Wednesday, March 11, 2015

When Alzheimer's / Dementia Comes Close to Home

Teddy Bear From Strangers
Teddy Bear From Strangers
CC Image courtesy of brutusfly on Flickr
If you’re over fifty, I doubt you haven’t at least contemplated whether your mental faculties were slipping when you’ve forgotten where you left the car keys or your cell phone or your glasses. Or maybe it was when you forget the name of the band that did that one-hit wonder song everyone loved back in the day. Most likely, none of that is anything more than normal memory loss, likely due to aging. It happens to all of us, not matter who you are.

And then there are those who really do have a clinical condition that leads to a diagnosis of Alzheimer’s disease or some related form of dementia. When this happens to a family member, your worldview changes in ways you couldn’t have imagined.

Without detailing the long drawn-out retelling of how it happened, we recently moved my mother-in-law from her nursing home in Indiana to an Alzheimer’s care facility very close to us in Arizona. Since her arrival, our days and nights have been filled with addressing all of her needs in her new home. We visit her several days a week, sometimes twice.

Frequently, we join her at mealtimes, sometimes helping her eat when the shaking in her hand is too great to feed herself. In between times, we wheel her around the beautiful facility and answer the same questions and comment on the same things (furniture, decorations, people, nearby buildings, landscaping) over and over again. We fight with the insurance company when necessary — our latest victory was when we were finally able to score her a wheelchair of her own instead of rental. When schedule our visits when her physical therapist is there, our goal is to get her back on a walker, as she became wheelchair-bound when she was in Indiana.

It’s not all challenges, however, and that’s the purpose of the blog entry. My mother-in-law is generally a delight to be around. She makes us laugh with her sometimes shocking commentary about her observations and thoughts in the moment. Even though her short-term memory is gone, she does remember distant events like they just happened yesterday. She always seems happy to see us and a little sad when we have to leave. It tugs at my heart every time we say goodbye to her.

We’ve gotten to know many of the other residents and their families, along with all the staff, in the short time she’s been out here. It’s amazing to witness first hand the varying degrees the disease affects the residents and how different it manifests itself in each of them. I’ve grown fond of a few of them and enjoy talking to them and hearing their comments on various things and stories of their lives. I think the saddest part is when those who are still cognizant of their surroundings express sadness / frustration at their declining abilities. Thankfully, my mother-in-law is past that stage, but for those who know what’s happening to them, it’s more than a little heartbreaking.

You get to know the unusual habits of the residents, many of which can be grouped into categories. There are the “wanderers” — those who constantly walk around the hallways, trying to open every door they find, including those controlled by numeric keypads, in a desperate attempt to spring themselves from their environs. More than once, we’ve watched as these wanderers are gently given an assist away from the doors or out of rooms, usually with an arm linked in theirs and another arm guiding them away … not forcibly, mind you, but firmly.

There are the “shoppers” who walk away with any loose items lying out. Within the first two days my mother-in-law was there, someone walked off with her wheelchair’s footrests and it took almost a month to find them. By then, they had landed in a locked storage room along with at least another thirty pairs of footrests. No doubt many of them landed in the rooms of these shoppers and relocated.

We’ve talked to former priests and bankers, writers and teachers, all of whom at one time had full cognizance and led happy lives and now lived with declining faculties. Many of these residents have spouses who come to visit and we’ve gotten to know well. At “our” dinner table, the husbands of two of the residents join them and we sit there with them, talking, helping where needed and generally “being there.”

Of course, there are the sudden deaths that happen in such facilities. As terrible as Alzheimer’s / dementia is, it’s all a death sentence. As the disease continues to take over the brain, even basic functions begin to be affect and while most expire from secondary conditions (strokes, heart attacks, pneumonia), some do pass because their organs simply stop functioning because their brains no longer can control them.

In the month that my mother-in-law has been at this facility, she already lost a roommate, a sweet, but obviously distressed woman who died in the middle of the night. Thankfully, my mother-in-law slept through what must of been an anguishing experience. But her new roommate is bedridden and always seems to be asleep; our guess is she’s under hospice care and may not last very long, either.

As you interact with these residents, you can’t help but wonder if and when your time will come. My maternal grandmother was diagnosed with Alzheimer’s in her 90’s and lived only a few years with the disease before she died. In my wife’s family, besides her mother, her great uncle and aunt (twins) both have the disease as did her maternal grandfather (when they called it “senility” brought upon by “hardening of the arteries.”). If Alzheimer’s is in your gene pool, you tend to think about it … a lot!

To all those who live with the disease, both the sufferers and their families, I wish you peace and strength in your battles, both the daily ones and the over all one. As so many elderly people have told me before, it sucks to get old … so the best advice is to enjoy your good years while you have them.


Angelo Bell said...

Wow, this hits so close to home. My mother was diagnosed with Dementia a few years ago. Since she's still in NY and I'm in LA I only see her every few years. She remembers most of my family, but the gaps in time makes her memory far less clear when it comes to me. It's hard because I am her "baby" -- or at least that what she used to say since I'm the youngest.

Sometimes I can see in her eyes that she's trying to see something 'more' in my face. Occasionally, for a moment, she'll think I'm my father or her younger brother. I'm just happy that she is physically doing well.

As for me, something I do wonder, will this happen to me? I'll be 50 in a few days and I wonder and I worry. I look at all the holistic and natural remedies out there, vitamins, supplements and all that. I just would hate it if I couldn't remember my kids. So I pray.

Michael C. Cordell said...

So sorry to read about your mom's dementia, Angelo. You're right, the one good thing to be thankful for is that she's in good physical health. I wish I could say the same for my mother-in-law ... she is always in pain (despite twice daily Tramadol) and has low level nausea all the time -- likely due to one of her many other medications.

I'll be 56 this year, so you know I'm thinking about this more now that I'm spending so much time with her. My wife & I knew that would a "side effect" of seeing her so often, as well as those similarly afflicted. I guess it's human nature to worry about such things. The lesson is to enjoy life to the fullest for as long as you can.

marty mankins said...

I've not directly experienced this but my ex-wife did when her dad contracted Alzheimer's and eventually passed away from it's effects in November 2012. My daughter watched her grandpa forget her name and always ask where I was (it had been a good 12 years since the last time I saw him and visited in their home, as I had many years before that).

So I offer my kudos to you and your wife on her mom and the visits you make and the time you spend.

I will be 52 this year and I know I do what I can to help my memory, even though it's one of those things I know that with age, as you say, that will not get better.

Michael C. Cordell said...

Thanks, Marty. I tell you, since I posted this blog, I can't believe all the changes we've seen and experiences we had. We tried to get her to use her walker by employing a physical therapist, but my MIL claims she's in too much pain and now her legs are too weak to support herself. She'll remain wheelchair-bound for the rest of her life, unfortunately.

Despite the sitting (or sleeping in bed), she's had two falls, one of which necessitated a trip to the ER as the first X-ray done at the facility indicated a broken finger. Turns out she just badly sprained her hand, but of course, every time she looks at the bruising (and it was pretty black and blue for several days), she asked how that happened. If there's a "good" side effect of completely losing the ability to retain short-term memories, it's that, I guess. The down side is she can't prevent from this happening again.