Aug 23, 2012

National Plan to Address Alzheimer's, Alzheimer's Association Town Hall Meeting

I went to the meeting for one major reason. I wanted to learn how Alzheimer's caregivers where feeling and thinking about this new plan. As it turned out, this was by far the best part of the meeting.

By Bob DeMarco
Alzheimer's Reading Room


National Plan to Address Alzheimer's, Alzheimer's Association Town Hall Meeting
Now that I am a free agent of sorts, I can do anything I want, whenever I want. For eight and a half years I was the primary caregiver for my mother Dotty. Dotty went to Heaven on May 25, and now I am free to do as I please.

On Tuesday, I attended my first ever Alzheimer's Association Town Hall meeting right here in Delray Beach, Florida.

The focus of the meeting was the National Alzheimer's Project Act.

I went to the meeting for one major reason. I wanted to learn how Alzheimer's caregivers where feeling and thinking about this new plan. As it turned out, this was by far the best part of the meeting.

It was also a bit heart wrenching.


Subscribe to the Alzheimer's Reading Room
Email:

As it turned out, the meeting was running late so I decided to listen rather than talk and put in my own input.

Right off the bat we heard from Laura Jones, a woman whose husband was diagnosed with Alzheimer's at the age of 50. At the time her daughter was three years old.

Diane C. Lade, of the Sun Sentinel described what Laura had to say this way,
Laura was eventually forced to move her husband to a care facility. In the past year, Jones said, she's lost her job after recovering from a heart attack, dealt with her husband being hospitalized and temporarily placed in a nursing home, and watched her daughter flounder in school due to the emotional trauma.
Laura in a clear state of angst went on to describe how no one in her daughter's school knew what to do, and they could not offer her any help. Nor, could they refer her to a place that could help. Her point was they don't understand Alzheimer's, and they are not prepared to deal with it.

We do have articles here about children on the ARR, and you can find those articles by searching our knowledge base of 3,800 article by using the search box on the right hand side of each webpage. You could start by entering the word children into the search box.

I am not sure what the state of our schools are nationally in dealing with Alzheimer's. Can they help the children? Are they equipped to help the family? I now realize that we need a real effort to get schools and their personnel educated about how Alzheimer's can effect a family. We need real educational programs.

If you know of any programs that are doing something for children that are being touched by Alzheimer's or a related dementia please let me know.

For the most part the caregivers that spoke talked about the lack of funding for respite care, and the total lack of services unless you are poor.

One woman mentioned that she and her husband had worked and saved for 40 years and they were slowly but surely going broke. She mentioned that she might be able to get help when she is down to $2000, her home and a car. In others words, once she is broke they can get assistance from the government. Meanwhile she could easily end up broke and homeless. She was not a young women.

Imagine two people save wisely and pay taxes for 40 years and then one of them ends up nearly destitute. It is a sad state of affairs.

I learned via a handout that there are about 998,684 caregivers in Florida. Just in the state of Florida. I was tempted to ask the head of the southeast chapter of the Alzheimer's Association, Ellen Brown, what percentage of those caregivers attend a support group meeting on any kind of regular basis?

I already know the answer. Not many.

I recognize the value and importance of support groups, however, this proven model of help and care does not work effectively for caregivers in the Alzheimer's community. It has to be modified, improved, and made to "work" for caregivers. I intend to focus on this issue. In fact, I already am.

A few politicians spoke. One really stood out. Mark S. Pafford. This guy understands Alzheimer's and related dementia. He spoke with great passion and I believed every word he said. He understands the plight of the Alzheimer's caregiver and their families.

Near the end when the caregivers had a chance to speak, representative from every major elected politician in the state of Florida came up to the front of the room to listen.

I looked at their faces very closely. I did not see many of them shaking their head, like in disbelieve. They did have a serious look on their face. So serious that I couldn't help but think -- they can't wait to get out of here.

We have a long way to go.

The meeting really told me what I already knew. It is going to be up to us, to take care of us. We won't be receiving much if any help from the government.

In case you didn't know this. The funding for this year's National Alzheimer's Project Act has not yet been approved. It won't be approved before next March. In other words, the $100 million for this year has not yet happened. And quite frankly, it will likely be scaled back, or might not happen at all.

Your comments are welcome below.

Bob DeMarco
Alzheimer's Reading Room
Original content Bob DeMarco, the Alzheimer's Reading Room