Even though I have shared my beliefs about how the dementia journey should end, I do not feel total despair. I am a realist. Problems are there to be studied, to build character, to be resolved. It is not from depression that I speak, although depression creeps in on late Friday nights and brings tears, for myself, but also for my Mother. Her journey and mine have always been intertwined; our rooms are connected. Within her last room, she now has no choice, but I want a different door to enter, and to exit. One of my favorite writers has stated that the test of our civilization will be in how we take care of our loved ones in this catastrophic epidemic. I hope I am learning. I am looking for a another favorite writer to say that salvation does not come from the drive for immortality. This I have learned in the past ten years.
The quest for immortality has produced unspeakable health gifts while giving us insufferable disabilities. We have altered the length of our time on this earth, but those bonus years at the twilight of our lives have not made us happier or more productive. I would ask: Please allow those of us who choose, to leave this “manufactured time” with dignity and grace.
CHOICES
Oh, Mr. Dylan Thomas you express
An often quoted point of view, defiant, resolute.
So strong, your life-force words, I must confess
Could stir the gentle soul to self-refute.
But death is not the enemy of life;
As winter snow is not the foe of spring and summer grass.
The marriage of grim reaper and midwife
Defines us all, continuums enmasse.
For some of us the light too swiftly dims,
Dark eyes no longer celebrate the singing of the sun.
No rage remains to quell our aging hymns,
Raw chants for home, the memories undone.
Is it not better then, to still the noise,
To close the painful vacancies when eyes no longer weep?
Should I become my mother, I will pray that God deploys
Some hands with love to give me final sleep.
Friday, March 5, 2010
Thursday, March 4, 2010
Avoiding the Last Room
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.
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.
Tuesday, March 2, 2010
About Those "Death Panels"
It is amazing how many people are horrified at the concept of “death panels.” It is as if we visualize some futuristic event that puts us on automated gurneys, surrounded by lines of masked practitioners in white masks who give us a shot at age 79 ½, and “send us on.” Our health care system has spoiled so many of us. We are lulled into a false sense of immortality by frequent visits to the doctor, antibiotics for every sore throat, CAT scans for abdominal pain and heart catheterizations for dizzy spells.
In the current debate on health care reform, many people are extremely fearful that insurance coverage will be rationed. It is unthinkable that some government official in cahoots with a government doctor could and would decide who receives what kind of health care. This rationing of services has become the political football known as “death panels.” None of us are able to access a database on private insurance claim denials. Most of us will not find reading Medicare guidelines on a snowy Saturday night a priority. Some of us would find horror stories in the “utilitarian approach” or the “utilization reviews” of the insurance industry. People are dying every day because “death panels” already exist.
The general public does not know that a geriatric patient with dementia may not be admitted to a hospital even though screaming in agony and praying to die. There will be a very long wait in the ER, so that a medical evaluation can be performed based on Medicare guidelines. “Pain” is not a Medicare diagnosis and if hospital x-rays do not reveal a broken bone, the patient may easily be discharged back home with a Percocet or a shot of morphine, no matter how ungodly the screams may be and no matter what the internal cause of the screams. The ER diagnosis will be “Pain, etiology unknown.” Medicare may not even cover any of the cost. If a patient with extreme dementia cannot tell someone what is wrong, and there is not a test to give a select diagnosis, the patient goes back home. I know this because the person screaming in the ER was my mother.
Health reform will only increase the insane bureaucracy of this system. The political winner of health reformation is irrelevant.
In the current debate on health care reform, many people are extremely fearful that insurance coverage will be rationed. It is unthinkable that some government official in cahoots with a government doctor could and would decide who receives what kind of health care. This rationing of services has become the political football known as “death panels.” None of us are able to access a database on private insurance claim denials. Most of us will not find reading Medicare guidelines on a snowy Saturday night a priority. Some of us would find horror stories in the “utilitarian approach” or the “utilization reviews” of the insurance industry. People are dying every day because “death panels” already exist.
The general public does not know that a geriatric patient with dementia may not be admitted to a hospital even though screaming in agony and praying to die. There will be a very long wait in the ER, so that a medical evaluation can be performed based on Medicare guidelines. “Pain” is not a Medicare diagnosis and if hospital x-rays do not reveal a broken bone, the patient may easily be discharged back home with a Percocet or a shot of morphine, no matter how ungodly the screams may be and no matter what the internal cause of the screams. The ER diagnosis will be “Pain, etiology unknown.” Medicare may not even cover any of the cost. If a patient with extreme dementia cannot tell someone what is wrong, and there is not a test to give a select diagnosis, the patient goes back home. I know this because the person screaming in the ER was my mother.
Health reform will only increase the insane bureaucracy of this system. The political winner of health reformation is irrelevant.
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