Life's Awful Curve

My last post, Dad;Reconnecting inspired some responses that merit not just a reply but an entire post.

In my original, I touched on my dad’s final years and his – our, mine and my wife and childrens’ – battle with dementia and my regrets over how badly I handled it.  In conversation with a couple of acquaintances I found that they also felt regrets over the way in which they dealt with parents suffering dementia.  A high school friend of mine, Susan, left a touching, heartfelt comment and our mutual high school friend, Craig left a kind and comforting response of his own. 

Susan wrote:  “My mom, like your dad, began suffering from dementia a very short time after my dad died. She was such a strong person that she lived too many years with it before finally succumbing. I, too, am filled with regret for the way I handled her illness. I, too, am not proud of the way I handled her situation. I don't have a lot of regrets in my life, but I wish I could have a do-over on that one.”

Craig’s response: “Never regret how you dealt with a parent's dementia. I deal with dementia on a daily basis. Some days I will see each stage of dementia - early silly confusion, one's undeniable fear and trepidation as they realize the harpoon is set, the early failings, the argumentative phase, the wandering phase, the incontinence phase, the placement phase. I no longer see the zombie/coma phase, as I do not do nursing homes any longer. There is no instruction booklet for the process. I see families struggling to 'do the right thing' neither knowing what that is or how to do it. That's because there are no rights and wrongs, strong players and inadequate players - we are all just regular folk shlepping though life who get thrown an awful curve-ball. You take your best swing! That's it. Neither of you did a bad job - there is no such thing. Remember too, that as you felt your inadequacies mount, as the disease progressed, the shell that personified your loved-one lack the insight and memory to either know or recall that they were treated badly. In fact they were not. When your fathers hug you at The Pearly Gates, neither will even mention it. If you apologize, "Poppa I'm sorry I let you down there at the end", your going to make him frown and then smile and wink at you and confess, "You did a great job - a hell-of-a-lot better than I did with my old man. So give us another hug." I will brook no more regret over this ugly, diabolical illness which is impossible to 'handle' well. 'Nuf said!”

In her response to Craig, Susan summed up my feelings, again better than I could express:  “Craig, you brought a tear to my eye with your kind comments! When we're young and in a different place in our lives, we make choices we wouldn't necessarily make later on. (I had a similar conversation with my daughter just a few weeks ago on choices made and possible regrets later.) I don't know how much I would have done differently if my parent was facing dementia today. I know there would be some things done differently, but you're right. We do the best we can at the time, with the knowledge and abilities we have at that time. I can't say I won't continue to have some regrets, but it helps to know I'm not alone when it comes to simply being human and making good decisions and not-so-good ones. Thanks Craig, and Paul, for helping me better understand that I'm not alone.”

As I read their comments again in writing this post the emotions welled up again.  I don’t always respond to comments, though I should, but theirs particularly warrant a response and this post is in part my response.  I’d already planned on writing a post on this topic and I even had some version of, “there’s no instruction book that covers this,” all ready to go but Craig beat me to it and said it all so much better than I could.  While he didn’t say as much, I’m certain that Craig’s daily encounters with dementia come through his work as a physician. 

I’m 58, about the age my dad was when he was starting to forget things and become flustered.  I’ve reached that point at which I ask myself, how will I age?  It’s a question that we baby boomers have to face.  And that question comes with its own myriad subset of questions.  Will we be self-sufficient?  Will we be physically able to take care of ourselves?  What will become of our mental faculties?  Will we be financially able?  One of the acquaintances that I spoke with told me that her husband has a real and tangible fear of the same dementia that plagued the aunt he had to care for.  In a comment to my post, Scott wrote; “I find myself getting a little lump in the throat whenever I do something that is a mental slip, thinking about how it must have been for him and wondering if it is something I'll be dealing with in the not so distant future.” 

And then there is the question that haunts those of us with children, making their way with families of their own; will we be a burden on our children?  After having difficulties with my maternal grandmother, my parents suggested to me that they would never be a burden.  Which of course begs its own question; how can you make that suggestion?  There’s the strong potential that the option will not be one that we can control; which is just the reason that I’ve not made that suggestion to my own children.  I do what I can to avoid that circumstance by keeping both physically and mentally active.  And while my future independence isn’t the motivation it is a hopeful byproduct that I keep in the back of my still able mind.

I have two wonderful children who’ve expressed that they would of course take care of my wife and me when we’re doddering.  They make that statement with the same certainty that they would have in saying the sun will rise in the morning and while I don’t doubt their sincerity and have every faith in their love for us I have to wonder if they realize the full import of the baggage that comes with a dependent parent.  Every generation, every young family potentially has to face the quandaries.  Dealing with everything from deciding whether or not to take the old boy out to dinner with the family, to is he going to be okay at home, to is he going to wander out of the house, to how in the hell do we take our family vacation which all boil down to the question of “how do we just have a normal family life?”   

With the large boomer generation transitioning into late middle and old age this shouldn’t be just a question within the domestic circle.  A big segment of this nation is going to be losing its collective marbles and we, those of us that are aging and our families, should be wondering how this nation is going to deal with it.  From the Alzheimer’s Association website are just a few of the many sobering facts:

·         5.4 million Americans are living with Alzheimer's disease.

·         One in eight older Americans has Alzheimer's disease.

·         Alzheimer's disease is the sixth-leading cause of death in the United States and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed.

·         More than 15 million Americans provide unpaid care valued at $210 billion for persons with Alzheimer's and other dementias. 

·         Payments for care are estimated to be $200 billion in the United States in 2012.

•        Today, 5.4 million Americans are living with Alzheimer’s disease – 5.2 million aged 65 and over, and 200,000 under the age of 65. By 2050, up to 16 million will have the disease.

•     Of Americans aged 65 and over, 1 in 8 has Alzheimer’s, and nearly half of people aged 85 and             

       older have the disease.

•     Another American develops Alzheimer’s disease every 68 seconds. In 2050, an American will develop the disease every 33 seconds.

This country has faced up to major crises in the past with large measures of success and some of these have included finding many cures.  On the other hand, as I’m reminded every time I fill up the tank, we’ve had a history of kicking the can down the road.  I suppose that I could transition this into a commentary about the debate over nationalized health care and the rising costs of health care.  I’ll leave that for another time and just keep hoping that one of the cans that we kick down the national road won’t be full of those lost marbles. 

Just this past week a co-worker’s mother had a heart attack that put her in hospice care.  The mother has been suffering from dementia for ten years now.  In conversation another co-worker commented that he couldn’t imagine what it would be like to have a loved one “not know who I am.”  I told him that I went through that for nearly 10 years myself and he sadly shook his head and allowed that he was sorry.  The woman whose mother is now in hospice said to me that there will be no heroic efforts from here on out; “It’s been 10 years now; its time.”  Of course I felt the same way when my father passed; hell it was past time.  And he would have agreed.  Had he been able to have a half day of lucidity and figured out a way to end it himself he would have.  I know I would; sit in front of the TV, watch the Three Stooges with a nice sedative or ten and a bottle of Maker’s Mark.  Yeah I know it would horrify some of the family and friends and the local Catholic prelate; “my son how can you disrespect God’s gift?”  Look I got an electric pizza cooker as a wedding gift but at a certain point it gave up the ghost and the pizzas came out half-baked and it was about time to toss it.  When my thought processes start coming out half-baked it’s time to realize that the gift is about wore out.  I don’t want to deal with 5 years of putting the can of shaving cream in the oven and a quart of milk in the toolbox; or worse.  

And so thank you to Susan and to Scott and those who I spoke with over the last week or so.  It was somewhat reassuring to know that there are others who went through the same experience of trying to do right and in the end feeling like the job got badly botched at times.  And thank you to Craig who reminded us with some of the most eloquent words that I’ve ever read that “…we are all just regular folk shlepping though life who get thrown an awful curve-ball. You take your best swing! That's it.”

And a final note:  Susan, Scott and Craig are three of my oldest friends.  I went to high school and junior college with Susan and Craig and we were best of friends who went our separate ways.  We reconnected through Facebook but have not yet reunited.  I’d say it’s time.  I met Scott after graduating college.  We spent some years sharing living quarters and some great memories, many that are lost in a fog of varied substances.  He was the best man at my wedding and we still get together at times, although not often enough.  They are three of the finest people that I’m proud to know. 

Comments are greatly appreciated and encouraged and may be left in the comments section below.  While I don’t always respond to them (and I admit to it being bad manners) I do read them.  Unrepentant spam will be deleted and sent to spam hell.