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Learn from the first-hand experiences of others.

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Learn from the first-hand experiences of others.

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Learn from the first-hand experiences of others.

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Learn from the first-hand experiences of others.


people found Susette's experience helpful.

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In 1996, my mother fell and cracked her head open on a low-lying brick wall. After several months of hospital, therapy, and assisted living for the memory impaired, I took her in to live with me. It lasted nine months. At some point, her improvements stopped, and I realized she was getting worse — wandering the streets, riding buses who knows where, knocking on strangers' doors, and starting to get violent. Her neurologist had diagnosed dementia due to a long-term seizure disorder (epilepsy). I'd tried outside adult daycare and an in-home assistant, but neither worked. When a man across the street brought her home one day and yelled at me, I knew I had to find a more secure place.

When she lived in an assisted living facility before, she'd lived near the hospital where she'd been given physical therapy. Her memory was blank then. She didn't know where she was or why she was there. When my sister and I started seeing new bruises every time we visited, we got worried. Mom said her caregivers were hitting her, but they said she was falling and hurting herself. We took her out.

After nine months with me, I didn't think that would happen again. To ensure that it didn't, I looked for a more open, but still secure memory care living situation. We found a place with two houses next to each other, with locked front gates and an open gate inside that joined them. Mom and I both liked it.

A few days later, Mom walked out of the locked front gate behind an assistant, who couldn't stop her. She walked through the streets in her nightgown, crossing against red lights, demanding that someone save her from the Iranian planes flying through the air.

I was teaching, so I called my sister-in-law, and she called the police, who drove around until they found my mother. I took her back in with me and looked for something different. After a couple of tries, I found a more secure memory care facility that she liked.

The Problems With Finding Good Memory Care

Most of my problems with finding a comfortable memory care facility related to meeting my mother's needs, not registration or the quality of care. Here are some of them:

• Security - There was a clash between her need for security and her need to escape. Those homes that were too locked in scared her, and she reacted with violence. At facilities that weren't secure enough, she escaped and got lost, risking injury.

• Financing - We had to sell Mom's house when we moved her from Utah to California. That gave her income that could have been inheritance for us, except that California mandates the use of one's own finances before Medi-Cal kicks in. This caused consternation with some of my siblings.

What I Would Do Differently

Often, there are certain necessary transitions. In our case, some of those transitions were medical, some involved acceptance that Mom was not going to heal, and some of the adjustments related to Mom's own fears. Here are some things I would have done differently, had I known:

• Looked for a home with someone she could identify with, someone who had religion (which was important to my mother) or other interests in common.

• Cautioned the home not to let her watch news on TV. For a person with dementia, that's the worst entertainment she could have.

• Promised to take her out for one of her favorite activities each week if she stayed there.

My Advice For Others - Things That Worked

In addition to the above, here are some things that worked well and that I would highly recommend to anyone as a general practice:

• Keep siblings involved with every major decision (It's good bonding). Give them periodic progress reports. Encourage them to communicate directly with the parent, if possible.

• Take the time to get your parent oriented if you move them to a different city. Drive around to show them where things are. Help them fill in the gaps between where they were and where they are now.

• Don't upgrade their living conditions if it means leaving old, familiar things behind. Do fix them up with a room where they're surrounded by objects that they love, things they've made, or been given.

• Give them time to bond with their new housemates and caregivers. Don't take them out every day. Instead bring food, sit down to dinner with everyone, and tell them the food is from your parent, so housemates can praise him or her.

• Have siblings visit, or take your parent out on occasion so they still feel surrounded by family. This is important for your parent's well-being and to lighten your own burden. My siblings were really good with this.

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