoping for a miracle cure. I had not, however, abandoned hope. Yes, I had denied it for a while, but I hadn’t abandoned it. Not even when hospice entered our world – especially not then. 

You see, when I was in elementary school, I learned that in Greek my name, Zita, means “seeker.” In Spanish, it means “little hope.” 

Hospice entered our lives in June. The nurses presented the reality and inevitability of death with education, understanding, compassion, and the promise that my husband would not suffer.  

I focused on the now.  Was my husband warm enough? Were his lips moist? He could no longer swallow but I could use an oral sponge to keep his lips from cracking. Were his undergarments clean and dry? When he labored to breathe, the gasping clearly painful, I gave him morphine. All the while, I told him I loved him. All the while I hoped – I hoped – he would die. Here. At home. With me.  

I just spent my first Thanksgiving in more than forty-one years without my husband. As sad as it was, I have a lot to be thankful for. Evidence of Dick’s love for me and for our family was everywhere. I didn’t expect to feel at peace. But I did. 

A few days ago, I shared with my friend Marsha Browne that I was exploring the concepts of peace and hope for the podcast. She shared with me something she had written in her journal last April. With her permission, let me share a few of her words with you. 

Marsha wrote:  The striving and the struggles against odds and obstacles are not things that we consider particularly peaceful. We don't often think of our daily lives, the routines by which our days are shaped, as being peaceful. Yet there is peace to be had, and it is freely available to all of us, every last one of us, if we can bring ourselves to accept it. The way to be peaceful is to immerse one's self fully in whatever is happening in the present moment, and remain centered right in the moment and no other, past or future. It's the thing that philosophers and great thinkers the world over have said all along.   

I talked with my friend Judy Adourian about hope and optimism. We both know how optimism can build resilience, just as optimism can distort reality. Judy said, “I think part of healthy optimism comes from mindfulness and the practice of not being attached to results and knowing that I don't necessarily know what's best.”  

Judy’s thoughts were similar to Marsha’s. We need to be mindful about what we’re doing now. 

When we’re caring for a spouse with dementia, we’re forced to live in the now. Maybe that’s the gift. Maybe NOW is where hope lives. 

That focus on the now is something I learned to appreciate when I was in the support group I talked about earlier. Amanda, Jennifer,  and Jen – the professionals who ran the group – always brought my concerns and those of the other caregivers back to the fact that help was available. Did they have a magic wand? No. They had resources: 

• They reminded us that we needed to have the basic end-of-life documents in place and they had a list of local attorneys who specialized in elder law.
• They assured us that, as caregivers, our fear and our anger were both understandable and normal. They encouraged us to attend free programs and webinars offered by various health agencies that explored the caregiver’s journey. They gave us the links so we could register. 
• They took the mystery out of walkers, wheelchairs, transport chairs, grab bars, ramps and more by having equipment representatives talk to us, answer our questions, offer suggestions. 
• They brought in an experienced caregiver and a manager of a memory care facility so that we could ask some hard questions before our needs became critical. 

That’s a small list of the resources they shared with the group. Could I have found the information on my own? In time, sure. But the information itself was only half of what I needed. I needed to know that their help was always available. That connection is what gave me hope. Not hope that my husband would be cured, but hope that I would survive. 

I want to leave you with five suggestions:  

1. Join a support group. It doesn’t matter if the group meets in-person or online. Even if you never join the conversation, simply listening to what others are going through can be helpful. 
2. When your spouse has a terminal illness, you do need to plan ahead. Get your legal paperwork in order. Check for attorneys in your area who specialize in elder law. Make an appointment. Keep it! 
3. When it comes to your relationship with your spouse, focus on the present. You can’t undo the past. The very nature of dementia makes it impossible to know what your relationship will look like in a few years, even in a few months. What you can do is be patient with yourself so you can be patient with your spouse. 
4. Keep a running list of tasks someone else could do for you. Include things like: 
• Go to the grocery store. 
• Take the dog for a walk. 
• Clean the litter box. 
• Cut the grass. Rake the leaves. Weed the garden. 
• Fill up the car with gas. 
• Take the car in for an oil change.
• Watch a movie with your spouse so you can get a hair cut, or go for a walk, or take a shower without worrying your spouse might have an accident. 
• Help with the laundry. Towards the end, I was doing 3 loads a day. 

Keep adding to the list. Tape it to the refrigerator. Doing so won’t be nearly as hard as taping up the bright orange “Do Not Resuscitate” order. 

1. Let family, friends, and neighbors know what you’re going through. When they ask how you’re doing, say, “It’s been a hard week.” When they ask what they can do to help, show them the list. Ask if they can do one thing on the list, just one. I think most people want to help. They don’t know how.  

Before I close, I want to say thank-you to “Robbi44,” who left this 5-star review on Apple Podcasts. Robbi44 wrote: “Amazing. Thank you SO much for sharing your experience. I am knee deep in this. I just sent this link to my husband’s kids & my support group coordinator. Grateful beyond words to you.”

Robbi44, I’m grateful to you. Not only for that beautiful  review but also for sharing the link to the podcast with your support group and especially with members of your family. They might have no idea of what you and your husband are going through. 

Along that same line, as you listened to this episode, if you nodded– even once – to something I said because it resonates with what you’re going through, please ask someone you trust to listen to the podcast and talk about it with you. Encourage them to ask you questions. You need to talk about what you’re going through. 

I have a Facebook page called “My Spouse Has Dementia.” Because of a technical thing I haven’t figured out, I can’t respond on the website to reviews or comments people leave. I can on the Facebook page. Please check it out. 

There’s one more thing my friend Marsha sent me. a  snippet from Dante’s Inferno. Here are the words carved on the gates of Hell:  “Abandon all hope, ye who enter here.” 

I don’t believe in the hell I learned about in school. I do believe that misery thrives when there is no hope. 

These days, sadness has a permanent place at my kitchen table. It sits next to me on the couch. It cuddles with me in bed. These days, I’m sad, but I’m not suffering. The sadness reminds me that I survived. And that, my friend, is why I have hope for my future. My future and yours.