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Giving care and letting go: reflections on an aging parent

As March winds down, I feel spring ease into my soul. The winter's search for a diagnosis and treatment for my father's health issues is finally over. His symptoms were so similar to dementia, and with every test that was run, my fears increased. Was this an inevitable spiral downward for him? Would he lose all moments of clarity? It was terrible to witness his confusion, his loss of bladder control, his inability to walk, but I hung onto the hope that the doctors would be able to find a cause. There were trips to the emergency room, admissions to the hospital, MRIs, MRAs, EKGs. Nothing showed a current health problem. And yet, something was going wrong, terribly wrong inside of him. Finally, the neurologist ordered one final test. It would determine if he had a spinal fluid leak which could be causing a build-up of pressure around his brain. For this, he had to be admitted to the hospital again, and I worried about his weakened physical state. Would the test be too hard on him? Was I asking too much to find some answers? I talked with my husband late into the nights, called my siblings, looked for advice and strength from my friends. I asked my father what he wanted to do. He said we should go ahead with the test. It meant we would have to celebrate his 85th birthday at the hospital, but was OK with that, too. When he was wheeled out of his room for the spinal tap, I felt drained. The results took days, very long days it seemed. But finally, we had some answers. He had hydrocephalus - fluid on the brain - and there was an operation that could relieve the problem.

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The cruelest thing of all

I came upon this blog rather late, but like anything worthwhile, it's just as true now as the day it was written. My wife's mother is going through the same thing with her mother, though in her case it is a failing heart that is the cause, and it isn't going to get better. Dementia is a set of symptoms rather than a specific disease. Everyone knows about Alzheimer's, and how it destroys memory, but it is not the only thing that can do that. How godawful wrong it is to spend a life learning a thing or two, having some sense of who you are, and become comfortable with who you are as well as who you are not, only to have it all taken away in the end. My own mother also had congestive heart failure, but comes from stock that does not die easily, so she lived for a decade longer than she should have. She still recognized me, thank God, but, toward the end, could not remember the four grandchildren I gave her. She withdrew into her own little world, half deaf, unwilling to wear a hearing aid, so you had to shout to be heard, which makes any kind of real conversation impossible. I didn't have anything resembling a real conversation with my mother in the last ten years of her life. It is hard to express how difficult that is, or how guilty you feel for not having the guts to go see her as often as you should and have to take another bite out of that big reality sandwich. What it must be like to love someone with full on Alzheimer's is something I can only guess at. You would watch them slowly slip away, sometimes come back into focus for a bit, reminding you of the person they used to be, and then drifting into the shadows again. For everyone concerned, it has to be the cruelest disease of them all.