What is the scariest thing about AD?

2013.8.20 paintingWhat is the scariest thing about AD?

For me, it’s not really the disease itself.  Being around Mom and the Ladies of Assisted Living, I know that it isn’t always a tragedy – that it is possible to live with joy.

Possible that is, if you live in a supportive, nurturing environment.

And that is where I get scared.

Where will you go – how will you live? Who will take care of you?

Those are the terrifying questions, when you or your family see the disease emerging.

I am unlikely to live where Mom does – the Club Med of retirement homes.  I am more likely to end up in a Medicaid snake pit.

When Mom’s story first aired on KUOW, I got many nice comments but the haunting one was from a woman who was angry – not at Mom but clearly anguished at the plight of her mother – at the realization that her mother would never have the support mine does.

Her words tell it best.

“I’ll tell you honestly, this is upsetting to me and I’d like to tell you why and get some feedback from you.

My mom is now on Medicaid and all her financial resources were exhausted about four years ago.  We have tried our best to find the best care for her, however, I have nothing but disdain for the long-term-care business and the limited choices of destitute elderly.  My mom also cannot stand nor even bear weight so she is a two person/hoyer lift transfer.  Add dementia to Medicaid and non-ambulatory and you have the recipe for a long-term care disaster.

Six years of this and I cannot find a place for mom that makes my heart at ease.

I am heartbroken.  Not because of mom’s condition but because of her lack of care.  This is what upset me about your story.  It’s not so much the condition that is scary (as you pointed out) but being financially destitute and unable to find a great long term care facility.  Many dementia/Alzheimer’s facilities are geared towards memory care but are not equipped for people who need “skilled nursing”.  If only ‘skilled nursing’ facilities only had real skilled nursing!

Can you help?”


I was short on answers.  The sad fact is that the need is growing – exceeding the resources of the organizations designed to help.  But to start, support your local Alzheimer’s Association.







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