Wednesday, June 15, 2022

Lapses and Synapses

Dad died on a late Thursday afternoon a little more than 16 years ago, just shy of his 80th birthday. Hewas unconscious, laid up in an assisted living facility south of Baltimore. His breathing had slowed and grown erratic in the days prior. He was no longer able to feed himself and labored to swallow when others tried to feed him. He couldn’t speak, and his eyes registered only flickers of recognition now and again. 

That afternoon, shortly before dinner time, his body simply quit. Truth be told, he had pretty much checked out months earlier. That’s the way Alzheimer’s works. 

Everyone knows about the cognitive decline and memory loss associated with the disease, but it also affects higher neurological functions such as heart rate, breathing, digestion and sleep patterns. Victims have trouble with nutrition and proper hydration. Those afflicted eventually lose balance and coordination, so are often confined to beds. They cannot communicate, nor control their bladder and bowels. Pneumonia and bacterial infections are leading causes of death among advanced Alzheimer’s patients, often because they are too weak or immunocompromised to respond to treatment that would cure an otherwise healthy person. 

I write this not to bring down the room, but as a reminder and a gentle nudge. Dad’s birthdate and anniversary of his death were recent, so I’ve been thinking about him. Also, June is Alzheimer’s and Brain Awareness Month. As all of you are younger than me, many of your parents are still alive and kicking. I recommend that you spend time with and appreciate your parents while you can, challenging or maddening as they might be. 

I don’t know if any of you have been touched by Alzheimer’s or dementia, but it’s a damnable disease I wouldn’t wish on Vladimir Putin. Anything that robs you of you is beyond pernicious and heartbreaking to those around you. 

Dad was in decline for several years, and Mom had to move him to multiple facilities for more comprehensive care as his condition worsened. She could only bring herself to visit him every few days, especially in the later stages, because she could hardly bear to see her husband and partner, her light and her rock, of 50-plus years erode into a shell of himself. 

I didn’t blame her one bit. When I visited, sometimes he recognized me and sometimes he didn’t. Sometimes I was just a friendly face who came to say hello and sit with him for a while. 

It was back in my sportswriting days, so whether he was asleep or awake, whether he recognized me or not, I told him what I’d been up to the previous couple weeks and what was ahead – events I covered, people I interviewed, who was playing well and who wasn’t. Dad’s condition also prompted my mom to tell my sister and me, regularly and insistently: Don’t wait. If there’s something you want to do, some place you want to go, don’t wait; do it, ASAP, because there are no guarantees. 

Mom and Dad did some traveling after he retired. They hoped to do more, intended to do more, but other concerns or situations arose that shelved plans. No problem, they thought, we’ll get around to it. Once Dad started to decline, hopes and intentions evaporated. 

Chances are, Alzheimer’s and dementia will affect all of us, directly or indirectly. The Alzheimer’s Association estimates that 6.5 million Americans have the disease. As the population ages, that number is expected to rise to 13 million by 2050. Approximately one in nine people age 65 or older has Alzheimer’s. The disease is expected to cost the country $321 billion, including more than $200 billion in Medicare and Medicaid payments. Unless treatment to slow or prevent the disease is developed, the cost is expected to hit $1 trillion by 2050. 

The country is woefully thin on geriatric care specialists. Half of primary care physicians reported that they don’t feel adequately prepared to care for patients with Alzheimer’s or other forms of dementia. Only 12 percent of nurse practitioners have expertise in gerontological care, and less than one percent of registered nurses, physicians’ assistants and pharmacists identify themselves as specializing in geriatrics. 

All of this is to say, be aware of your parents and oldsters in your orbit. Recognize that forgetfulness and confusion may be signs of regular aging, or may signal something more significant. Listen. Talk to experts. Get them tested. It may require some difficult decisions. Give them a hug. Give them some help, whether they think they need it or not.

12 comments:

Whitney said...

Lots of nuggets within this sad post. So sorry about your pop, Dave.

I wrote about the unfair deal my buddy Mike has with ALS, and make no mistake, it sucks. But he's still glad to have his wits about him, even as they are wickedly trapped in his bodily cell. Alzheimer's is so brutal.

rootsminer said...

Beautifully done, Dave. Thanks for sharing.

My former salesperson's wife was recently diagnosed. They got her to UVA for further testing soon after the diagnosis, and the last report I got was that the medication had helped inhibit her symptoms greatly.

rob said...

gheorghe does lowbrow, for sure. but we can elevate when we need to. beautiful and heartbreaking, dave.

Whitney said...

Ghost town at GTB lately. Hot time, summer in the city.

Shlara said...

Dave, thank you for this post, I'm sure it wasn't easy to write. I'm living this right now with my mom. It's a constant state of crisis and heart-break. Last May we moved her into an assisted living facility, and then sorted and packed all the belongings and memories of my parents' 50+ year marriage and home and moved my dad in an apartment nearby. He was so devastated by the past several years of her decline that he's now in bad shape too, so I moved him into assisted living last week. (Same building, different floor as my mom--at least they are close to each other.)

I hear people worry all the time about getting cancer. I had cancer. It is a cakewalk compared to dementia and ALZ. I have said 1,000 times over the last few years that I wish my mom had cancer and not ALZ.

But, as my mom often said, "It is what it is."

Love and appreciate your people while you can express it and they can hear and feel it. And don't wait to do the things in life that fill you up.

Donna said...

Any form of dementia exacts such a toll on the person diagnosed and their loved ones. So sorry for those of you having gone through it and managing it all now. My husband’s gramma lived from ages 94-99 essentially believing it was 1940 or so. His mom, in her 70s, saw her everyday and dealt with it all. She’s 91 now and worried constantly of the day that her mind will start going. So far she has done remarkably well. We’ve known several families with a loved one with early onset ALZ, too, and it’s brutal. Definitely makes taking the “you only live once” adage seriously to heart.

Danimal said...

Thank you for sharing Dave. And Shlara - thinking of you and your fam.

OBX dave said...

Shlara and Donna, so sorry to hear about your family situations. Is indeed heartbreaking. Best you can do is show up for the patient -- even if they no longer recognize you or recognition is sporadic -- and for their loved ones.

My mom dealt with guilt about not wanting to see my dad in declining condition very frequently, and my sister and I told her repeatedly: no guilt, no right or wrong way to handle it; do what you're comfortable doing. Often followed by me saying two or three goofy things to her and then, Let's go get a beer. My counseling skills are limited.

Dave said...

brutal stuff. my aunt went down with ALS when I was a kid and one of my grandparents had serious dementia. boo.

but I would wish it on vladimir putin.

zman said...

My grandmother suffered from dementia. My father moved her to a nearby assisted living facility with a "remembrance" ward for patients like her. She successfully bummed cigarettes off the nurses until she forgot how to speak English. For a while she could speak Hungarian to my father and German to another guy in there with her, but eventually she forgot everything. It was gutting for me because her biggest fear was losing her mind. I couldn't bring myself to visit her towards the end.

zman said...

On a completely unrelated note, zwoman's sister's wife had a baby, and zson recently learned the facts of life so he asked zwoman for the logistics of the conception. She's in the kitchen explaining in vitro fertilization and sperm donation, and it sounds like zson thinks they keep their eggs and some random guy's sperm in their freezer. He literally said "Where to they hide the sperm?"

rob said...

if i'm not mistaken, nephew of kq/mr kq just graduated from the same high school as did zman.