Conditions and Diseases

Life everlasting – is it a good thing?

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A recent NY Times article, On Dying After Your Time, poses many topics for discussion that must be addressed.  I knew before I even started to read the article that readers will have varying opinions on the matter of extending life beyond its appointed time to die.  These opinions will be based on ethics, biases, age of the reader, and religious beliefs, to be sure, but another factor that comes into play is the personal experience of each reader.

My father and my sister-in-law, both of whom have died from Alzheimer's in the past five years.
My father and my sister-in-law, both of whom have died from Alzheimer’s in the past five years.

If the reader has watched a loved one perilously balanced in limbo with a ravaged-by-disease body and/or mind, that reader might lean towards declaring that too much is being done to artificially prolong life.  In the past five years of my life, I have watched both my father and my sister-in-law die from Alzheimer’s.  Who they were at the end of their lives didn’t come close to resembling who they were pre-disease.  If the reader has had no experience with this aspect of life and death, that reader may feel more comfortable with the decision to throw every treatment possible at the patient with the goal of allowing that person to live as long as humanly – or scientifically – possible.

One of the issues presented in the NY Times article is the fact that as we live longer, there is an increase in the amount of chronic illnesses – a fact that certainly stands to reason.  “This rise in chronic illness should also give us pause about the idea, common to proponents of radical life extension, that we can slow aging in a way that leaves us in perfectly good health…The evolutionary theory of senescence [growing old; biological aging] can be stated as follows: while bodies are not designed to fail, neither are they designed for extended operation.”

The author of the NY Times article is an 83 year old man who closes out the piece by stating, “We are not, however, obliged to help the old become indefinitely older.  Indeed, our duty may be just the reverse: to let death have its day.”

If you haven’t yet formed an opinion on the matter of  life-extension at all costs – I encourage you to do so before it’s too late.  Life and death decisions are best made well in advance of the necessity of such decisions.

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Baby steps towards Alzheimer’s diagnosis

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Amyloid Scanning Protocols Fail to Get the Nod from CMS.

I like the above article and every single article that mentions some sort of steps moving towards diagnosis and treatment, even steps that are stunted right out of the block.

Stillness gets us no where.  Although limited, at least this article discusses some progress towards shutting down Alzheimer’s and other dementias.  During a time where very little good news is forthcoming relating to this disease, I’ll take anything – thank you very much.

Getting unstuck

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Living in the Present.

Fellow blogger, Kathy, has been struggling with the challenge of living her life without her mom who died from pancreatic cancer several years ago.  In the About section of her Blog, Kathy says: “On 12/4/2007 my dad said four words that would forever change my life. ‘Mom has pancreatic cancer.’  I lost my mom to this dreaded disease 348 days later.”

Learning how to live in the present while still mourning a death can be a very difficult matter.  Oftentimes we have the need to keep a person’s memory alive by reliving the journey that lead up to the death; ruminating over the whirlwind of activity after the death; and getting stuck right there – either not willing to go beyond that, or simply not having the ability to do so.

The following are very valuable statements: “You’ll get over the sadness eventually.  It’ll eventually hurt less.  But you have to get beyond where you are, because that’s what your mother would have wanted.”

Those are very true and worthwhile words, but if we’re not ready to hear them, they provide little benefit – at least initially.  Am I faulting the person making those statements when he or she did?  Absolutely not.  What I am saying, however, is that when we’re ready to truly hear those words, we will.  We’ll then be able to believe those words, and we’ll be able to practice those words.  It’s like having one of those moments that Oprah Winfrey calls, “An aha! moment.”  That’s what appears to have happened to Kathy.

Has this ever happened to you?  An acquaintance pours her heart out to you; asks for encouragement, advice, etc. and you provide compassion, suggestions, beautiful nuggets of advice, etc., and weeks, or months go by, wherein the acquaintance appears to be stuck in their dilemma, evidently ignoring your well-meaning words, and then – out of the blue – your friend calls you…(you fill in the blanks as to the situation – in this example, the person in need had been having relationship struggles)

Irene, you’ll never believe what just happened!  You know I’ve been in a funk because of my relationship challenges, right?  Just the other day I poured my heart out to someone on the bus and she suggested I do the following…

It turns out that this bus stranger told her exactly what you told her two months ago.  Are you offended?  Of course you are –  it’s happened to me and I’ve wanted to say, “Well duh – where have I heard that advice before?”  The key isn’t whose advice finally got through to her; the key is that the good advice finally got through to her.  Time for me to swallow my pride, tamp down my ego, and celebrate this friend’s good news.

English: Lightbulb. Linguistic teaching tool
Lightbulb Moment (Photo credit: Wikipedia)

Kathy – I celebrate with you that the right words came at the right time for you, and you are now able to take steps towards living in the present.  You’re learning how to celebrate your mother while still missing her greatly.  Three cheers for Denise for saying what she did when she did, and three cheers for you for having the ears, and a good and ready heart, to hear it.

Being a caregiver or being cared for: there’s really no escape hatch.

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In my post, President Obama says the “A” word: Alzheimer’s, I provided some Alzheimer’s statistics that focus on those who are predicted to be diagnosed with Alzheimer’s or other dementia in the years to come.  I also talked about caregiver statistics.

One statistic that really resonates with me is the following: a new caregiver is set into action every 33 seconds because someone will develop Alzheimer’s every 33 seconds.  In actuality, the stats are far greater than that.  Caregivers are “created” every second of the day because there are countless diseases requiring the assistance of someone just like you and me – an unpaid caregiver for a loved one.  I use the distinction of “unpaid” so as not to be confused with those who work as caregivers in the health care industry.

The following statement is attributed to former First Lady of the United States, Rosalynn Carter:

There are only four kinds of people in the world – those who have been caregivers,

those who are currently caregivers,

those who will be caregivers, and

those who will need caregivers.

I really don’t think there’s any way around it.  How about you?  Have you dodged the caregiver or being-cared-for bullet yet?

Treatment For Alzheimer’s Should Start Years Before Disease Sets In: NPR

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Treatment For Alzheimer’s Should Start Years Before Disease Sets In: NPR.

English: Logo of NPR News.
(Photo credit: Wikipedia)

I strongly encourage you to read the above article.  Too often physicians with insufficient training on elder-health issues dismiss the early signs of Alzheimer’s or other dementia as simply being age-related developments.  Doing so presents the risk of missing the small window of opportunity in which to treat cognitive issues early on, rather than when they have fully taken up residence in a patient.

Sure, there’s nothing yet that prevents or cures the disease, but being able to manage the symptoms early on certainly adds to the quality of life that both the patient, and their loved ones, seek to experience.

For those of you who have taken on the role of advocating for your loved one: when you escort your loved one with early memory loss or confusion to the doctor’s office, do not back down when he/she concludes the symptoms are to be expected due to advancing age.  NO!  Those symptoms could very well be indicative of disease-related dementia, OR the symptoms could be caused by medication side-effects (blood pressure medication, seizure medication and the like) or other medical conditions, such as urinary tract infection (UTI.)

It’s all about advocacy.  Do you go the easy route and take the doctor’s word for it, or do you push for worthwhile diagnostics to rule out any other serious or life-changing causes?

Baby Boomers’ Greatest Fear: Loss of Independence.

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A full-page newspaper ad for hearing aids, walkers, and safe bathtubs drew my attention the other morning:

“Seniors fear loss of independence more than death.”

My husband & I, still youngsters in our mid to late 50’s.

I agree with that catch phrase, even though the final act of death brings its own fear level centered around how it will occur or whether or not it will be painful.  But the loss of independence creates greater fear in me because of what it could mean:

  • perhaps having to move out of my private residence;
  • having my car keys taken away from me and being reliant on others for all of my transportation needs;
  • being told what to wear, what and when to eat, and when to go to bed;
  • not being able to bathe privately; reliant on someone else to make sure I get the job done right;
  • speaking of which, needing assistance on the toilet OR having an alternate means of evacuating my bowels – ugh!;
  • you name it – anything for which I am reliant, dependent, or beholden to someone else, scares me half to – well – death!

But maybe that’s just me.  Maybe I’m super sensitive to this issue because of my work with vulnerable adults in long-term care facilities.  So I asked friends, family, and others with whom I’m acquainted what stands out as their greatest fear in their Baby Boomer years.  Here is a summary of numerous responses to my query:

  • loss of independence which oftentimes involves chronic illness and/or dementia that drains the household finances;
  • loss of independence resultant from dementia as it seems to be  prevalent in so many families;
  • loss of independence thereby putting the burden of care on my spouse;
  • loss of mobility;
  • flatulence!

I couldn’t resist listing the last response because it made me laugh while contemplating a subject matter that brings little humor to the table.

While taking a walk with a neighbor the other day, he concurred with the above, also adding that if a person had unlimited finances, loss of independence wouldn’t hurt as much: use of your own private driver, 24/7 caregiving in your own home, the best Chef money could buy so you’re not relegated to institutional “cuisine.”  But you know, I’m not so sure that being able to afford all of the above would make me feel less dependent upon others than if I had a standard of living like most everyone else.  Sure, the amenities are better, but the underlying cause for needing those amenities remains the same – the inability to do things for myself.

Now that we’ve all agreed that living an independent life is very precious to us – I know we understand more clearly why our parents or other loved ones fought the aging process every step of the way.  I thought I was very empathetic to my father when he had to surrender his car keys.  But now that I’m a wee bit older than I was at that time, I’m thinking I had no inkling of what my father went through as little by little he lost the independence he had enjoyed for eighty-some years.

But how can we prepare so as to avoid a complete loss of independence?

Well, if you find the magic formula, please let us all know.  As for me and my household, I’m concentrating on the here and now in preparation for the future.  Here’s my contribution:

  • Exercise like your life depends upon it – because it does.  That doesn’t equate to running marathons or riding the Tour de France, rather, it’s participating in a variety of exercise options to which you know you can commit.  What works for you – not what everyone else is doing.
  • Enjoy the food you eat but don’t be addicted to it.  My husband and I have dessert every night and we use butter instead of margarine when we cook.  Those are luxuries that we decided to enjoy while making sure that the rest of our diet is balanced and more healthy than not.
  • Speaking of balanced, we love our wine, so nightly, we enjoy a glass during those post-workday (and post-exercise) moments while we catch up on our respective days.  Oh, and we also enjoy another glass as it goes so wonderfully with dinner, don’t you think?
  • Use your brain in ways that you don’t use it while at work.  There’s still no fool-proof method of preventing Alzheimer’s or other dementia, but you’ll feel better about yourself if you continue to challenge what you know – and what you don’t know.
  • Seek peace amongst the chaos.  In my article, Where do you find peace?, I explore both how to find peace, and how to keep that peace from slipping away.  Rather than repeat what I previously said, I hope you’ll find time to read my “peaceful” article.

Now it’s your turn.  What are you doing to avoid what many of us fear the most?  I know many Baby Boomers would benefit from hearing what you have to say.  We’re all in this together – regardless of how far from each other we live – so let’s work together towards attaining the goal of remaining independent as long as we possibly can.

Life’s final deadline.

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In the past year, I have lost two coworkers to cancer.  Just recently another coworker left his job due to – you guessed it, cancer – so he could spend what remaining time he has with his family. These wonderful people were given a death sentence.  They had a head’s up as to when their life’s end/deadline would occur.

Because I care for these people, I’ve been grieving and pondering what their remaining days and weeks were like.

What does one do when they leave their doctor’s office after receiving a fatal prognosis and a guesstimate of how much time remains for them?  Of course the initial news floors them and their emotions run wild with rawness, sadness, fear, and maybe even extreme anger.  But then they get home, hopefully surrounded by at least one loved one, and…then what?

Scrabble game in final stages
Scrabble game in final stages (Photo credit: Wikipedia)

I know much discussion will ensue of an emotional, practical, and perhaps even legal manner.  That goes without saying.

But do you then get out your bucket list and see if any remaining items can be checked off before time runs out?

Or how about a game of Scrabble?  Does that seem too mundane and unimportant in light of life’s waning hours?

I’m not trying to be cavalier about this matter and I hope I’m not coming off as insensitive.  I’m really troubled by even thinking about having such a prognosis and filling out my remaining days in a valuable way.  And again, I’m thinking about my coworkers’ final days and wondering what those days were like for these stellar people.  How did they manage?

Personally, I have a very realistic outlook on death – it’s certainly inevitable.  I’ve accepted the fact that no one can escape it.  And of course I have my preferences on the manner in which I die.  For example, if I’m fortunate, I’ll follow in my mother’s footsteps when back on September 24th, 1994, she went to bed none the worse for wear, and never woke up again.   Since no autopsy was done, we don’t know the actual cause of death but on this my family can agree – if we have the choice, we’d like to be taken by surprise – in as pain free a manner as possible.  If I’ve left no statements unsaid, no deeds left undone, I’d rather not have a calendar in front of me crossing out each remaining day in my life.

How would I fill my days if, like my coworkers, I’m given a death sentence of a finite period of time?

I don’t have the answer, so if by chance you’ve been part of life’s final deadline with a loved one or close friend, what proved valuable to you and your loved one?  How did you manage not to think of the remaining time every minute of every day?

In short – how did you survive the process?