What are you doing to prepare for the end?

No I am not speaking of wills and things that center around *that* end. I mean once we (the progressives) progress beyond the MCI stage, that will more or less be the end, at least in my opinion. My speech will be gone and odds are high that physical issues will become a more pervasive problem. But more than almost any of it, the memory. "Me".

So what have you done to prepare for that day/moment/whatever? in my case I am taking legal care of my wife/caregiver to derail any family BS, also since my aphasia is getting worse, its logical to assume normal avenues of speech will be beyond me, as will most if not all advanced forms of entertainment. So to prepare my wife and I are working out non-verbal methods of communication, I have cards printed up that can speak for me when I cannot speak for myself (explains who I am and what is wrong and most importantly, my wifes contact info), the house is slowly becoming baby-proofed (along with memory goes humility). I am making sure that I have plenty of brain-dead entertainment (anything from Nickelodeon is a good start), etc on tap, so when the day comes and I can't make a choice, any choice I make will be something mellow enough for me.

Stuff like that...but I want to know whats missing, what else can *I* the patient do to prepare for that day?

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  • For me, as a writer, it will be important for me to write a letter to each member of my family as well as friends to tell them what they mean to me and how my life was blessed by each of them, perhaps with a favorite photo of myself with them. This is something that I imagine people will read over and over again in the days, weeks and months after I am gone.

    I feel this way because I know how I felt when my niece "across the pond" sent me photos of my mother that I never met and her passport book. I clutched it to my chest and in a strange way felt closer to her than ever having something that belonged to her close to me - are there things that your loved ones would cherish - I suppose this might be laid out in your last will and testament. I found my birth family after 42 years of searching for them.

    What a brilliant and thoughtful planning strategy, Jeff for you and your wife to begin creating together. You have given me so much to think about.

  • Jeff,

    Although I have not yet set it into action, I, like you, have mentally begun to form methods of communication for my "vegetative" stage. Chief among them is something very similar to your cards idea. My primary problem is that even if I have my feelings, the typical problems I may be experiencing, the emotions I may want to convey, etc... all neatly aligned on these cards or whatever, how can I assure that I will still have the wherewithal to give some meaningful indication of which card is appropriate at the time. Even the simplest of systems seems as though it could be too complex for someone in lost the darkness of dementia.

    This is what I feel I must solve before the problem overwhelms the solution.

    Randy

  • jeffcobb -- One other thing you and your wife can do is read more about the power of acceptance. That's what helped me survive being a caregiver for my mother and my husband, both of whom had Alzheimer's. Your description of the preparations you have made so far, like for entertainment, suggest that you are already on the road to accepting what the future holds for you and your wife.

  • I am curious what I have said or written that would lead you to think I need help with acceptance...as far as I can tell (and my caregiver and VA shrink agrees) I am facing stuff head-on but if you see something else, please let me know. Actually I have always wanted to ask a seasoned caregiver why all books on Alzheimers or LBD or fill-in-the-blank are written to teach other caregivers...when what would be REALLY useful is if one were written for the patient going through this...its like the doctors don't know how to tell us what to expect but if there was anyone on the planet who knew the answer, its a caregiver thats been through it before. You hold the "secret" to the secret sauce. And until someone like you lets us in on it, we will continue to have to figure it all out for ourselves as we go...

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