This photo of my Gram gives me unimaginable pain. It was buried, but I tracked it down for this post. She would hate me for using it, she was very proud of her looks. She lost them first, her brain second and her body … well, she never lost her flexibility and energy. She was in tremendous physical shape, a proud Finn from Michigan’s Upper Peninsula.
Her descent into dementia took years. Nobody wanted to see it. Nobody wanted to hear it. She was playing games they said. My mother – who never liked her – claimed she just wanted attention. My cousin and I visited every week and we saw the changes.
When she could no longer drive, my aunt took her in and cared for her like a princess. She even created a full suite that was similar to her little blue house. She prepared marvelous meals. Gram had it great until she started wandering the roads and docks and leaving the burners on. She was diagnosed with a cancer in her early 90s, but she was so strong it “went away;” she outlasted hospice by many years. My aunt finally had to put her in a home. It was an agonizing decision.
It was a nice home. The aides cared deeply, but the food had little, if any, nutrition. Because the Dementia Ward was all time and no hope. That’s what our society does to grandparents. That’s what we have done. We tuck them away where they can’t wander off docks to drown in the river or set fires like my Gram would have done; no, we put them somewhere safe so we can come visit when we have time.
Some sit back and wait for a phone call. She or he “is not there” they say. They wait for the inevitable phone call.
And maybe there will be some assets left. My Gram left me exactly one month’s salary. I was making money she would have never dreamed of. It wasn’t right that my piece of that precious woman’s life’s savings were the equivalent of pre-recession chump change.
I visited every Sunday. She was a mere shadow of the woman who raised me, but she was still available for a hug. She didn’t know who I was, but sometimes there would be new paintings on her walls; I was amazed by her continued creativity.
I knew she had arrived at a place of shapes and colors, so I came armed with Dairy Queen ice cream, home decorating magazines and memories. “Gram – that was your blue. Remember your carpet and walls?” And she smiled. No demands. She had done the same for me when I was little; shared a coloring book full of possibilities with a side of Crayolas.
When I moved to Florida I did not doubt I would see her again every time I came back for visits; but she passed within three weeks of my leaving. I nearly crumbled.
I had joked she would be my first house guest and indeed she was, rattling paintings, shaking my bed and visiting in dreams. It was a great comfort – but the shaking bed was a bit of a shock for my then-boyfriend.
Gram started slipping gears in her mid-80s and lived to 96. Nobody expected my smart, control freak mother would slide in her 70s; but she has. Again, nobody believed me. Believed us. But the descent has been rapid and inescapable.
Looking back, she stopped sending emails about four years ago. She stopped using Skype about a year ago. When I warned she was giving up lifelines she needed to survive in their great white northern wilderness, she hung up on me; because somewhere in her limited awareness she knew I was right.
She didn’t fight, she hid her symptoms as long as she could and took the easy road. Now it’s up to us to walk it with her.
Like my Gram, her body is solid; my stepfather’s body is toast, but his mind is good. He is calling all the shots. I am terrified she will wake up and find him dead and not remember how to make a phone call.
I don’t know his ultimate exit plans. They NEVER planned for this because they never dreamed it would happen. She was an avid reader; last year I finally realized she was sending books to give the impression she was still reading.
I half imagine a taxi will drop a disoriented widow off at my front door. With my Lyme Disease, she will run circles around me.
I have been living in total fear.
I imagined an Evelyn Wood Speed-Descent for my mother and had already accepted “the inevitable” until I saw Dr. Zeisel on PBS. Funny how the Universe sends us bits of what we most need when we most need it. I’m only 50 pages in, but I’ve already found comfort.
Let me share some paragraphs with you …
“Throughout the more than decade-long progress of the disease, the person is crying out ‘I’m still here.’ We all need to start hearing that cry before it fades away completely.”
“People living with Alzheimer’s live in the present moment.” It’s about damned time. My mom spent too much time in the past. Welcome to NOW, population YOU:-)
“The lack of a fully functioning brain ‘comparer’ makes many people living with Alzheimer’s better artists than they were before the disease.” Also – she is not the judgey know-it-all she once was.
“The way the illness affects the brain leaves most of them exceptionally perceptive, increasingly creative, and highly emotionally intelligent for years.” That’s good because she loved to paint. I’ve been encouraging her to get back at it and I can hear the enthusiasm in her voice.
“The people who care for them can maintain positive relationships and share vibrant memories for the entire course of the illness though photos, music, art, personal stories, and visits to museums and other community cultural events.” We would both enjoy that immeasurably.
Perceptions are beginning to change …
“When dementia among the elderly was labeled ‘senility’ and ‘hardening of the arteries’ and was considered an attribute of natural aging, few people paid much attention to this condition because they considered it chronic, hopeless, and untreatable.
Research scientist Peter Whitehouse sees the distinction between Alzheimer’s brain aging and less severe brain aging as a ‘myth.’ According to Whitehouse, it’s just a matter of some people’s brains aging faster than others because of genetic and environmental differences. Whether you believe this or not, shifting Alzheimer’s – or rapid brain aging into the same class of illness as cancer, multiple sclerosis, diabetes, congestive heart failure, and degenerative arthritis places it squarely in the realm of an understandable and manageable condition. Making this link turns Alzheimer’s into a treatable, although still incurable, condition rather than a hopeless one.
This seemingly simple change can bring back to the realm of the living the tens of millions of people worldwide whom our limited thinking has condemned to a limbo in which they are merely waiting to die.”
The book has already made me cry. There were times when I walked into Gram’s nursing home and asked if she knew who I was. Like D’Onofrio psyching a perp on Law & Order. I was putting her on the spot, making light of memory issues that were monumental in her limited awareness.
The book gives meaningful tips –
NEVER test their memories!
Never refer to the person indirectly in his or her presence. I remember doing that and she said “Hey, I’m standing right here.”
Encourage their personal control – as in not finishing a sentence as they struggle for words.
Provide photo props that help them remember loved ones.
The sources of their perplexing behaviors
AGITATION – Our loved ones have lost the ability to occupy themselves; they’re bored. We can help with that.
AGGRESSION – I haven’t seen this in my family, but I did see it in the nursing home. Zeisel says they’ll shout to get attention or “create something lively to take part in.” Or they may not understand why they’re confined (to a facility).
ANXIETY – It’s hard enough for most of us to know how to act in some social settings. Zeisel says “The actual symptom is not having a clear picture of time and causal relationships.” I remember my Gram was most calm with children and – later – her friends in the dementia ward. She was fine with people who had no expectations.
APATHY – Zeisel says “The actual symptom is the inability to perceive of and remember the future, and thus the inability to plan for the future.” I’m 1,750 miles away. My stepfather tells me my mother has “taken to the couch and the television.” This explains it.
Companion behaviors contribute to these outcomes.
When my son’s family was with my parents a few months ago my daughter-in-law told me my mother was not eating because she did not remember there was food in the refrigerator. Out of sight, out of (her) awareness.
There is so much to learn.
I have some comfort that I did a few things right with my Gram. “Music, images, perfume and other nonverbal forms of communication let the person with the illness know that someone who cares for her realizes she is present.”
I’m only 48 pages into the book; Zeisel promises “if we choose to stay connected to others as they and we change during the passage of the disease, we learn about ourselves, about relationships, and even about the meaning of life.”
He says “The first step is to discard old expectations and role relationships that limit our ability to see the person and relate to him or her in a new way.”
I have no stake in this book – except for the hope it brings.
Please read and share Zeisel’s message.
Namaste
Allzheimers.us 