These gifts are inexpensive (they don’t cost dollars and cents, so everyone can afford them), and yet priceless (because of the fact they can’t be bought, and must be given from the heart). Even better, they can be gifted all year round!
Please consider giving one, several or all of these gifts this year (and always) to people who live with dementia in your family, your community and around the world.
Respect
You could treat people who live with dementia like the human beings they still are no matter what “stage” of the condition they are living with. You could treat them like adults, not children. You could respect their wishes, wants and desires. You could believe their lives still have value, and you could demonstrate that belief in the way you interact with them.
You could give them the most precious gift of all: the gift of time. Carve out a space in your busy life and go to visit someone living alone, or someone who rarely gets visitors even if they are living in community. Once you get there, sit and stay awhile. You don’t have to do anything – just being with someone is often enough.
Understanding
People who live with Alzheimer’s disease and other dementias are widely misunderstood, stigmatized and marginalized. If each and every one of us took the time to educate ourselves and to really understand what’s going one with people who live with dementia, and what causes them to behave the way they do, we would all be a lot better off. If you haven’t already begun learning, start educating yourself now.
Compassion
Imagine what it might be like to be experiencing brain changes in which your memory and your ability to understand the world are shifting in ways that make it hard for you to navigate reality. Imagine what it might be like to experience stigma and isolation, to have other people take control of your life. Imagine what it might be like to walk in their shoes, and then give the people you interact with who are living with dementia your compassion and understanding.
Advocacy
People who live with dementia are often treated like objects, like pieces of furniture, as if they are less than human. Many are unable to speak up for themselves. We need to be their voice. We need to ensure that they are treated with dignity, and that they get the care they have a right to. When you see people who live with dementia being neglected, abused or treated in ways they shouldn’t be, SAY SOMETHING! And then keep advocating until things change.
These are gifts that money can’t buy, but that we all have the capacity to give.
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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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Have you ever felt as looney as a tune? We did. All the time! Mom, Eric and I made a fine looney tune trio, especially when we were unplugged.
Here’s an excerpt from Mrs. Brown You’ve Got a Lovely Daughter (and mother!), which we also sang accompanied by piano. This particular post is to honour my birthday January 28, 1956, which this year I will be marking for the first time ever without my mom in this world. That’s something to think and feel about.
Oh yeah, and just for fun and because Mom would have loved it:
It’s an early new year’s morning. I sit on the sofa, sip tea and remember the pleasure of last night’s fire. Christmas isn’t long gone, and I love that I leave my decorations up until my birthday at the end of January. I want to stretch the joy of them being without swaddles and boxes for as long as possible.
The sun rises in the east and shines through the large window behind me; its rays travel across the red brick of the fireplace to strike a painted wooden angel that fell from the tree a few days ago, and which I hung on the damper crank because I didn’t know where else to put her. It looks like she feels at home there. I think of Mom, and the amazing grace of this moment as well as that of December 2014 when she and Eric and I celebrated spirit, connection and love. I hear her clap and sing, and watch her smile as if she were here with me.
This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The other vignettes in the series are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. Unlike the other vignettes, this one is told by me, Susan; it features my mom Patty, who died on August 17,2016. See the other vignettes from Annie’s eyes here.
it’s not a cornflake
It’s Christmas Day 2013. I’ve brought Mom to the safe haven of my home for a quiet day together. “Owwwww,” she says, and winces when she sits in her favourite chair. She squirms in an effort to get comfortable, her face a grimace of pain.
“What is it Mom?” I ask.
“It hurts,” she says. “It hurts.” Mom has complained of pain for about a week. “Something’s wrong with my insides,” she says. Or, “My tummy hurts.” When I ask her to show me where, she puts her hands between her legs.
“Mom says she has pain in her groin,” I relay to whomever the charge nurse is when I’m at the place I would came to call “ElderJail.”
I visit Mom for two or three hours each day, but I’m not the one in legal control of her affairs, and I’ve been told in no uncertain terms that I am NOT to ask questions or make observations about her care. But she is in such obvious discomfort, I am unable stay silent and watch her suffer without saying something.
“Oh?” whichever nurse is on duty invariably answers. “I’ll make a note of it.”
When I arrive at the facility on Christmas Eve, I find Mom at the table in the kitchenette that serves as a dining room for the “lockdown” residents. Unusually, the charge nurse, DeeDee, is feeding another resident, Camille, across the table from Mom. Feeding is a duty normally performed by the care workers (CNAs/PCWs). Probably short staffed. I sit down at my mother’s side. “How are you Mom?” It’s my standard greeting.
“Not so good, Punk,” she says.
“Do you have any pain Mom?” Also standard.
“Yes, right here,” she replies putting her hand in her lap. I look over at the nurse. “Did you hear that, DeeDee?” I ask to confirm what I had shared with her the day before, and with her colleagues in the days before that. Nurse DeeDee lifts a puree-filled spoon to Camille’s lips and says: “I’ll make a note of it in the book.” I sigh, and turn my attention back to Mom.
That was yesterday. Now, today, Christmas Day, at my place, Mom is still visibly in pain.
“Something’s wrong. It hurts,” Mom repeats. She squiggles around in the armchair, winces again, clutches the armrests and pushes, lifts her bottom up from the seat, sucks in her breath, holds it. I hadn’t been able to do anything about her complaints while we were at the facility, other than to talk to the walls, but this is my home, it’s just Mom and me, and I’m free to do as I wish.
“Do you want me to look Mom? Maybe I can see what’s the matter,” I offer while Celine Dion sings These Are the Special Times in the background.
“We need to do something,” she says. “Because I can’t go on like this.”
We shuffle into my bedroom where I’ve placed a low single bed at the foot of my much higher king so Mom doesn’t have to sleep in a chair when she’s tired during a visit. I fetch a pair of medical gloves, which I have on hand for changing her incontinence briefs, and put a pink towel on top of the white duvet on the bed. She takes her pants off; I help with the brief, and she lays down. She has barely opened her legs when I spot something thin, dark and undoubtedly foreign within the folds of her flesh. What the hell is that? I pinch whatever it is between my thumb and forefinger and gently extract it.
“Ouch!” Mom cries.
It looks like a cornflake. I squeeze it; it doesn’t break. Not a cornflake. It’s about an inch long and three-quarters of an inch wide, perfectly curved and smooth on one side, rough and knobbly on the other. I roll it around in my fingers: the hard cornflake-like thing has jagged, razor-sharp edges.
Tears well up in my eyes. Poor Mom. This whatever-it-is has been lacerating her vagina for days. A rush of anger dries the tears as quickly as the thought of her pain prompted them. I grab my iPhone from the top of the dresser, tap the camera icon, slide to video and press the red record button.
Postscript: I was never told what the cornflake might have been. Six weeks after the incident, the Director of Nursing testified in court that they hadn’t had it tested to see what it was.
“Asks or complains about her health, even though it is unjustified”is #17 on the NHBPS
December 25, 2015: I hadn’t expected any gifts from Mom on Christmas 2015, but she surprised me, as had so many times before on our Alzheimer dementia journey.
“Would you like tea Mom?” I asked as we rolled into to the facility’s drawing room.
“No, I I I I I I I don’t like the tea,” Mom replied. Mom loved tea. We had tea every day at three. Or just about.
“Okay, how about a chocolate?” I offered.
“Nah nah nah nah nah…” she tried to decline. Mom also loved anything sweet. Always had. I chose a truffle from the box I’d purchased a few days before at the village chocaleterie, and held it inside the range of Mom’s tunnel vision. It took a few seconds for Mom to zero in on the delight, a few more for her to get her hand in its vicinity, and another few for her to grab it between her thumb and forefinger. Once she had it in her grasp, she held it there suspended, not sure what to do with it.
“Try it Mom, I think you’ll like it,” I suggested. No movement. “Take a bite Mom,” I encouraged. “Taste it.” I smiled as she finally responded to the cues, lifted the little piece of heaven to her mouth, and bit into it.
“How is it Mom?” No answer. Mom chewed, and then swallowed while crossing and uncrossing her legs. Crossing and uncrossing. Crossing and uncrossing. I willed myself not to allow the crossing and uncrossing, crossing and uncrossing, and the hand fluttering to affect me. It was like Mom was a marionette who danced while sitting and playing an invisible piano at the whim of an unseen puppeteer.
It’s not her fault. It’s not her fault. Thank you for the patience I have learned these past five years. Thank you, thank you, thank you for the patience.
I’m not religious, as Mom had been, but I am most definitely grateful. And it was Christmas Day after all. I reminded myself to breathe. Breathe in. Slowly. Breathe out. Slowly. Breathe in. Slowly. Breathe out.
“I don’t know wh wh wh wh wh wh wh wh….” Mom stopped in mid “what” and closed her mouth. I noticed again how the shape of her jaw had morphed into that of an infant with the top lip more pronounced and the chin receding.
“You don’t know what Mom?”
“I don’t know wh wh wh wh wh wh wh wh.” Silence. We sat face-to-face: I on the edge of an armchair, she in the annoying and dubious safety of the wheelchair’s bells and whistles. Our knees touched. So did our hearts and souls.
I waited as Mom processed; she was agitated. I saw it in the set of her mouth, the line of her cheek, the look in her eyes. She had something important she wanted to say, but dementia barriers were blocking the way. She clapped her hands in frustration at the ends of unfinished sentences, percussing words she was unable to speak. I wished I could decipher Mom’s Morse-like code in the moment as I had on many previous occasions. It would make things so much easier. But it wasn’t to be; I was left to divining.
“You don’t know what Mom?” I repeated my question.
“I don’t know. I don’t know what I don’t know,” she replied, hands fluttering like mad. When everything was going nowhere, music always helped.
“How about we sing a song Mom?”
“Well, I don’t know.”
“How about Jingle Bells?” I suggested despite the heartbreaking lack of snow outside. I began to sing out of key.
“Jingle bells, jingle bells, jingle all the way. Oh what fun it is to ride–”
“In a one-horse open sleigh!” Mom chimed in.
Her once beautiful singing voice was raspy and breathless as she completed the verse, but it sounded like a Christmas choir of angels to me. A little Yuletide miracle. If one were prone to believing in such.
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Mom could spell “Christmas” even in the “later stage” of Alzheimer disease. She could spell and sing and experience joy and happiness as well as any of the rest of us. I know because Mom and I spent countless hours singing, chatting, spelling and just being together.
The video below is from the Christmas season 2015 (published one year later in December 2016, four months after Mom’s death). I didn’t know when I recorded that day and during the rest of the season that it would be our last Christmas together.
Whenever I watch and listen to the video and audio recordings I have, I am still amazed at how much my mom could still do, even within months of her death. And I’m still angry at the way she was neglected and abused (in a place that was meant to be a “nursing home”), by people who had presented themselves as “care professionals,” but who were anything but.
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“Punkie, something’s not right between my legs,” Mom said out of the blue a few days after Christmas in 2007. I was still home with her from Dubai for the holidays; I was due to return there shortly.
“What do you mean Mom?” I asked.
“There’s a lump,” she said. “Between my legs. Sometimes it hurts.”
“What do you want me to do Mom?”
“Can you take a look Punk? Maybe you can see what it is,” she said.
I felt a little uncomfortable. I’m not a nurse, or a midwife, I’d never been up close and personal with my mother’s private parts before, but she was clearly distressed and wanted me to help her. Then this thought: her most intimate space is my birthplace. Her belly was my first home on this earth. Suddenly it was okay.
We went upstairs to her bedroom. She took off her pants and lay down on the bed. A smooth and kind of pointy bump protruded from her vagina. My heart thumped in my chest, then skipped a couple of beats. A tumour? Whatever it was, I could see how it would be extremely uncomfortable.
“I think we should go to the hospital Mom,” I said, keeping my voice calm and natural, though I felt anything but. She put her pants back on, and we drove to the emergency room in town, about ten miles away. It turned out to be a prolapsed uterus, which, after subsequent visits to the gynecologist over a period of months, was tucked up and held in place with a rubber-doughnut-like device called a vaginal pessary.
~~~~~~~~~~~~~~~~~~~~~~~
Now it’s Christmas Day 2013. I’ve brought Mom to the safe haven of my home for a quiet day together. “Owwwww,” she winces when she sits in her favourite chair. She squirms in an effort to get comfortable, her face a grimace of pain.
“What is it Mom?” I ask.
“It hurts,” she says. “It hurts.” Mom has complained of pain for about a week. “Something’s wrong with my insides,” she says. Or, “My tummy hurts.” When I ask her to show me where, she puts her hands between her legs.
“Mom says she has pain in her groin,” I say to whomever the charge nurse is each day, even though I’ve been told in no uncertain terms that I am NOT to ask questions or make observations about Mom’s care. But she is in such obvious discomfort, I have to say something; I can’t stay silent while she suffers.
“Oh?” whichever nurse is on duty invariably answered. “She hasn’t mentioned anything. She seems fine.”
When I arrive at the facility on Christmas Eve, I find Mom at the table in the kitchenette that serves as a dining room for the “lockdown” residents. Unusually, the charge nurse, DeeDee, is feeding another resident, Camille, across the table from Mom. That task is normally reserved for the caregivers. Probably short staffed. I sit down at my mother’s side. “How are you Mom?” My standard greeting.
“Not so good, Punk,” she says.
“Do you have any pain Mom?” Also standard.
“Yes, right here,” she replies putting her hand in her lap. I look over at the nurse. “Did you hear that, DeeDee?” I ask to confirm what I had shared with her the day before, and others in the days before that.
Nurse DeeDee lifts a puree-filled spoon to Camille’s lips and says: “I’ll make a note of it in the book.” I sigh, and turn my attention back to Mom. Later, I’ll make my own handwritten note in my own notebook as my lawyer has suggested I do.
That was yesterday. Now, today, Christmas Day, Mom is still visibly in pain.
“Something’s wrong. It hurts,” Mom repeats. She squiggles around in the armchair, winces again, clutches the armrests and pushes, lifts her bottom up from the seat, sucks in her breath, holds it. She isn’t fine at all. I hadn’t been able to do anything about her complaints while we were at the facility, other than to talk to the walls, but this is my home, it’s just Mom and me, and I’m free to do as I wish.
“Do you want me too look Mom? Maybe I can see what’s the matter.” I offer while Celine Dion sings These Are the Special Times in the background.
“We need to do something,” she says. “Because I can’t go on like this.”
We shuffle into my bedroom where I’ve placed a low single bed at the foot of my much higher king so Mom doesn’t have to sleep in a chair when she’s tired during a visit. I fetch a pair of medical gloves, which I have on hand for changing her incontinence briefs, and put a pink towel on top of the white duvet on the bed. She takes her pants off; I help her with the brief, and she lays down, just as she did six years before. She has barely opened her legs when I spot something thin, dark and undoubtedly foreign within the folds of her flesh. What the hell is that? I pinch whatever it is between my thumb and forefinger and gently extract it.
“Ouch!” Mom cries.
It looks like a cornflake. I squeeze it; it doesn’t break. Not a cornflake. It’s about an inch long and three-quarters of an inch wide, perfectly curved and smooth on one side, rough and knobbly on the other. I roll it around in my fingers: the hard cornflake-like thing has jagged, razor-sharp edges. Tears well in my eyes. Poor Mom. This whatever-it-is has been lacerating her vagina for days. A rush of anger dries the tears as quickly as the thought of her pain prompted them. I grab my iPhone from the top of the dresser, tap the camera icon, slide to video and press the red record button.
The remainder of the afternoon is magic. Free from the pain that has tormented her for days, Mom is peaceful, happy and relaxed. We sit and admire the fragile glass and crystal ornaments sparkling on my tree. We sing along with Celine to our favourite carols. We talk, laugh, and enjoy the pleasure of each other’s company. Together, we cook a fine dinner of sautéed shrimp, steamed broccoli with butter, and apple rice; dessert is dark chocolates and spiced tea. Not a traditional Christmas meal to be sure–no turkey, no turnips, no brussel sprouts–but it’s delicate, delightful and delicious.
There are other gifts, strange and unexpected perhaps, but gifts nevertheless. For one, I am grateful to have been able to ease Mom’s pain as she had mine on countless occasions throughout my life. Most important, it is a special time, a precious time, a tender time.
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Mom was vibrant, energized, spunky and alive on November 16, 2012, the day she was placed in a nursing home. I spent the next three weeks trying to get her settled into a new way of living. It was clear to me from the outset that the facility in which she had been placed was ill-equipped to properly care for people who live with dementia. But I wasn’t in control of her care, there was little I could do. I spent as much time as I could with her for the better part of three weeks. On December 1, we attended the facility’s Christmas dinner. I filmed her singing carols; she was beautiful, healthy and engaged:
On December 6, I went to Alberta to be with friends for a much-needed break from full-time care partnering. I was worried about Mom, but I knew Caroline would see her regularly, and I would return mid-January to be with them both again. How much could go wrong in such a short time? A lot as it turned out.
Within two weeks of my departure, they started giving Mom quetiapine (Seroquel) in the morning; previously, she had only taken it at night in small doses to help her sleep. When she had begun taking it the year before, I didn’t fully comprehend the dangers of antipsychotic drugs, nor did I understand how prevalent they are in Canada, particularly in Quebec. But I quickly learned the effect Seroquel had on Mom – it knocked her out cold. The effects of the increased dose and frequency were cleare when I spoke to her on the phone from Alberta, her words were slurred, her voice monotone, she sounded depressed, she couldn’t sing jingle bells. I asked them to stop giving i her the drug to her. Then I begged them to stop giving it to her. My pleas were ignored.
She wasn’t being properly toileted and/or changed (I would see the evidence of that when I got back) and she soon came down with a urinary tract infection (UTI); treatment for which began on Christmas Day. Three days later, I wrote a worried email to the director of nursing (DON):
“Please tell me how Patti is. When I talk to the nurses, they say she is fine and getting better, but when I speak with her on the phone she sounds terrible: shaky, extremely confused, voice slurred, slow rate of speech. She is not at all the same person I left in good physical health three weeks ago. I’m really worried…. 😦 Is she still being given the Seroquel in the morning?”
I got no reply to the Seroquel question. Our angel Caroline broke her wrist on New Year’s Eve; she would never see Mom again. Sometime during that week, Mom’s left leg began to swell. She was sent to the hospital by ambulance on January 10, spent a week there and was returned to the care facility on January 17. I got back the next day and was shocked by her demeanour. The woman I had left six weeks prior seemed to have vanished.
On January 19, I found her lying in bed half dressed in her “street clothes” with her nightgown over her trousers and under her sweater. She had obviously tried to get ready for bed by herself and got confused. She was dopey from medication, could hardly keep her eyes open:
On January 21, I went to see Mom first thing in the morning; she was listless and depressed; she didn’t even want to sing. This would have been unthinkable just two months earlier:
I immediately wrote to the person in control of her care with a cc to the DON a the facility:
“During the first few weeks of Mom’s stay at the facility, she seemed to be adjusting fairly well despite periods of high anxiety, and wanting to “go home.” Six weeks ago Mom and I played catch in the hall outside her room. She was able to easily go up and down the stairs, her eyes were clear and bright. She was in good physical shape. She has declined more in the last six weeks than she has in the last two years. Her drug regime was changed; she became lethargic and listless.She’s had a UTI and was hospitalised for thrombosis. She shuffles down the hall holding on to the railing instead of walking confidently as she used to just a month ago. Much of her spark and energy are gone. The stuffing has really been knocked out of her. I believe this could have been prevented to a large degree.”
I was so distraught at what was happening to Mom that, over the 2012/13 festive season, I had set legal wheels in motion to try to gain control of her care. Those wheels of injustice would eventually grind to a halt in March 2014. Mom died on August 17, 2016; and I continue to advocate so others might not have to suffer what she did.
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My Alzheimer's Story 