Thursday, April 20, 2017

Has Your "Long Good-by" Begun?

FYI:  If you or a loved one is dealing with a diagnosis of early-onset dementia, consider visiting this website, run by a guy who was diagnosed at (yikes!) 55 years old.

Have you or a loved one recently been diagnosed with dementia, or with short-term memory loss?

Or do you suspect that you might have that condition, or that a loved one might have it?  Are you afraid of what such a diagnosis will mean for you and your family?

I've written a lot about dementia and Alzheimer's in their later stages, but I haven't spent a lot of time exploring issues that come about during the earliest of stages, which is the diagnosis.

And by diagnosis, let's be clear right off the bat:  There is no official, sure-fire, absolute diagnosis of Alzheimer's disease.  Alzheimer's is the most common form of dementia, with dementia being the most common result of short-term memory loss.  And short-term memory loss doesn't necessarily develop into Alzheimer's, although it usually is the first rung on the dementia ladder.  Yet dementia can take years to develop into its most tragic expressions.  So if you or your loved one is facing a diagnosis of short-term memory loss, it's not exactly the end of the world as you know it.  At least, not yet.

Yet, at the same time, yeah - it's pretty close to the end of the world as you know it.  Sorry for being so blunt, but frankly, you already knew that, didn't you?  Besides, this is not a time for pussyfooting around the truth.  For one thing, if you are indeed on the road to dementia, you and your loved ones need to arm yourself with facts and a realistic assessment of your options, since things may rapidly change regarding your ability to conduct basic activities such as driving, making changes to your legal documents, and preparing your personal finances for the exceptionally high monetary costs of your future care.

However, just as this is not a time for ambivalence and rose-colored glasses, it's not a time for panic, either.  For one thing, panic rarely accomplishes anything, regardless of the situation.  And with regards to your diagnosis, there's little you can do medically to change what this diagnosis means.  There are no surgeries to consider, no pills to reverse the damage being done to your memory, no chemotherapy options like there might be with cancer, nor new diets to adopt like there might be with diabetes.  No known cures exist for short-term memory loss, dementia, or any of dementia's forms, like Alzheimer's.  So don't waste your time - and your money - dabbling with home remedies, natural supplements, or any of the other gimmicks out there being peddled to people who are desperate.

And don't feel guilty.  As far as we know, there's nothing you could have done medically to prevent dementia, so there's no use blaming yourself for having it.  And there's nothing you can can do medically right now to even minimize your dementia.  Dementia happens for reasons we're not sure of.  But one thing we know is that the length of time you have remaining as a fully-functioning adult will now be growing shorter by the day.  Your memory's functionality has maxed out through no fault of your own.  Your capabilities for reasoning, comprehension, logic, and alertness will be no greater than they are today.  Which means your mental resources need to be deployed smartly right now.  Not because you've suddenly begun your journey down what we call "the long good-by."  But because there's little point being morose about it.  At least, not yet.

Believe me, perhaps the time won't come for you, but the time will come for your family when the journey you have now begun will become a tortuous burden.  But that's still a long way off, and by then, you likely won't be aware of how bad you've become.  I've heard of one dementia patient who had three years between her diagnosis until her death, but most dementia patients I know have a journey of six to ten years - or more.  In your case, it's probably early days yet, and dementia is something for which you and your loved ones are going to have to pace yourselves.

For example, you still have time to travel, and work through a "bucket list," if you have one of those.  However, from now on, regardless of whether you're traveling to Paris, France, or the nearest grocery store, you cannot go alone.

Don't fight me on this one.  We found out my Dad had dementia when what should have been a half-hour trip to the grocery store turned into a several-hour ordeal, trying to track him down, calling the police and fire departments for word of any senior citizen in a car crash, driving around to all the grocery stores we used to frequent, only to have a kind-hearted employee from a store miles from our home call and put Dad on the line.  The employee had noticed Dad looked a bit disoriented in their store, and when she approached him to ask if he was OK, Dad managed to remember his home phone number (but not that he had a cell phone with him that he could have used).  That was a horrible evening for us - well, except for Dad, who didn't remember any of it, and wondered why I showed up at the grocery store to help bring him home.

Dad continued to drive for the next six years or so - but never, ever by himself.  We let him walk his faithful collie dog around the neighborhood for a few more months, but I was always a block behind them, making sure Dad found his way home.  After a while, Dad lost interest in walking the dog (a typical mark of dementia), and then not long after that, the pure-bred collie's advanced age required us to put him to sleep.  We'd show Dad photos of his beloved dog, and he said he remembered him, but we weren't always so sure he really did.

We allowed Dad to drive his minivan to familiar locations within about a one-mile radius of his long-time home.  And, frankly, considering how poorly so many people drive these days, his driving was certainly no worse than anybody else's.  His reaction times seemed spot-on, and for a long while, he needed few reminders about where he was going or how to get there.  He'd often complain that we wouldn't let him drive alone, but we'd simply say we wanted to keep him company.

What kept Dad's driving instincts so sharp, even as his other memory issues were in obvious decline, likely involved the years he spent driving around as a sales manager for a concrete construction supply company.  He drove to visit customers all over Texas and the Northeastern United States by himself and only ever had one accident - when he was driving all of us, when my brother and I were kids, down to Houston - and even then, the damage to our car didn't prevent us from driving out the trip in full and returning home.

However, if you or your loved one hasn't logged the extensive time behind the wheel that my Dad did, your driving days might be coming to an end fairly quickly.  And if that's the case, it's for your own good, as well as for the good of all the rest of us out on the open road.  After all, driving isn't just about you, but everybody else, too.

And about those bucket lists:  How many of those unfinished events and fun times will you remember next year?  In two years?  I understand the whole sense of accomplishment behind the bucket list thing, but frankly, trying to do things and visit places before you'll forget you've done them or been seems more a waste of time and money than a fulfillment of your life's dreams.  Right now, is what's important something you haven't yet prioritized?  How important are those things on your bucket list, if you haven't already done them?  Do you really need that sense of accomplishment before you forget all that you've accomplished?  Is the existential satisfaction really worth it?

After all, time is working against you here.  Remember?  You've only got a limited amount of time remaining for you to build memories - not for yourself, but for your loved ones!  If dementia takes as ugly a course as it does for most of its victims, your loved ones are going to have many awful things about your eventual condition seared into their own short-term memories of you.  Wouldn't you like to spend the quality time you've got left helping them cultivate happier, more positive remembrances of you?  Simple stuff, like the foods you cook well, or of the stories you tell, or the crafts you enjoy?  Not new stuff, but the same stuff that you don't need to still learn, and risk the frustration of not learning or experiencing as fully as you might otherwise desire?

It's the time with your loved ones that they'll likely remember the fondest.  It's who you were in the ordinary, every-day life that they knew you to live.  How you act in the present, in the familiar, in the real; not the artificial of vacations to places that are more exotic than natural.

Yes, there is the argument that the pursuit of a bucket list at this point would be an act of defiance in the face of dementia's impending doom.  And if you're independently wealthy, perhaps it doesn't matter what you spend your money on now.  But frankly, considering the many unknowns about dementia and dementia care, the wiser person would conserve their financial resources now, instead of spending them on trips you won't remember for much longer.

I'm not trying to be cruel here; just honest.

Granted, if your life up until now has been all about the pursuit of bucket-list-type things, then maybe I'm raining on your final parade.  But I have yet to talk with any loved ones of a dementia patient who reminisce about things that have happened recently.  They reminisce about the loved ones as they knew them "back in the day."

It's an ironic twist on the "short-term memory" condition, a state of mind which can seem so confounding.  Indeed, short-term doesn't just mean that you can't remember things for very long.  It's also that you can't remember things that happened only a short while ago.  And as dementia continues to take its toll, that "term" creeps ever longer, with your ability to remember the past extending not by seconds, or hours, or days, or months, but years.  Decades.

In fact, as long as I'm being blunt, let's go ahead and face more reality:  For better or worse, your family will eventually be able to identify the memory period of your life in which your brain is functioning, and it won't be the present-day.  One of the hospice nurses caring for my father told us that actually, at that point, the patient is mostly unaware that they have any sort of dementia, and I like to think that she is correct, for the patient's sake.  You see, dementia patients give many clues about the period of their former life in which they're now living; the job they may have had then, the home or city in which they used to live, the people who were still alive then.  With my Dad, we could track his decline by the homes he longed to be in.  He seemed fairly comfortable in his Texas home, where he'd lived for 30 years, for quite a while into his dementia journey.  Then suddenly, his memory seemed to completely skip the 13 years we'd lived in upstate New York.  It went back to an old address in Brooklyn, then to the address before that, and then even to the address where his family lived before he entered school.

But let's not get that far ahead of ourselves - or that far behind.  After all, if you're still in shock from receiving your recent diagnosis, you're likely struggling with identifying the things you need to get done before, ...well, they can't get done anymore.

Speaking of finances, in case you're now thinking of shifting all of your assets into somebody else's name, your lawyer may sign off on those changes, since you're still relatively "of sound mind."  But don't drag your feet, because nobody knows the point at which your lawyer might actually say you're mentally incapable of things like wills, financial reallocations, and property settlements.  If you're thinking of trying to hide your assets by placing them in other peoples' names, in case you need to go on Medicaid in the future; forget it.  When someone applies for Medicaid, the government goes back about seven years, and even longer, tracking the movement of your assets, and significant changes to your estate or financial portfolio will be nothing but red flags for them.

With the money that you have, instead of splurging on a bucket list, perhaps you should consider remodeling your home to make it handicapped-accessible.  If you've only lived in your current home for a short time - say, five years or less - then it might not make much difference if you decide to move out of it.  But the thing about short-term memory care is that the longest memories will last the longest, and staying put in a familiar home will benefit you and your family in the long run.  Although you might not have any mobility problems right now - and maybe not ever, memory loss can impact physical mobility, and for many dementia patients, keeping one's balance becomes a problem at some point.  So if you can afford it, widen your doorways to accommodate wheelchairs, and retrofit at least one bathroom with fixtures suitable for adults who need somebody to help them with bathing and attending to the toilet.  If your bedroom is upstairs, try to create a sleeping space downstairs now, so maybe you can develop some familiarity with it.  If your backyard isn't fenced in, fence it in, since dementia patients tend to wander.

Hey, even if being placed in a memory-care facility is in your future, that future is still likely several years away at the earliest.  That means you'll still need to enjoy your current environment as much as possible - yet as prudently as possible, too.

If you're a pack-rat, begin to de-clutter now.  Clutter will only confuse you later on, and possibly become dangerous trip hazards.  Save photos and keepsakes you frequently look at and enjoy; chances are they'll be the things your loved ones use to try and entertain you years from now.  Throw away items that hold bad memories for you.  Keep your current technology, and don't worry about buying new televisions or computers from now on, because you'll risk unnecessarily confusing yourself.  The idea is to develop as light, bright, easy, safe, and encouraging a physical environment as possible.

I hope you weren't reading this to find some cheerful nugget of comfort after your otherwise horrific diagnosis.  I'm sorry if I've further discouraged you by laying bare the reality you'll likely be facing.  But I've been there with my Dad, and with his sister.  There is no helpful way to positively spin the specter of dementia.  There's also no legitimate pathway to determining what dementia will have in store for you specifically, since dementia varies by as many degrees as their are individual people.  Some patients end up having a relatively peaceful journey through memory loss, while others... well, let's just say that there's enough heartbreak to go around.

Many end-of-life illnesses have a way of clarifying the aspects of life we most cherish, and these next few months and years of your journey through memory loss will undoubtedly be a clarifying experience - although, unfortunately, probably not for you.  You will likely become less and less aware of what is going on to you and around you, which as the hospice nurse told me, may be the one blessing in all this.  Meanwhile, your loved ones will be forced to assume more and more of your care, and there won't be anything you can do about it.  Stronger families, obviously, fare better during crises like these than dysfunctional or scattered families.  Your close friends, your faith community, and even your neighbors will likely play intimate roles that you will never see.

Yet through it all, our response to human tragedy both affirms our commitment to life, and our resolve to honor those who, for whatever reason, lack the ability to participate in it as fully as we would otherwise desire.  We effortlessly enjoy our human experience when things are fun, or happy, or easy.  But when life turns arduous, melancholy, and painful, we tend to show what we're really made of.

Maybe that's a challenge you and your family would prefer not to pursue!  But it's happened to you, and there's nothing you or anybody else can do to change it.

It's bleak, and confounding, and it seems so unfair.  I know.  It happened to my family and me, too.  And we're here today, on the other side of the dementia journeys we took with my Dad and my aunt.  And we're certainly not weaker for those experiences.  I think we still have questions, and we're still emotionally tired, but we did what we could with the resources we had, and I think we honored our loved ones well.

Hopefully your family will be able to say the same.

Ready or not, your journey through your long good-by has begun.  Let it be as life-changing as it can be.

1 comment:

  1. Wow Brother, you can write! Having Alzheimer's it was difficult for me to read the whole thing, but I did it in sections. There is nothing there that is not true. Unfortunately the truth doesn't always feel good. Thank you for putting it out there... raw truth.


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