Ah, Yes, To Just Go Gently

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.

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.

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.

Oh to Live Forever!

Our desire to be immortal beings has been with us throughout recorded history, and probably long before. It pervades religious premises, piques philosophical debate and prods science and medical research. Currently there are several scientists as well as philosophers who believe immortality might be possible within decades. Just think of it! In thirty years we might live forever! That would mean that most of the current baby boomers will all be in their nineties and living, well, perhaps you could call it living ,or maybe mindless existing, in nursing homes. And if we live forever, we will have the equivalent of four or five large states filled with nursing home patients. . . forever! Because the reality is that there is no evidence that dementia will be conquered within that same time frame.

Who is going to support this industry? While I am sure that the reality of living forever will not take place in thirty years, scientists and the medical machine have brought about unbelievable progress in extending life. Transplants, grafts, stem cell research, eugenics, and a constant assault of new immunizations lull us into believing that longevity is now a right and even more, an entitlement. Millions now believe it is the responsibility of our government to insure that we will live and that our living will be financed by a government program. Our country is already collapsing under the gigantic burden of entitlements, socialized pensions and health care costs. Our country is already bankrupt. Many of us will live into our eighties and the truth is that over half of us will lose our minds to a form of dementia. We will not be able to give even a garbled answer. Old age and dementia have always been partners. We cannot leave the solution to our children!

Making Memories

From Frankie Laine to Keith Urban the phrase, “Making Memories,” has become indigenous to both our hearts and lives. It titles photo albums, scrapbooks, videos, blogs, even retail stores. Making memories is almost synonymous with “making life.” Have you ever stopped to think that the victim of dementia or Alzheimer’s can no longer make a memory? In David Shenk’s wonderful book, The Forgetting, he makes this thought-provoking statement, “It takes memory to make memory.”

My mother adamantly denies that she has lost her memory. She prefers to say that something has confused her. Without memory, she becomes a creature without a name, a place, a destiny. She thus holds on to what scraps of thoughts or feelings that remain in what I call her “core.” This probably agrees or disagrees with Jung or James or Hebb or one of those other memory theorists guys, but today I get to say what I am thinking.

Mom’s survival within an extremely large country family centered around her having a sweet demeanor and always being an appropriate minister‘s daughter. To anyone who visits her today, she will smile sweetly, ask how they are doing and if she can get them anything. Visitors would never believe that it took both my brother and me to get her back into the house last night because she insisted that she was going home. She was tenacious, combative, without memory, and sadly, or perhaps, fortunately in this instance, unable to make a memory.

When Ralph Waldo Emerson descended into the ruins of his dementia, he declared himself to be “a man who has lost his wits.” As I saw my Mom fighting to stay outside in the frigid cold, determined to find her Mother and her home, she remained in her own thoughts, and to her core, as the “woman who NEVER lost her wits.” I will hold this memory of my mother until I have no more memories of my own.

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Then There's My Own Window. . .

I am the oldest child, sometimes a control freak, mostly because I find that life is often so chaotic as to need my help. Trying to force my Mother into my reality has been a miserable failure. As she entered the third stage of her Alzsheimer's journey, I wanted her to be as "normal" as possible. There is no "normal" in this room. I would correct her constantly. "No, it is Thursday, not Saturday." This has been your home for 63 years, so quit trying to "go home!" "No, you can't go to see about your Mom. Remember? She has been dead for 22 years!" Frustration, stress, anger and sometimes yelling. I am not only reluctant as a caregiver, I often lack nurturing skills.

At first, when she asked why she was so confused, I would try to explain about Alzheimers and its consequences. She hated the word. "I am not crazy," she would hiss. Like so many of our elderly, she had learned that Alzheimer's was synonymous with madness and craziness. Her generation had dealt with strokes, heart attacks and cancer, taking their loved ones away after short intervals of home care and hospitalization. Alzheimer's meant a dark place at the back of the geriatric wing of the state mental hospital where Aunt Mabel had died.

Only recently have I broken away from my own obsession with normalcy and agreed to live in Mom's room of total chaos. My brother helped me, perhaps shocked me, into coming to grips with this. He explained, " If Mom will go to sleep because she thinks that I am her husband, then I will become my Dad just to get her to calm down. I need my own rest."

Okay, Mom. I will let today be Saturday. Do you feel like going for a drive?

Looking Back through Childrens' Windows

The relationships within our family have never been healthy or secure. My Father was an extremely narcissistic man, controlling and often threatening or abusive. Mother avoided crossing him at all costs and never entered the room of one of the children’s
“disciplinary engagements,” usually one of the back rooms where Dad would leave physical marks as he taught us a lesson designed “for our own good.”

Dad forced each of us to compete or bargain for favors, money, privileges, and in effect, for love. As the four of us moved into adulthood and now into later life, little healing occurred. Those “negative resources” (see my last blog) carried through into out own marriages and family dynamics. As we have been forced to return to the scene of our original family, the anger, resentments and the old conflicts rise to the surface in almost all of the sibling interactions. The illness of both Father and Mother have exacerbated some of our infantile behaviors, and wounds continue to weep. The result: A paralysis in the productive planning of both parent’s care. We stumbled through Dad’s death and burial with hard feelings and distrust, but as I look into Mother’s last room, her needs are becoming more and more critical. Two of us can no longer meet the needs and something has got to be done!

I have not been able to find a source, in books or in articles, that offers a solution for this painful situation. One author declared that “recognition” of the problem is meaningful. I have not found that this gives me any more sleep. There are recommendations for finding support groups. When is there time to do this? Yesterday I read that a family conference is extremely helpful in defining roles and ways to help with the care giving chores. I wish that author could have attended just one of our family conferences! The four of us agreed on one thing---that we will never have another conference!

I am going to discuss with my brother the possibility of Elder Mediation as a way to engage the two “outside” siblings in Mother’s care. I wish there were some way that this could be required, but there is no law that demands that all four children help feed or bathe Mother. As long as Mother has adequate care, the law could care less.