Have You Heard About Ruby's Bequest?

As you know, I sometimes make a point of reporting about other blogs and sites that are making a unique contribution to caregiving. I recently learned about a project you might be interested in. Basically it’s a virtual-reality project called Ruby’s Bequest, sponsored by United Cerebral Palsy (UCP), AARP, and the Institute for the Future (IFTF) which seeks to develop solutions to the imminent care-giving crisis.

Experts are predicting that, in the near future, there will be shortages of paid care-givers and direct service providers, shortages in government resources to assist people who use care services, and an influx of people who will need said services as more Boomers with disabilities start aging, and as more Boomers start aging into disability.

Ruby’s Bequest is a story-telling project which aims to provoke a massive brainstorming session amongst all its participants. During the course of the project, participants will be presented with various future scenarios containing various care-giving related problems. They will then have to put their heads together and imagine creative solutions to those problems.

The end result of the project will be a compendium of novel ideas and solutions to the near-term problems associated with care-giving and caring in general. Hopefully it will also serve as the beginning of a conversation about a new, more holistic and sustainable way to look at the role of caring in society.

The creator's of Ruby’s Bequest state that:

- it is a “massively multi-player future forecasting role-playing experience” designed by United Cerebral Palsy (UCP), AARP, and the Institute for the Future (IFTF).

- it is for people with disabilities and people without disabilities alike.

To look at the website go here: http://www.rubysbequest.org

- it is a way of crowd-sourcing for innovative solutions to challenges facing the care-giving community.

- it takes place in the fiction town of Deepwell, USA, where a cast of characters (played by IFTF operators) interacts with online participants (the public) and gives them a series of “caring challenges” to overcome.

To find out what’s going on in Deepwell, go here: http://www.rubysbequest.org/faq.aspx

- it requires game participants to send in their suggestions and ideas for how to solve the problems posed by each “caring challenge”, either via email, telephone, or video message.

What a fun and challenging way to deal with our very serious subject!

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com

CAN COCONUT OIL HELP ALZHEIMER'S?

According to an article in the October 29, 2008, issue of the St. Petersburg (Florida) Times, it may be able to help. Possibly quite a lot.

Times correspondent, Eve Hosley-Moore, writes about Dr. Mary Newport's husband Steve, whose results in an early Alzheimer's test improved after adding coconut oil to his diet.

As her husband's condition deteriorated, Dr. Newport (a neonatologist) learned about a new medication undergoing clinical trials. Its primary ingredient is an oil composed of medium chain triglycerides known as MCT oil. She also learned that this medication derived its MCT oil from non-hydrogenated coconut oil.

When Steve Newport was not accepted for a clinical trial using MCT oils, Mary Newport went to a health food store and purchased commercially available non-hydrogenated coconut oil. The next morning she stirred two tablespoons of coconut oil into her husband's oatmeal. The results for Steve were amazing. To find out more about how Steve Newport improved I recommend reading the entire article which can be found at the following URL at Tampabay.com:

http://www.tampabay.com/news/aging/article879333.ece

Would coconut oil help every dementia sufferer? That's what the clinical trials are trying to determine.

The article also stresses the importance of consulting a physician before trying coconut oil at home. One expert pointed out that eating too much of one type of fat can actually be dangerous.

Everyone involved, including Dr. Newport, understands the need for additional research. Nevertheless, she is happy with the way her husband has responded so far, and she wants to share the good news.

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com

Did You Ever Feel This Way?

Two poems from "Dementia Diary" written while Mom was still alive. Ten years separated the writing of these verses during which she surprised everyone not only by surviving, but also by becoming gentler and more loving year after year. She's gone now, but the feelings that motivated the writing remain fresh and new. I hope they are meaningful to you too.


1993

It's downhill now and going fast.
I don't know how long she can last.
I picture her in decades past;
And I deny the truth.

She was a woman smart and bright,
Whose energy gave off a light.
I picture her all dressed in white;
And I deny the truth.

Her beauty gone, her judgment lost.
Her affection for me now is forced.
She's terrifying when she's crossed;
And I deny the truth.

She's widowed now and all alone.
She sets a self-destructive tone.
It's hard to love this angry crone;
And I deny the truth.

I grieve for who she was when I
Was young and did not have to lie.
So many memories to untie;
And I deny the truth.

The truth is that she soon may die;
And then I'll have to learn to cry;
And also have to face this lie,
And not deny the truth.


2003

The truth is that she did not die.
She was not ready to say goodbye;
But like a fairy butterfly
she makes me face the truth.

From her cocoon she struggled out
not knowing what her life's about;
too frail to rage and rant and shout.
She makes me face the truth.

She's gentle now, her anger gone,
she's sweet and kind, a paragon
who's loved and praised by everyone.
She makes me face the truth.

Her memory is very weak
as is her shrunken bent physique.
Her voice is raspy. When she speaks
she makes me face the truth.

She can't recall her family,
and friends she knew will ever be
gone, forgotten, absentee.
She makes me face the truth.

The truth is that I miss the days
she made me crazy with her ways.
This cheery cherub's face portrays
a stranger's unknown truth.

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com

Did I Lose My Job?

Thankfully, I have no shortage of friends, many of whom went through the whole caregiving experience before I did. They are full of good advice, for which I am eternally grateful.

Shortly after Mom died, I didn't know what to do with myself. No more emergencies, nursing home visits, assessment meetings, phone calls, doctor queries, pamper purchases, hospice evaluations, etc., etc., etc. I suddenly had lots of extra time on my hands and, instead of enjoying it, I felt at loose ends. So I complained to a buddy and can you guess what he said?

"Bob," he said. "You not only lost your mother, you lost your job!!!"

That hit me right between the eyes. I'd never before thought of my caregiving as a "job." But think about it. I didn't get paid, of course, but all the other elements of a job were present, and when they suddenly disappeared, it felt very strange to say the least. But my friend's comment cut through my confusion on this issue and helped me to make the adjustment to a post-caregiving role.

How about you?

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com

Did I Do enough?

So it's over two years since Mom finally passed peacefully away and I'm finally getting used to the idea and feeling good about the things I was able to do for her during her last, dark years. No more guilt and no more regrets. It has taken all this time.

Before she died, a friend who had been down a similar path with his mother said this to me: "Bob, no matter how much you have done for her, when she dies you will feel like you didn't do enough." I listened respectfully and thought: 'Not me. I've been there for her through all the trying stunts she pulled as her mind and temperament went down the tubes.'

He was right, of course. From the moment the last shovel full of earth fell on her coffin until just a few months ago, I was hit with full fledged guilt for all the squandered opportunities to do even more for her—that I didn't do. The more that time passed, the more my memory focused on positive things in our mutual past and the less clearly I recalled the negatives—and the guiltier I felt.

There's no help for it. So I'll say to you what was said to me: "No matter how much you have done for your loved one, when death finally comes you will probably feel like you didn't do enough."

If it happens to you, roll with it. I'm told now by experts in caregiving that it's a common feeling and that it passes. I can now say it's true.

It passes!

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com

How Many Different Dementias Are There?

This is a repeat of the single most popular post on my blog, one that is also appearing on eldercare blogs, zines and sites throughout the web. It first appeared on my former website on September 17, 2006, and on this blog in July, 2008. It gets hundreds of "hits" every month and readers frequently tell me how helpful it is to them. So here it is again. Feel free to continue a conversation on this theme, caregiver burnout, caregiver support, or on any other related topic:

In 1906, Dr. Alois Alzheimer presented a key paper to the meeting of the South West German Society of Alienists. In it he described the disease syndrome that now bears his name. Today, Alzheimer’s Disease has become the common term most people use whenever they talk about any kind of dementia. In fact, the very term “Alzheimer’s” has become a catchall for any syndrome in which progressive cognitive dysfunction is the major manifestation.

However, there are dozens of other dementias including, to name just a few: Multi-Infarct Dementia, Frontotemporal Dementia (FTD), Pick's Disease, Progressive Aphasia, Corticobasal Degeneration, Lewy Body Dementia, Senile Dementia, Binswanger’s Disease, Vascular Dementia, Parkinsonian, etc.

From a caregiver’s point of view, it almost doesn’t matter which dementia is at hand. The perpetual grief and mourning felt by the caregiver will be the same regardless of the specific process affecting his or her loved one.

My special interest is in Multi-Infarct Dementia because that is the one that affected my mother and the one I write about in: “DEMENTIA DIARY: A Care Giver’s Journal.” (Another name for this syndrome is Vascular Dementia.)

I should say that I am not a physician or a professional expert in this disease. I am, by profession, a hospital administrator, so I do feel equipped to at least understand the language of the clinicians. What I know comes from 16 years of watching my mother sink into her opaque world, plus 16 years of discussions with physicians providing her medical care.

Here is the way one physician described Multi-Infarct Dementia to me. It is caused by multiple strokes, some call them mini-strokes. The “victim” of this condition may not be, indeed usually is not, aware that anything out of the ordinary has occurred. Neither are his or her significant others.

Perhaps there is momentary weakness, headache, or dizziness, but nothing major. Over time, however, enough damage is done to the brain that symptoms begin to appear such as: confusion, impaired judgment, aphasia, irritability, depression, mood swings, inertia, significant memory loss, and a host of possible others.

Not all symptoms are experienced by every sufferer, but sooner or later most of them may appear. And the symptoms of Multi-Infarct Dementia are not really all that different from Alzheimer’s or other dementias. I’ve been given to understand that these differences are subtle, hard to tell apart for a layman.

Health care professionals have explained that if one were to line up sufferers of each of the various dementias next to one another you could probably differentiate them—but that’s what it would take.

If you are dealing with a dementia in a loved one, good luck and best wishes in your search for help and understanding.

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com

Oops, I forgot your name!

I'll never forget the shock I felt when I first heard the following comment from a medical professional: "It's not about memory, it's about cognition."

He was talking about dementia and what, in his opinion, is a popular misconception that leads to a lot of unnecessary worry by people who are suddenly forgetting names and where they placed things like the car keys.

What did he mean, "it's not about memory?" After all, it was obvious to me that it was indeed about memory. I was closely monitoring my mother's symptoms as she sank deeper and deeper into the opaque fog of her multi-infarct dementia. She was forgetful about everything, including exactly who I was. I mean, the nurse asked her during one of my visits:

"Look who's here, Millie. Do you know who this is?"

Mom smiled and said, "Of course I do. He's my grandson."

"No Mom," I said. "I'm your son."

"I knew that," she said, still smiling.

So wasn't that about memory? Of course it was. What the medical professional meant was that it's more complicated than that.

Most of us have heard the expert statement that if you forget where you put your car keys, you don't have to worry about dementia. But if you forget what the car keys are for, that's serious. That could be dementia. That's not just a memory problem (although memory is certainly part of the picture), that's cognition, which the dictionary defines as: "the act or process of knowing; perception."

It's subtle but it's real. Mom didn't just forget me. In fact, she remembered me. She just didn't know who I was.

This isn't just semantics. As we age, most of us develop retrieval problems where we can't instantly recall something or someone that should be very familiar to us. According to my medical professional, that's a normal memory issue far removed from dementia.

But it's still darned annoying, isn't it?

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com