Over these last many months there haven’t been any words to write. The words I do speak go to the same friends, over and over again. And they, in acts of love and mercy keep listening to me. May God bless them for their patience and kindness.
The road of dementia is hard for everyone, whether in the trenches, helping a loved one in the trenches, or as a bystander who can’t figure out what to do.
In my case, as with many others in this country there is very little help available for three reasons:
- The lack of elder services in rural America, frustratingly compounded by living close to a state line where the few services in place can’t be accessed because they’re on the other side of the line. Twenty-five miles might as well be twenty-five-hundred.
- The federal laws of self-determination passed in 1999 meant to give elders a choice about where they live. It’s good, except for the people with advanced dementia or some other disease process that keeps them from making accurate or sound judgement about their condition and their care needs. These laws tie the hands of the families and friends who have (ethically and morally) to provide care, and puts many families into significant hardship and sometimes into financial disaster.
- The lack of physicians specializing in geriatrics. Old age is like a different universe– a different body, a different vocabulary, and different needs. Our country seriously needs more doctors who understand their elderly patients and who will work with those who care for them.
There’s got to be a better way. For someone like myself, with years of elder care management behind me the outcome is no different than for a person who comes into dementia care without a network, without resources, without experience. We are all frustrated, sad, and exhausted.
Twice in the last month a new question has come up. Who will you tell?
As I sat at my dining room table trying the explain the root of the problem to my sister-in-law the question came up. “How do we make changes in the laws that tie the hands of family caregivers? Who will you talk to?
And a former co-worker, a retired elder-care RN said, “I wonder how you will use your experience to help make changes? How can this terrible experience be used for the benefit of others. Where will you start, who will you tell?”
The answer is, I don’t know yet? Do you?
In the meantime I stay on the path. Doing the next thing, shaking every tree for help and resources, praying without ceasing.