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Best laid plans for long-term care

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For someone who has dementia, it seems almost cruel to keep moving them into a new living situation. In the past six months, we have moved my mother five times. This was not intentional, of course. It is a symptom of not being prepared. As her children, we've known for the last couple of years she was having serious problems with her memory. And, as dutiful children, we tried to keep her in her own home for as long as possible. But we did not make plans for the inevitable day when my brother could no longer care for her, and she would have to move out of her home in Florida.

First, she moved in with my sister, who lives in Ithaca, N.Y. After three months there, it was clear that my sister couldn't care for her and work full time, so we moved her into an assisted living facility nearby. After a month there, they kicked her out, because they were not set up for someone who was considered a "flight risk." They have no bracelets or door alarms for the person who may walk outside and keep walking. One afternoon they found her sitting in one of the staff's cars (a car that looked very much like my sister's), all ready to leave. They felt she had to move immediately, unless she was under a 24-hour watch.

My sister had the unenviable job of moving her into a nursing home nearby, where she stayed for exactly one week and one day. During that week, she asked each of us who called her why we put her in jail, and why she couldn't go home. Nurses told my sister it was best for her not to visit — my mother was too angry with her. One day when my sister called, she was in her room ripping up pictures of her. They put her on an anti-psychotic and sedated her. I got a call one day from the director of nursing warning me that she was writing checks to the other residents as payment to get her out of there. My mother has trouble with her memory, but she is with it enough to know she didn't belong there. From listening to the moaning and noises in the background while talking to her on the phone, we immediately realized that she was right.

But also realizing that none of us are equipped to care for her day and night, we didn't know where to move her next. We started looking for an alternative after her first day there, but it's not a simple process.

We decided it would be best to move her to New Hampshire. My mother knows a lot of people in the North Conway area because she lived and worked there for over 20 years. And my younger sister and my brother both live there, so she has two children to help out.

Fortunately, we thought to call Diana, a dear friend of the family who lived across the street from us growing up. She agreed to try to care for my mother while we applied for Medicaid to get her into a long-term care facility there. Nursing homes are so expensive, her income from Social Security won't begin to cover it, so we have to apply for Medicaid to fill in the rest of the cost. But you can't live in one state and apply for Medicaid in another. And some nursing homes won't admit you until they know you qualify for Medicaid. Kind of a Catch-22, if you ask me.

Diana has done us a huge favor by taking my mother into her home, feeding her meals, doing her laundry, and taking care of all of her needs, including social interaction. That is not always easy with someone who forgets where she is, and why she can't go home. Diana's patience is amazing. She knows just what to say to keep Mother from becoming argumentative or upset. I don't know what we would have done without her these past few weeks.

Since Mother is now a resident of New Hampshire, I completed the paperwork necessary to apply for Medicaid. I expect to get her on a waiting list for a nursing home in that area that is much more suited to her needs.

Just as things seemed to be coming together, my mother had a stroke last week. Diana heard a loud bang in my mother's room, and went in and she had fallen onto her back and hit her head. She knew immediately she needed an ambulance.

It's still too early to know what the doctors will recommend after she stabilizes. They do know that a main artery coming from her heart is supposed to be the diameter of a ping-pong ball, and it's the size of a pencil. But apparently she has no other blockages, and she's had no more strokes since that first one, which is a good sign. She can't quite sit up by herself. The stroke affected her left side, and although she's not easy to understand, she can still talk, and she can move her left arm and leg. My sister and brother have spent countless hours at the hospital, and Diana visits her daily to try to feed her. My sister called two days ago to report she had eaten solid food for the first time since the stroke. That was such a relief I broke down and cried when she told me. I didn't realize I had been so worried about it. My mother has a living will, and one of her directives is no feeding tubes.

Since my mom is on Medicare, and has supplemental insurance through Blue Cross Blue Shield, we're not worried about medical bills at this point. I just wish the process of getting her admitted into a nursing home or long-term care facility that meets her needs was as simple.