And on the Topic of Quality of Life…
Posted on January 14, 2013
I had a very odd moment with my mother yesterday. We were chatting while I was taking a new microwave oven out of the box for them and one of the topics that got brought up was how much we were cleaning out of our respective homes and giving it all to a local charity. She has a huge number of books in the living room that my father never got around to reading or will never read again. He can’t remember what he reads now, so he doesn’t bother with it, plus it’s a hassle for him to put the words together let alone understand it. I suggested she take ten minutes out each day and start putting the books she knows will never get opened into bags that she either gives away or finds homes for with people she knows. She hesitated, looked up at me and said “I just can’t yet. I mean…what if?” As in what if a miracle happens and he gets better?
I admit it. I was surprised. I was surprised that it was even a thought in her head and even more so that she actually said it. Has anybody ever come back from Alzheimer’s? Of course, this means I’m automatically assuming that it’s entirely impossible and could never happen. I’m honestly not sure now if it’s good I’ve accepted that aspect of the way things are or if I’m hindering having faith that miracles can indeed happen. I’d like to think they can and I love the idea that miracles aren’t always the parting of seas. They’re sometimes small and intimate. Yet I can’t just sit and wait for one to happen without acknowledging that it probably won’t. No, I’m not a “the glass if half empty” kinda guy. I just want to know who drank out of my cup.
Dad’s quality of life has nothing to do with his books. At least I don’t believe it does. One might argue that just by having them around creates a comfort zone due to a sense of familiarity. I’d argue back and say that he gets far more out of his stuffed animals than he does the books. Mom will never read them, so does this maybe have to do with a little bit of her quality of life now rather than his?
That’s another odd thought because so much attention is spent on the person who has the disease and their quality of life that we don’t always look at the spouse, loved one, family member or caretaker. I have a pretty good idea what makes mom happy and when she’s in the comfort zone she’s created in the form of her computer/research/storage room. My own comfort zone is being surrounding by my CD/DVD/Blu-Ray collection, so I know that these zones are very important. But by going through the books and eliminating things she doesn’t need around the house, she’s making room for things that are in drastically overcrowded places and would be much easier for her to access if they were moved.
On a related note when it comes to quality of life, my father-in-law who doesn’t know he’s my father-in-law was discharged from the hospital last Friday. Unfortunately, because he’s still unsteady on his feet, he’s currently staying with my brother-in-law. Ralph came in two nights ago at midnight and was telling me how FIL mentioned he wished he’d gone to a rehab facility instead of going to his son’s place. Why? Because it was awkward (and rightfully so) that his sons had to help him in and out of the shower due to his mobility issues. I told him the solution was simple and to ask his father if he’d rather I and brother-in-law’s girlfriend helped him and out of the shower.
Should clear that awkwardness REAL fast.
But things are going to be about FIL’s quality of life very soon, too. This week, probably. The doctors are going to sit down with the family and discuss a chemo treatment. A very, very good friend in Atlanta who happens to be neurologist texted me when he found this out and made sure to tell me “Nudge them toward quality of life discussions. Oncologists tend to make it sound as if chemo is helpful all the time when all you want is for your last chapter of life to be comfortable.” We have no idea how far we are into the last chapter of FIL’s life or how many chapters he has left, but my friend’s words are wise and, ultimately, very humane. I imagine it will be a week of discussions and decisions. I’m hoping we make a few good ones.
Bringing this back around full circle, after my mother posed the “What if…” there’s a miracle and my father somehow recovers from Alzheimer’s question to me, I looked at her and suggested “I think he’ll find new hobbies and interests. And if not, I’ll know exactly what to buy him.”
Kristoffer Gair (who formerly wrote under the pseudonym Kage Alan) is the Detroit-based author of Honor Unbound, A Funny Thing Happened On The Way To My Sexual Orientation, Andy Stevenson Vs. The Lord Of The Loins, Gaylias: Operation Thunderspell, several short stories featured in anthologies (to be combined in a forthcoming book), the recently re-published novella Falling Awake, its sequel, Falling Awake II: Revenant and Falling Awake III: Requiem.
8 Responses to “And on the Topic of Quality of Life…”
January 14, 2013 at 10:45 am
That you can maintain such bittersweet objectivity never ceases to amaze me.
I empathize totally with your mom. To let go of the books is to let go of the comfort and familiarity of the past, and that is, for most of us, never an easy thing to do.
January 14, 2013 at 11:42 am
I think if she had nothing to put in place of the books, it wouldn’t occur to me to suggest finding a different home for them. But she really could use the space for what she does have that’s equally familiar to her. I’m just blown away that she’s still thinking “What if…” I guess I stopped.
Vastine Bondurant says:
January 14, 2013 at 11:22 am
Like Dorien, I know what your Mother is feeling. I, too, am one to never give up hope until there is just none left to cling to.
And, as far as their belongings. Hey, my daughter wasn’t going to let go my late son-in-law’s ‘trophy’ deer and boar heads of her husband’s, even though she’d never liked them. They were HIS. She finally relinquished them to a friend who promised to take care of them. lol.
January 14, 2013 at 11:45 am
I’m glad she’s still clinging to hope since I’ve taken a different stance on it. Better we have more preparedness than go through things all over again if we’re both sucker punched. Three years down with Alzheimer’s and seven left to go.
January 14, 2013 at 1:18 pm
My grandmother had a couch in her living room that was, well, “dated” (from the 1970′s). My aunt kept bugging her to get a new couch, but grandma absolutely refused. Why? Because my grandfather had upholstered that couch and it reminded her of him. Our comfort zone comes in all shapes and sizes and maybe even quantity.
January 14, 2013 at 1:37 pm
That’s actually really lovely! It was a reminder of his hands-on work. I can see her wanting to keep that around for that reason alone.
JP Adkins says:
January 14, 2013 at 1:35 pm
I am always intrigued by the thoughts your blog brings out, the conversations it starts, and the memories that are conjured up. May your mother have her wish or at least she never gives up hope.
January 14, 2013 at 1:39 pm
I’m not exactly known for depth when it comes to my blog posts. In fact, there are times I’m so shallow that it’s perceived as depth. The serious just seems to keep getting bounced my way lately and it’s not like I can avoid writing about it.
I forgot to mention something in the post. My grandmother asked my mother if she was keeping a journal about what we’re going through with dad. She said “Absolutely not. Why would I want to remember these things?” What she didn’t tell grandma is she figured I was blogging about them. lol She was right.