I am examining my own aging by looking through my mother’s window. For several years I have stared in the last room of her life, and too often, I have seen myself there. Many of us are experiencing a frightening view of our last years. In truth, it is not a pretty picture.
There are so many books and articles with premises that mask the horror of this disease. They do not emphasize the total loss of self, the fear, the paranoia that comes from losing all that has been known. Even God gets lost in this devastation. Writers insist on discussing dignity, quality of life and “providing meaningful activities”. The insistence on an idealized approach to the final stages of dementia can become an affront to a caregiver who puts on bibs, cleans feces off the light switch and wipes spit from their hair that was gifted from Mom or Dad while bending to put on their clean socks. There are not enough activities in any library to divert one hundred demands to “take me home to see my mother.” At 1:30 am in the morning the demand finally becomes a nightmare . . . and then a kind of hell.
Similar dramas are being played out in millions of homes as I write this, both in our country and around the world. I am sad that our generation has not made better plans for this colossal crisis. We must have believed that improved health and longevity would automatically transfer to brain function. I believe that the stress of caregiving may very well begin to alter the longevity table so applauded by the medical and scientific community.
My solution? I state the following in as gentle a way as I can. I simply cannot let my daughter feed me with pureed prunes. I will not be able to afford the cost of care that my dementia will require, whether by twenty-four hour personal care or by residing in a nursing home. The government will soon tell us that there is no more room at the Medicaid Inn. It is time to work for a plan that will allow us to control our own destiny. I propose that anyone who is at risk be able to access one of those glorious scientific tests that can absolutely determine the plaques and tangles of Alzheimer’s disease. If positive, that person should be given the right and support to humanely remove themselves as they approach the door of the last room.
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Your view of dementia is very real and authentic. The honesty that you share highlights the huge impact this disease has on the patient and the care giver. To suffer seems unconscious, but to care for someone with dementia seems very conscious and emotional.
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