The gift of listening, the gift of support

by mymothersbrain

My mom loved the animals at my cousin's New Mexico ranch, including this horse named Scooby.

As 2010 spreads out before us, an expanse of days to be filled and tasks to be completed, one of the important ones for my family is that of finding affordable care for my mom. My sister cannot realistically keep on juggling Mom and work every day for weeks on end. We’ve run the numbers and with Mom’s meager income and our limited finances, there is no way we can pay for more than a few hours a week of home care; it is impossible. And we just aren’t ready to broach the idea of residential care.

During the two holiday weeks John and I spent in El Paso, one of the goals we had was to work with my sister to tackle this issue of care. The Alzheimer’s Association offices there had shut down for the holiday. They’d forwarded their calls and when I dialed their number, someone in Chicago answered. Naturally, I was dismayed because what could someone in an Illinois chapter tell me about resources in West Texas?

And here, I learned something valuable: though I’ve never sought help from this agency, they actually give a damn about those of us grappling with dementia, regardless of where you are. First of all, I was able to speak to a living person. Secondly, she was patient and spent some 20 to 30 minutes giving me numbers of adult daycare centers in El Paso that might accept dementia patients whose only method of payment is Medicaid. And finally, she said she would email me a list of residential care centers in El Paso, just in case, and within 30 minutes, she actually did it.

Fortunately, it only took a few phone calls to find that there is a daycare center near my sister’s work place, and staff will pick up and drop off clients anywhere you ask. The facility has an RN on staff, they accept Medicaid clients, and the young man who took my call was knowledgeable  and also spoke to me for nearly a half hour. When I asked about making an appointment to take my mother in for an assessment or simply to see the place, he said, “We don’t like to make appointments because we want you to feel free to drop in and see us as we are at any given time.”

Excuse me? After the initial shock of realizing that he was issuing an open invitation to simply drop by any time we want because this is a place that feels so secure in the quality of its environment/care/staff/food/activities, I wanted to weep with relief. After all, where Mom is concerned, we’ve gotten used to calling agencies and doctors and leaving messages that either are never delivered, or simply don’t seem to merit a response. I’m not exaggerating: I’ve made calls that have never been returned. To be fair, Mom’s neurologist — the second one we tried — is very, very good about calling us back. I won’t get into just who we’ve had problems with, because frankly, I feel like we are at their mercy. It’s akin to having a small child in a school where you don’t like the teacher but you can’t move your kid and you can’t switch schools so you can’t say anything too bad about the teacher — you get my drift.

Today, I’m back at home in North Texas, but my sister dropped by the daycare with Mom during the lunch hour and was so pleased she called me immediately to say, “I really like this place!” The proprietor gets it, understands what we are dealing with and said that helping people with dementia is her passion. She also had some suggestions for ways to make better use of Mom’s benefits.

To say that we are relieved about the possibility of viable care options would be an understatement. In Spanish, there is a saying for these dark moments when we can’t see beyond the problem in front of us, when there seems to be no way out of a critical situation — Se me cierra el mundo. That’s how I’ve been feeling regarding my mother, as if there is no way out of this affordable care problem. But let me just say here that on the last week of December, there were two people who took the time to patiently listen to my questions and my description of my family’s needs, and they offered their support. And whether or not this daycare turns out to be what we’re looking for, these two people helped me see the possibilities for getting through this really difficult time, and for that I’m truly grateful.

I’ve posted it before, but should any of you need it, here, again, is the Website for the Alzheimer’s Association. This is an invaluable resource: www.alz.org

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