This blog is about Lewy Body Dementia from the perspective of two fellows that have it. Think: Beavis and Butthead on dementia.
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Serving up the snarky side of dementia since 2018
When the time comes...
If caring for my parents during their time with dementia taught me anything, it taught me the importance of having a plan in place for how you want to live your final days weeks, or months. A time when many dementia patients may be totally unable to communicate their wishes, needs, pains, longings.... Without that plan you may suffer needlessly, be subjected to tests and procedures that will add nothing to the quality or longevity of your life, and your LO/caregivers will be placed in an impossible situation trying to make decisions for your care and comfort based on what is medically best for you and what they “think” you would have wanted were you able to communicate your wishes, leaving them to second guess every decision, every move they made til your demise for the rest of their lives. Your physician will be forced to use his/her best judgement without ever knowing your wishes.
As for me, I’ve been giving the situation some thought for quite a while now and have come up with a short but, I believe, very important, list of things I would like to have carried out when the end is near. I hope to continue to reconsider this list, add to it and remove items as the need arises because, let’s face it, even in dementia, life is never static. It constantly evolves and requires new solutions for new problems. I’ve shared this list with those closest to me, not an easy conversation to have, but one that must be had.
So, without further ado, here is my list as it stands today. Undoubtedly it will be at least slightly different in the coming months:
1. When it appears my end is in sight I would like a DNR signed. By me if I’m mentally capable, by my heath care surrogate/power of attorney if not. I want them to understand, they are simply signing for my wishes, they should not feel guilty about doing so
2. Stop all drugs that aren’t intimately involved in keeping me alive or alleviating pain such as any dementia medications I may be taking (Namendia, Aricept, etc...), drugs for hypertension, lipidema, etc... They probably aren’t going to be doing much to improve the quality of my life at that point and odds are I will have started to reject taking them anyway. Why force the issue?
3. Control my pain! Although I may appear to be unaware of my surroundings or those who care for me, experience has taught me that these patients feel the agony of pain right up to the end. Make things easier for me and you as you watch me walk toward the light. I promise you I won’t become addicted. And even if I do, the ultimate sobering will be here soon enough.
4. Hospitalizations, X-rays, and testing only if absolutely necessary for an accuse situation that can be corrected to make my passing more comfortable. I don’t want to be put through a bunch of poking and prodding that will ultimately lead to nowhere.
5. Please do not try to place me in social situations such as special signings, poetry readings, “remember whens”, because “it will improve my spirits “. No, it won’t. I promise you, it will only irritate me and make my last days that much more unpleasant.
6. Leave my head and face alone! I have always hated having my head and face patted stroked or rubbed. Same with my ears. I know it seems comforting but, for me at least, it is not.
So, there you have it. My “as the end draws near” list of things I want done. At least as it stands now. To the dementia patients out there, have you given this any thought? Do you have a list of your own? Would you be willing to share? To the caregivers. How do you feel about this? Is it too callous? Is it being thoughtful and taking the onus off you? What are your feelings? Please weigh in.