37: Crosspost

As regular readers know, I’m also writing (thanks to the future daughter-in-law) a project called Storyworth - in which I’m given a question each week to answer - all towards the creation of a bound memoir. Today’s post will be the first that I’ve written for that project that feels like it should be here on the blog as well. The question (penned by Wendy per my request for input from family) was this: Chances are that you will miss out on some things in the future. What gives you the greatest pause or angst when you consider dying or not being able to remember things/people/places? Below is a slightly edited (for context) copy of what’s going to be in that volume.

It’s an interesting concept to think about. The Question “what will be upsetting that I can’t remember?” is unanswerable because, clearly, I won’t remember what I don’t remember. I think I have lived a rich and full life - I’ve travelled the world, raised a family, been a teacher and generally done as much good as I could, without causing much harm (I hope). I’ve read great books, listened to great music, seen plays and other theater, been an emotional support pillar for friends and family in crisis, and laughed a lot. I’ve poured myself into my blog and storyworth project so that I have a chance to be remembered - and in doing so have opened a channel to retaining (or being told) my own memories. This has been hugely important to me as I do realize that even if I’ve got the option to choose my own end, I will be doing so as someone who might not remember a lot of his past.

I can’t say that pre-diagnosis, when I thought about my own demise, I considered memories. They were always just going to be there. I’d know who I was, where I was and who was around me. It wasn’t even up for consideration. Now I dread thinking that this might not be the case. I don’t know what that looks like - I have no idea what the void that must exist (if it’s even a void at all) in the absence of memory is. I do know I will have to make important decisions for myself bereft of that knowledge. I’m, in general, OK with that concept. I wish it wasn’t so - but it is. So I have angst, to answer the question, that if I am forced to fade all the way, I’ll be unaware of who I am or was. I’ll be unaware of the love I’ve had for people, and they for me. I’ll have to be told who people are, and why they are around - or perhaps even worse - I’ll have only a vague memory of someone who was once really dear to me.

Wendy and I each have very different relationships with our memories. Tangible items hold value for her because of the images they bring up relating to her past. She’s got boxes of stuff down in the basement including items of clothing that our kids wore, old high (and middle) school notebooks (her’s and the boy’s) and other similar items. I don’t really care much about that for myself. One thing that she and I agree on about this though, is the importance of the photographic record. (Sometimes I think people are out of control with photos now, with a high grade camera attached to their person at all times and no cost “developing” access - but that’s a rather benign issue overall.) I do rue the loss of physical photo albums - the effort put into creating a document (of sorts) to memorialize a time or experience was a valuable one - far more valuable, I think, than a scroll through a phone or computer screen. Wendy and I have committed to putting together albums of our life together, our travels, our family and other things. They will eventually be essential in maintaining memory and understanding of self.

On the other hand, music, as you may have guessed, brings back memories to me all the time - in many cases I can remember where I bought an album, or the process that led me to liking one. Many studies have been done on the effects of music on patients with dementia, and I have no doubt that this positive practice will hold true for me. I’m already using music as a way to keep me engaged and to hopefully stimulate my brain. The thought of losing my “place” with music is one that causes me great emotional pain. I will leave behind one of the (I think) world’s great music collections, all perfectly catalogued on a redundant backup hard drive. Today, as I write this, There are nearly 447,000 songs taking up almost 5 terabytes of space. I could listen to the first track (Miami Planet Rock, on A.P.C. Dance) to the last (Scene 7: The Another Appearance In A Commercial Radio, on Momentary Fame, by 9:30 Collective) in 1,610 days (that’s 41/2 years) if I didn’t stop. In between those titles are jazz, classical, funk, disco, rock, folk, ambient, country, comedy, blues, world music and soul albums - both great and terrible. I get rid of nothing! Drive space is too cheap. One of my most fervent hopes is that this music will eventually bring joy and solace to my wife, children and grandchildren (and any other family members who need that solace), as well as become a rock for me to grasp onto as I drift away.

I dread the day I can no longer drive, cook, or care for myself. That I become completely reliant on others for my basic existence. As mentioned in the last post, I will probably have started the process of ending my time on earth by that point. (Not necessarily the driving - I could get past that). This doesn’t mean I think that I will naturally die soon, it’s just that in order to do VSED properly, you need to be completely lucid, which means (say it with me:) giving up a little bit of good time in order to not have a lot of bad time. This is a terrible thing to ask of yourself and your care team. But the question on the docket here is what do I have angst about - and this is, indeed, something I have angst about. Finding the correct timing - not jumping right into death is going to be an incredibly complicated thing. There’s so very much at stake. Even now, I am often considering whether my (for example) forgetting something is Alzheimer’s related or just plain old forgetfulness. I was sometimes forgetful before I got diagnosed, I must remember. But at some point I fear for the decision I will have to make.

I know that I don’t want to be “scary demented grandpa” to my grandchildren. It is not a good feeling to think about them being afraid to visit me, or even worse, unwilling. I have a great relationship with my one grandson and expect to have the same with the rest of the brood when he or she (or they) are born. My grandfather was a super important figure in my life growing up, and I rue the thought that I may not be the same to the next generation. I’m a fun guy and I enjoy goading the little ones. I view it as my job to corrupt them in small, insignificant ways. It’s my job to share with them my loves and interests, in hopes that some of them may, someday, become their own loves and interests. And I want to be there, and cognizant, when they start to play an instrument, perform in a play, write a story or (even though these are not my own loves) participate in an athletic contest. I want to be trusted to take a child out for ice cream without fear that I’ll get lost on the way home, or forget them somewhere. I want to be trusted to take MYSELF out for ice cream without fear too! I want to be remembered as the kind, witty person that I am - not as the withered, sometimes cruel shell that is to come. I want my fun-eral and eulogies to be filled with jokes and laughter. (Of course I expect my loved ones to weep long and hard at my loss - but I also want them to remember me only fondly and not have that bitter undercurrent of “I’m glad it’s over” that a long protracted illness brings.)

In all honesty though, I think the thing that causes me the most angst is the inevitable pain I will cause my loved ones. I’ve read numerous articles about how the loss of memory and self determination often leads to cruelty and other forms of poor behavior. We all die. That’s a given. The best that any of us can hope for is a peaceful death devoid of pain and suffering. Unfortunately those who are afflicted with Alzheimer’s aren’t going to get that. And our families / friends / caregivers are going to have to bear the brunt of it. I’ve mentioned this before on the blog, but I can’t stress how important it is for loved ones to be there for eachother while the inexorable decline happens. Of course, that’s why I’m doing so much research on ways to die by my own hand (legally) and prevent much of that pain from occurring. And in that light, it’s imperative for access to death with dignity to be granted to those with dementia. I’ve read and understand the arguments against this and I urge those opposed for whatever reason they might have, to look outside their own pain and drop their selfish cause. (Of course, I’m aware I’m being selfish too, but in this case I believe deeply - as I’m sure they do - that I am in the right. Despite my fears and lack of knowledge about what is to come.)

Thanks for reading,

Dy