Tag: labels

Activities, Advocacy, Inspiration, Toward better care, Videos

how many more steps could you take if you couldn’t take any more?

My Alzheimer's Story

This post is dedicated to the late Dr. Richard Taylor, advocate Kate Swaffer, and care warrior Leah Bisiani.

~~~~~~~~~~~~~~~

“I think I could take a few steps,” Mom said, “even if there’s not too many.”

It was her birthday. September 27, 2015. She’d been “behind bars” for almost three years, during which she had been inappropriately medicated, and forced to remain seated for “her own safety.” She spent most of the daylight hours chemically restrained (with antipsychotics), and physically restrained (in a recliner or a wheelchair), despite the fact sitting still was completely contrary to her nature. She could hardly stand anymore — her gait had become unmanageably unsteady due to the meds, and from sitting most of the time.

Exercise is essential for well being. Everyone knows that. Everyone. So, even though the distances became ever shorter, I helped her to walk each day. Or at least to try to walk.  When I missed a day or two for whatever reason (which was rare), it was always more challenging at the next visit. Her legs would be shakier, she wouldn’t be as strong.

But she never gave up. Neither will I.

This video is part of a series extracted from a care conversation with my writer friend Lorrie B. “I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care, and you’re the perfect one to help me do it,” I told Lorrie on Mom’s birthday in 2017.At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!). The other posts in the series are here.

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Advocacy, Antipsychotic drugs, Our stories

“rabid-dog” granddaughter takes on “combative” physician

My Alzheimer's Story

When I posted a link to 20 caregivers answer the antipsychotic question on a FB caregiver forum and asked caregivers what they thought, I became the subject of a vicious attack from a handful of forum members. “Fuck her and her judgmental ass,” one person wrote.

I was saddened but not surprised by the response. People who feel threatened, overwhelmed and/or afraid often react aggressively. Ironically, that’s one of the main reasons people living with dementia get labeled and sedated. Some family caregivers have no choice but to give their loved ones antipsychotics, and many others believe the misinformation told to them by various sources. I know. I’ve been there.

And, truth be told, when given in the lowest possible doses, for the shortest possible time, these medications may provide temporary relief in untenable situations for some people, without too many adverse side effects. But that’s not what happened with my mom, and it’s not what happens with tens of thousands of others, particularly in long-term care facilities where the inappropriate use of antipsychotics remains a huge problem despite efforts to stop it.

For example, Jessica S. shared her story in a comment on the same blog post:

I agree whole heartedly. My grandmother was diagnosed with Alzheimer’s early on. We put her in assisted living where she could thrive, as we wanted her to have people to watch over her and still have her own space. Was only a month when she fell & broke her arm. They didn’t call us, acted like they had no obligation to & so we took her out & brought her home until we could find another place that would be good for her. (Because of family stealing from my grandmother we had been thru court & have legal guardianship over grandma.

The new place is where the drug war started. I had a fit when I arrived to visit & my grandma was a disaster. She mentioned to the Dr she was having anxiety. Instead of prescribing her a low dose benzos on an as-needed basis they started her on Zoloft, Seroquel & other drugs. It was like my grandmother had end stage Alzheimer’s. She had no idea what was going on & didn’t know much of anything happening to her. It was like she was lost to us. I asked them to take her off all the meds.

Some of them she had to be weaned off of & the Dr was combative telling me that her Alzheimer’s had progressed & this was what happens. I was furious at her. I still battled & demanded they take her off of EVERYTHING. I knew about weaning her off so the next few times I visited they had her on just a couple meds & claimed they were still weaning her off. More time passed & I was there again during numerous med moments & I was surprised to find they were STILL giving her the Zoloft, the Seroquel & her aspirin. That sure explained why she was only “sort of” better.

After numerous discussions I finally went at the Dr, this time snarling & angry like a rabid dog so she would have no doubt about how serious I was & demanded she get my grandmother off of all of it except her aspirin. I was MAD. Finally that ended & grandma got back to her normal self. We ended up moving her again because I felt they didn’t really care about my grandmother & that was probably where her anxiety was coming from.

The “Side Effects” of all 8 meds they had her on was dementia, delusions, memory loss confusion & many other words describing those symptoms.  Why would a Dr prescribe that for a patient who already had those problems? To top it off, the Dr was more interested arguing the point of what a “side effect” was versus a “secondary effect” & some other crap, like changing the name would fix the problem. She treated me like a moron.

Little did she know I was also in the medical field & worked for a Dr who treated me like a partner, he taught me way beyond the scope of my job, not because he expected me to practice medicine with him but because he wanted me to be knowledgeable. I went to pharmaceutical meetings with him & learned a whole lot about medication, I also have a natural curiosity that keeps me reading about all things medical. My grandmother’s Dr didn’t know the scope of what she was dealing with & wanted us to obey her & drug my grandmother up so she wouldn’t be a “problem”.

At that point I was just angry that it was even legal to prescribe one of these medications  to an Alzheimer’s patient but prescribing 8 of them at once? I think my grandma would have died had we not been paying close attention to her. Now she is in a small assisted living community, only 16 people can live there & it is so new only half of it is full. She was the first to move in. She doesn’t have anxiety anymore & takes only her aspirin. Her Alzheimer’s has only slightly progressed & she is happy there. Paying close attention is key & questioning the Dr is critical when something isn’t right. Those medications are horrid & make the problems worse.

I laughed out loud where Jessica says “& the Dr was combative.” You rock Jessica, I thought. A woman after my own heart.

Why don’t we throw all these destructive labels right back in the faces of the people who insist on applying them to people who live with dementia, and likewise call them “resistant, combative and aggressive” when they  don’t respond in the way we want?

You go Jessica.

https://myalzheimersstory.com/2015/04/19/20-questions-that-help-explain-why-people-with-dementia-get-agitated-and-physically-aggressive/

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Advocacy, Toward better care, Videos

stand up for better care

My Alzheimer's Story

During the last two years of her life, after she was made to sit in a wheelchair (despite the fact that she was still able to walk), I didn’t know if my mom had been given the opportunity to stand up and walk on the days I wasn’t able to go to “ElderJail” to help her.

I visited virtually every day to ensure she got some exercise. But on rare occasions, I had to miss a day or two. When that happened, it was harder for her to get to her feet when I returned because (I guessed) no one had helped her to do so when I wasn’t there.

Mom was still able to walk, but she was confined to a wheelchair for “safety” (read: convenience)

It broke my heart to find Mom frustrated, pulling herself along using either a railing (where the hall was wide enough for railings), or her hands (where it was narrow), to get from one end of the building to the other – a distance of about 125 feet, after which she would come to a dead end, turn around and pull herself back again.

No wonder she got agitated. No wonder she wanted to stand up and walk. No wonder she was sometimes in a bad mood. I would have been too!

Imagine what it might feel like. How long could you sit in one place with nothing to do without getting “fidgety?” I asked people that very question in a Short Survey on Behaviour. Guess what? More than 80% say they would become restless in less than 40 minutes.

Yet many LTCFs (including the one my mom was in) expect people to sit quietly with nothing to do for hours on end, and when they don’t, they get labeled “agitated” or “anxious” and in need of being sedated.

Q: How long could you sit in a chair with nothing to do before you would feel restless, want to get up or start to fidget?

Despite everything they did in #DementiaJail to discourage my mom from standing up and walking, it didn’t stop her from believing in herself. When I went to see her on September 27, 2015, her 87th birthday (listen below), she was in good spirits, and ready to try standing up “for God’s sake!”

Her courage continues to inspire me to#StandUpForBetterCare. Because what we have now just isn’t good enough.

This video is part of a series extracted from a care conversation with my writer friend Lorrie B. “I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care, and you’re the perfect one to help me do it,” I told Lorrie on Mom’s birthday in 2017.At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!). The other posts in the series are here:

https://myalzheimersstory.com/2017/10/09/how-my-moms-affection-got-mislabelled-aggression/

https://myalzheimersstory.com/2017/10/02/loud-sounds-and-dementia-mostly-dont-mix/

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Challenges & Solutions, Toward better care, Videos

how my mom’s affection got mislabelled “aggression”

My Alzheimer's Story

My mom had an unflaggingly positive attitude, as you will hear in the video at the end of this post. It features an audio clip I recorded on Mom’s 87th birthday in 2015; the last one we would have together. When I suggested to Mom that she needed a new sweater because the one she had on was moth eaten, she responded “It’s getting better.”

Everything was always “getting better” as far as Mom was concerned.

She was also outgoing, friendly, interested, engaging, and invariably the life of the party. She adored people, and was highly socially adept. So how did she come to be labelled “violent” and “aggressive” after she moved into a long-term care facility? There was a cluster of reasons, none of which were here fault, nor the fault of dementia. Ironically, one of the reasons was love.

Mom had a habit of giving people what she called “love taps,” light, rapid-fire pats on the hand, arm, cheek, bottom, or whatever recipient body part happened to be in close enough for her to reach. She had done this, as a sign of affection, for as long as I can remember. As her Alzheimer evolved, and her ability to verbally articulate her emotions declined, “love taps” and clapping often replaced words. She used them to express delight, happiness, frustration, and displeasure.

Unfortunately, her love taps and clapping were sometimes not well received, particularly (and understandably), by other residents who lived with dementia, and who didn’t “get” what these “slaps” were about.

But the staff should have known better. Sadly, instead of looking at the meaning of the behaviour, they labeled it “violent” and “aggressive,” and, as a result, Mom was medicated with dangerous and debilitating antipsychotic drugs.

I think that’s abuse. What do you think?

This video is part of a series extracted from a care conversation with my writer friend Lorrie B. “I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care, and you’re the perfect one to help me do it,” I told Lorrie on Mom’s birthday in 2017.At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!). The other posts in the series are here.

20 questions that help explain why people with dementia get agitated and physically aggressive

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Advocacy, Toward better care

loud sounds and dementia mostly don’t mix

My Alzheimer's Story

“I would not want my mother sitting in a room with loud music and TVs blaring,” my writer friend Lorrie B. said in a zoom conversation on what would have been my mother’s 89th birthday.

I didn’t want that either. But that’s how I found my mom almost every afternoon for the last eighteen months of her life. Most often, she was oblivious to the noise because she had been sedated into a catatonic state.

I had become a thorn in everyone’s side by advocating for better care and less medication, and my visiting “privileges” were meant to be confined to between one and three in the afternoon when Mom was usually “asleep.” But I stretched the rules and arrived more towards 2 p.m. so I had a better chance of having some “awake time” between 3 p.m. and 4 p.m. On her 87th birthday, I made an audio recording of the visit for posterity.

A little over a year after Mom died, I invited Lorrie to listen to the recording with me, and to tell me her thoughts with a view to sharing them and our conversation with as many people as possible.

“I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care,'” I told her. “And you’re the perfect one to help me do it.”

At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!).

I plan on releasing more of our conversation in the coming days and weeks, (or maybe months at my snail’s pace), but for now, let’s start where Lorrie and I started – at the beginning of the visit.

Part of this clip is also in my birthday post honouring my mom here, during which I sang Happy Birthday to her. I invite you to read about the rest of our magical last birthday afternoon together here and here.

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Death & Dying, Life & Living, Love

happy last birthday dear mummy

My Alzheimer's Story

September 27, 2017: I never called my mother “mummy.” It’s what my mother called her mother, my grandmother. Maybe that’s why Mom sang “happy birthday Mummy,” when she chimed in two years ago on September 27, 2015, as you will hear below if you care to listen.

The year Mom turned 80 (2008), I sang happy birthday to her every day for two months because I wouldn’t be there on the day itself. Counting those 60 times, I probably sang her happy birthday five score and ten times at least. Every time off key and out of tune I’ll wager (I inherited Mom’s feisty spirit, but not her beautiful singing voice).

As a teenager, I called Mom “Ma,” which she hated. In my twenties I switched to Mom, and later, as the Alzheimer’s evolved, I sometimes called her Patty, which she spelled with a “y,” and which I spelled with an “i,” and preceded by “Pinkie,” as in Pinkie Patti.

Mom frequently responded more readily to Patty, the short form of her given name Mary Patricia, when “Mom,” didn’t seem to work. Maybe because she was Patty for 28 years longer than she was a mother.

Mom’s beloved brother, and her late sister Lee called Mom “Poose” (it rhymes with moose) or “Poosie.” Her late sister Jean called her Patsy, and my grandmother mostly called her Pat. When they were still married, my dad called her “Wid,” or “Widdy.” It’s was a strange term of endearment that I don’t know the origin of, and now never will as the only two who would know are gone. Mom called me Punkie, or Punk for short–a nickname for my nickname as it were.

It’s funny how we acquire different names and labels during our lifetimes. Some we assign ourselves, others are bestowed or cast upon us by family, friends or enemies. Some characterizations may be accurate, many often are not. One thing is certain, people who live with dementia, or who lived with it as Mom did, suffer more than their fair share of inappropriate and unwarranted labels, the vast majority of which are pejorative and harmful.

When I went to visit Mom on September 27, 2015, her last birthday in this place, I roused her from a light sleep with a gentle “Patty,” and reminded her it was her birthday. I sang her happy birthday for what I didn’t know would be the last time. I wrote about it here, and you can listen to my singing (if you dare!), as well as hers, by clicking on the audio bar:

I invite you to read about the rest of our magical last birthday afternoon together here and here.

Mary Patricia (Patty) Macaulay: Obituary

dead mom talking full of grief, wisdom and tenderness

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