Dear HBO and it's viewers:

I have been reading Beverly Bigtree Murphy's Web site about Alzheimer's Disease.

Here are some of the idea's I think need to be discussed, filmed and sent to Congress. These are not my Original Ideas but I have borrowed them from the above site because I believe they are worth re-stating!!!


THINGS THAT ARE NOT DISCUSSED ABOUT ALZHEIMER'S DISEASE, PATIENTS AND CAREGIVERS.

1. Improved home care services for patients and families (including reimbursement from medicare/medicaid) since greater that 75% of care is provided at home which equates to about 3 million patients and at least 3 million caregivers.

2. To honor the Care Commitment of those doing Home Care (including family members).

3. To Speak of the Amount of Home Care being done (greater than 75 % of patients who suffer with alzheimer's disease/related dementias receive their care at home).

4. To Honor the Human Essense of Our People in spite of this disease process.

5. To Understand that a Person with Alzheimer's Disease has the Right to die at Home if that is their desire.


All of these ideas are worth much more discussion!! We must bring these ideas to the PUBLIC OFFICIALS and People of Power! All Americans are people of Power. We must ACT now!!

Input?????

Hey out there,

Does anyone have anything to say about all this?

Comments, please!

I just watched the special that was on PBS & it talked about this. It also mentioned how Newt Gingrich & Maria Shriver are bringing it to the attention of congress. It was an interesting show. I would have loved to keep my mom at home with me till the end, but it wasnt safe for her & not enough care. I found that there just are not enough aides or people that can handle this disease properly. Even the ALF, some of the workers just didnt know enough about this disease. I had to go on the website & print out information for them. My mom devoloped contractures that even the dr. at the hospital didnt know about. They did xrays of her hand but never came up with a diagnoses, I told them it was a contracture. I feel that many, doctors included, just dont know enough about this disease. Why is that?

I have said before that the members of these boards know about Alzheimer's disease and the other dementias than 95% of doctors. This is especially true as it pertains to early onset AD, the symptoms of early stage AD, non-AD dementia, so-called mild cognitive impairment, and all the caregiving challenges.

People who have the authority to make decisions about patients and families dealing with Alzheimer's disease don't know enough about Alzheimer's disease. This includes doctors, nurses, long term care providers, people involved in services for seniors, employers, human resource personnel, adult children, politicans, and the well middle-aged and senior population. They all need to be directed to this website for immediate education.

Iris L.

I agree with you!

How to we educate the people who need educating?

Hi to All,

Any other input about this???


Hey HBO, are you out there reading???

Comments??

Hi to All,

Have any of you read this??

What do YOU think?

Lisa & Iris

The ignorance of the public is astounding. My daughter for instance. It took a "blow up" to get her turned around.

I am soo tired of hearing that I need to be with a geriatition because, they are more knowledgeable about "Old timers" disease!

Perhaps if everyone on all of these threads would step up to the plate and write congress

Go get um Mary!

That's the spunky woman I know!

This is only my second visit to this site. My first visit encouraged me and reassured me that I was doing the right thing for my mother. I know that she never wanted to be in a NH, she was very vehement about it. I was blessed enough to find 2 wonderful ladies who rotate caring for my mother at home, in her house. Mom can barely walk and can not take care of herself at all anymore. She has to be reminded to do everything (except eat what's placed before her!) She rarely talks and it's becoming just gibberish. But we just recently brought in a hospital bed so she doesn't have to do stairs anymore. The little that I've read already here, sounds promising that she will be able to stay at home as long as the aides can work with her. I know her local hospital now has a program for eldercare that includes good, old-fashioned housecalls! Seeing my mother's condition pick up speed has been, to say the least, heartbreaking. But I take comfort in knowing that there may be options out there where she can continue down this path in the comfort of familiar surroundings.

Dear Jefel,

Hello and Welcome to the AD Message Boards. I'm sorry to hear about your Mom but I am glad you've found us.

It's great that you have wonderful rotating caregivers for your Mom. It is wonderful when the person you love can be cared for at home. If your remember, years ago, most people spent the last years of theirs lives at home.

My Mom is home with us and I hope when my times comes I can remain at home.

You may want to post in the "Caregivers forum." There's lots of others like us out there to give you support.

Good Luck and keep us posted.