|Alzheimer's Disease - The Long Good-bye.|
Alzheimer's Disease has been called The Long Good-bye because it takes a decade or more for the disease to run its course. Typically, from diagnosis to death, an Alzheimer's patient can expect to live 10 to 15 years. My mother lived 10 years after her diagnosis, my aunt - her sister- lived 18 years before passing, which is rare to live that long.
When my aunt was diagnosed in the late 1970's her doctor told my cousin that her mother was suffering from a disease called Alzheimer's. No one had really heard of Alzheimer's Disease back then.
Most elderly people that showed signs of dementia usually died of other ailments, like heart attacks, cancer, stroke or pneumonia before the disease could run its full course. Now, with life expectancy increasing, we are seeing Alzheimer's Disease go its full term. It is a tough disease on both the patient and the caregivers.
A person diagnosed with Alzheimer's Disease with go through several stages over the life of the disease. Oddly, on a recent newscast, the Alzheimer's Association was quoted as saying there are only two stages of Alzheimer's - On-set and then full blown Alzheimer's.
Having lived through two lives affected by the disease, I can tell you that there are many stages you will experience as the disease gradually takes your loved one's mind from them.
With my mother, we noticed that she was becoming more forgetful, not any reason for too much concern. Then, she would pull all the ingredients out to make one of her favorite meals and stand there at the cutting board crying because she couldn't remember how to make the dish.
A big red flag came up when she drove to the local mall, a trip she had made dozens and dozens of times. She called my father and said, "I don't know the way home." He had to go and get her at the mall.
From there, she saw specialists and was diagnosed with Alzheimer's Disease, just as her sister had about seven years earlier.
As the disease progresses, you will see more and more memory loss. Not all patients have the same exact symptoms. Some will be able to recall past event with incredible clarity, while others won't remember where they went to school or where they grew up. Each patient will have different degrees of memory loss and forget different parts of their immediate or long-term past.
No matter how much memory loss occurs or what they are forgetting, it will only get worse. Simple tasks will become big challenges. Phone numbers will be forgotten. Confusion will happen when favorite activities become too difficult to manage or complete.
This is just the beginning for the caregiver. This stage is actually the easy part.
One of the things you have to prepare yourself for will be the big emotional jolts you will experience as the disease takes over.
The hardest day of my life was when my mother looked me dead in the eyes and said, "Who are you?"
She didn't know. She thought I was nice and pleasant, but she had no idea who I was.
She'd even forgotten who my father was and could not recall his name. She used to whisper to me, "That guy is here all the time. He seems nice. But I don't know why he's here and what he's doing." That had to be hard for my father.
As time went on, my mother remembered less and less. She maintained a pleasant mood and smiled a lot, but she was oblivious to the relationships and significance of the people around her.
I used to play a game with my mother. I would recount her life to her. Being a comedian, I had to add a twist to it.
I would sit with her and tell her, "You went to high school in Cleveland and then went to art school. During World War II you painted pictures of the war and got a job as a graphic designer in an advertising agency. After the war, you continued to work in the advertising agency. Then..." pumping more excitement into my voice and speaking much louder., "... in 1948 YOU PLAYED SHORTSTOP FOR THE CLEVELAND INDIANS AND YOU WON THE WORLD SERIES."
My mom was so excited that she won the World Series. She couldn't wait to tell that guy that was always around. When my dad came in the room, she shrieked with excitement, "I WON THE WORLD SERIES!"
It was a charming, yet bittersweet moment.
Alzheimer's patients can go through serious mood changes the farther along they go. You might see them getting angry, even shouting uncontrollably. What they once enjoyed may drive them crazy. Your job is to find activities that they can enjoy and pass the time.
I had the good fortune of being able to tour a very advanced Alzheimer's patient facility in Las Vegas. This facility provided long term care for Alzheimer's patients.
They had everything very well thought out, tailored to the broad range of symptoms experienced by the patients.
There was a sidewalk with no cracks in it that looped around the facility. Some patients would get to a crack and to them they perceive the next block as a hundred foot drop and would remain frozen at that crack for hours.
Along the path was a bench with a bus stop. Several of the patients would get up, dress, go to the bus stop and wait for several hours to catch the bus (that was never coming) to go to work. But they were happy because they felt they were going to work.
Costumes were also available for the patients. One elderly woman thought she was a cheerleader. The facility had provided her with a complete cheerleader's outfit, including the pom-poms. Every day, this lady would dress up in her cheerleader's outfit and do cheers in a corner of the activity room.
Alzheimer's patients like repetitive activities, too. Loads of clean laundry were given to some patients and they would fold and refold the same clothes all day.
One wall in the facility was covered with various knobs and handles. Some of the patients would sit and turn the knobs. They would say, "I'm going to shut the water off," and warn everyone. "Now, I'm turning the water back on." This would go on for an hour or so, and then they would find another activity.
Alzheimer's patients can also become delusional. When I first entered the facility in Las Vegas, a man came rushing up to me and said in an excited tone, "Thank God you're here. I've been trying to get a message to the governor and I'm glad to see he personally sent an envoy for me to get my message to him." I only took a leak in the urinal next to the governor one time, but I didn't know him.
My friend's mother would set three places at the table every night for dinner, even though she lived alone. On a serving dresser near the dining table was a picture of Ron and Nancy Reagan. For years, she thought that she had invited the Reagans to dinner and she'd wait for them, frequently pulling the blinds apart to see if they had arrived. They never came, but she persisted and waited for years.
She also imagined she had a gardener that was trimming her hedges every day. She didn't have a gardener.
Over time, my mother spoke rarely. She hated loud noises and often screamed at my sister's little girls as they played. My mother never raised her voice in my life and never used any cuss words. As time went on, her yelling, "Goddamnit, SHUT UP," was not unexpected.
Another interesting habit my mother formed when she wasn't speaking much was whistling. And I'm not just talking a little hoo-hooing... My mother was like a whistling virtuoso. She had perfect pitch. I would play the piano and she would whistle a flawless accompaniment. Her favorite songs were Christmas Carols. In the middle of July, with the windows open, I'd be pounding out Christmas Carols on the piano and my mother would be whistling her heart out. After each song ended, she'd say, "Do another one. That was great." Those were the few words she spoke throughout the course of the day.
Eventually, physical impairment begins to set in. The patient will require assistance with using the bathroom, showering or bathing, eating, dressing and any other activities that have more than one or two steps. Incontinence will set in and they will develop sores from sitting for extended periods.
Late in my mother's life, she spent a lot of time in bed in a fetal position. It was sad to see.
What helped me cope with her declining mental and physical condition was a line I heard in the Robin Williams movie Awakenings. It is a true story of a doctor who used a new treatment to revive catatonic patients form their blank stupors and lead normal lives for a brief period of time. All of the patients eventually relapsed.
But there was a scene in the movie where Robert De Niro - who was one of the patients awakened - was walking out of the hospital and he came upon a girl sitting with her catatonic father, who had not responded to the new treatment. De Niro stopped and said, "Never stop coming. He knows you're here." And that line became my mental mantra throughout the remainder of my mother's life. She knew I was there - a thought that was very liberating.
In the helplessness of the process, I had faith that somewhere deep inside my mother she knew I was there for her. I would talk to her as if she had no problem whatsoever and filled her in on all the things going on in my life. I knew she knew I was there.
For some families, the demands of care can be overwhelming. My father did the noblest task of his life by committing to take care of my mother at home for the remainder of her life, and not put her in a nursing home.
While other Alzheimer's patients are sent to nursing facilities, my father struggled to provide the best care possible for my mother. He was retired and he had the time. He also hired a part-time housekeeper so he could concentrate on caring for my mother. I have the greatest respect for him. His goal was achieved, except for the last month of my mother's life, where she was admitted to a hospital and never came out alive.
Unpaid caregivers suffer a tremendous toll on their lives and health. From the Alzheimer's Association website, they wrote:
There are nearly 15 million Alzheimer’s and dementia caregivers providing 17 billion hours of unpaid care valued at $202 billion. Facts and Figures finds that caregivers not only suffer emotionally but also physically. Because of the toll of caregiving on their own health, Alzheimer’s and dementia caregivers had $7.9 billion in additional health care costs in 2010. More than 60 percent of family caregivers report high levels of stress because of the prolonged duration of caregiving and 33 percent report symptoms of depression.
Along with the emotional and physical stress of being a caregiver is the weighty fact that there is no hope for recovery. Also from the Alzheimer's Association website:
Alzheimer’s is the sixth-leading cause of death in the country and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed. Based on mortality data from 2000-2008, death rates have declined for most major diseases while deaths from Alzheimer’s disease have risen 66 percent during the same period.
It becomes an endurance test for the caregiver.
I remember visiting my mother in the hospital during that final month of her life and telling her, "Mom, I love you. But you've done all you can on this earth. You can go home to God. He's waiting for you. And no one will be upset if you go. You've been through so much. Seek the peace of Heaven and go."
Two weeks later, she died.
There are many more phases of Alzheimer's. In fact, if you live through it, you will see many stages of Alzheimer's Disease - The Long Good-bye.
Dedicated to the memory of my mother and aunt.
And wishing the best to my cousin who is in the early stages of Alzheimer's.
And wishing the best to my cousin who is in the early stages of Alzheimer's.
Happy Mother's Day, Mom.
Related link: Alzheimer's Association website
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