Posted on May 16, 2017
If your mother is no longer with you—or far away—consider the women in a supported living facility who find themselves far away from their children. You may be able to help one another…
What follows was written in 2015 a few months after Mom’s death.
When I find myself stressed from work—beset by too many deadlines, too many emails all pressing for an immediate response—I head to Supported Living to visit my adopted mothers.
The moment I arrive, time shifts. Stress disappears. There is only the moment and I surrender to each restful, rewarding minute.
Their small community is gathering in the dining room, ready for lunch. I am greeted with smiles.
I greet them each by name and the smiles get bigger.
First Evelyn, also known as the duchess. She is approaching her 104th birthday and is still completely animated and engaged with life. I’m becoming something of a project for Evelyn. “A little makeup wouldn’t hurt,” she advises. “And some jewelry…and a little more blush.” I comply and she is pleased…so much better.” In return I treated her to a facial, her first in 104 years. She loved it. “I have never been so pampered.” About time.
Next to her is Ruby, she of the sardonic southern drawl. She and Evelyn consider my cookies to be the key to a long life. “Get in the kitchen and start cooking!” commands Ruby.
I begin with gentle neck massages—always asking permission. (Ruby hates them.)
“Ciao, Bella!” I call to Flora and give her a quick kiss on the forehead.
“Heaven has arrived,” beams Jane. “You have such happy hands.”
“Do you tuck your wings in a handkerchief when you’re not here?” asks Gloria as she snuggles contentedly into her chair. (Hands down the best compliment I have ever received.)
“You have good hands. Are you a professional?” asks Sue. “Thank you.”
I greet Joyce and her companion, Gus, a little stuffed animal. “Woof,” I say. “Gus is looking very happy today.” Joyce agrees, pleased.
I give Phyllis a head hug. In all the years I have known her, I have never heard her voice in conversation—instead coos and murmurs. But when we sing, her voice is loud and clear and she sways to the music and laughs.
And around the table I go, their happiness increased by the smiles on each other’s faces,
What wonderful women they are. In the company of such joy, who wouldn’t feel rested and revitalized?
After an hour I am recharged and calm—ready for the head winds of a busy life and thankful for the safe harbor of my mothers in Supported Living.
Back to the present. Last Monday I was at Supported Living. Gloria, Jane, Sue and Joyce are still with us but Kathleen has moved to the remotes of Memory Care and Evelyn, Ruby and Flora have passed. New faces have taken their place and, I am happy to say, all are eager for neck massages.
And so it goes.
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Posted on May 9, 2017
Growing up my mother had a favorite doll—her constant companion. Here she is in 1920 at the age of one, with her doll and her grandfather Malcolm McFee.
For years it lay cushioned in a cedar chest. Occasionally my sisters and I would be allowed to take it out and then, just as quickly, return it to safety.
There it lay until Mom and Dad moved into Supported Living. And suddenly it emerged—sitting on the top of the bookshelf.
She didn’t play with it—certainly not. As she once told me when she saw a neighbor walk by holding a doll, “If I ever get like that, just shoot me.”
But when Dad died, she had a lot of time to fill. In the long evenings in her small apartment, she would sit surrounded by memories—photographs of Dad, her children, her siblings, parents, grandparents, aunts, uncles and cousins. Plus piles of books and magazines (mostly filched, I fear, from the downstairs library and other people’s mail boxes), all sorts of jewelry and odd trinkets, a few stuffed animals…and the doll.
Every night she would “fiddle about.” The next day everything would have been rearranged—photos moved, necklaces draped on paintings and furniture, pictures cut out of the steadily growing piles of books and magazines (alas, more stealthy late night raids) and taped to the walls, stuffed animals in new groupings…and the doll. Sometimes with socks on its legs to “keep it warm.” Sometimes wrapped in a blanket, sometimes keeping company with the stuffed animals. Some days eyes open; other days closed. Every day a new tableau.
I was so charmed by this that I began taking photos. This went on for years—the doll again her best friend and constant companion.
Now I have the doll. So far it’s just sitting on a shelf but who knows. If I ever start playing with it, I hope there is someone there to take pictures.
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Posted on May 2, 2017
The other day I was asked what I was up to and launched into my usual rhapsodic account about Mom and her art. The reaction was swift and angry. 1) Not everyone is like Mom and 2) Alzheimer’s is not something to be happy about.
On both counts—Yes, absolutely true.
I don’t mean to disrespect or deny the pain and loss that this disease can bring nor to imply that Alzheimer’s is a benign disease; but I am trying to introduce a new perspective—that there is more to this disease than pain and sorrow—that there is joy as well. When we accept that, we can vastly improve the quality of our lives together.
I used to project my fears on my father when he was in the last stages of both Alzheimer’s and Parkinson’s. In a wheelchair, unable to feed himself, diapers, dependence, confusion and delusion: everything I had been brought up to believe was a life not worth living. When Dad was asked if he wanted any extreme measures to prolong his life, all of us kids were confident that his answer would be no.
We were stunned when he said yes.
“You have to understand that life looks different from where I am.”
And this is the trap that is so easy to fall into. We think about how we would feel if we were in their shoes—how unhappy we would be But we aren’t in their shoes. When we stop imposing our perception of reality on them and instead join them in their time, we both benefit.
I see Mom’s life getting smaller and smaller—more and more content within the comfort of her small room filled with photos and pictures of her happy childhood, her life with Dad, the friendly faces of her doll and stuffed animals, the pleasure in the moment…and I have to admit that she does not feel deprived—that’s me talking. I remind myself that this isn’t about me—it’s about her. And that is the ultimate respect.
As I left her yesterday afternoon, she called out,” Be thankful for everything you have. Be thankful”
She’s not diminished – she’s inspiring.
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Posted on April 25, 2017
It’s amazing to look back at some of my old posts. I’m so grateful I recorded my life with Mom in real time. I would never have remembered all the delightful things she said and did. The is from 6/5/13. Mom was 94.
Mom and I have such fun together. Today was one of those perfect Seattle days—sunny and warm—with Mount Rainier out of the clouds. As we looked out at the city, she wondered, as she always does, “What do you think it will be like in 50 years? I don’t think I’ll be here.” She talked about visiting her grandmother in the 1920’s and how her grandmother asked the same question. Then we launched into an interesting medley of song: I’m going to Wash That Man Right Out of My Hair (my idea) and the Valkyrie theme from Wagner (hers.) Where did that come from? When we got to the class I searched through all the paintings from previous classes but couldn’t find Mom’s. Finally Sandy, smiling, motioned to the wall where Mom’s painting was displayed. “We’re hoping you’ll let us keep it up there for a week.” (I usually whisk them away.) It’s absolutely charming. And yes, it stayed up there for a week for everyone to enjoy.
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Posted on April 18, 2017
Mom died exactly two years ago, April 19, 2015, so I thought a few words about death were in order.
Mom had very definite ideas about death. Her entire family did.
The McFees were a close, funny, loving group of Scottish Presbyterians with a singular attitude toward death.
They were all confident they would be going to heaven—every Scottish Presbyterian is. They were fiercely long-lived, with most of them living well into their nineties. We called them the Scottish Mystics for their ability to predict, almost to the day, when they would die and then, right on schedule, dying. I always thought Mom would live forever because, having dementia, she would forget to tell herself to die.
Now while death was a constant source of conversation, when someone actually died, the conversation stopped. Death was ignored. No funerals, no memorial services, and especially no tears.
I once asked Mom why.
“Well,” she said. “It’s considered showy.”
Then Dad, at the age of 89 and Mom’s constant companion for 74 years, died. We were all in the room and after some debate—Would be have to tell her this every day? Would she have to live this over and over?—we woke her so she could say goodbye. I have never, ever, seen such grief. And certainly not from Mom who, in the family tradition, kept a tight rein on emotions.
Fearing the worst, I arrived early the next day. She was sad and a bit lost but she remembered.
The second day—she remembered.
The third morning I found her crying softly in her bed, “I just want to be with your father.”
Without even thinking, I summoned the mother of my youth and said, “Well Mom, you should have thought of that before you began taking such good care of yourself.”
She laughed. “Well, that’s life.”
And from then on she put her feelings in a box. Though she said “Oh, Bob,” twenty times throughout the day, she reverted to her cheerful self—friendly and eager to join in and be of use.
Occasionally she would ask me,
“Do you believe in heaven?”
“I’m not sure,” I would answer, “But if there is, Dad is up there building you a boat and when you get there, he’s going to take you on a cruise.”
“Now you’re talking!” she would say with joyous anticipation.
And throughout the next seven years of her life, she continued to laugh and smile and take delight in every moment.
If there is a heaven, I’m sure Mom and Dad are cruising somewhere, happy as clams.
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Posted on April 11, 2017
Mom at 94 – 2013
Every time I visited Mom, she would ask me two questions over and over and over…and over.
What do I think Seattle will be like in 50 (or 250 or 500) years?
Do I think that women will begin wearing skirts again instead of pants?
In the beginning, I wasn’t her best foil. I quickly tired of question. I tended to be dismissive–saying I’m not sure and changing the subject.
Then I began taking it more seriously and it became a challenge to come up with different answers every time.
But I wasn’t taking her seriously. This was obviously of real concern to her. So finally I asked her what she thought.
“What do you think Seattle will be like in 50 years?” I asked.
“Well, I won’t be here,” she laughs.
“I wonder what it will be like,” I persist
Now she’s interested.
“Well, I think women will be wearing skirts again. “
“I don’t think there will be any room – the streets will be full with people everywhere.”
“My grandmother would be so amazed.”
“Do you think we will still drive cars?” I ask.
“There won’t be room. Maybe we will all fly.”
“Things change. That is just what happens – there is nothing you can do to stop it.”
She assumed that our visits would continue indefinitely.
Maybe you can come tell me what it’s like.
What an opportunity I missed. Now that I know about TimeSlips, Anne Bastings remarkable approach that focuses on the imagination not the memory, I think of the stories Mom would have spun—her wonderful imagination—looking back or forward or god know where—it would have been amazing to behold.
Now the issue of skirts was a little more challenging.
One of Mom’s recurring concerns is that women no longer wear skirts.
“My mother and grandmother would be shocked,” she says as she surveys the landscape on the lookout for anyone in a skirt.
So when my sister Jeanne was in town, we arrived at Mom’s door in skirts. Mom felt a little silly in chintz but there we were—three generations—Mom, her sister Louise, me, my sisters Jeanne and Sara, niece Lindsay—skirts billowing.
After 30 minutes, Mom was relieved to change into “something normal.” But it was fun while it lasted. Plus I have a photo.
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Posted on April 4, 2017
Many people have told me how difficult they find it to visit friends and family who have Alzheimer’s and dementia.
“We have nothing to talk about. I don’t know what to say.”
“It’s so sad—she is everything she never wanted to be.”
“She would hate this so much. This was her worst nightmare.”
So the pattern begins…
Visiting makes you sad or uncomfortable, so you don’t visit.
Not visiting makes you feel guilty, so you put off visiting again. “She won’t remember it anyway,” you rationalize.
When you finally do visit, you are even more of a stranger and the visits more of an obligation and a relief (for you) when over.
And so it goes…
“Doesn’t seeing how your mother has changed make you sad?” I am asked. (I’m pretty sure tears are expected.)
“Not really,” I say quite honestly. I find mother to be utterly charming, quite funny and genuinely life-affirming.
But it took an adjustment. I had to learn to stop projecting my fears on Mom, stop thinking about how I would feel if I were in her shoes, how unhappy I would be.
But I’m not in her shoes and this isn’t about me. When I began to listen and let her set the pace, when I learned to appreciate the pleasures of real time, when I was able to see Mom for who she is and not who I wanted her to be, there was no sadness—only love—and gratitude that I have been lucky enough to share this stage of her life.
I see Mom’s life getting smaller and smaller—more and more content within the comfort of her small room filled with photos and pictures of her happy childhood, her life with Dad, the friendly faces of her doll and stuffed animals, the pleasure in the moment. Her life is far from empty.
But she is lonely. Her smile lights up when I arrive—ready to talk, take a walk, play the piano, sing, chat and tell everyone how beautiful they are—eager to be active.
Recently Mom and I were marching through the corridors of Assisted Living singing Onward Christian Soldiers. (Nearly 95 but the woman loves to march.) She unexpectedly announced that she was going to get married again. (She and Dad were very happily married for 66 years.)
“Really?” I said. “Who’s the lucky man?”
“Oh, the same one,” she laughed.
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Posted on March 28, 2017
I came late to becoming a nurturing caregiver for Mom. I was too late for Dad.
Dad and I had issues. He was of a generation in which men didn’t easily show their emotions and he struggled even more with his contentious daughter. Fortunately we both lived long enough to overcome our differences and forgive each other. I think he had more to forgive than I but we got there.
In her early 80’s, Mom began to show signs of dementia. Dad followed but his Alzheimer’s progressed much more slowly than Mom’s. He had more immediate problems with Parkinson’s.
They moved into Supported Living—he for his increasing physical problems and Mom for her advancing dementia—and they remained a fiercely devoted couple.
By now he needed a wheelchair, a fact that Mom completely failed to comprehend.
“Hop up Bob,” she would chirp.
“Mom, Dad is in a wheelchair,” I would tell her.
“No, he’s not,” she would look at me in disbelief, clearly only seeing he big, strong, handsome man she had married.
He needed the help of the nursing staff to dress and undress, which totally enraged Mom. When she began interfering with the nurses (at one point trying to pour water on them) the exasperated staff suggested they move to separate apartments. Dad wouldn’t hear of it. “She is a wonderful woman.” And that was that.
Occasionally, to give Dad and the nurses a break, I would bring Mom to my house where we would walk in the garden or play scrabble. Once we were very late in returning. Dad was at the door, furious. He yelled at Mom (something I had never seen him do) and accused us of abandoning him. She fell to her knees, reassuring him that she was never leave him again. And what did I do? Behaved like the idiot daughter of my youth, glaring at him as I left.
He contracted MERSA and had to move to a skilled nursing facility. He was alone in a less than stellar facility—a drab, dispiriting place where he knew no one, with no idea of when he could return home to Mom. I brought her to visit but our visits were brief and to my shame, I was always relieved to leave. How lonely and frightened he must have been.
It was nearly two months before I was able to move him to a much better place—better staff, better care, better food—and he began to improve. Finally he came home. I began to spend more time with them. I became a better caregiver but I never really had my heart in it. I still looked at the clock.
For the last two weeks of his life, Dad slept and Mom watched over him. He died at the age of 89, Mom’s best friend for 75 years.
To help her fill the void, I took her to a painting class and it was her unexpected and glorious art that set me on my path as a caregiver—a labor of love and a journey of personal discovery.
What do I know now?
He must have been terrified. I could have done so much to make his life (and mine) better and happier.
- Be there – Simply sit with him, let him know by my presence that he was not going to be abandoned.
- Touch – A gentle reassuring hand on his back—better yet a gentle massage of his shoulders and neck.
- Favorite food—bring him something he loves to eat
- Hugs (despite the family dislike of physical intimacy, it might have been welcome after all these years, who knows?)
- Family photos – pictures of him and Mom, family vacations—the happy times, reminders of all that he did for all of us.
- Relax and not look at the clock
- Tell him you love him and mean it.
- Ask for advice
- And finally think more of him and less of me. Even better, think of us both as allies…in the storm.
I may not have been there for Dad but thanks to Mom, I have learned and I can be there for the next person who needs me.
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Posted on March 21, 2017
First some background. My mother was raised in White Bluffs, Washington in a family that really, really hated Franklin Delano Roosevelt. It was a common refrain of our childhood. In their 80’s, Mom and Dad moved to a senior living facility in downtown Seattle and the building looked down at the Roosevelt Hotel. Every time Mom saw it she would make a face and say, “You know we don’t like him.” As her Alzheimer’s advanced, her memories faded—except Roosevelt. From her room in Supported Living, she would see the Roosevelt Hotel and again, “You know we didn’t like him.”
Two months before Mom’s death—at the age of 96— she looked at me and said, “If everyone who says they are going to heaven goes, it will be too crowded so I’m staying here!”
Alas, one night her blood sugar level spiked to 600 and stayed there. I rushed her to the emergency room fully expecting that she would be back to normal soon. But there was a serious problem with her colon and she remained unconscious. Invasive surgery was out and we did as she would have wished. The doctors put her in a coma with an expectation of 4 to 5 days to live.
My brothers and sisters and I gathered around her to say goodbye, telling her how much we loved her, what a wonderful mother she was.
One day, about two days before she died, a few us were standing by her bed, singing and talking to her. We remembered her unquenchable dislike of Roosevelt and I swear Mom grimaced. Just to make sure, I was tempted to stand over her saying, “Roosevelt! Roosevelt! Roosevelt!” which, of course, wouldn’t have done at all.
But I was sure that Mom was listening. Over the next two days I sat with her, holding her hand and talking—saying goodbye.
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Posted on March 7, 2017
I promise. Tickets will soon, very soon, be on sale for ALZHEIMER’S TALKS—Perspectives and personal stories from Noteworthy Sources. This series of four fascinating conversations will open our hearts and minds to a new way of thinking about dementia—one that overcomes fear and stigma to find hope, connection, purpose and courage.
We are delighted to welcome Michael Reagan, Chef Madison Cowan and Gene Tagaban to this inaugural series and there is just one last speaker to confirm. She will enthrall you…
TICKETS: You will have a choice of purchasing single tickets for $35 each or a 4 show package for $100, a nearly 30% discount over the single ticket price. Full details and links to purchase to follow…imminently.
One update. Gene Tagaban will present both a conversation and a performance:
Ancestral Presence: Raven and Coyote together again!
A Celebration of Native American dance, song and story
This collaboration showcases the dancing styles of the Pacific Northwest and the Fancydancers of the plains. Traditional instruments of the drum, flute, and rattles set the space to invite the Spirit of Raven and Coyote to come alive through story, dance and song. We invite you, in the presence of ancestors to join us in this acknowledgment of life. Following his performance, he will share a Native American perspective on aging, healing and the power of creative expression to enrich the quality of life for all whose lives are touched by memory loss.
In the meantime, The Artist Within continues to fascinate, incredible artwork for the murals is being created, dementia friendly workshops in art, poetry, circle dancing and improv theatre are underway and every day I am reminded that while memories may fade, creativity and joy live on. We just need to look and listen.
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