Category Archives: loss theory

What Alzheimer’s Disease Has Taught Me (so far)

I’ve been in long term health care for 15 years now.  I’ve worked with and cared for numerous individuals and families who have been touched by the heartbreaking disease known as Alzheimer’s.   There have even been a few of my own relatives who have lived with AD–few aunts and uncles.   Then, a couple years ago, my dad was diagnosed with Alzheimer’s-type dementia.

My knowledge base has grown and grown over the years I’ve worked in geriatric care.   More than most anyone, I am well trained and equipped on what to expect and how to handle the myriad of twists and turns that accompany AD.   Still, as anyone will tell you, when it’s *your* close family member who is part of the Alzheimer’s equation, all bets are off.   It’s impossible not to be emotionally invested in whatever happens on this journey.

Granted, I’m a pretty easy-going person.  I try to look for the positive and the lessons that can be found in any situation, no matter how hard, sad or devastating.  (I get this trait from my dad, I believe).  And while my dad is in the early stages of AD at the moment, I realize things can change quickly and that there is no more taking things for granted where he is concerned.

The Alzheimer’s Association has a wonderful online support forum filled with tons of people who either are caring for someone with AD or who are dealing with the disease in some way, shape or form.   I  recently was inspired to add to a great thread where forum posters list what they’ve learned from Alzheimer’s Disease.

Here are just a few of the lessons I’ve learned so far:

  • Many people with AD can still keep their sense of humor through most of the disease process. Looking for the humor in those not-so-great moments can be a life saver!
  • People will forget what you say and what you do for them, but they will never forget how you made them feel.
  • Hugs and kisses go a long way, especially when you don’t know what to say.
  • We’re a society that prides ourselves on our “intellect” and we are trained to live in our heads. Perhaps AD is here in part to teach us to live in and with our hearts more.

I wish this disease did not exist, but I continue to remain open to what it has to teach on an individual and collective level.   The lessons are always there, you just have to be open to finding them.

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Filed under advocacy, aging, dementia, loss theory, social work skills

Is Death More Taboo Than Sex?

It amazes me to think how far Western society has come in terms of medical advancement and technology.  Sometimes I question whether so much “advancement” is necessarily a good thing, but overall, there are a great deal of positives that come with our evolution in health and medical care.

Yet, for all the progress we have made, we’re often unable to face the one very real and unavoidable fact that no medical advancement can prevent indefinitely.

We can’t escape death and dying.  I don’t care who you are or what you do, the end result for each and every one of us is the exact same thing.

Why then, are so many afraid to talk  or even think about the subject of death and dying?   This palliative care nurse believes that death has become more of a taboo topic than sex.   I am inclined to agree.

Is it that we think by avoiding the subject, we’ll never have to deal with it?  If we run from death, we can escape it?  Deep down inside, we are all connected to one another because of this simple, democratizing truth:  we will all die someday.

(I’m full of sunshine, rainbows, and puppies today, aren’t I?) 😛

If we can start to recognize the ways that death binds us to all humanity, maybe we can overlook some of those trivial frustrations and annoyances that keep us from really appreciating the various people who make their way into our daily rounds.   More importantly, if we break the taboo grounds that seem to underlie conversations about aging, death and dying, we can live in a world that’s just a little more peaceful.

Acceptance instead of struggling.  Embracing rather than avoiding.  Looking toward the inevitable (and unknown) with a sense of tranquility as opposed to distress.

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Filed under aging, death and dying, loss theory, palliative care

An Identity Beyond The Dementia Diagnosis

Its a common malady in health care settings to think of a patient or client in terms of their disease or diagnosis.  Come to think of it, we all have a tendency to view people within a categorical lens; it’s what we’re taught to do.

Sometimes it seems like people would rather be diagnosed with any other disease than Alzheimer’s or dementia.  It is a devastating condition to live with, no doubt.   It can often be even more crushing for the family of the dementia patient.  One of the hardest things in the world to witness is your loved one fading away…and with Alzheimer’s/dementia, there are typically years of mental and cognitive decline that precede bodily or physical deterioration.   The person *looks* the same and *seems* the same on the surface, but their personality, language ability and memories are being torn away from them.   That’s a terrifying and sad thing to see happen in the people who mean a lot to us.

Still, a dementia diagnosis need not be the end of the world.

Just because your loved one can’t recall what they did five minutes earlier, doesn’t mean they don’t enjoy continuing to share and engage in their relationships.  Dementia can be an isolating disease, whether the individual lives in a long term care facility or in the community.   In the earlier stages, the person often is able to recognize that something is not right within them.   They notice some of the mental and cognitive  changes taking place.  Many people become embarrassed or ashamed by what is happening to them, and therefore begin to pull away from their family, friends,  and activities.  They don’t want anyone to perceive that they have a memory problem and they certainly don’t want to be identified solely by this degenerative and mind-robbing condition.

If you have a loved one with Alzheimer’s Disease or dementia,  one of the best things you can do for them is continue to include them in your life.   It doesn’t matter if you are repeating the same news over and over to them, or if they tell you the same stories from their childhood as though its the first time they shared it with you.    People with dementia just want to have someone they can talk with.   It means so much to be able to share in other people’s lives and keeping connected to the world outside sometimes helps the person with dementia to retain many  of their cognitive skills for a longer time than if they remained isolated.

And keep in mind: dementia may be a part of the person’s medical diagnosis, but it is not ALL of what makes them who they are and always were to you.

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Filed under alzheimer's disease, dementia, loss theory