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note: The is a short educational film. If you get a “Webpage not available” error message, please refresh the page.
“Alzheimer’s is predicted to affect 1 in 85 people globally by 2050.” Source.
Where are people today, who suffer from dementia, and what will become of them in the future?
My husband’s father died with this disease years ago. The first nursing home was awful. My husband did not know this in the beginning. He took his father to the first nursing home, but was unable to tell the father that he was leaving. So, he lied and said he was going to the bathroom, and then he left his father there. A short time later, a transfer to another facility was arranged. The lie about the bathroom that was in reality a walk out the door haunts my husband to this day. It felt like a betrayal and an abandonment.
Just five years or so prior to the First Nursing Home, the two of them played golf together. The father hit a shot. But then, he could not locate the ball. He did not know where to look. This was the beginning. Much like the rice cooker in the film above- little things. The ‘little things’ phase annoyed the family at first, much like what you see in the film.
How on earth do you tell someone that you are leaving them in a place, and keep from falling apart with grief? How do you even know that this is happening, in the beginning?
Editor’s Note: More on Alzheimer’s from MyFDL’s Masoninblue
Additional statistics (hat tip ubetchaiam):
-5.4 million Americans are living with Alzheimer’s disease.
-One in eight older Americans has Alzheimer’s disease.
-Alzheimer’s disease is the sixth-leading cause of death in the United States and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed.
-More than 15 million Americans provide unpaid care valued at $210 billion for persons with Alzheimer’s and other dementias.
-Payments for care are estimated to be $200 billion in the United States in 2012
19 Comments
I’ve no answers to your questions that would be anything meaningful; all I can say is that when dealing with a loved one, honesty is always the best policy and the tears that fall are usually for oneself,e.g the attachment the buddha spoke of.
This http://www.alz.org/index.asp may be helpful.
Doing what the loved one needs is more important than saving yourself from guilt, unhappily. I’ve seen that play out, resulting in sufferings that didn’t have to happen, by taking responsibility instead of passing on the choice to some one suffering loss of faculties.
I agree with you. At the same time, the decisions must be difficult. The wiki information was shocking, I thought: one in eighty-five by the year 2050 could be affected. Given that proper care is expensive and that our health care system is not much geared to help the underserved vulnerable, I have concern that there is today and will be in the future, a good deal of unnecessary suffering among those affected, who are poor.
In a new article in Neurology, findings show that increased activity of any kind (housekeeping, cooking included) can decrease Alzheimer’s risk in some. Article new, could not find it. News link: http://health.usnews.com/health-news/articles/2012/04/19/health-buzz-physical-activity-cuts-alzheimers-risk
My personal solution for myself is assisted suicide. I mean it. I have no children and I don’t want whatever meager resources I have to be used to care for me.
I was the primary family caregiver for my mother who died about a month ago. Her dementia was caused from bad flow of blood due to venal and arterial sclerosis and congestive heart failure.
Thank goodness I was there when she died. I would not have known what happened otherwise. “Care facilities” are mostly notsogood.
Yes, thank you and thank you for the link. I feel very fortunate in that no one in my family has ever had this diagnosis, but my heart goes out to people who do. As I age, I can most definitely own the awareness and alarm that I have when I forget and misplace things. I secretly read articles to assure myself that forgetting to spell common words that I never had trouble with in my life, for example, is part of the aging process rather than organic decline.
While Fred’s father died many years ago, we still talk about the events leading to nursing home placement. We also overanalyze absent-mindedness in ourselves sometimes.
As I told Ruth, I do not see a lot of compassion in our ‘system’ today.
Thank you again for the link; I have placed some statistics into the body of the post.
Totally know where you are coming from. Very sorry to hear about your mother. Unfortunately, as you say, some of the ‘care facilities’ are not so caring. Very sad that anyone dies alone in a facility….good that you were able to be there for your mother.
Watching my father pass into oblivion was painful beyond words.
Withholding antibiotics after his third bout with pneumonia and thus allowing him to pass peacefully was excruciatingly devastating.
Being at his bedside when he breathed his last breath on this mortal coil was an indelible horror.
What was ‘god’ thinking when he invented dementia?
Anyone who thinks ‘god’ is not a sadist has not lived among man.
Losing someone in this way, by inches and seconds, has got to be, without a doubt, one of the most painful situations ever visited on anyone. My heart goes out to your father, who suffered a situation that no one should ever face, and to you, for being there with him and helping him to face his situation with dignity and grace.
Thank you so much for stopping by and sharing. Not at all an easy topic, yet unfortunately a topic that touches many. I wish there were easy answers.
I am an only child and, even though I had an unpleasant childhood for a variety of reasons that are not relevant to this post, I still loved them and when their health foundered, I did the best I could to ameliorate their suffering.
My dad succumbed to Alzheimer’s and my mother had a stroke after she returned home from dropping him off in the locked Alzheimer’s Unit of a nursing home. She laid on the floor in the garage for 7 days before a neighbor found her. She only partially recovered her mental faculties.
He lived another six years and she lived another seven.
I was living in Seattle at the time and when I got the news from an officer with the Fire & Rescue Department, I got on the first available flight to Myrtle Beach, SC.
He did not know where my father was and I did not find out until I arrived at the hospital and, in one of her lucid moments, my mother told me what she had done.
I knew his forgetfulness had been getting worse, but I did not know how bad it had gotten. We did not talk much because of the poisoned past. She told me that he slapped her and shoved her to the floor after she criticized him for forgetting something she regarded as important.
That was the first and only time that he hit her in their 50+ year marriage and it would be the last time. She dropped him off at the Alzheimer’s Unit later that day.
I went to see him. It was like a jail and I had to be admitted to the unit by a security guard, who unlocked the heavy steel door and let me to enter a large hellish visiting area.
Many patients wearing soiled clothes were strapped in wheelchairs. Unable to hold their heads erect and focus on a blaring television set in a corner of the room, their heads lolled from side to side as drool dripped from their mouths and unintelligible sounds emitted from their throats. The place smelled like shit.
I saw my father at the opposite end of the room talking to an unresponsive man about something. I walked up to him not knowing what to say. He noticed me approaching. He stopped in mid-sentence and faced me.
He smiled in recognition and relief. He said, “Frank, thank God you’re here. Let’s get out of here.” He put his arms around me and hugged me tight. When he let me go and stepped back still holding my hands, I saw that his eyes were moist with tears.
I knew then how bad it was. My name isn’t Frank. Frank was his older brother and he died 26 years ago. My father did not know he had a son.
We chatted for awhile as I tried to fit into the conversation. I don’t recall what I said, what we talked about, or how long we talked. I remember being overwhelmed by the horror of the place and the stranger whom I used to call “Dad.”
Suddenly, I couldn’t take another minute. I released his hands and said, “I have to go the bathroom. I’ll be right back.”
I turned and walked away. I spotted the security guard and struggled to keep from running toward him and the door over which he presided.
“Let me out,” I said. “I can’t take it anymore.”
He laughed and said, “You’ll get used to it after awhile.”
I never did.
I did, however, arrange to place my mother and my father in the nursing unit of a retirement home that was a much better facility and I visited them as often as I could over the next several years as inch-by-stubborn inch they declined and briefly rallied, declined and briefly rallied, until they were no more.
My father never spoke my name and never knew who I was.
My mother criticized him for it, but he soon forgot who she was and spent the last year of his life strapped into a bed that they used to transport him back and forth between his room and the day-room.
Sometimes they left him in the hall across from the nursing station so they could keep an eye on him as they came and went.
They called me one day and told me that he died peacefully.
I buried him and then I went home.
I was there a year later when my mother passed.
I held her in my arms and kissed her goodbye when she stopped breathing.
I buried her and then I went home.
The system is profit oriented, ’nuff said. Doctors used to tell the patient’s kin that she/he was not suffering any more, because they were beyond knowing what went on. Sorry, that doesn’t appear to be true.
Many people walk away at a point like that. I’m glad for you that you could and did take what care you could.
I’m going to follow Crane-Station’s advice and post my comment as a diary. I feel better now that I’ve written it.
A dozen years gone and the pain is as fresh as it ever was.
My family and I are among the lucky in this regard. Sympathy goes out to those who had or are having traumatic experiences.
My dad has Alz & is nearly 92. His “version” of this disease has been a very loooong, sloooow decline for over the past decade, and he’s still doing rather well in the health dept. Also still has many moments of lucidity and is interactive and loving and happy.
My parents are fortunate to have enough money to pay to live in an exceptionally good Senior living community with various levels of care provided. My dad is now at the highest level of care, and I’m pleased to report that it is very very good. But it does come at a price that many could not afford.
When I visit Dad, he is my Buddha teacher. I am SO LUCKY. He is so totally in the moment and very very happy nearly all of the time. I am SO LUCKY because he is a peaceful cheerful fellow surrounded by very caring workers (paid sort of adequately – I do discuss this in detail with them). They love Dad because he is one of the cheerful ones; often singing happy songs to them and being very loving. He is lucky, too.
I am totally grateful. I know it is more often not like this for many people.
My only suggestions are: IF at all possible, buy good long-term care insurance (if you can; I know many cannot). Plan as best you can and do your own research on facilities near you right away.
Too many elderly refuse to look into options for care because of fear and denial, and then they end up in horror-show places. Don’t wait; check things out as far in advance as possible and continue to research options over the years.
My mom started to get dementia & hated it. She pretty much determined (and emphatically told my sibs & me) that she was “ready to die.” Well she was old & had a good long life, and then she got pneumonia. We let her pass bc that’s what she wanted. I have to say that it was pretty peaceful. Hospice is wonderful in this regard. I am also grateful that my mom wasn’t scared and fighting dying.
Again: I am SO LUCKY.
Another suggestion: do your best to make peace with the end of life process. This is another thing that many resist doing out of fear and denial. Easier said than done, but better for all concerned if you think about it in advance and consider what it means for you.
That is why I was so totally enraged with Sarah Palin & her lying bullshit about calling End of Life counseling “death panels.” Really pissed me off. Calling her irresponsible is being too kind. Voddabitch!
Thanks for the post and thoughtful responses.
I have a friend in her late 50s with early dementia. I’m fairly certain she’s been suffering with it the few years I’ve known her. As long as she can run on autopilot she is fine. Throw a wrench in the system and she stresses. Some days she makes dinner twice. I don’t see her everyday, of course, but every time I see her she is wearing the same thing.
She’s extremely antagonistic towards her husband (he’s no angel but not as bad as she makes him out to be). Last week he blew up her truck and left her having to walk. The truth is the truck went in the shop for a repair its needed for a year and she had a loaner to drive. She didn’t believe her husband when he told her the loaner was her’s to drive but once I found the key for it and got her settled in to it, she settled down.
She was diagnosed at a community clinic a year ago and told to see a neurologist. Evidently neurologists no longer take patients without insurance, even if they can afford to pay for the tests. My friend desperately needs to get on some meds. She needs a firm diagnosis via a neurologist so she can get on Medicaid and SS. She needs to remain lucid long enough to appoint her husband, or one of her kids, power of attorney etc.
She’s fine if she stays in her day to day bubble but that’s shrinking all the time.
It’s really sad.
My brother and sister and I moved my parents out of their home and into an apartment recently. The apartment is part of a retirement/assisted living facility. My dad has moderate Alzheimer’s and my mom is in the middler stages.
I hear this story repeated over and over now. My generation is viewing not what will happen to us but what will not happen. Even though the care that most of our elderly receive now is not adequate, the care we will be provided will be non-existent.
The unspoken motto of the MOTU is not Let Them Eat Cake but Let Them Eat Less and Die Sooner.
Thank you so much for this comment and guidance. While my parents do not have dementia, they are very elderly and frail. I think that it is important to try to be consistent with a person’s own wishes at the end of life.
That is one of the many problems I have with the hateful Sarah Palin, who somehow manages to mind everyone’s business but her own: battle lines can be drawn within otherwise agreeable families, and fights can ensue over whether it is right or wrong to prolong suffering. Personally, I think it is wrong and selfish to prolong suffering in anyone, particularly if that is not at all what the person wanted in the first place.
What I have learned via caring for and/or just being their for many elderly relatives and friends is that: forewarned is forearmed.
What my age-group friends & I have learned is that, often, our parents’ generation (so-called “Greatest Gen”) have been mostly in denial about the aging & dying process. A lot of energy going into fighting it and a lot of magical thinking that sort of goes: if I just ignore that I’m aging, then I can beat it.
Better to take control of your process and to plan accordingly to the best of your capabilities and finances.
Some of my friends are considering how to pool finances and other resources to live together as we age. It’s something that our parents’ generation would mostly not have considered, but as Mary McCurrin has pointed out, resources and assistance are going to be far less available as the Boomers, Gen X, Gen Y, etc, age. Better to work together on solutions with other like-minded friends & family, IF possible, because no one else is going to give a stuff.
Best of luck to all in this process. It is certainly a challenge.
Goodness, yes, very sad. That some folks are looking out is good. Can only hope for the best- that in lucid moments, she can appoint that power of attorney.
It sounds like your parents are in a good and helpful place.
The motto in place is, sadly, anything but consistent with greater good.
Pooling resources (comment 17 @onitgoes) is something we are going to have to do more of in the future.