Hi Rose,

I am going through this right now with my mom who has Alzheimer's. She is moving into a small, private, residential home TODAY. I am in Seattle; she, my dad, sister, and large extended family are in Denver. My sister and I have been a great tag team; me doing research on the phone and internet, she following up on the ground. Together we found what we hope will be a good place for our mom. It is a home in a suburb near where my folks live, so it will be easy for Dad to visit. There are 6 residents, all women with Alz, and 3 staff always on duty. The house has a nice backyard with a vegetable garden, and a park nearby - they insist on daily exercise. Experienced in dementia care, they will take care of Mom until death. It costs close to $4000/month; we can manage that for about 2 years, but are moving ahead to qualify for Medicaid. We are moving her now because it has become too difficult to care for her at home (my dad is both guilt-ridden and filled with relief), my sister has been bathing her; he has been unable to keep her in Depends. I am on my way out to spend some extended time with my dad as soon as I can get myself ready and on the road.

In the meantime, I have been doing some writing for a local non profit who are raising funds for Parkinson's-specific long term care. Consequently, housing needs for PD/and/or/dementia care are on my mind a lot these days.

The non profit has decided to build a high-end, beautifully designed facility that is institutional with a "family" feel; it should be wonderful. But, as I pointed out to the board members, I would never qualify to live there because of cost ($5-$6,000/month), and they do not plan at first to take Medicaid clients.

Money is a problem. I don't know what I'm going to do as I decline. It's been 11 years; I feel very comfortable living on my own, but I don't know how long that will last. I have no answers, except that I will take things as they come and something will emerge.

But that is not generally a good long term planning strategy. Housing for PD people becomes more challenging as our population becomes younger.