Dying with Dignity and Alzheimer’s

Recently a friend of ours passed away.  She did so at home, with her husband and loved ones by her side.  She died peacefully and the way she wanted.  While she didn’t die of Alzheimer’s her death prompted me to think about the whole Dying with Dignity debate.

I truly support the idea of dying with dignity.  Upon receiving a diagnosis of a terminal illness, I feel that the victim of the disease should be the one who decides when his or her quality of life is not what they want it to be.  Having said that, what about Alzheimer’s patients?

If discussion is made (long before it’s needed) about what a person wants for their end of life, then all avenues should be discussed.  Cancer, ALS (Amyotrophic lateral sclerosis often referred to as Lou Gehrig’s Disease), Alzheimer’s, Stroke etc – they all need to be addressed for a myriad of reasons.  First and foremost because the person suffering the affliction may become incapacitated and therefore unable to make those decisions when the time comes.  Which brings me to Alzheimer’s.

Unless it is discussed at time of “probable” diagnosis of Alzheimer’s or years before, if it’s not discussed who would make the decision when is the right time to die with dignity in that patient?  There are so many stages of Alzheimer’s with each getting worse as the disease progresses.  When is a good time to end one’s life with Alzheimer’s?

An Alzheimer’s victim isn’t “sick” per say, they have a disease that will ultimately lead them to their demise, but it doesn’t cause any illness or physical pain.  There is a lot of emotional pain, though, especially in the beginning; when the victim is given the heinous diagnosis and is still cognitive enough to understand it.  The emotional pain is almost enough for anyone to want to end their life at that point…but their body is still relatively healthy.   When Alzheimer’s usually strikes, it is in the elderly who probably have a few, if not numerous, health problems.  But when it strikes someone younger, say in Gaye’s case (from my book “Bleeding Hearts”), the young body keeps living as if nothing is wrong.  It’s not until closer to the end of the disease progression that they succumb to an illness that leads to their death.

So, when stricken with Alzheimer’s, when is it an appropriate time to ask for assistance in ending the battle?  How does one help to put an end to a seemingly healthy human being who’s only plight is the dementia brought on by the Alzheimer’s?  I don’t profess to have the answer to that.  But I do know what I would want for myself.

If given a diagnosis of terminal cancer (or anything like that) I would make it clear that until I am incapacitated, I will make the decision myself.  I would determine that with my quality of life and the pain I am experiencing.  If I were to be suddenly debilitated due to an accident, stroke, etc…I trust my family will know my desires (my family have all been versed in my wants) and make sure that my death would be timely.  But I have yet to discuss with my family what to do if I were to be stricken with Alzheimer’s.

I have decided, that for me, if I am ever diagnosed with Alzheimer’s that as soon as I have forgotten who my beautiful children are by name or by face that I would be ready to leave this world.  I know that sounds a bit soon, but after witnessing what I have with my husband and his beloved, Gaye, I stand firm in my decision.  The pain of not knowing my own children hurts me so deeply as I even type the words, is enough for me to want to leave this world behind.  But my decision isn’t based entirely on my own pain, but the pain of my children.

You see, I would never want them to watch me deteriorate into some unrecognizable shell of the mother who loved them with a fierceness that is unrivaled (unless by another mother).  I would want to end the suffering that started the day the diagnosis echoed in their minds and hearts.  I would want to die with the dignity given to me the day I became their mother so it is that mom that they remember and hold in their hearts forever, not the shell who doesn’t know them.

Dying with Dignity, it’s not cut and dry.  It’s a discussion that needs to happen, with and for everyone.  I hope to help start this conversation for those who haven’t even given it a thought…especially if one is stricken with the abominable disease of Alzheimer’s.



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