JOAN’S BLOG – FRIDAY, MARCH 28, 2008 – REPORT FROM THE CAREGIVER CONFERENCE – GOOD NEWS/BAD NEWS

I’d like to share some information with you that I learned at the “Day of Hope” Caregiver Conference yesterday. Because I did not specifically ask the presenters for permission to print their names, I will simply reference them by generic titles. There were three speakers during the day, the best being the last woman who spoke.

Since this site is devoted to spousal issues, I am always looking for information exclusively related to the struggles spouses face in coping with Alzheimer’s Disease.  I thought it was extremely interesting that two of the speakers specifically mentioned spousal caregivers, both expressing the view that caregiving for an AD relative is difficult, but when it is a spouse, the emotional issues have to be completely different and devastating to the relationship.  Yes, I certainly did introduce myself after the presentations and tell them about this website.

So which do you want first, the good news or the bad news?  Let’s get the bad out of the way. It’s not as if we haven’t been discussing it, and didn’t already know. According to our keynote speaker, a refreshingly honest geriatric physician, there are no new drugs coming out for the general AD population in 2008, nor in 2009. There may be something in 2010. There are still many trials for new drugs ongoing, but the first line of defense drugs – Aricept/Reminyl/Exelon and Namenda are still the only ones available to treat AD symptoms. 

The rest is good news. To those of you who are questioning whether or not your spouse has Alzheimer’s Disease, and are involved in a battle with them to get an evaluation, the news is that it is VITAL to receive as early a diagnosis as possible. The earlier treatment begins, the longer the patient can remain in the earlier stages. They are finding that MCI – Mild Cognitive Impairment- most always progresses to Alzheimer’s Disease, so if treatment begins in the MCI stage, it is possible to delay the downward spiral.

Creative methods of “convincing” your spouse to agree to an evaluation were not discussed, but we have touched upon them on our Message Boards. My favorite is to blame the need for “extra testing” on the primary care physician (my apologies to the PCP’s out there), but it can be an effective strategy. Without dwelling specifically on all of the problems you have observed your spouse struggling with, you could say, “Dr. Jones is sending you for these tests – he wants to make sure you haven’t had any mini-strokes.” The importance of early diagnosis and treatment cannot be overemphasized. Remember my experience – Sid’s incorrect diagnosis and wrong medication worsened his condition – we lost two years.

The second speaker was a gerontology counselor and her topic was ANGER. We have, of course, discussed ANGER ISSUES   here many times – what makes us angry; how to find better ways to cope with it; how to prevent situations that make us angry. Although the subject of our anger has been interspersed through many blogs and message board topics, the conference speaker organized and condensed it into what causes it, how to diffuse it, how to deal with it, and what to let go. Check in on Monday for a complete Blog on her anger solutions.

The final speaker of the day, and by far, my favorite, was a breath of fresh air. She was a “senior” woman, a former school teacher, whose years of caregiving for her Alzheimer’s afflicted mother-in-law and father, morphed into her current career as a director of program and dementia services, Alzheimer’s instructor,  support group facilitator, writer, and member of many Alzheimer’s related boards.  Instead of the usual “RAH, RAH, RAH, LET’S HEAR IT FOR CAREGIVERS, LET’S GET UP EVERY DAY WITH A SMILE, LET’S BE POSITIVE ABOUT CAREGIVING” speech, she sat on the presentation table, spoke quietly (i.e. in the Mr. Rogers style), with dignity, passion, and humor about her caregiving experiences. Of all she discussed, the subject matter that touched my heart the most, and the one I want to share with you, was how to allow the person with AD to flourish.

Our spouses were engineers, technicians, doctors, pilots, accountants, and homemakers. Although they are no longer able to engage in those careers, the long-term memories and love of what they were and were able to do, often remain. Our speaker told of a woman who was a master quilter, and although no longer able to match and organize quilting pieces, was able to cut cloth with direction, and somehow, had not lost her ability to use a sewing machine. Quilting friends gave her pieces of cloth to cut and sew. Her eyes lit up at her accomplishment. The quilt was on display at the conference table. The eyes in the audience filled with tears.

Our speaker told us of another woman whose short-term memory was completely gone, as is the case with so many of our spouses. But her long-term memory remained in tact. She loved to recall a time and place in her childhood when she played with one of her siblings. She painted a brightly colored picture of flowers in what looked like a meadow, depicting that time and place in her memory – also on display for us to see. As her disease progressed, she continued to paint pictures of that same place, but the bright colors were replaced with stark, dark trees. (If you missed the Blog on the self portraits by an artist descending into Alzheimer’s Disease, click here.)

So the message to us was to allow the AD patient – in this case, our spouses- the opportunity to revisit the long term memories, and use the amount and type of creativity they still possess, to express themselves. If your wife was a wonderful cook and baker, she may still enjoy helping bake a cake, even if her ability is limited to pouring the water into the batter with your assistance. In the case of my husband, who used to be a technical whiz, I leave him to spend hours figuring out how to put together a stereo rack. But when it is finished, his sense of accomplishment and pleasure in having completed the task are worth it.

In developing a place of comfort for our loved one with Alzheimer’s Disease, a place where they can feel calm and enjoy the memories and abilities they still possess, we will have reduced our own stress, and maybe found a place of comfort for ourselves.

I found her message so much more helpful and affirming than the “cheerleading” speeches I have heard. Others who attended may have felt differently, but that is my opinion.

She also recommended a diverse selection of books, not all of them specifically related to Alzheimer’s Disease. Many are just “good reads” with life affirming themes. I will list them here, with a link at the bottom of the list to purchase those that interest you.

1. Aging With Grace: What the Nun Study Teaches Us About Leading Longer, Healthier, and More Meaningful Lives (Paperback) – David Snowdon

2. Life Worth Living  by William H. Thomas –  “In 1991, Thomas decided to try a different approach to life for the 80 residents of this upstate New York facility-an approach he calls the Eden Alternative. Motivated by a desire to enrich the home's physical and social environment, the staff introduced hundreds of indoor plants, 80 parakeets, dogs, cats, and other living things to share life with residents.”

3. The Validation Breakthrough: Simple Techniques for Communicating with People with 'Alzheimer's-Type Dementia' by Naomi Feil, Vicki De Klerk-Rubin, and Vicki De Klerk-Rubin

4. What’s Happening to Grandpa?  by Maria Shriver and Sandra Speidel

5. Water for Elephants   by Sara Gruen – “Jacob Jankowski says: "I am ninety. Or ninety-three. One or the other." At the beginning of Water for Elephants, he is living out his days in a nursing home, hating every second of it. His life wasn't always like this, however, because Jacob ran away and joined the circus when he was twenty-one.” The book is told in flashbacks by Jacob as he recalls his colorful life.

6. Celebrating the Third Place – by Ray Oldenburg –“Sociologist Oldenburg (The Great, Good Place) offers a compilation of essays on those places in America "where everybody knows your name." What Oldenburg calls "the third place" is different from home and work (the first and second places respectively) it's somewhere people can relax in good company on a regular basis. In this collection of 19 essays, proprietors and patrons of those third places describe how their establishments came into being and what exactly gives them their appeal.”

CLICK HERE to enter Joan’s Amazon Store – type in the name of the book in which you are interested.

I will write a short update late afternoon tomorrow to let you know how the Memory Walk went.

Feedback to joan@thealzheimerspouse.com

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