Memory Health: Alzheimer's Support Group
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Don’t send me flowers

Warning! If you’re not in the mood for a rant then read no further.

I don’t know if it’s the upcoming 2nd anniversary of my mother’s death or the year anniversary of my brother’s death (“anniversary” seems such a glib way to phrase that) or that I’ve been in an almost continual fog since Christmas or maybe I’m just in a pissy mood. But, I’ve been thinking a lot about people’s responses to death lately. And the more I think about it the angrier I get.

What really bothers me is how everyone gathers at the funeral, wake, whatever... and talks about what a good fella old joe was and how he’ll be missed and they tell all the stories of things he did for them or they for him etc, etc, etc.... Problem is, most if not all of them couldn’t be bothered to phone, write, text, email, visit, or in any other way interact with old joe during the last years of his life when he was ill, mostly home bound or possibly confined to a nursing home and could have really used some positive interaction, an occasional blast from the past, just an intermittent, “Hey, I’m glad my friend is still around to talk with!”. No, they much prefer to show their concern long after old joe is long gone and will never feel their concern or love. It’s a show of their empathy, a display of their compassion for the masses.

Had this been my experience with one or two elderly or infirmed, I don’t think I would be so adamant in my thinking. However, I’ve been involved with numerous individuals in these situations and almost to a fault, this is the way it has fallen out. And I think it’s a horrible statement regarding society as a whole. As a born again, baptized Christian, I find these actions in the church family especially egregious. More often than not, those who are supposed to be shepparding the congregation, the pastors, the deacons, etc... are all about what ever it takes to care for the flock while in the church. But, let a congregant fall ill and become unable to continue to attend services, they might as well not exist anymore because they will rarely be visited or contacted by anyone in the church family. At least that’s been my experience.

Now, you may be saying that I just haven’t attended the right church and you could be right, I would never discount your values. But I’ve attended several churches for long periods of time and discussed this matter with other long time church goers (from both sides of the issue) and have invariably found this to be true. This and a lot of petty bickering and back bitting. It turns out being little more than another high school experience on steroids. At this time, for me, faith does not involve organized religion.

As my condition has worsened, of all the people I have known in my life, outside of my immediate family, it has come down to two people who can find the time to occasionally keep in touch with me. One, an aunt in her 90’s, calls regularly. Assuming she is still around when my time expires, there is no way she will be able to attend my services but what she’s doing now means much more to me and my family than anything she could ever do for me after I’m gone. The other, ive never met in person. But we manage to contact each other almost daily. We have a kinship in a way in that we both are walking this same dark path. But that is not what binds us, it brought us together, but friendship, a genuine caring, keeps us in touch.

So, when my time comes don’t expect some somber, snot slinging service. I’ve told my wife I want a day long, Jimmy Buffett style tail gate celebration of our life together. So if you didn’t have the time to write, call, text, email, visit, etc... then, dont bother putting on your lei and sandles and DON’T SEND ME FLOWERS!

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Randy, this is Beth. I want to say thank you for being Jeff's friend. Like you, of all his friends, he has two who keeps in touch. He met them both online and after talking about meeting the first for a couple of years, we finally made the journey to meet him a couple of years ago. Unfortunately, we both know he will never have that same pleasure with you.

Thank you again for being his friend, you mean more to him than you know and talks about you all the time.

All my love.

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Hey Beth, ditto. It’s difficult to describe what Jeff means to me. And that’s odd to say about someone you’ve never met. He helps keep me sane, maintain a sense of humor, and some sort of perspective about out condition. But more than that, we just “get” each other. Were we to meet, I think we would be just as relaxed sitting in silence over a beer as being involved in a long conversation. We just seem to be comfortable with each other. Almost like old childhood friends. And I value that. Thanks for sharing.

Randy

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So true

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I hear you Randy loud and clear. I would be remiss if I said I didn't face a similar situation. My problem has not been with my church... the minister and the congregation have always reached out to me and my wife. My problem is with family... not all, but most. It feels almost like I have the plague. In this day of social media and the like, there's no chance of anyone becoming infected, so I wonder to myself... why no pokes, PMs or the odd; How are you doing?

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Hey Randy, I needed a few days before responding to this, not for the reasons you might suspect. Aside from the obvious point of the story, it also made very plain how folks like, you, me, daddy et al live in a slightly different zone than the rest of the crowd. First, your story to me wasn't dark at all; it was a simple recognition of what is going on around you; observation at best. Any darkness is added by the attitude of the reader.

Secondly though, dude, we are demented, we are by law required to rant and rave and the best part is we are not expected to make sense either. So rant away babaloo.

I don't share the problem you and others have so can't relate too well. Its not that I have tons of people in my life; I don't but then I rarely have. Moving to a new part of the country or world every 18 months to three years most of your adult life will do that. While I didn't know then it would have this effect, it was a choice I made in pursuing the profession I had. Came with the turf, so to speak.

That said however, with a lifestyle like that when you DO encounter someone worth knowing, you tend to hang on extra hard if this makes sense. My words are kinda fumbly this morning. Thats how a situation results in I have 50 acquaintances I may or may not care if they are abducted by aliens tomorrow morning but I have two that I would go to the mat for without a second thought. And as you point out, one I have never met and I would have to add that the other one I have only met once. Shrug.

The other reason I waited a little is this. No this isn't dark at all to me BUT I do recall when I was first "probably diagnosed" and it still might have been AD back then so I found the only book with a first-person report of what it was like and man I had to put it down by chapter three, it was freaking me the F out. Partly that it was coming for me but most just how far out there this guys mind got so fast and yet to his mind, all his imaginings made sense and were reality and everyone else was wrong. He was getting paranoid and all manner of stuff and like I said, this is chapter three. I just could not follow him down that path into the rabbit-hole.

Now having existed on the other side of the fence for a bit I have perspective I didn't have before. The book still scares me so I still won't read it but what this perspective has taught me is that dementia is a particularly singular kind of hell, made to order for each individual; so his hell won't necessarily have to be mine. And thats the other thing, I am trying so hard to be pro-active about this so I can hopefully eliminate or mitigate some of the worst bits of whats coming. I know in my heart the odds are steeply against me succeeding in any meaningful fashion but even so, I would so hate to have my last really thinking-thought to be that I gave up and just let this happen to me.

PS: This is really me, the one without boobs. Just to be CFB.

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