Communion Of Dreams

Fear. And failure.
August 30, 2011, 9:53 am
Filed under: Alzheimer's, Failure, Publishing, Writing stuff

I posted something on my Facebook profile yesterday, which got a response from someone who had cared for her parents until their deaths. Basically, she was afraid of revisiting being a care-provider by reading Her Final Year – afraid that it would confirm her fear of having been a poor care-giver.

This – *exactly this* – is one of the biggest reasons that I think that Her Final Year can be helpful even for people who are no longer care-givers. Because it shows us making mistakes, failing to do this or that right, learning only too late (or almost too late) that we should have done something differently. From the homepage for the book:

Much of the material in the book is intensely personal, even embarrassing. We have decided to share it ‘warts and all’ because that is the reality of being a long-term care-provider for someone with dementia. You will make mistakes. You will sometimes feel crushed by the isolation and stress. You will get into arguments with family and friends, and even say or do things that you later regret. You will occasionally resent, or even hate, the person for whom you are caring. We did. It’s completely normal, but seeing how others experience these things can be very helpful.

Back in February of 2008, I wrote this:

I’ve also seen others in different forums who have almost felt like they had to defend their own decisions regarding a loved one who has Alzheimer’s or some other debilitating illness leading to hospice care. I’ve witnessed those who almost seem resentful that we did what we did, because it somehow implies that they did less – that they cared less.

No. We were able to make this work out. Barely. Everyone has a different situation, and each family, each person, must come to their own conclusions, their own solutions. None is better or worse than another. Because my wife and I don’t have kids, we didn’t have to juggle that aspect of life at the same time. Because we live here in the same town as Martha Sr, and have professions which allow a considerable flexibility in terms of work hours, we were better able to adapt to providing care at home than most. Our solution worked for our situation – barely. Those final months were very demanding, and I will admit that I was pushed further than I would have thought was possible, and failed and succeeded in ways I never expected.

I will not judge another – this experience has taught me humility.

That was very early in my recovery, less than a month after Martha Sr died. As I got further away from having been a care-provider, I came to see more the mistakes that we *did* make. And I came more to understand that I had to accept those mistakes, those failures, and forgive them.

Putting together Her Final Year was part of that process for me. If you read the book, you will see those mistakes. But hopefully, you will also understand them. Because that is all part of the process of being a care-provider. Just as it is part of being human.

Jim Downey

(Cross posted from the HFY blog.)

Decisions, decisions . . .
August 22, 2011, 11:55 am
Filed under: Alzheimer's, Health, Hospice, NYT, Science

There was an item making the rounds last week that I found pretty interesting. It was about the phenomenon of ‘decision fatigue’ where the process of exercising willpower to make decisions wears you out, and after a certain point you start making bad decisions until you take a break and give your brain a chance to recharge with rest, food, and a change of pace. You can find the full article here, and here is a good passage which sums up the research:

Decision fatigue helps explain why ordinarily sensible people get angry at colleagues and families, splurge on clothes, buy junk food at the supermarket and can’t resist the dealer’s offer to rustproof their new car. No matter how rational and high-minded you try to be, you can’t make decision after decision without paying a biological price. It’s different from ordinary physical fatigue — you’re not consciously aware of being tired — but you’re low on mental energy. The more choices you make throughout the day, the harder each one becomes for your brain, and eventually it looks for shortcuts, usually in either of two very different ways. One shortcut is to become reckless: to act impulsively instead of expending the energy to first think through the consequences. (Sure, tweet that photo! What could go wrong?) The other shortcut is the ultimate energy saver: do nothing. Instead of agonizing over decisions, avoid any choice. Ducking a decision often creates bigger problems in the long run, but for the moment, it eases the mental strain.

I think we’ve all probably experienced some form of this, and the long article goes into plenty of examples such as shopping, making the ‘decision’ to resist temptation (whether food or leisure or sex), having to go through and make judgments about difficult matters of fact, and so forth. I know that it is one of the reasons why I found editing Her Final Year so damned exhausting – fine distinctions between word choices and phrasing combined with the emotional content of the material meant that I could only effectively work on the book for 45 minutes or an hour a day.

And I think that there’s a connection to Alzheimer’s that this research clearly explains: the phenomenon of “sundowning“. Here’s a passage from Her Final Year, from an entry of mine titled “When does this plane land?” originally written 9/3/07:

There’s a phenomenon familiar to those who deal with Alzheimer’s. It’s called “sundowning”. There are a lot of theories about why it happens, my own pet one is that someone with this disease works damned hard all day long to try and make sense of the world around them (which is scrambled to their perceptions and understanding), and by late in the afternoon or early evening, they’re just worn out. You know how you feel at the end of a long day at work? Same thing.

And interestingly, that passage comes from the chapter October: Hospice or placement? which deals with the incredibly difficult decision of what to do with a loved one when you’ve reached a crisis point. A decision that any care-provider has to make in the face of years of exhaustion. A decision which they will probably second-guess for the rest of their lives.

Jim Downey

(Cross posted from the Her Final Year blog.)


Interesting observation: last week I set up two Twitter accounts, one for “HFYJim” to support the care-giving book, the other for “BBTIJim” for my gun-nut stuff. Since then I’ve been learning the ropes about the Twitter culture, getting established, figuring out who to ‘follow’ and gaining a few followers myself. As of this morning, both accounts had about the same number of followers (about a score).

Now, in any sort of social media like this, you’re going to get some amount of SPAM. It’s always interesting to see where, and how it manifests. Just recently, the new Her Final Year blog has started to get some comments which seem OK though generic on the surface but which are actually links to this or that scam website. That tells me that the blog has now started to show up in search engines enough to be something of a target. No big deal, it goes with the territory.

But in the world of Twitter, spam seems to manifest as bogus followers. Not sure why this would be beneficial, but that could just be because I have my computer set up to filter out all the advertising, flash, and pop-up crap from websites. Anyway, of the two accounts I set up at the same time on Twitter, guess which one had attracted a handful of bogus followers who were ostensibly attractive young women with links to ‘pictures’ in their profiles?

It wasn’t the gun-nut one.

Nope. It was the care-giving one. The one tied to AARP, a variety of different Alzheimer’s and hospice organizations, and which I selected to use to follow different news outlets and science bloggers, many of which have significant left-wing political overtones. Not the one tied to a number of firearms-related sites and bloggers, some of which also have a decidedly right-wing political stance.

Curious, that. Now, this is just a snapshot, and it may be that I’ll see the same thing happen with my BBTIJim profile as time goes on. But I thought it was interesting.

Jim Downey

(Cross posted to the BBTI blog.)

Various and sundry.

First, sharing this from Phil Plait:

I’d been familiar with the illusion, but this is a really good demonstration of it. Nice.

A follow-up to this post of last week: ‘Her Majesty’ is still hanging in there, though very weak. She spent a couple of hours sleeping on my chest this morning, purring quietly. Makes it hard for me to get any work done, but I don’t regret the time. At all.

We continue to get excellent reviews and comments about Her Final Year, which makes the lack of sales of the book even more frustrating. Ah well. I won’t be posting a lot here about that book, but you can follow developments on the dedicated blog. We do have a number of big things lined up which may be of interest – reviews in papers and magazines. As those come to fruition I’ll probably mention the most important items.

Oh, if you want, you can now find me on Twitter. I’m still getting the hang of it, but can see why it appeals to some folks a lot.

And another follow-up, this time to a post from several years ago: on Monday we ‘closed’ on the real estate transaction which was the resolution of that whole debacle. The property in question is now ours. There are still some lingering details which need to be dealt with over the next year, but once again that is really someone else’s concern. And now if I never have to deal with the people involved ever again, it’ll be just fine by me, as I am perfectly happy to let this little piece of small-town history finally be buried.

Lastly, yes, we *are* making some headway on the big BBTI revamp and expanded data sets. Remember, the data we collected during the tests in May was almost as much data as we had collected in all the previous tests. Then adding in the .22 tests from June, and I think that did surpass the previous amount.

It’s been a busy and productive year. And it isn’t yet 2/3 done.

Jim Downey

August 14, 2011, 5:45 pm
Filed under: Humor, movies, YouTube

…is twisted, but very funny:

That is all.

Jim Downey

Thought I’d share . . .
August 13, 2011, 5:20 pm
Filed under: Alzheimer's, Feedback, Hospice, Publishing

We’re starting to get some good feedback on the book. I posted a full review someone wrote and sent to us over on the HFY blog, thought I’d share a bit of it here as well:

Readers will not find a more real, heartfelt and honest account out there aside from your own personal experience. For folks who have already walked this path, (and could possibly walk it again), this is a must-read book.

It is assuring and comforting to know that as long term care providers to a close family member, our personal feelings and ideals are “normal” and okay. It is in many ways, a personal and solitary journey, but this memoir lets the reader know they are never completely alone.

Go check out the whole thing. If you’ve read the book, and would like to either leave a comment over there or send me a full review, please feel free to do so. Reviews on Amazon are also most welcome. And if you haven’t read the book, then you should go ahead and get a copy of it, right? Right. That’s how this self-publishing thing is supposed to work. Kindle version here, paperback here. Well, go on.

Jim Downey

Lasting effects.
August 12, 2011, 3:12 pm
Filed under: Alzheimer's, Hospice

All of us experienced a lot of emotional turmoil while going through and assembling then editing Her Final Year. It wasn’t just dealing with the memories, but also in dealing with the items which we had written at the time – the very thing which makes Her Final Year a powerful book for others made it very difficult for us to work with.

And just recently Martha and I have been experiencing another kind of echo: our elderly cat is dying, basically of dementia.

Our vet has assured us multiple times that she’s in no real pain, and likely won’t be, though he has told us what to watch for to be sure. He’s also asked us multiple times whether we want to euthanize her. Frankly, he’s been a bit surprised that we haven’t taken that route, since the amount of care she needs has increased significantly, and will likely increase even more before the end.

Neither Martha nor I want ‘Her Majesty’ to suffer, and we have no qualms whatsoever in euthanizing her if it comes to that. None.

But we have also been through this, and know that a natural death is nothing to fear. That is one of the lasting effects of having been a care-giver, and going through hospice with Martha Sr.

Still, while it is a good thing, this also touches very close to those memories of Martha Sr’s last weeks.

Very close, indeed.

Jim Downey

(Cross posted from the HFY blog.)