I asked the care partners in one of the Facebook groups I belong to a simple question:
What would help reduce your stress, improve your ability to provide care to your person living with dementia and make your life and their life easier?
It turns out they don’t need anything extraordinary in the whole scheme of things. Simple stuff is what they need. Most of all, they need help and support. They need friends and family to chip in. They also said they don’t want to be alone, forgotten, isolated or destitute. It’s not complicated.
Here’s a sample from the answers I got:
Someone who is trained AND totally understands dementia to stay with my dad from time to time.
Someone I trust to agree a regular standing arrangement to come over and stay with Mom so my husband and I can get away and have some sort of love life. Even if only for a weekend.
His family and friends to come and see him or at least to call him like they use to.
Some way of reducing the isolation in my life, so that I could spend some time in the real world with real, not invisible, people.
Short list: One person that I could call and say “I need help with mom” and they would come. No explanation needed. Nobody wants to beg for help. Visitors to improve her mood, a much needed break at least once a week.
Affordable care of any kind would help. Friends and family who don’t toss me, the caregiver, by the wayside. Perspectives on communication or how to communicate with a loved one who does not listen, does not pay attention, and does not think about what they are doing. I’ve tried signs, alarms, phone reminders. Someone to talk to that will just let me talk or vent. The isolation is unnerving.
A thank you now and again. From anyone. Anyone at all.
Are you the “someone” a dementia care partner somewhere needs? If you can help, even a little bit, please do.
Pistorius sank into a vegetative state for four years after being struck by a mysterious disease at the age of twelve. His mind began to emerge from the coma at 16, but his body, with the exception of his eyes, remained paralyzed. No one around him, including his family, knew he was conscious because he was unable to communicate.
This is what it must be like for people with dementia in the later stages, I thought. They are trapped inside their bodies and cannot make themselves understood.
Pistorius’ book is fascinating. It describes what life was like for him as a “ghost boy” until, after years of him being aware but no one knowing he was, one of his caregivers saw glimpses of his potential and arranged for him to be tested; he was 25 years old.
Throughout this time, his father was adamant that Martin should be with his family, so he resided at home and spent his days at a facility for severely disabled children. When his parents traveled, usually once or twice a year, young Pistorius was taken to a “home in the country” where he lived round the clock for several days or weeks while his parents were away.
In a chapter entitled Memories, Pistorius graphically describes the abusive treatment he received in this place:
“Eat it, you f—ing donkey,” the caregiver snaps at me.
I stare at the mince lying gray on the spoon in front of me. I’m 21 years old and still the ghost boy.
“Eat it!”
I open my mouth, and burning hot food is shoveled in. The rancid taste fills my mouth. Bile rises in my throat. I forced myself to swallow.
“And another.”
I open my mouth obediently. I know I must try to think of something else if I’m to persuade my stomach to accept what it is being fed. I look around the room. The jarringly soft strains of classical violins play in the background as I look at the other children here. Some cry; others are silent. My throat burns as I swallow.
“Hurry up, you heap of rubbish. We’ll be here for hours if you don’t speed up.”
The metal spoon crashes against my teeth as she forces another mouthful into me. I wish she would leave me hungry, but I know she won’t.”
Pistorius goes on to say how terrified he became each time he knew he would be taken to this “home in the country:”
“As my heart beat and my throat tightened, I would long to scream and wondered if I could make my parents hear my thoughts if only I tried hard enough.
But the one thing I wished for more than anything else as I sat strapped in a seat, powerless to tell anyone about what I knew would soon happen to me, was for someone to look at me. Surely then they would see what was written on my face? Fear. I knew where I was. I knew where I was going. I had feelings. I wasn’t just a ghost boy. But no one looked.
When my mother or father finally came to pick me up, I listened helplessly as they were told I’d had another good stay.”
Martin Pistorius eventually emerged from his silent hell. He learned to communicate using a computer. He became a web designer, he married, he wrote a book, and he gave a TED talk.
But I cried through the chapter called Memories. I cried for Martin Pistorius’ pain and suffering and for his helplessness.
And I cried for all the vulnerable people in this world, many of them with dementia, many of them elderly, who are trapped like Pistorius was, who are unable to make their voices heard, who have no one to advocate for them, who suffer in silence and who are powerless and often forgotten.
Alzheimer’s dementia care partners everywhere despair as their loved ones’ friends and sometimes even their family members seem to disappear, leaving both the person with dementia and their care partner feeling isolated and alone at a time when they need friends and support more than ever.
I know what it’s like; I’ve been there myself. It’s devastating, debilitating and soul-destroying.
There may not be any pain greater than being helpless in the face of a loved one’s suffering. When requests for help are refused, it compounds the misery.
MaryBeth Beamer captures the agony of her husband Alan Beamer in this gone-viral video:
In response, Laura Bowley of Mindset gathered a group of her friends who live with dementia (Jan Ford, Kelly Wood, Teresa Webb, Mary Beth Wighton, Michael Ellenbogen, and Chuck Frichot) to send this message of support and encouragement:
They may not remember clearly, they may repeat, they may behave differently than they did before, but they are still there. Their spirits are alive and well.
Don’t run away from people living with Alzheimer’s disease and other forms of dementia.
Run toward them. Reach out to them. Hold their hands. Love their hearts.
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“Hey Mom! There’s Stella,” Cricket said as she and Annie rounded the corner into The Home’s drawing room.
Stella sat in a big red armchair in the far corner. She looked up from the sock she was knitting.
“There you are,” Stella said smiling. “I was just about to leave because I don’t like to sit here all alone.”
“Well, you’re not alone anymore,” Cricket said. “Mom and I are here. Will you stay and chat with us for awhile?”
“Of course,” Stella’s reply was immediate. “I’ve missed you the last few days.”
Sometimes their timings didn’t match up, or one of Stella’s children took her on an outing.
Cricket rolled Annie as close as she could to Stella’s chair and stopped.
“Look Mom,” she said. “Here’s Stella.”
“Who’s Stella?” Annie stared into a space about three feet to Stella’s left and four feet behind her.
Stella, who was in her late nineties and still had all her faculties, set her knitting in her lap, reached out with her right hand and placed it gently on Annie’s knee.
“Hi Annie, it’s me Stella. I’m glad to see you. I’ve missed you.”
“Hello Stella,” Annie said. “Oh you’re a good girl.” She swivelled her head and eyes until they zeroed in on Stella, and then tapped the gnarled hand on her knee and smiled.
If Cricket had believed in God, she would have offered up a prayer of thanks. Instead, she just let gratitude flood through her for Stella, this place and the host of angels who staffed it.
Annie was recovering beautifully from a string of disasters in other facilities; after only six months in this new place she was like a different person. Cricket wished she had found The Home earlier. She would have spared her mom the suffering she’d been through the previous two years.
But better late than never.
Better late than never was her consolation.
This is the third instalment in a fictional series about Cricket & Annie; more here.
Stella’s hands worked without pause. She didn’t look up.
Pearl one, knit one. Pearl one, knit one.
Cricket knew nothing about knitting, but she’d heard “Pearl one, knit one,” somewhere and imagined that’s what Stella might be silently saying to herself as the needles clicked.
“How did you get the name Cricket?”
Cricket laughed.
“What did she say?” Cricket’s mother Annie asked.
Laughter always sparked something in her, despite the dementia.
“Stella wants to know how I got the nickname Cricket, Mom.”
“Oh. She wants to know how you got the name Picket.”
Her hearing was fine. Her processing not so much.
“Cricket, Mom,” she enunciated more clearly.
“Cricket.”
“Yes, that’s right.”
“Oh dear.”
They sat side-by-side on a worn-out sofa. Multiple lacerations in the slip covers exposed the dull yellow foam underneath. Cricket had her arm around her mother’s shoulder; she pulled her a little closer.
“You know the expression ‘It’s just not cricket’?” Cricket directed her question at Stella.
“Yes,” Stella replied.
“It’s just not cricket,” her mother repeated.
“It means something is unfair. It means something unjust or just plain wrong is being done to someone or something. It comes from the game of cricket,” Cricket elaborated.
“Something just plain wrong is being done to someone,” her mother echoed.
“Yes, that’s right, Annie,” Stella agreed.
“Well, it’s not from that,” Cricket deadpanned. Stella chuckled. Annie looked blank.
“I was born in August, right Mom?”
“You were born in August.”
Repeating was a comfort, and Cricket helped Annie do it. It was a way for her mother to contribute to conversations, to feel connected, to express herself when other means failed.
“That’s right Mom. In August.”
Stella glanced up from her sock-in-progress, and nodded encouragingly.
“You used to tell me the crickets were in full song when I was a baby Mom, and I was really chirpy just like them–especially at night.”
“Especially at night,” Annie said.
“Yeah. So that’s how I got the name Cricket, Stella. From the mating sounds of insects on hot summer nights,” she laughed at the irony of telling the story on a blustery November afternoon fifty-five years after the fact.
This is the second instalment in a fictional series about Cricket & Annie; more here.
Flashback August 20, 2015: “I love my Patti,” Gaby told me just about every day for a year and a half.
There’s nothing particularly remarkable about that. People say “I love you” at the drop of a hat these days. But Gaby didn’t just say it. She radiated unconditional love like the sun’s warmth on a summer day; showered Mom with it like a gentle spring rain; enveloped her in it as one might cocoon a chilled soul with a thick, soft blanket on a cold winter night. I was privileged to witness this profound connection, and I’ve been challenged to capture it in words and images. But I’ve tried.
In March 2013, a few months after they first met I wrote (in a longish post about being lost and found):
The way Gaby looks at my mother cleaves my heart in two. It’s full of sheer joy, acceptance and love; it’s amazing to behold. Gaby’s and Mom’s friendship has deepened in tandem with my mother’s declining capacity over the past five months. That Mom is becoming more and more lost in an Alzheimer’s haze doesn’t faze Gaby in the least. She just looks at Mom and smiles, nods, and agrees with whatever gobbledygook finds its way from my mother’s mind to her mouth.
In loving words at sunset(which was featured on FreshlyPressed and has been viewed thousands of times) I eavesdropped while the sat watching the sunset:
“I’m glad I’m here with my friend Patti, enjoying the sunset,” Gaby says.
“Is it time to go home yet?” Mom replies.
“Almost.” Gaby slides her hand down Patti’s purple-splotched forearm. She gathers Patti’s hand in her own. “We’ll go together,” she says.
I blogged about the time Mom serenaded us with Zippity Do Dah. I captured on video what it looks like when an angel loves you. I videoed as they sang O Canada together on July 1, 2014. Five days later, I took the touching one-minute clip below of Mom and Gaby parting company before dinner – Gaby still ate in the main dining room; Mom had to go to the second floor. They planned to meet afterward and cause a ruckus.
Not long after, I discovered some promises, like some rules, are meant to be broken. I snapped dozens of pictures of the two of them and a few of the three of us as we shared this earthly space. I felt deeply grateful every minute we were together . The last time the three of us had dinner, Gaby and Mom watched a flock of seagulls on the lawn while I cleaned up afterward. Just before it was time to go, Gaby said to Mom:
“That’s nice of those birds to come here. And walk around for us to watch them.”
I felt the tender center of my heart cave in on itself. A second or two later as if on cue, the seagulls took wing leaving Mom, Gaby and I to do the same. I will be devastated when Mom goes home. But our angel Gabrielle will be there to welcome her and raise Cain. That’s one more thing to be thankful for.
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Could their chairs be any closer together? Gaby and Mom, August 27, 2013.
Flashback August 27, 2013: I love to treat Mom and her BFF Gaby to lunches and dinners at my place.
Mom, who is in her mid eighties and living with the later stages of Alzheimer’s disease, can’t really carry on a “sensible” conversation anymore. Her friend Gaby is 97; most of her marbles are still very much intact. Gaby’s only major complaint (about which she hardly complains at all) is the corn on her foot, which sometimes makes it painful for her to walk. She’s also becoming a tad hard of hearing. Other than that, she’s golden.
Mom and Gaby found each other at The Home, where Gaby has lived for about six years, and Mom coming on a year now. They met after Mom moved into the room next to Gaby’s, and they became neighbours. Their friendship is flourishing, despite Mom’s ongoing slide into dementia. They share a table, along with two other residents, in the dining room at The Home; they have breakfast, lunch and dinner together. Mealtime conversations are infrequent. People waiting to die don’t have much to say it would seem.
I visit Mom and Gaby at The Home almost every day, and I bring them to my place once a week for lunch or dinner, one of the few small pleasures they’re still able to enjoy. The atmosphere is loving and lively at my place. The three of us find more to say, to do, to be and to sing.
On this particular early summer night, Mom and Gaby help set the table. They hold hands and teeter slightly as they arrange the knives and forks while I prepare a simple feast: tuna salad with celery and mayonnaise, a few leaves of local lettuce, crisp carrot sticks, golden-toasted sesame seed bagels, and mixed olives.
They drink orange juice in crystal highball glasses I took from Mom’s real home when we decamped, and I sip sauvignon blanc from a funky goblet my cousin gave me. After dinner, I make Mom and Gaby comfortable on the back deck, then ferret out something “delicious and nutritious” for dessert: fresh peaches with yogurt and honey. On the way back to serve them, I stop short of the screen door that opens onto the deck, and pause to eavesdrop on their sunset conversation.
“Isn’t that a beautiful sky?” Gaby says to Mom.
“Yeah, and I told them it was. Dad thinks so too,” Mom looks around. “Where’s Dad?”
“Yes, you did,” Gaby says. She waits for this to sink in before she goes on. “He went to get our dessert.”
A moment of silence. Then another. Then several more. Gaby reaches over and gently feels Mom’s left arm, which is bruised because of the Coumadin Mom is being given to stop blood clots from forming in her swollen legs. She used to stride, purposeful; now she shuffles, uncertain, because of the drugs she shouldn’t be taking.
“Are you cold?” Gaby asks.
“No, I don’t think so,” Mom says. She pauses; searches. “Do I feel cold?” A fresh breeze blows through the screen door. Goosebumps rise on my arms; something in my chest squeezes like a sponge.
“You feel a bit cold,” Gaby says to Mom as she withdraws her hand. Together, they hold space for each other: Gaby in the slightly laboured rasp of her breath, Mom in the tissue she folds and unfolds, folds and unfolds, folds and unfolds in the cradle of her lap. The sun sinks a little more.
“Are you cold Gaby?” Mom asks. It’s not unusual for her to parrot what’s been said to her. It’s a way for her to conquer the aphasia that steals more of her words each day.
“No,” Gaby says as she turns to look at her friend. “I’m not cold. But you feel a bit cold.”
“I do?” Mom says.
“Yes,” Gaby affirms. Whatever Mom says, Gaby agrees. They never argue.
More silence. One looks this way, the other one that. They stare at nothing in particular: nothing in particular being the main thing they contemplate day in and day out. They have many days in. Days out are fewer and farther between. Gaby swings her right foot, and inadvertently kicks Mom’s left.
“Did I hurt you?” Gaby worries.
“No,” Mom replies.
“I wouldn’t want to hurt my friend Patti. You’re my best friend.” Gaby touches Mom’s arm again.
The sun keeps setting, as it is wont to do on kindred spirits everywhere, each day earlier and earlier until late December, then later and later until late June, when the cycle recycles itself. I guess it’s the other way around in the southern hemisphere, and different again at the poles.
Gaby and Mom don’t care about the hemispheres or the poles. They don’t worry about the length of the days: short, long, makes no difference. They’re all the same. Except days like this, when they get to go out. These are special days, even if they don’t remember them. I vow to myself that I will, until, like Mom, I don’t anymore.
“Your hair looks nice, Patti,” Gaby says. I wonder how many times Gaby has paid Mom this compliment today. Three? Five? Ten? More? Mom says nothing. She touches her head with her right hand. Pushes a roller-induced wave in and up. Still nothing. Perhaps she’s already forgotten Gaby’s words. Or maybe she needs a mirror to confirm their veracity. Not knowing the truth of one’s own reality is part of the disease.
“And that top looks beautiful on you. You have the nicest clothes,” Gaby continues, heaping one heartfelt compliment on another because she adores her friend. Mom looks down at herself. She moves her hands to just below her waist and pinches the bottom of the light-beige-and-white-striped shirt she’s wearing. She stretches it down and out to see it better. The stripes in the top match her caramel capris.
“Do I?” Her voice is flat, her face expressionless–more side effects of the medications that make her shuffle instead of stride.My hands tighten on the bowls of peaches and yogurt when I think of the drugs, the ones that kill my mother’s vibrant personality for convenience and cost saving.
“Oh YES! You are so stylish.” Gaby bursts with enthusiasm.
“Am I?” Mom doubts.
“Oh yes! Very! I wish I was stylish like you,” Gaby says, her grin as a wide as the horizon. “And you have such beautiful rosy cheeks. I love your rosy cheeks.” She leans in closer; her hand once again rests like a crooked feather on Mom’s arm. She plants a slow kiss on the pinkish flush of Mom’s left cheek. She’s oh-so-careful not to bruise her. Mom says nothing.
“I’m glad I’m here with my friend Patti, enjoying the sunset,” Gaby continues.
Mom seems not to have heard. “Is it time to go home yet?” she asks.
“Almost,” Gaby replies. She slides her hand down Mom’s purple-splotched forearm, and curls her craggy fingers around Mom’s soft, plump ones. “We’ll go together,” she says, and kisses Mom again.
I swipe the back of one hand under both eyes, nudge open the screen door with my foot, and step into the oncoming twilight.
In honour of Mom and Gaby who are surely raising Cain, wherever they are now.
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My Alzheimer's Story 