Beginnings are such delicate times…

Posted on August 8, 2011 by Jim

As I noted on our Facebook page yesterday, something interesting is starting to happen: random people are starting to read the book, and word is getting back to us on what they think.

There’s this comment from a discussion about the book on Saturday:

It’s the finest Alzheimer’s/caregiver book that I’ve read. I mean that and I’ve probably read nearly all of them.

My wife is near the end after twelve years with Alzheimer’s and most books on the subject are about worthless. Usually they are written by a “caregiver” who does it by telephone. Your book, though, had me shaking my head in agreement throughout, letting me know that someone else understood and had experienced my journey. I know that your insight will help during my first year after.

John heard from someone who had helped us with the ‘beta reading’ who had loaned it to a friend. She passed on this:

“Probably the most powerful book I have EVER read! I would put it down, and take a break and pick it back up…”

I heard from my old editor at the Columbia Tribune, who is now fully overwhelmed in care-giving for family. He said this in response to getting the book:

I started leafing through it and started reading whenever I stopped on a page because it was so personal in nature but also because we, C and I, can relate in so many ways. Oh so many similar issues except my mother-in-law does not have Alzheimer’s, but we also have a paraplegic brother-in-law in a nursing home too. Oh, and C’s mom has been on hospice twice but has been dropped so we pay for aides to help us even though we have not had a vacation in five years.

Broken hips? Yup. Been there and done that.

Multiple hospital visits? Too numerous to count.

Anger and frustration and burnout? Check.

I will certainly read the book and get back to you. I’m positive this book will benefit neophytes AND oldtimers like us.

And then the person who made the first quote above added this comment yesterday:

I really do like the book!

Usually caregiving books just make me mad. You guys and your wives covered so many valuable areas and did it so openly.

What makes this particularly interesting is that in each case, including the Amazon reviews, the people who have responded this way seem to become promoters of the book, wanting others to also read it.

If that continues then that will be our best means of making the book a success. There’s nothing like word-of-mouth for promoting a book, particularly when the good reviews come from people who themselves have experienced what it means to be a care-provider. That’s the sort of thing which can break-through the natural reluctance to talk about this intensely personal subject.

As Kathi put it yesterday:

You want to know something? I don’t especially like talking about this. But I have to. Not just for me, but for all of us.

One day we’ll all be the ones needing care.

And if our loved ones have no clue where to begin, what will happen not just to us, but to them?

Jim D.

The Problem

Posted on August 7, 2011 by Kathi

We’ve got a problem here.

Everyone knows about it, but nobody wants to talk about it.

One of our semi-regular customers is a woman we call RunOnSentence. She doesn’t appear very often because “Iliveoutofstatebutmymotherlivesaroundthecornerfromyou”.
The last time RunOnSentence called in an order it was all this plus how she ended up out of state. I made faces at the telephone. Honestly, I can’t tell what else she said until “OhpleasemymotherisverysickIneedacakeIDON’TKNOWWHATTOOODOOO!”

And right then and there, I gritted my teeth. Glared at the phone. Made a fist with one hand and tried not to pound it through the stainless steel table. I caught the eye of a coworker, pointed my index finger at my temple, and pulled the thumb trigger.

I didn’t have the time to slow her down and ask her what was going on with her mother. That’s being nice, though. Want to know what really went through my mind?

“SHUT THE ^$@% UP! I DON’T WANT TO HEAR IT!”

No, I’m sorry, but please, don’t pour your soul out to me. Don’t pour your soul out to me because I lived through that hell and, god as my witness, if I ever have to relive that again with someone else I WILL find a gun and aim it right at my temple.

It didn’t help when RunOnSentence came to pick up her cake. There was a minute smidge of icing right about the inscription. I didn’t even notice it until she pointed it out to me, right there, in the middle of the sales floor, on a busy Saturday afternoon.
“OHMYGODICAN’TGIVETHISTOMYMOTHERSHEISN’TWELLANDIJUSTCAN’TDOTHISTOHER!”

And she started to cry. Shriek, actually. Her face crumpled, tears making her cheeks raw and wet, She slumped over the carriage, sobbing, “Mymotherisn’twellandIdon’tknowwhattodoIdon’tknowwhattodo…”

There was nothing I could do right then and there. I was in the middle of twenty zillion other things. All I could manage was a murmured, “I’m so sorry,” as she collected herself without looking at me. I went back to what I was doing. When I looked up a minute or so later, she was gone.

“What’s the matter with you?” my coworker asked. “You look like you’re going to murder somebody.”

***

That’s just it. Of course nobody wants to talk about it when they’re not directly involved with it. On the surface, why would they? I can think of several reasons:

It doesn’t concern me right now. OK, that makes sense. But think of this: What would happen if something did happen? What would you do? Have you ever discussed it? Has it ever crossed your mind?

It’s unplesant to think about. Yes, OF COURSE IT IS! There are many unpleasant aspects to caregiving, and I’m not talking about the actual physical part. Emotions you never knew were lurking have a way of suddenly emerging. They’re ugly. They will drive you to your knees when you least expect it. They will make you a wreck in every sense of the word. Even if you attempt to take the zen route, those emotions are still going to batter you.

:whine: I’ll have to rearrange my life :whine: You bet! Caregiving upends your schedule as you know it. If you have a family, it’ll upend their schedule. You can kiss your social life goodbye if you’re the primary caregiver. You’ll probably bicker with relatives over your loved one’s care. You get to navigate the minefields of the medical world, the realm of insurance, your loved one’s finances. Swashbuckle with Medicare and Medicaid! Oh, and what’s this about taking care of yourself on top of it? What?!?

I’ve done it once and I’m never doing it again. How do you know? Can you honestly answer that? Can you take what you learned from your prior experience and apply it in real time? What about what you may have learned since? Have you ever given it a passing thought? You must have…or else you wouldn’t have this particular reaction.

***

I know why I had that particular reaction to RunOnSentence: I knew exactly where she was coming from. A daughter who loves her mother but doesn’t live nearby. She knows something is going on. She’s exhausted, worried, flailing, worried, wants somebody to listen to her, worried, and has no idea what she should do.

Maybe there are no other relatives living near her mother. Maybe there aren’t any other relatives nor friends. Maybe the mere thought of having to upend her life out of state to take care of her mother unhinges her. Perhaps she’s projecting the worst case scenario, which unhinges her even more.

I wanted to tell her. I wanted to hug her and slow her down enough to coherently talk. Take a few deep breaths, get something non-caffeinated at the food court, sit, and listen. Stop myself from giving advice because that’s not what she needs right now.

At the same time, though, I wanted her to shut up and sarcastically thank her oh-so-much for rewinding my mental caregiving tape. Oh, ho, you pulled the sick-relative schtick so you could get a discount, right? Right? DON’T LIE TO ME. Who the hell would have noticed that nearly invisible smudge on the cake otherwise, hmm? (How DARE you make me mentally relive that. HOW DARE YOU.)

You want to know something? I don’t especially like talking about this. But I have to. Not just for me, but for all of us.

One day we’ll all be the ones needing care.

And if our loved ones have no clue where to begin, what will happen not just to us, but to them?

“… don’t you worry anymore.”*

Posted on August 6, 2011 by Jim

So, we’re now over two weeks into this. Have 90 “likes” on Facebook, and we’re seeing some traffic on both this blog and the HFY website. The dKos group I mentioned previously is going strong and starting to settle into a regular routine. I got a good response to my Aging & Firearms article, and it has engendered some good discussions on two of the largest firearms forums.

Pretty good, eh?

Maybe. By my count, we’ve now given away about 50 copies of the book, as thank-yous to people who helped us with it, and for reviews, and in promotional efforts.

And we’ve sold . . . 12. Our rank on Amazon has dropped to . . . well, I don’t even want to print the number. Suffice it to say that it’s not terribly encouraging.

I worry. Well, I’m prone to it.

But I also knew that it would take a little while to get the word about the book to spread. There’s supposed to be a review in the local paper (which I used to write for) soon – could come tomorrow, or next week. My college alumni magazine is doing a review to be out in their fall issue. I think John’s alumni mag is also doing something soon.

And who knows, perhaps one of the other promotional efforts we’ve been slogging away with will hit paydirt, or one of the people who has gotten an advance copy will mention it to the right person or in the right forum, and then *bam*. I keep reminding myself that even my hugely successful conceptual art project a decade ago took a couple of months before it caught on, and then only due to a fluke mention in the right forum.

Yeah, the first days *are* the hardest days.

Jim D.

*Of course.

More discussion

Posted on August 5, 2011 by Jim

on the topic of Alzheimer’s & Firearms over on The High Road and also on The Firing Line.

This is something I know about, and I’d like to see the issue discussed more and resolved intelligently at the family level before it becomes a problem. But once again I seem to run into a cultural bias where people don’t want to be confronted with the reality of care-giving for someone with age-related dementia.

It’s easy to forget just how much education needs to be done about Alzheimer’s and other age-related dementia…

*sigh*

Jim D.

Housekeeping…

Posted on August 3, 2011 by Jim

Goodness – we’ve all been so busy with this and that, we haven’t kept up with the blog posts! Sorry!

So, some links and such:

There’s a new drawing for *two* copies of the book – check out the Facebook page!

Some related posts on care-giving over on Daily Kos:

And more to come!

Jim D.

Aging and firearms.

Posted on July 31, 2011 by Jim

Just thought that I would link to an article I wrote for Guns.com, which may be of interest to others who are helping care for someone with age-related mental decline. Here’s an excerpt:

This problem is most commonly seen in the “when do we take the car keys away?” question, which usually comes up well before someone has traveled very far along the road to dementia. And many states have mechanisms in place to address it — by requiring people over a given age to take driving tests, or putting the onus on doctors to report when a patient should no longer be driving. But to the best of my knowledge, there is no mechanism in place in any state that addresses the question of aging as it relates to gun ownership. So this is left up to the friends and families.

As I think it should be. The problem is that too often those friends and family members are unwilling to have that hard conversation. Going back to the matter of driving, I have known people who would refuse to allow their own children or spouse to ride with an elderly person who was still driving, and yet were still not willing to discuss the matter with said elderly person. Yeah, they were willing to risk the life of the elderly person in question, as well as strangers on the road, when they knew full well that the person should not still be driving. All because they were unwilling to have an uncomfortable conversation and perhaps intervene.

So, when should you have that very difficult discussion?

Take a look. There were some good discussions in the comments, as well.

Jim D.

Financial reality.

Posted on July 28, 2011 by Jim

As mentioned yesterday, there is a Daily Kos group now set up to discuss care-giving. You don’t have to be a member of the site, or agree with any of the politics there in order to read what is posted. And I thought I would just share a bit of something I put over there a few minutes ago:

Like I said, how it impacts you will depend entirely on your own situation. You may be able to get some money via state or federal programs meant to aid care-providers. You may be able to tap into long-term care insurance for an “alternate care plan”. You may find that you can at least get some respite care or help from different agencies on aging in your area. Or you may be in a situation where you have to “spend down” family resources for any help at all, which can leave a care-provider almost destitute when care-giving is over. Combine that with the exhaustion which comes with care-giving, and being removed from the labor market for a period of time (during which your job skills may become outdated), and one thing is clear: the decision to care for a loved one means a substantial financial sacrifice.

There is more there, complete with links to studies with actual numbers and everything. Suffice it to say that it’s actually a very big financial hit on average.

Jim D.

Why isn’t Her Final Year available on Amazon.ca? Part 1

Posted on July 28, 2011 by John

Yesterday, I received a Facebook inquiry from Wendy Mishkin asking why Her Final Year was not available on Amazon.ca. I forwarded the question to Amazon, where it was sent along to the folks at Kindle and at CreateSpace. The Kindle folks answered early this morning…

“Depending on the rights of the publisher, Kindle titles are listed in the Amazon.com, Amazon.co.uk, and Amazon.de Kindle Stores; the Kindle Store is not available on other Amazon websites (Canada, China, France, Italy, Japan).

Customers from around the world can visit http://www.amazon.com or connect wirelessly via the Kindle or mobile device to download titles from the Kindle Store.”

Sure enough, the Kindle version of the book is indeed available at Amazon.co.uk as well as Amazon.de

It’s likely to be a similar reason is similar for the CreateSpace POD version, but we’ll update when we get back a definitive response from the folks there.

Thank you to Zaid H. from Kindle Direct Publishing for the answer to the Kindle side of the question.

 

One week.

Posted on July 27, 2011 by Jim

Well, we officially launched the book one week ago. It’s been a pretty exciting time since.

First, some numbers. We currently have 57 “likes” on the Facebook page for the book. Yay! Be sure to spread the word with your friends, tell them to join us! It’s probably the best way to hear of upcoming contests and quick info.

And we’ve got two grand reviews of the book on Amazon! Please, if you’ve read the book, add your own review – providing others with more info should help them make an informed decision to get the book themselves.

So far we’ve only sold a total of 9 copies of the book. That breaks down as 6 paperback versions, 3 Kindle versions. A bit of a disappointment, but I expected that it’d take some time for people to actually jump in and make a purchase. Remember, one dollar from every sale will go to supporting good causes related to dementia care, hospice, and care-giving support.

We have had a great response to a new care-giving group on Daily Kos. Since John and I first crossed paths there, and the response to our writing was so positive, we felt like we should start our promotional efforts there. Soon we’ll start to branch out into other appropriate forums. Please help us with this effort – be sure to mention our book in any care-giving, Alzheimer’s, or other related forums where you may participate. Word of mouth is incredibly important for a book like this to have a chance to succeed.

And likewise, any help you can give in getting the book reviewed or discussed by any media outlets would be very much appreciated!

Thanks for helping get us off to a good start!

Jim D.

just to get this out of my system

Posted on July 26, 2011 by Kathi

I haven’t really been discussing The Book in real life. It’s not so much not wanting to toot my own horn as it is something else, something which I knew was going to bite me you-know-where.

There’s something called “sustained grief”. Sustained because there’s never any break from it. Sustained because circumstances place you right in the middle of the deceased’s realm here on earth. Sustained because the grief is so encompassing, so virulent, that once you let it do its thing, it seeps from your pores and makes you crazy.

Here’s a story:

A few months after my mother passed her church sponsored a 10-week grief support workshop. It had been recommended to me by neighbors who’d been silently watching John and I throughout the caregiving period. Neighbors who’d known my mother well. Neighbors who’d known me since I was eight.

The workshop was held in the rectory’s basement in the same exact room with the same exact pea soup walls it had when I was in 4th grade. Even the same faded picture of the Sacred Heart still hung there. And the tinny, clunky upright piano in the corner. And the metal chairs arranged in a semicircle in the middle of the room.

I was the youngest by about 20 years.

I was also the only one not crying in some way.

There were three or four women at one edge of the semicircle, huddled together, faces in hands, weeping. One of the facilitators went over and placed a hand on a shoulder. The wailing turned into a screech.

I don’t remember what this particular meeting was about, to tell you the truth. I suppose we introduced ourselves. We each had to bring a photo of our loved one. There was a worksheet as homework.

I don’t remember because of the screeching. Wail-to-screech every time the facilitator asked a question. Loud, wracking sobs during somebody’s introduction. Dabbing. Twisting, pilling Kleenex. Quiet tears tricking down a cheek. A woman who looked older than my mother hyperventilating. She had to be helped out of the room.

I lingered afterward because I had to know: Was I supposed to cry like that? What if I couldn’t? My grief is underground. Doesn’t it count too? I only cry in public when it hits me sideways. I can’t help it, that’s just how I am.

The facilitator was around my age. Kind, kind eyes. She didn’t touch my shoulder or my hand as she had the others.

“Those women? The wailers? They follow me from church to church. One lost her mother thirty years ago. Another lost her husband maybe twenty. I don’t remember about the others. Wherever I go, there they are.”

“You’ve GOT to be kidding me,” I replied.

“If it’s not me, it’s one of my colleagues they follow. Day, evening, doesn’t matter. The church could be thirty miles from here and they’ll be there.”

Silence hung between us.

“It makes me want to grieve for them because none of them have a life other than grieving,” I murmured.

The facilitator nodded. “It’s an issue, especially with older women. Their lives revolve entirely around these groups.”

“If I become anythng like them, I’d rather be dead,” I said.

OMG, that’s what Mom said the first and only time SHE went to a grief support meeting in this very room. I remember it. I was sitting at the kitchen table doing my homework when she returned, thumping up the stairs, banging open the door. Eyes on fire, mouth set in a firm, line, words exacting, spitting, “I WILL NEVER, EVER GO TO ONE OF THOSE THINGS AGAIN. If I become anything like THOSE WOMAN, I’d rather be DEAD.

I drove home on autopilot, silently shuddering.

I still have the worksheet.

*****

I still live in my mother’s shadow.

Legally this house is mine, but it’ll always be hers. Her furniture, her pictures, her utensils. Her tools still on the pegboard in the basement. Whatever is mine is buried, swallowed, lost somewhere between her stuff and my husband’s.

Now there’s The Book.

I avoid speaking to my extended family a lot because I’m afraid I’m going to lose it when I open my mouth.

At work I listen to a coworker rant and rail about her mother who’s been diagnosed with probable Alzheimer’s. The mother lives with my coworker’s sister. “I HAVE TO WORK I CAN’T HAVE ANYTHING TO DO WITH HER,” my coworker chants whenever she’s not looking for sympathy. She’s forgotten her cutting words to me — SHUT UP, WHO CARES ABOUT YOUR MOTHER? — and, as much as I’d like her to taste those same words, I don’t.

My coloring, my complexion is similar to my mother’s, albeit a little lighter. I still avoid wearing her colors, autumn colors like brown, rust, olive green.

If I’m mechanically clever, I don’t know it. I won’t test myself. She was the mechanically clever one.

Most of all, I wonder if I’d be experiencing these same things had we not lived together for most of my life.

…to be continued…