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.

JQD3TPXV2BP5

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.

Absence Does Not Make the Heart Grow Fonder

Two of my siblings disappeared from the dementia scene almost as quietly as Mom and Dad disappeared from reality. Without fanfare and with almost no explanation , they simply withdrew from the scene of physical care. They did, occasionally, make 15- minute visits to the home. When my father died, they entered into the middle of the drama,(we continue to stage two-day events here in the south), and one even led the parade. The irony is that when they discuss the “pitiful” situation of their parents with others, it is as if they are on the scene, performing daily care rituals. This has created some very harsh feelings within the family, as well as extreme stress on the two remaining caregivers. Unfortunately, this story permeates the Alzheimer’s landscape. A friend of mine keeps her ninety year old mother in her home. One sibling visits once a week and gives an hour or so of relief. Two others visit only occasionally, and give critiques on what should be done for Mother, mostly by telephone.

My own siblings choice or ability to separate themselves from this life shattering event tells something about family dynamics, perhaps a little about parenting and quite a lot about character. I could make a few lame excuses for my absent siblings, but I simply refuse. Their own rationalizations protect them so much better, many times teetering on the very realms of reason. All of you who have parents with this condition, and have siblings who act similarly, know exactly how I feel and what I think. Francine Russo has written a resource book for all of us who experience this very situation. It is called They’re Your Parents Too! You will find me in her book, the one who tries to control, the oldest child and the wisest!

Carl Jung called parents “archetypal forces,” the human influence that provides each of us, as adults, with positive or negative resources. Wouldn’t it be lovely if every parent knew what behaviors induced positive resources in their children? Even today, with counselors, self-help gurus, books, Oprah and Montel, parenting remains mostly a lot of trial and error. The errors can be devastating. My own parents created the grounds for a wasteland long before their dementia obliterated the landscape. Do not judge me as too harsh or casting blame, even though I am guilty of both acts at times. I will try to explain more tomorrow.

Making No Plans for the Journey

The journey into dementia started for my parents over 10 years ago. At the exact moment, and with various degrees of recognition, the journey into dementia started for me and for my four siblings. Both journeys have been their own kind of hell. My parents disappeared a few brain cells at a time, slowly, almost imperceptibly, without any awareness of what was happening, denying that anything at all was wrong. They wrote no wills, created no power-of-attorneys, refused to discuss death and funerals. And even when both became totally dependent on their children and on the medical system, my parents believed themselves to be coping and taking care of all daily activities. If continence of bladder and bowel counts for anything, then Mom and Dad were indeed, able to take care of themselves. Thankfully , both of them remembered the location of the bathroom, although we did have to tell Dad to turn left a few times. Dementia did not wait on my parents to realize their predicament. Dementia did not care about their lack of preparations. My Dad died two years ago without a single plan made towards his demise. I truly have spent hours considering the behavior of human beings who die without ever considering what will happen to their money, their property, and to the things that they buried or kept secret from their wives and children. It is as if they will not have to face a final passage. I am glad to be peaceful about whatever material things will remain hidden forever from the four of us. It is not so peaceful for all of my siblings.

After Dad’s death three of the children agreed that Mom had to have a power of attorney, whether she knew what this meant or not! Mother’s physician was generous in stating that Mother had the capacity to designate a power of attorney, a requirement in our state. An attorney was liberal in accepting mother’s shaking head and shaky signature as proof that she was aware that someone would, henceforth and until death, act in her best interest and on her behalf. and so the deed was done. With her signature on a durable POA and a health care POA, my youngest brother signed and agreed to this thankless assignment. I have never asked him how he felt about his appointment. I will say that this legal step became one of the first of many open wounds among the four of us. My sister’s husband wanted her to have power-of attorney. He even got his real estate license in preparation !

Mother has never given her signature on this document another thought. Her energy is spent in looking for her pocketbook, hiding in a place that she found once, but cannot find again. Although she has no official diagnosis, Mom probably suffers from Alzheimer’s. My Dad had an altogether different type of dementia, but I have found that a diagnosis does not matter at all. The end result is the same: Disabled parents, shattered family relationships, and estate nightmares. Surely other families have resolved these issues. Surely no one else. . .

QOL? Are You Kidding??

Old age. Dementia. Alzheimer’s Disease. Jokes are legend and stories are both tragic and hysterically funny. I gave Mother a bath several nights ago, dried her, then rubbed her down with lotion. I handed her the roller deodorant and said, “Mom, put a little of this under each arm.” As I turned from the hamper of damp towels, I could not stifle laughter. Mom was rolling the deodorant ever so carefully between each of her toes. “Well, at least your feet won’t stink!” She understood her action, just for a brief moment, laughed and then returned to her world of broken spatial concepts, aimless activities of movement, words that strive for meaning, and glazed eyes that now seem empty and bored.

Research is ongoing; new books are filling the shelves and the objectives of helpful organizations are carefully stated. Most of their words seem to focus on improving the quality of life for those with diseases of dementia. Sometimes their words are as blurred as my mother’s attempt to make sense of her now crazy world. My opinion? There is no “quality of life” for those afflicted with dementia. In mid to late stages of dementia, there are quality moments, or seconds, prodded or provided by caregivers who either love them or receive enough pay to offer a stimulating activity. Without this help, there would not be a single QOL (cute buzzword) moment.

I would like to write a very short book that offers realistic options for life that no longer holds quality, but most of my words would not be acceptable, here or elsewhere. QOL has been defined as the human condition that senses “meaning” or is in touch with “being and becoming.” Dementia is not curable. It robs the soul of dignity and quells the ability for “being” anything. And my 88 year old Mom has no sense of “becoming” anything more than her frightful night dreams will allow.

Should there be physical therapy, medical care, and stimulating acitivites?
Yes, of course. There are many recommendations on the sites listed with this blog (as soon as I learn to hyperlink!). So, I will encourage Mom to draw and paint, to read out loud, look at photos, walk and sing. Perhaps it will occupy some of her blank spaces and hopefully, enlarge my own soul . Whether I, as caregiver, “become” anything else is an open question. It will depend on my ability to cope and personalize QOL before the plaques devour.

"Mirror, mirror on the wall". . .

Retired social worker
Reluctant caregiver
Irreverent soul-searcher


Dilemma
I’m waiting for the joy of my retirement.
I’m longing for some travel and some fun.
Delaying has become a sad requirement.
A testing of good daughter or good son.

I’ve joined a club of millions where the members
Suppress a dream for golf or gym or gin.
We spend our days just hoping Mom remembers
Or wiping dribble from our Father’s chin.


I won’t bore you with a lot of statistics, but I can tell you that I fear our economy will never recover! For every 5 million people with dementia, including Alzheimers, it is estimated that there are 10 million unpaid caregivers. My mother is one of those with dementia. I am one of the caregivers. There is no time to go out for a movie, to shop, to eat out, or watch HDTV on a new wall set. And our Moms and Dads no longer make shopping lists! Walmart may be the only survivor of this recession. We caregivers know that we can buy Depends, applesauce, plastic serving dishes and Valium (for ourselves), in a 40 minute one-stop weekly whiz-through at the super store.

This is not a poor-pitiful-me story, although I am all those things, but a look into the last room of my mother, and ultimately the last room for millions of us. Just in the U. S., a dilemma with the proportions of the entire population of Forida is upon us! We need to start planning.