I discovered that there were five approved treatments to choose from but none of them could actually cure the disease. All they did was to slow down Alzheimer’s progress for a period of time from eighteen to about thirty-six months, and even that was ‘flexi-time.’
Our geriatric neurologist recommended that my husband take meds for the early stages but in fact, when she eventually diagnosed dementia, probably Alzheimer’s, my husband had been forgetful for quite a few years and although I was aware of the fact that something was not right, it took a long time to persuade his doctor as well as everybody else, as he was so smart. In fact, years had gone by and he’d managed to cover it pretty well, playing bridge and going for long walks without getting lost.
Once he started taking the drug, I asked the doctor how she knew when to take him off the drug? Well, she didn’t, so she kept on writing out prescriptions., insisting that if we stopped, my husband might become worse. There was no definitive test.
I would imagine that taking someone off the drug involves the caregiver’s inherent ability to take risks as he/she is the ultimate decision maker. But, this might create guilt in that person’s mind. As there is no clear indication as to when to stop meds, I learned as much as I could about the disease and about Exelon and couldn’t help wondering how two people in my family could have contracted diseases like Schizophrenia and Alzheimer’s, both illnesses without definitive tests for diagnoses and both without cures.
With hindsight, I think that the decisions I made with input from my children, were good ones and my husband had quality of life. Of course he knew that he was not well, aware that he forgot far too much for someone with his sharp mind. The things that he had left by this stage and the ones that played a large part in his life were classical music, the outdoors and his family, who visited as often as they possibly could.
It seemed important to him to have company even though he didn’t speak much. He needed to be touched and hugged and spoken to slowly and gently and most of all, he needed tender loving care. We all need love, don’t we?