Why haven't we figured out how to support people suffering with dementia & alzheimer's?
In this day and age we can accomplish almost anything with our smart phone…. yet there is nothing for alzheimer's patients and their loved ones faced with this disease.
As a woman who runs a national nonprofit that exists to serve people in crisis - I am frustrated.
As a daughter who's mom is being taken away from her by dementia - I am frustrated.
As a daughter of a father who is giving every last ounce of himself to help her - I am frustrated.
Everywhere I go I hear stories of people suffering, just like me, with a disease that is taking their parents away. They all say the same thing. They all feel helpless. They all are isolated. How is that possible? How are we failing so miserably as a country… again!!!
Why in this country can we not figure out a way to help patients and their families through this disease. In this day and age, with the sophistication we have in services and care… why are so many people alone?
More than 5 million Americans are living with alzheimer's and that number is predicted to increase to 16 million in 2050. It is a disease that kills more Americans than breast cancer and prostate cancer COMBINED...for goodness sakes!!! (http://www.alz.org/facts/)
So why in the heck is there NOTHING for the people suffering through it?
My father complained to be that he had tried. He had gone on the national alzheimer websites and he wasn’t able to find anything of value to help him. I didn’t believe him, so went to prove him wrong. After 3 hours of web searching I was defeated, more isolated and beyond frustrated. How could such a BIG problem NOT be addressed?
Yes there is research being done (which is critical).
Yes there are searchable databases on these national websites - but when the top memory care facility on their list happens to be a place I have visited that was so depressing, dirty and horrible, the lists lose their value.
It is like we are stuck in the past when “nursing homes” were where you had to go if you had no money and everything else had failed. Why is this the model now? Why is this country not full of exceptional memory care facilities - as it is cancer centers? Why are there not so many options of great places to choose that the choice is the burden?
I think my greatest frustration is that my family is in a position (thankfully) that we can actually afford good care for my mom - we just can't find it. Really we can't find it... and we are trying!
So national alzheimer's nonprofits... you should be ashamed. You are spending millions of dollars and are not serving anyone.
And I have a box to stand on... I have some skin in this nonprofit game... and you should be ashamed.