I am afraid of developing dementia, the most common form of which is Alzheimer's disease. The possibilities are horrifying -- the ineluctable loss of memory and other cognitive functions; dependency on others to dress me, to feed me, to change my diapers; slipping into a fog, where I cannot recognize even people I love.
But is dementia inevitably a cruel, distorted end of a human life?
When I was younger, I thought so. I had no doubt that I would prefer death to living in a demented state; that I would want to take my own life; and that, if I missed the timing and could not act on my own, I would want someone else to do it for me. "Just shoot me," I said to my wife -- knowing, of course, that she would not and could not, but hoping that she would act swiftly as my health care proxy to have any kind of life support -- including food and water -- removed when I was no longer myself.
As I have become old (I am now 68), my thinking has changed. When the time comes, if the time comes, I may want to live -- even if I cannot engage in witty conversation; even with the need for someone to help me hobble on a walker to get out for a breath of air; even with the indignity of someone cleaning me after I mess my diapers.
What we expect and want for ourselves changes over time. That is the fundamental insight of developmental psychology. When I was a child, being a child seemed right. When I became a teenager, I fought against being a child. As a grown-up, my adolescence was an embarrassing memory. I am happy now not to be driven to succeed at the work, which largely and happily defined my existence as an adult. The low-stress life I am fortunate to have now feels right to me.
What will feel right when I am very old? Will I care if I can no longer analyze public policy? Will I be deeply distressed if I cannot write or teach? Will I suffer if I cannot tell a joke or have an informed conversation about politics, world events and the fields of knowledge and activity that have been central to my life?
Or will a visit from someone I like make my day? Will my daughter and grandchildren (if I have them) be a source of constant interest? Will watching world events on the TV with only faint understanding be enough? And when the time comes, if it comes, will the feel of the sun on my face be enough for me to want to live? Will a caring hand on my shoulder, the taste of French fries, the sound of jazz, the sight of a beautiful painting or sunset be enough? I do not know the answer.
I do know that dementia unfolds in stages. Although many people in the early and mid-stages are devastated by the growing loss of important abilities and develop mood or anxiety disorders, others have "full" lives that include the pleasures of friendships, love and sex; the satisfaction of participation in social and communal activities; and even the discovery of new interests. In fact, some experts on dementia (see, for example, John Zeisel's book, "I'm Still Here") maintain that diminished cognitive functions result in the release of capabilities that have been suppressed by the very cognitive abilities that are now in decline -- particularly the willingness to take creative risks and the openness to human affection and intimacy.
There are, as we all know, people with dementia who become depressed, frightened or angry -- some so angry that they are abusive to people who try to care for them. There are some people with dementia who wonder why they are alive, or wish for death.
But there are also people with dementia who experience pleasure, who feel love and who are at peace.
So, even though I still fear developing dementia, I no longer say with any sense of certainty, "Just shoot me."
Follow Michael Friedman, L.M.S.W. on Twitter: www.twitter.com/mbfriedman395
John Zeisel, Ph.D.: An Alzheimer's Diagnosis Isn't the End
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After she got to that stage, instead of reacting to her surroundings she went 'somewhere else'. It seemed to me that she was in Dreamland. She had her eyes closed, but would grimace or smile, laugh or mumble - about something going on that I could not see or hear. And, it seemed that she was having a very rich and vibrant life wherever she was.
She was my Beautiful Dreamer.
Your post has really helped me move this mental process along.
It can rupture a family's relationships as well as a family's fortune.
I have seen this up close and personal.
I agree with Anastasiabeaverhousen....this is a common thread in humanity that can help unite us. Not only does dementia of all kinds rob a human of their personality, it also requires a lot of caregiving from family and friends until it becomes beyond their own scope of coping with the fading human.
I believe that every individual has the right to choose to die in their own time and way.
So many things unite us in spite of the many things that divide us.
Most of us are going to have to care for aging parents, at some point in time. We all have to deal with our own mortality and humanity.
Maybe we just spend a little more time exploring things that unite us? Just a thought...........
She always knew my and my siblings names but didn't always get the grandkid's names. She thought one person in her "house" was a friend from 70 years ago.
She wasn't unhappy - just resigned to being 'fuzzy'.
It was either put her in the home or continue to hope that she wouldn't accidentally burndownthe house one day..........no good choices on this subject, sorry to say.
'Are the shoes where they should be? Catriona! Go outside. No light must get through or the air raid wardens will bang on the door. They'll be here soon. Listen for them. We must get the boys into the Anderson Shelter. You remember where it is, don't you?'
The 'boys', are my husband and his brother, both born long after the war ended.
Auntie Diana isn't really my husband's aunt. She was young and homeless, looking for a family that had an extra room she could rent. She had been bombed out. Housing was scarce in wartime Britain. Diana was the lodger who stayed with my husband's family and became the boys' beloved Auntie Diana.
She became an elegant career lady who married a dashing GI and went off to the America. Now she's back. Her husband doesn't want to bother with her, and her new country provided no useful help.
Every other weekend we drive to Wales, giving her half-sister a break. We sit with her during the evenings whilst she waits, trembling, for the German bombers, the Doodlebugs, and V2s to rain down death, as they did when she was young. She is living her final years in terror, begging me to safeguard the little boys she still loves, between scolding me for using too much butter and asking me to save a bit of sugar for their tea.
The Welsh house has hung blackout curtains.
a farmer, he looked after the widowed in the community, he was a "hands on" community leader.
We had to put him into a nursing home , my sister & I just couldn't physically take care of him any more, we really lucked out and the people that worked there took very good care of him,He hit them,
bit, kicked and cursed at them, but they treated him with respect, my sister and I were in there all the time. It was devastating to us to see this road he was taking, in the beginning,there was one time when he realized what was happening to him and where he was, he begged us to take him home so he could die, he was devastated beyond imagining. It ripped our hearts out!
Eventually, he didn't know where he was or who we were, we went everyday to just wrap our
arms around him and kiss him and tell him how much we loved him, it was all we could at that time, he finally quit eating it was 5 days later that he passed away in his sleep. It was so heart wrenching to see him go thru this. Now my Mom is in the same facility Dad's nurse takes care of her, she loved Dad and called him daddy all the time.She calls Mom, Mama.
One of my favorite people when I was growing up was a friend of my parents. We called him Dr. Tom. He was a professor at our local university along with my dad and attended the church my parents attended. He was a retired chaplain who had a PhD in divinity studies from Princeton Theological Seminary. I took classes from him at the local university when I was in high school and parts of college, prior to his retirement.
Dr. Tom retired and then his wife died. Shortly thereafter he started showing signs of Altzheimer's. This disease took one of the most incredible minds I have ever known in a very fast timeline. It was one of the saddest situations I could ever imagine. He lost who he was. That beautiful mind was gone to the world forever. The mind that taught me logic, Cicero, Plato, poetry in the Old Testament...gone.
I've battled cancer, childhood sexual abuse, and all sorts of other things in my life. I've overcome more than most, survived and thrived. But this disease scares me. To lose my mind is to lose who I am. I'm afraid that if I got this diagnosis I would decide on a timeline to make my own exit, stage left. I will not lose who I am.
I was a caregiver for my mother for a number of years. She was a great person, and I don't regret my choice. But I don't want to go through those years of disintegration; nor do I want my wife to be saddled with that degree of caregiving.
The rich will have 24-hour care at home to the end of their lives. Their families might stop by to say hello or give them a pat on the shoulder, but they aren't going to do the hands-on, 24/7 caregiving.
The upper middle class will have long-term care insurance which ensures that they go to a nice facility--one which has a good safety and treatment record.
The middle class and poor will end up in facilities where some degree of neglect and/or abuse is the norm. It's not a pretty picture.
In the U.S., we don't handle aging, disease, and death very well. We should respect each person's choice of whether they choose to live it out or not.
I don't know what I would do, but it would be a huge problem, and I sure wouldn't want to sink my daughter before she even had a chance to start her own career. Dad is in the 16th year of this disease, and has been in a nursing home for the last seven years. Before that, Mom cared for him in their home until he simply got too sick to be there.