Tag: hair

Joy, Life & Living, Love, Memories, Music

mom and her bff gaby sing happy birthday o canada

My Alzheimer's Story

July 1, 2014: Mom and I roll outside to sit with Gaby for half an hour before supper. Mom is able to stand and walk today so I help her from her wheelchair to the “deck” chair beside her friend.

“Oh Patti! Look at you!” Gaby is her usual supportive and enthusiastic self. “Look at your beautiful hair. Did you have it done today?” Mom touches her hair, looks at me. I nod my head.

“I had it done today. Is it nice?” She runs her fingers through it, checking again for herself.

“Oh yes! And isn’t that a pretty pink top? And the detail on the bottom of your pants – it’s very chic.” Gaby has something good to say about mostly everything and everyone. She notices things like the detailing on the pants; she worked as a clerk in a women’s fashion boutique decades ago. The white capris Mom has on are new. I bought them last week at The Bay, on sale. I also got a lavender pair, and a sky blue pair, as well as three matching tops. We can mix and match. “When you look good, you feel good,” Mom always used to say to me. Those kind of things still apply when you live with dementia.

“I love my Patti,” Gaby says to heaven. We sit and rock and talk about nothing, watch the traffic go up the hill beside The Home.

“That’s a big truck eh Mom?”

“She erased it. I, I, I…” Alphabet soup from Mom.

“Leblanc Farm.” Gaby reads the branding on the side of the rig in the few seconds it takes for it to go by. “That must be a big farm.”  She’s as sharp as a tack.

It’s a scorcher of day. There are tornado warnings for southern Ontario, a nine-hour drive from where we sit in relative safety in southeastern Quebec.

“I wonder if we’ll be hit with the tail end of a storm?” I muse.

“Oh dear.” Mom worries. Gaby holds Mom’s left hand in hers. Mom rat-a-ta-tats the top of Gaby’s right hand with her right one. It’s a sign of affection. She loves her Gaby as much as Gaby loves her, but she doesn’t say so in so many words. Instead, she gives her love taps on her hand. Gaby knows they’re love taps; others don’t. That’s part of the reason why Mom is medicated with antipsychotics. For giving people misunderstood love taps.

I take some pictures. We sing O Canada. We love our country and each other. July 1, 2014: a good day.

Seven weeks after I filmed this video, our friend and angel Gabrielle went home on August 20, 2014, after she fell (maybe because of the Risperdal she was being given), and broke her foot. Gaby’s goal had been to make it to 100; she was close. Mom joined her two years later on August 17, 2016, after she too fell, and broke her arm.
I hope the two of them are raising Cain wherever they are.
Care Partnering, Life & Living, Love, Toward better care

an open letter to those who think they know better

My Alzheimer's Story

elder abuse man painterly

Dedicated to unappreciated care partners worldwide. Thank you for all you do.

Dear random person who sees my care partner from time to time and feels the need to point out s/he has bruises all over her/his body that look frightening and s/he has really declined a lot since the last time you saw her/him and s/he can barely walk anymore and s/he’s asleep when s/he should be awake and sometimes vice versa and you hardly recognize him/her as the person you used to know and you’re really shocked and feel bad seeing him/her like this and isn’t it sad and a shame and this is what you would or wouldn’t do if you were me and you would rather be shot than end up like this,

Yes; I know. I know what you think.

But you know little of me and/or the situation in which my care partner and I find ourselves. You think you do, but you don’t. Pretty much the only people who get it are those who have been through it, and you clearly haven’t otherwise you wouldn’t say the things you do and I wouldn’t need to write this letter to you.

I either live with my care partner or I visit her/him almost daily. I spend endless hours and fleeting moments with him/her talking nonsense and singing and just being together, because one day soon s/he will be gone. Every minute with him is torture; every second with her is precious. I know by the way s/he rocks back and forth when s/he wants to get up and get moving, and by the look on his/her face and the feel of her/his hand in mine if s/he is able to stand unassisted. Mostly s/he’s not, so I am by her/his side whenever I can be. When s/he is able, we shuffle around wherever we happen to be to get some exercise.

I know by the way she pats her hair that she loves the fact that it’s “done.”  I know the colour and brand of her nail polish because I supply it. I know when she had her last manicure because I was the one who gave it to her.

I know by the way he touches his face that the cut just above his left brow worries him. I know the kind of aftershave he prefers, so I buy it to help him know he’s the same man he used to be: the man who was and still is the love of my life. I know by the way he reaches out to me when I’m near that my presence is important whether he recognizes me or not.

I know when his/her sleep is unnatural by the slackness of his/her mouth and the rhythm of his/her breathing. It breaks my heart that s/he is being medicated for normal behaviour which could be addressed and resolved without drugs. I can’t change that; I would if I could.

What I can change is a soiled adult brief, and I do so often. No one showed me how. I figured it out myself, just as I’ve learned everything else I wish I’d never had to learn about being a caring partner to someone who lives with dementia. I didn’t asked for this. I never wanted it. But here I am. What can I do?

I recognize her wheelchair by the stain on the seat. When she can’t feed herself, I help her to eat like she helped me when I was a baby. When she’s able to eat by herself, I celebrate a small victory. I help her engage with her shrinking world, not simply exist in it.

I see her/him in ways you can’t even begin to imagine. We are reflected in the mirror of each other. I have cried with her/him, comforted her/him and felt the sting of her/his acid Alzheimer’s tongue. I pray for her/him to stay and go. I watch her/him look death in the eye and grab life by the horns every day despite her/his illnesses. I am her/his cheerleader, her/his advocate, her/his voice. I am her/his child/parent/spouse/sibling. Our souls are linked; our destinies are intertwined. We are more deeply connected than we have ever been.

Who are you? You are a casual observer making ill-informed assumptions and coming to erroneous conclusions based on incomplete information. You mean less than nothing to me. My care partner means everything to me. I have experienced first hand the effects of decisions I’m told are in his or her best interests, but which in reality have little or nothing to do with her/his health and well-being and everything to do with convenience, reducing costs and conserving her/his wealth for someone else’s use once s/he’s gone.

The effects of the decisions in which I have no say include the cuts, bruises and other conditions about which you feel compelled to apprise me. Your thoughtless and insensitive comments add salt to other wounds you cannot see. You don’t know me. You don’t know my circumstances. You don’t know my parent/spouse/sibling/child although you may think you do, and because you think you do you also think you have a right to judge me or her/him or the situation in which we find ourselves.

The next time you feel tempted to comment, judge, berate or advise me on aspects of my care partner’s condition  or my role in her/his life, please consider all of the above and mind your own business instead of mine.

I don’t need or want your judgment or your unsolicited advice.

Regards,

Unseen and unheard care partners worldwide

P.S. to all the beautiful friends and acquaintances everywhere (especially those in online support groups whom I may never meet or know personally) who support without judgment and share their wisdom and experiences without expectation: thank you, I love you and I am so grateful you are here to hold my hand ❤

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Copyright: bialasiewicz / 123RF Stock Photo

Care Partnering, Life & Living, Love

an open letter to people who think they know better

My Alzheimer's Story


This post is dedicated to care partners worldwide, many of whom are unseen and unappreciated. On behalf of those you care for, thank you for all you do.

July 13, 2014: Dear random person who sees my mom from time to time and feels the need to point out she has bruises all over her body that look frightening and she has really declined a lot since the last time you saw her and she can barely walk anymore and she’s asleep when she should be awake and sometimes vice versa and you hardly recognize her as the person you used to know and you’re really shocked and feel bad seeing her like this and isn’t it sad and a shame and this is what you would or wouldn’t do if it were you and you would rather be shot than end up like her,

Yes, I know. I see Mom virtually every day. I spend endless hours and fleeting moments with her talking nonsense and singing and helping her to stand when she wants to. Every minute is torture; every second is precious. When she is able, she and I shuffle around the sun deck at the ElderJail in which you may have briefly visited her (or not) and in which she and I have spent hundreds and hundreds of hours together.

If you did drop in to see her, did you notice some of the flowers in the planters around the deck at the “care” facility are the same kinds Mom nurtured in her own window boxes, the ones she loved to water in the early evening with her green watering can and rain collected in the old wooden barrels at the southeast and northwest corners of the big red brick house on the hill where she lived for more than 40 years? You didn’t? What a pity!

She loves begonias, geraniums, petunias and impatiens. She had cosmos, daffodils, daisies and phlox in her garden. We joyfully rediscover flowers each time we explore the sun deck at The Home which is not really a home at all. It’s just a necessary evil on the road to her final destination.

Mom touches a wound on her face (2014)

I know by the way she rocks her body back and forth when she wants to get up and get moving, and by the look on her face and the feel of her hand in mine if she is able to stand unassisted. Mostly she’s not, so I am by her side whenever I can be. I know by the way she pats her hair that she loves the fact it’s “done,” and by the way she touches the cut on her face that it worries her.

I know the colour and brand of her nail polish because I buy it. I know when she had her last manicure because I did it. I know when her sleep is medicated and when it’s natural by the slackness of her mouth and the sound of her breath.

I change her “diapers” and clean her bottom. I recognize her wheelchair by the stain on the seat. When she needs me to, I feed her like a baby. When she doesn’t, I celebrate that she can lift a fork to her mouth and feed herself. I have cried with her, comforted her and felt the sting of her acid Alzheimer’s tongue. I help her engage with her shrinking world, not simply exist in it.

I see her in ways you can’t even begin to imagine. I see us reflected in the mirror of each other. I pray for her to stay and go. I watch her look death in the eye and grab life by the horns every day despite her illnesses. I am her cheerleader, her advocate, her voice. I am her child/mother. Our souls are linked; our destinies are intertwined.

Who are you? You are a casual observer making ill-informed assumptions and coming to erroneous conclusions based on incomplete information. I have experienced first hand the effects of decisions I’m told are in her best interests, but which in reality have little or nothing to do with her health and well-being and everything to do with convenience, reducing costs and conserving her wealth for someone else’s use once she’s gone.

The effects of the decisions in which I have no say include the cuts and bruises about which you feel compelled to apprise me. Your thoughtless and insensitive comments add salt to other wounds you cannot see. You don’t know me. You don’t know my circumstances. Neither do you know my mother or hers.

Next time you run into me on the street or at the theatre or outside the care facility or even inside the care facility and are tempted to comment, judge, berate or advise me on aspects of my mother’s condition or her care or my role in her life, please consider all of the above and mind your own business instead of mine.

If and when I want your advice I’ll ask for it.

With gratitude,

Susan

P.S. to all my beautiful friends and acquaintances worldwide who give me oodles of unconditional love and support and share their wisdom and experiences with me when I solicit their input: thank you, I love you and I am so grateful you are here to hold my hand ❤

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

https://myalzheimersstory.com/2016/10/28/6-reasons-why-staff-in-long-term-care-facilities-dont-report-incidents-of-elder-abuse-and-neglect/

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Family, Life & Living, Memories

on mothers, daughters and bad hair days

My Alzheimer's Story

susan wannabe model“Oh Punkie! “ (That’s my nickname.) “I’m so glad to see you! You look great! I love your hair,” Mom would say every time I came to see her.

Or at least that’s what I wished she would have said. To be fair, I usually did get the “I’m so glad to see you” part. It was what invariably followed that cut like a knife.

“Your hair’s so short. What did you do to it? I like it so much better a bit longer.” Or: “Your hair’s so long… Don’t you think it’s time for a cut?” Or: “When did you start parting your hair on the left? I think it suits you better on the right, don’t you?” Or: “When did you start parting your hair on the right? It’s so cute when you do it on the left. Here let me show you…”

Yes, there has always been something wrong with my hair, it was too long, too short, too curly, too straight, too recently cut, not cut recently enough, better up, better down, and/or better the way it was last time, even though last time it had been so much better the time before that.

Yes, there has always something wrong with my hair, and clearly, by extension, there has also been something wrong with me. My hair and its not-good-enoughedness is a metaphor for me and my ongoing failure to measure up. I am a cracked and broken toddler who has somehow managed to stumble my way through 55 years of life beyond the “terrible twos.”

Sometimes I am lost and found. Other times I’m invisible. One time, in my adolescence, when my mother and I were visiting my grandmother, it was decided (certainly not by yours truly) that I should get my hair cut at my grandmother’s hairdresser.  Her name was Giselle.

Susan grade 9Like me, my hair was particularly hard to manage in my teens. In those Grade-9 days (<= see), the fashion was to have your bangs (“toupette” if you’re Quebecoise, “fringe” if you’re a Brit) hang in your eyes like a sheepdog. No doubt this drove all mothers of teenaged daughters, not just mine, crazy.

As I set off for Giselle’s, I knew it didn’t matter how short she took my bangs, they would not be short enough. Giselle razored them to what surely would have been a reasonable length, a length in keeping with the cut. But I, to please my mother and avoid a fight, asked Giselle to cut them “just a little bit shorter, please.” She complied. Reluctantly. She was a hairdresser after all. She knew hair shrinks skyward when it dries. But I was short on experience, and long on suffering my mother.

I returned to my grandmother’s house in a flood of tears, my bangs a few millimeters short of my hairline, my life, clearly, over. As I walked in the door, my grandmother clapped her hand over her mouth, and began to laugh. My mother followed suit.

“What happened to your hair?” They choked in unison. The flood became a tsunami. I raced upstairs, flung myself on Gran’s guest bed, angry, humiliated, and inconsolable. For the eternity (i.e. several weeks) it took for the disaster to repair itself, I wore my hair in a bald man’s comb-over to hide the abomination of my bangs and avert the ridicule of my classmates.

I went on to become prematurely silver in my late twenties, expanded into being a cut above during the continuum of my thirties and forties, and blossomed fully in my fifties. (Ongoing transformation is the story of my life. I wonder what the last chapter holds…?)

Mom doesn’t care so much about my hair anymore. And it sometimes takes her a minute or two to figure out who I am when I go to visit her. But once she realizes I’m related to her, that I’m part of her family (perhaps her daughter, or maybe her sister), she smiles, grateful, and says: “Hi Punkie! “ (She remembers my nickname so far.) “I’m so glad to see you!” No mention of my errant hair, even if it’s streaked with pink or purple.

Better late than never, I guess, but bittersweet all the same.

 

Written in spring 2013.


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