A Living Eulogy: World Alzheimer’s Month reminds us to consider our elders, carers

My grandfather is a masterful storyteller, who can thread the needle with grace and skill. He knows the jagged mountains of central Pennsylvania as well as the veins in his hands. He is mischievous, bawdy and dryly funny. He loves a game of cards and ties the most beautiful flies. He rises early, works hard and is out in the meadows on the first day of hunting season every year. He taught me to hike, drive and swim. He sends me clippings from the funny papers and calls me every Sunday to talk for an hour. He is wonderful. He is complicated. To me, he’s Pop. And for the last several years, he has suffered from Alzheimer’s and vascular dementia.

Dementia is an umbrella term for several diseases affecting the brain, but is most commonly defined as two or more areas of the brain experiencing die-off, affecting memory and cognition. It presents in 10% of the population aged 65 and older, and over a third of people aged 85 and older. Of those diseases classed as dementia, Alzheimer’s is the most commonly diagnosed form worldwide.

While we all experience a measure of cognitive decline as we age, dementia is abnormal in how it impacts our ability to carry out daily tasks and our relationship with reality. If we can’t party like we used to, or recover from an injury or illness as swiftly as we once did, why do we expect our brains to be different? There’s no shame in it. Time comes for us all. We should be concerned only when our natural decline crosses over into the unnatural. For my grandfather, this began in 2018.

My mother went to stay with him after a hunting accident led to surgery and soon noticed he wasn’t quite himself, but I downplayed her concern. He seemed fine at Christmas and when we chatted on the phone. Yes, he told me the same story again, but he’d done that my whole life. He’s a natural showman who loves spinning a yarn to a willing and/or captive audience, no matter how many times they’ve heard it.

A few months later, she called from the emergency room to tell me he burned himself on his stove. Apparently, he noticed the warning light indicating the stove was on and placed his hand down on the hot burner in front of her ‘to check.’ This episode only heightened her fears that something was seriously wrong. He was growing paranoid: locking himself out of his garage, then rising in a panic in the middle of the night to search for the missing keys because ‘someone was stealing equipment.’ He returned home in tears one afternoon that summer, unable to find his way to his dentist, who he’d seen since the early 90s. When he asked for help at a gas station, people ‘looked at [him] like [he] was crazy.’ My mother comforted him, took him to his appointment and resolved to speak to his doctor. The doctor agreed it was concerning, but — after my grandfather passed basic cognitive tests — said there was nothing more to be done. He ordered no additional testing. The next year, the pandemic arrived, isolating them. My grandfather, a social butterfly, deteriorated rapidly when kept indoors.

By the time I was finally able to visit them again, in late 2021, I could see what my mother did. He was frailer. He rambled on to strangers about his exploits in the Navy, but he was quick to grow irritated or anxious in public. He wasn’t as confident or charming, he didn’t want to do things he’d previously loved. If he sensed something was wrong, he was too proud to say it, much less to seek the answers we needed with another practitioner. We had no diagnosis and no way to achieve one. No diagnosis meant no way of knowing, no treatment, no assistance, no comfort.

That came in September 2022 after my mother brought him to live with her in Wyoming. He tolerated the move, then declined again and suffered a psychotic break. His new doctor was able to stabilize him and referred us to a local neurologist, who did extensive testing. I flew out the day after my shoot wrapped to be in the room with my family. Large amounts of tissue in my grandfather’s brain had atrophied, explained the neurologist. Dark patches on his MRI signalled prolonged die-off, which led them to conclude he was suffering from dementia and had been for a while. My grandfather took it well. My mother, emotional, felt relief at having an answer. I went for a hike and cried.

Last year, amid my industry’s strikes, I opted to come home. I was worried about my mother, who shouldered the lion’s share of my grandfather’s care. He only received a set number of hours each week from the VA and it was difficult finding a caregiving service to fulfill those hours and give her a break. Inconsistent schedules and last minute cancellations were common. With me at home, she returned to work and we kept up on the house and property together. We were even able to take steps toward having him placed in a facility known for its memory care, but were gutted to learn they wanted $25,000 upfront and my grandfather’s longterm care policy did not provide for a facility, only in-home care. The emotional and mental burden of caregiving remained with us.

I understand many view caregiving, especially for family, as a noble act. I know some even believe there’s an unspoken contract — I gave to you for years, so you must care for me when the time comes. I won’t pretend I’ve not had moments I’ve genuinely and deeply enjoyed with my grandfather. However, I also won’t sugarcoat it: I am mentally, physically and emotionally exhausted. I feel so alone and removed from my peers and the things that bring me joy that, after years of remission, my depression has reared its ugly head with a vengeance. Yes, we have a nurse, but what’s 20 hours a week when you’re working them all and still left the remaining 92? We are fatigued, burned out, stressed, lonely. This is the hard reality of caregiving no one ever seems to acknowledge.

When we spoke to intake specialists at different facilities last year, they gave us similar accounts. The loved one with dementia becomes more difficult to handle, but the caregiver holds on. The caregiver, usually (but not always) a woman, masks the true extent of their exhaustion and conflicting emotions: they feel guilty for wanting to put the loved one in a facility, like a failure for ‘giving up,’ like a wimp for not being ‘tough enough.’ They feel isolated in a topsy-turvy-upside-down-world. They don’t sleep. They don’t socialize. They don’t have fun. Their lives, gradually, come to focus exclusively on providing for the loved one. But then the loved one enters a facility and the caregiver, inexplicably, sleeps 10 hours a night for six months straight. The caregiver begins eating well and socializing once more. The caregiver does things for themself again. All around, they seem better. Again and again, we heard this story.

And now, at least for a brief spell, we’re living it. My grandfather, who has become increasingly agitated as he enters dementia’s late stages, is currently in a facility while my mother and I discuss moving forward with permanent placement. The simple, albeit bitter truth is we can no longer care for my grandfather at home.

I’ve sincerely appreciated the nurses and hospice workers who have looked after my grandfather since coming to Wyoming. On a whole, he’s received stellar care. Unfortunately, we’ve also encountered our fair share of crooks and hucksters. It’s interesting, learning so relatively early in my life that there is a cottage industry profiting off the highway robbery of the sick and elderly, and their concerned families. Some readily took advantage of our situation. Others — both here and in Pennsylvania — directly manipulated my grandfather for their own ends and gains.

For this reason, I’ve been touched by how many strangers in Wyoming have been kind to our family. I’ve always been open with why I’m here and always receive compassion in return. We’ve also received offers of help from strangers, which is entirely unsurprising. For its faults, Wyoming is a place I’ve often defended to my friends on the coasts by citing its communal and giving spirit, which flies under the radar of popular discourse. There are people here who have offered their cars, homes, time or simply attention to us. To be loved is to be seen and in this way, I do feel well loved by new friends and relative strangers alike.

The reality is my words will not fix the deeply broken, for-profit medical system caring for people like my grandfather. There will be no sea change because of me. I cannot do more to raise awareness for how common this disease is — and how much more common it will become — than is already being done by various charities and doctors. But if I can encourage anyone to do anything, please let it be to generously support those in your life who have taken on the Herculean task of caregiving. It is tremendous work and those doing it are unsung and often forgotten. 

To those caring for a loved one living with dementia, I know how hard and scary it can be, how painful it is to lose someone you love and grieve them while they still live. I encourage you to reach out, ask for help and share your load. While individual therapy is ideal, there are community resources and support groups available as well, and I encourage you to use them.

The Park County Library’s Cody branch holds a dementia support group in the Eagle Room at 1 p.m. on the third Tuesday of each month. They will next meet on Oct. 15, 2024. Additional resources, including online and bilingual support groups, may be found at alz.org.