Insights into Alzhiemer's Disease

I started blogging tonight with the intention of doing a book review on The Devil's Highway, but that will have to wait. I have too many thoughts in my head about my past week and all of the amazing things I have learned. 

The last three days for me have been incredibly busy. I have spent my days at Navy Pier in Chicago for an educational work conference for people working in long-term care and related fields. I have sat through 9 educational sessions over the past three days and I have to say, I have walked away inspired and excited about developments in my field (Dementia Care). Today I was privileged to sit through two of the best sessions of my experience. 

My first session this morning was all about taking the dis-ease out of Alzheimer's disease. We talked about the physiological symptoms of the disease and then the emotional, social, and spiritual "symptoms" of the disease, which make up the dis-ease (un-ease, discomfort). The speaker made 4 main points about the differences between the two spheres and then showed a video that I cannot wait to get my paws on. It was phenomenal. (Scroll to the bottom for a clip)

The Four Distinctions from Memory Bridge:

1. Alzheimer's Disease (AD) is a disconnetion between neurons in the brain (caused by plaques and tangles). The dis-ease is a disconnection between people.

2. AD occurs in the brain. The dis-ease occurs in the body- both individual and communal (i.e. family-body, etc.)

3. AD is physically painless (but the most feared disease). The dis-ease of it is profoundly painful (isolation, fear of loss of self, estrangement, etc)

4. AD cannot be cured. Dis-ease can be ended.

I strongly believe that it all stems from education. The more people understand the disease and how it will effect their loved one, the better they will be able to cope with it and have a more peaceful experience.

My second session today was a panel of people with Early-Onset AD (diagnosed before the age of 65). The individuals are a part of a support group through Rush University. They were incredibly candid, honest, and open about the effects of the disease, coping with it, grieving their futures. It was amazing to listen too and an incredibly profound experience for me. I actually knew a couple that was on the panel because they have a loved one at my facility. I was in tears by the end of their presentation. It was amazing and I feel so honored to have been there.  Here are some of the quote I jotted down from this session:

Regarding feelings about the diagnosis:
Bob "I decided to live with as much grace... at the highest capacity I can, for as long as I can."
Tom " I don't want to sit around and mope and feel sorry for myself. That does happen, but I want to have a purpose"

For why he speaks on AD:
Tom "It is better to give than to receive. That has always been my philosophy. I am a recovering alcoholic and I still run support groups for AA. It doesn't matter to them that I have this and I haven't messed that up yet"

About the future:

Tom: "I know what's coming. I don't know when, but I know what the outcome will be. I want to do the best I can and be the least burden on my caregivers and family"
Bob: "One day, it won't wait for me.

Advice for caregivers:
Tom: "Good Luck!" (haha) "I would honor what you are doing for me. Stay positive, seeing a smiling face will give me hope"
Barbara: "Distinguish people as individuals. Keep communication- even non-verbal. Smile"
Bob: "I pray for you. It takes a special-type of person to care for those individuals and I just think, What a job, and it takes such special people to do this type of care."

What an amazing experience.
Here is a clip from 'There is a Bridge' - just to give you a taste.


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