8. Windows

One of the things I neglected to mention in my last post was the concept of a window. There will be many windows. One  window is the small block of time when you know you’re ready for the end, and before you’re too far gone to make the decision to end things. That is a terrifying concept in what promises to be a long series of terrifying concepts. Hard decision after hard decision. We’re only months into this process and already we’re constantly barraged with the need to evaluate when these many different windows might need to be explored. The care team needs to be assembled, and all legal forms (Durable Power of Attorney, documented medical wishes, wills, trusts, etc) need to be assembled and verified to be sure they are up to snuff (no pun intended but I’m happy it’s there!). If you’re going to do VSED, the hospice needs to be standing by, and if you’re going by another means, everything needs to be in order there as well.

This end of life window is obviously the biggie. Only I am qualified to broach this with my family and support team. This takes a tremendous amount of self analysis and bravery. Joan, from the previous post, made her decision after one final wonderful vacation. She chose to go out on a high note. That sounds emphatically right to me. Her partner, Fran, had to take a hot minute to accept that. In her mind, Joan wasn’t ready - and she had to remember her role in this process, which was to support Joan when she made that fateful decision. I absolutely hate that I will be forcing that on my family. (It doesn’t even matter, at this point, what the choice of death methodology is - the window concept is the same. I can’t blame this on the government or other institutions that inflict their antiquated moral codes on us.) In order for this to work well, my family (or care team) and I have to be on the same page, no matter how difficult that might be. If I’m electing to do VSED, I need a committed group who will stand by me and help me pass in comfort. If I’m flying to Switzerland, someone should certainly plan to come with me, and obviously, as I said,  all the details need to be established well in advance. Again, this is not the time for pushback. While others can have wishes, my opinion is the only thing that matters, and everyone around me needs to trust that. My autonomy in this needs to be sacrosanct. This all needs to be planned well before the window is even in sight. My desires will be well documented and discussed and agreed to far in advance. Nobody can say how long the window will be open. So there is an element of haste needed. The time for contemplation has long passed.

There is another window that can open, but only for those who wish it. I know I do. That’s the perfect window to throw the final party! The celebration of life, to me, is far better than a funeral. I will not know how well attended my funeral would be because… I’ll be dead. Of course a show of support to my family after I pass is a great thing, but I’d rather people come to me, while I still can appreciate it, and throw a fete in honor of my life. Again, the window is small (albeit not quite as small as the death plan window). Much as I’d appreciate a party today, if I live (and I hope I do) as myself for many more years, that party becomes something very different. So, when you get the invitation to my final blast, I really hope you come!

Then there’s the Do I need in home or residential care? window. Because of the commonality of transitional care facilities (My father and step-mother live in one that’s beautiful, and they love it) it’s not a hugely difficult choice, but it is a super expensive choice when you don’t really need it. I looked at one near me that didn’t even have a memory care unit, and it was roughly $400,000 to move in (with 90% returned upon your departure from the facility (however that might occur, I suppose), and (and this is the kicker) $3,000-$5,000 per month. Now, that includes maintenance, services, a few meals a week, cable, electric, etc., but the largest residence is around 1300 square feet, which is less than half of what we live in now. We could for sure downsize, but 5K for 1300 sqft seems excessive. Joan and Fran lived in this place  and found a wonderful community of supportive folks. This window requires a lot of forethought as well. In many of the better communities, there’s a long waiting list - often costing money to join. So you need to figure out which place, and where. You need to sign up, and potentially put money down. And at some point, when you’re accepted, you need to sell your home and move.

With all that said, I believe my end of life window opens wide when I have to consider a memory care unit. I could manage a retirement community - for the community, but my mother passed in a memory care unit, and I found it miserable. I don’t want that. If I must have care beyond what my team is capable of doing, I will accept in-home care, and my home is ideally laid out for that. 

But here’s the conundrum I struggle with. Many years ago, my paternal grandmother descended into a vegetative state. I do not know the specifics of her illness, I just know she was gone. She sat all day in a wheelchair, unaware of her surroundings. (I may be embellishing some of this - this is an old memory and might not be fully accurate.) What I do know is that the doctors gave her a short time to live, and she was put on reduced medications as per her DNR. She lived for years in that state. And it made me wonder about what is actually going on in the mind of those individuals who are so far removed from this world but yet cling to life. Is it a continuous party? What is the concept of the passage of time? (For the religious) are they seeing their god(s)? Are they watching Hendrix jam with Miles? Hiking in British Columbia or the Swiss Alps? Swimming in the clear blue waters of Hawaii? Or is it the bleak existence that we see from the outside? I just don’t know, and I don’t think anybody really does. I do know that an animal knows when it’s time, and goes off to a corner and releases its soul. Why do we cling to life so, even when it seems so terrible? And those thoughts, which have frittered around my mind for years, really mess with my ability to come up with a cogent plan. Could the impulse to end what appears to be suffering be one that denies the beauty of a complete internal existence? I don’t have an answer to that, but even so, I’m pretty certain I know what my choice is going to be.

All these windows are contingent on one thing. And it’s something I’m struggling to manage even at this very early point in my journey. Not everything stupid, disorganized or forgetful that I do is because of Alzheimer’s. You don’t want to forget your car keys one day and immediately fly to Zurich. But when you start to forget your life, that’s when you really think about cranking those windows open. And before you do that, you need to know (as does your team) what those windows are going to look out on.