Mom was born on September 27, 1928. If she were still alive, she would have been 94 today, September 27, 2022.
On her birthday in 2015, her last one here on this earth, I visited her in jail, just as I did almost every day for several hours for four years. Here’s how I greeted her and how she responded:
Mummy is what she called her own mother. The full and wonderful story of what happened on her last birthday may be read at the three posts below (or here, here and here). Not surprisingly, reading them again just now made me cry ❤
I had never heard Mom sing Down in the Valley. Ever. Until a couple of years after she was diagnosed with Alzheimer disease. Then she (we) sang it every day, sometimes five or six times a day, until just before she died.
“Why don’t we sing a song Mom?” I would say when things were getting a bit out of hand, when either she or I was feeling stressed or angry or sad, or when I had run out of other things to do to keep us both occupied.
“Okay,” she would respond.
“What do want to sing Mom?” I always asked before I made any suggestions of my own. It gave her a modicum of control as her world was spinning out of it.
“How about Down in the Valley?” She would almost always reply — It was her go to.
Mom had a beautiful voice. She knew all the words. I fell short on both counts, at least at the beginning. I learned the words eventually–to Down in the Valley and dozens of other tunes– but my voice would never match hers. Ever.
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My mother, who lived with dementia, was chemically and physically restrained every day for the forty-five months she lived in a dementia jail (aka a long-term care facility or nursing home).
These restraints could have been avoided if the medical personnel in charge of her care had addressed the root causes of the behaviours they found challenging in her. All they needed to do was to take a closer look at what was going on around Mom. If I could do it, surely they should have been able to.
When Mom was sedated, she was unable to do things she loved to do such as walking and singing. Here she is not singing (because she had been sedated an hour or so before), at some of the weekly sing-alongs conducted by volunteers at the place she resided:
Besides cruelly sedating her with antipsychotic drugs, no one who was involved with my mother’s care listened to my request to provide her with music therapy. So I hired a music therapist myself and the three of us enjoyed many happy afternoons together after the worst sedative effects of the chemical restraints had worn off. Here’s an example of one of those wonderful sessions:
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Many things about the human condition are universal. Our ability to connect through music is one of them. Music is a powerful way to forge and strengthen bonds between people of all ages, faiths, races, brain health, genders, and whatever! Music, it would seem, is at the heart of our souls. I experienced the joy of music with Mom time after time and am so grateful to have learned as much as I did about its power as we lived with Alzheimer’s together.
The video clip below, of American teen Olivia Erway singing “How Great Thou Art” to her great grandmother is joyful and touching. Mom also knew this hymn, among hundreds of other songs. I was first introduced to it during the Thursday morning sing-alongs in ElderJail. I’m not a religious person, and, although I knew the words after awhile, I never did sing along to this song — kinda’ goes against my grain. That said, I appreciate the beauty of Olivia’s voice, and the power of music to build bridges across all kinds of divides.
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I can’t carry a tune in a bucket. But Mom had a lovely voice, and she knew hundreds of songs, a few of which I learned during our last five years together. I had never heard The Tennessee Waltz before Eric played it in one our healing music sessions, which I started with Mom in November 2013; The Tennessee Waltz quickly became one of my favourites. The 1950 Patti Page mega hit has been covered by some of the world’s most renowned female singers including Connie Francis, Emmylou Harris, Anne Murray, and Bonnie Rait and Norah Jones (see below).
Here’s Mom singing it with Eric and I on January 25, 2014:
Connie Francis (1959):
Patsy Cline (year unknown):
Emmylou Harris (1981):
Anne Murray (year unknown):
Bonnie Rait and Norah Jones (2007):
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Christmas isn’t all it’s cracked up to be for many people who, for whatever reason, find themselves alone or feeling alone. This poem is about the grief, sadness, and despair that many, including myself, may experience. If you feel like this, you may find some comfort in knowing you are not alone at this time of year or any other time of year for that matter. Difficulties are part and parcel of the human condition.
In the end, all things pass. And there’s hope in that.
P.S. I’d never heard The White Cliffs of Dover until I sang it with Mom after she moved out of the big red brick house on the hill. I thought it the perfect finish for this poem.
i’ll be glad when christmas is over
by punkie 2017
when christmas is over
i won’t have to pretend
to feel jolly and bright
when I’m empty within
i’ve no brothers or sisters
my family’s all gone
there’s nothing but darkness
where once the sun shone
what’s that you say?
be of good cheer?
how can I? who would?
i cry through my tears
my friends all have children
or parents or cousins
get-togethers to go to
sometimes by the dozen
but i’m not invited
to join in their parties
with ribbons and wrapping
and stuff hale and hearty
i wish i were happy
with all that I have
instead i feel lonely
forgotten and sad
but don’t get me wrong
please don’t be mistaken
your pity’s unneeded
as i’m not forsaken
no I’m not alone
oh no not at all!
there are millions more like me
someone’s neglected to call
those who give care
with little support
“we don’t have the time!”
their families retort
old folks in bad places
that none go to see
seems they’ve become
unwanted debris
homeless on streets
in boxes and sheds
without any blankets
or even a bed
people flee their own countries
escape in small boats
then drown by the thousands
because they don’t float
the seasonal spirit
to some is a bottle
or the comfort that’s found
in the folds of a brothel
like everything else
this too shall pass
just as happiness ends
the sadness won’t last
so don’t worry, don’t fret
it’s just the holiday blues
all will be fixed
in the year that is new
our hopes they ring out
like bells on a sleigh
the path will be found
with a will and a way
things may have changed
by this time next year
though the dearth of much promise
fills my heart with cold fear
perhaps if i write
dear santa a letter
next year he’ll deliver
a world that is better
so yes, I’ll be glad
when christmas is over
as i look forward and back
to the white cliffs of dover
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Unbeknownst to most of the world, Santa was diagnosed some time ago with Alzheimer’s disease. Luckily, he has a great support system at the North Pole, and Mrs. Claus knows exactly what to do to keep him engaged with life, as well as to ensure that he’s healthy and happy. We could all benefit by following Mrs. Claus’s good example.
Whatever we believe is real.
santa claus lives with dementia
by punkie 2017
Listen here:
Read here:
“alzheimer’s it is”
the doc says to the clauses
“no cure in sight,
and no clue to the causes
“write your will, take a pill,
give in to your fate
there’s nothing to do
with this disease we all hate”
but the clauses aren’t ready
to throw in the towel
they decide to live on
even if cheek by jowl
the mrs. she knows
it brings santa great joy
to distribute fun gifts
to the world’s girls and boys
she assembles the team
the deer and the elves
“we need to help Santa,
he’s not feeling himself”
“he worries dementia
may cause him to lose
the man he is now —
not to mention his shoes!”
“i want to give meaning
to the life he’s now leading
you’re his friends, ’til the end
for your help i am pleading.”
mrs. clause is no fool
she knows he will change
so she learns how to care
and avoid feeling deranged
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October 30, 2017: This morning I opened the curtains in my bedroom to find the hint of a rainbow in the sky on the other side of the lake. It was barely discernible.
For the next couple of hours the promise of the rainbow drew me to the west-facing windows in the house as it faded and reappeared in bits and pieces on the horizon. Finally, in the middle of my tea, toast and honey, it stretched seemingly solid, absolutely brilliant, and truly magnificent across the high morning mist from the rolling southwest hills to the river valley below my neighbours’ house. It seemed close enough, and solid enough, to touch.
I took a picture of the end where I thought the pot of gold might be — on the riverside path where I walk and cycle. By the time I thought to capture the full span of the stunning arc on video, it had all but melted into the morning cloud. I was reminded of how everything can be gone in the matter of a few moments:
This afternoon I remembered it is was six years ago today that I walked back into Mom’s big brick house on the hill (to the delight of some, and the dismay of others), having gone back to Dubai only a month and a half earlier after my usual summer visit with no intention of returning to Canada until my regular Christmas holiday.
I also remembered that Mom and I had spotted a rainbow across the road in the summer of 2011, and I revisited that memory out of curiosity:
Mom and I sang Somewhere Over the Rainbow so many time together in the ensuing years that I couldn’t help but wonder if the rainbow this morning had anything to do with the anniversary of my return.
I was left thinking that perhaps what they say about rainbows is true.
Like every human being (whether they live with dementia or not), Mom deserved to be treated with dignity and respect and to be provided ongoing opportunities to engage life in whatever way she could until the day she died. She loved to be active, involved, singing, dancing, and interacting with others. Her lively spirit and sense of humour are captured in the videos below, taken on the morning of November 16, 2012, the day she went to the nursing home.
We need to change the way we care for the elderly, particularly people who live with dementia, and particularly those in LTCFs. Most deserve much much better than what they’re getting. They should be provided the kind of love and support Caroline and I gave Mom when we lived with her in her own home.
Everyone should be pampered:
Everyone should be helped to let the sun shine in:
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.
“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.
My Alzheimer's Story 