Tag: Alzheimer’s disease

Care Partnering, Death & Dying, Life & Living, Love

7-part palliative care plan works (for people AND cats)

My Alzheimer's Story

About a month after Mom died in August 2016, her little kitty cat Pia Roma, who had lived with me since late February 2013, began to behave strangely. Coquetishly cute Pia, with her big yellow eyes, had always been a little odd, but this was different. She wasn’t herself at all. There were continence issues, a lot of meowing and more vomiting than usual.

“She has chronic kidney disease,” the vet told me after some blood tests and an overnight stay at the clinic. “And probably a bit of feline dementia too.”

The vet gave me medication for the CKD, and put Pia on a special diet. Pia continued to enjoy an active life for an older cat, despite her dementia. When I took her back for a check-up in 2017, Pia’s kidneys had actually improved. In the four years we’d been together, we’d grown really close, and I was delighted she continued to be so well. I was equally devastated, however, with the results of this year’s check-up, which took place last week. I wrote about it on my personal FB page:

“I took Pia to the vet yesterday afternoon. Unfortunately, the news isn’t good. The vet was impressed with the great shape she’s in for a cat her age, which I think is 16. The vet said her heart is in fabulous condition; she was surprised and impressed when I told her that Pia still runs around, plays, and jumps up and down from my desk to the floor and onto my very high bed.

The blood tests, however, told a different story. The results showed that, while her thyroid is fine, her kidney disease has progressed from stage I, which is was two years ago, to stage III, which it is now. The vet reckons she only has about six months more in this world.

The only thing that can be done for her now is palliative care to keep her comfortable. Of course I feel desperately sad, and I can’t stop crying, but what to do? This is life. And death.”

As with any terminal illness (e.g. Alzheimer’s disease, kidney disease, etc.), the patient does not suddenly die the minute she or he is diagnosed. People (and animals!) can continued to live relatively well until they die. I believe our job as care partners is to support those we love in living as they go through the process of dying. If I’m not mistaken, that’s what palliative care should be about. Hard as hell in the midst of our own grief, no doubt about that. But I know it’s possible.

So I have a palliative care plan for Pia. It’s essentially the same as what I tried to do for Mom, even though my hands were tied in many ways. Here’s the plan:

1) watch and listen carefully to try to determine what her needs are and do what I can to meet them

2) focus on what she can do each day

3) make her life as joyful as possible

4) maximize comfort

5) minimize pain

6) let her be the driver

7) respect the process and hold space for both of us

I know all these things worked a treat when I was with Mom, and I believe they’ll help Pia as well. Maybe they’ll be a blessing for those you love too.

https://myalzheimersstory.com/2018/02/25/3-wise-thoughts-on-being-with-someone-you-love-as-they-die-which-also-apply-to-being-with-someone-with-dementia-as-they-live/

https://myalzheimersstory.com/2018/04/27/understanding-the-suffering-associated-with-dying/

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Advocacy, Antipsychotic drugs, Toward better care

alzheimer disease didn’t do this. drugs and dementia jail did

My Alzheimer's Story

I’ve blogged a lot about the negative impacts of the inappropriate use of quetiapine (Seroquel) and risperidone (Risperdal) on people living with dementia, specifically on my mom.  One post, for example, shows the immediate effects of such drugs on my mother, another shows the difference from one day to the next when she was drugged and when she was not. I’ve also blogged about the side effects of quetiapine (Seroquel), of risperidone (Risperdal), and of haloperidol (Haldol).

I shared videos about the tardive dyskinesia Mom suffered as a result of the long-term inappropriate prescription of the antipsychotics she received.  I’ve talked about how the Government of Quebec finally acknowledged what I knew to be the truth about antipsychotic drugs seemingly long before they did, and how the action the government took in 2017 was too late for my mom, but hopefully not too late for others. I expanded on that with another video showing the effects these drugs had on my Mom.

Now I offer this:

I share this video because it demonstrates in a concrete, compact, and comparative way some of the physical and psychological effects the inappropriate prescription of antipsychotics had on my mother over a period of three years. This isn’t the end of our story. There’s much more proof to come.

I’m compelled to share our experience so the people you love, and you don’t suffer as Mom and I did. I also want to make it known to care providers, governments and our society overall that it is our collective obligation to provide people who live with dementia and older adults the care they deserve. It’s a human rights issue.

I hope people of the future look back with incredulity at where we are today and say “We can’t believe they did things that way.”

#wecancarebetter

https://myalzheimersstory.com/2017/06/10/drugs-not-dementia-robbed-me-of-my-mom-and-her-of-her-mind/

https://myalzheimersstory.com/2019/06/07/just-like-one-flew-over-the-cuckoos-nest/

https://myalzheimersstory.com/2017/12/03/four-years-later-is-too-late-for-my-mom-but-its-not-for-others/

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Death & Dying, Information

flying to the moon is relatively safe

My Alzheimer's Story

the-game-of-life-and-how-it-ends

We all die of something, and many more of us will die from Alzheimer’s disease and its complications as the boomer bubble ages. But what are the chances of dying from drowning or choking or flying to the moon? This infographic rolls the dice and puts things in perspective:

Family, Life & Living, Memories

all souls and the grandfather i never knew

My Alzheimer's Story
420909 Grandpa and Gran
My grandfather Edward Eustace and my grandmother Mary Margaret Kell Eustace circa 1942

Flashback November 5, 2015: To mark all saints and all souls days 2015, I went to a remembrance celebration at the Unitarian Universalist church in the village. I told Mom about it as I did her nails the next day.

“I went to a nice church service yesterday Mom,” I began.

“You did?” It was more of a confirmation than a question. “That was nice eh?”

“Yeah,” I said. “It was all about remembering people who had passed on. People who had died. It was kind of like a funeral, except for a whole lot of people, not just one.”

“Oh geez,” she said. Death can be a little disconcerting. Talk of funerals may not be so cheery.

“Yeah, but it was nice.”

“Was it somebody th th th th th th th th th th…that I knew?” she said, and then, before I had time to answer, her intuitive clairvoyance kicked in: “No I didn’t know them. I don’t think I knew them.”

“You’re right, Mom,” I said. “I didn’t know any of them. None of them. But that didn’t matter. People talked about the people who were important to them. They talked about fathers, husbands, mothers, grandmothers.” I held her right hand in mine, and applied bright pink polish to her nails as I described what had gone on. “Some talked about strangers. Some talked about children. One lady told the story of a young friend who had been killed with her husband and two children in a car accident. They were so young she said. Everyone who spoke told the stories of different people they loved and appreciated.”

“Oh dear.” Mom sounded a little worried

“I was going to get up and talk about Gran.” At the mention of Gran, she quickly grew more calm.

“Oh that was nice eh?” She said.

“But in the end I didn’t. I’m not sure why I didn’t, but I didn’t,” I mused. “I thought about her though.” I looked up from Mom’s hands and into her eyes as I spoke.

“Poor gran, usually they had them all… They had them… All… Da da da da da da da da da da da da da da da da da…” The cook came in with the tea trolley.

“I’ll fix our tea in a minute, Stacy,” I said to the cook.

“You’re in mid-paint,” she chuckled.

“I am.” I smiled back. I had brought a couple of boxes of apples the day before; Stacy had used them to make apple crisp and applesauce. She’d saved a little of the sauce for me in Mason jar. Mom and I used to make jam, basil beans and dill pickles together in late summer; we preserved them in Mason jars.

“The only thing I put in with the apples is a bit of water, some sugar, and some cinnamon–so the applesauce is pretty clean,” she said.

“Thanks,” I said.

I turned back to the manicure and my storytelling as Stacy left the drawing room. “I remember the way Gran always used to say ‘Oh hi Sue!’ whenever I called, as if she were surprised to hear my voice. We used to have these long conversations about life and death and all of that and I remember her telling me that her husband–your father–never saw her naked.”

“Oh dear. Oh dear. That was awful. Poor soul.” I laughed, but I could see Mom was little uncomfortable, maybe at the thought of her mother being naked.

“I wondered how she ever got pregnant,” I said with a grin and tease in my voice. Mom looked at me. She must have died a thousand deaths when she told me about “the birds and the bees.”

“Oh I don’t know, she had la la la la la la la la la la la la la la la la la…” Then as clear, sharp and bright as the North Star she said, “She loved my Dad! She just loved my Dad.”

“Yeah she did,” I agreed. Grandpa had died when I was less than two. But I’d heard so many stories for such a long time that I knew she spoke the truth even though I had no recollection of seeing my grandparents together.

“So so so so so so he was he was a ka ka ka — he was her darling.”

“Yeah he was.” Something cracked inside me.

“So he wanted that one very much so,” she said.

“Yeah, he did,” I whispered.

“He liked her. Oh yeah. Very much so. But then he went to ga ga ga ga he got very close to her.”

“Yes. Yes he did. That was nice eh Mom?”

“Yeah. That was nice.” I fell quiet for a moment or two. My tears dropped between her fingers as I tried to paint her nails in a blur.

“So he always looked at her best. Best of some,” Mom said.

“Yup,” I squeaked out. “It was good that they found each other eh Mom?”

“Yeah.”

“I feel a bit sad Mom.”

“For Gran you mean?”

“No, Gran’s okay now.”

“Gran’s okay now is right.”

“She’s with your father.”

“Yeah she’s with Daddy now. He would la la la la la la look look look look well with her.” He would look after her is what she meant.

“Yes he would Mom.”

I choked a little, and then blew gently on her fingertips to help them dry.

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

https://myalzheimersstory.com/2015/10/31/my-mom-loved-her-mom/

https://myalzheimersstory.com/2015/08/30/we-all-go-through-rough-patches-heres-one-thing-that-helps-us-get-to-the-other-side/

https://myalzheimersstory.com/2014/08/14/if-you-think-they-dont-know-think-again/

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Death & Dying, Family, Life & Living, Love

the kind of daughter i am is the kind i will never regret being

My Alzheimer's Story
Gran, great great gran and Alec cropped
This post is dedicated to my great great grandmother (middle), my grandmother (left; October 31, 1902 – April 19, 1990) and my mother (September 27, 1928, – August 17, 2016). My grandmother’s younger brother Alec is also pictured here. The photograph was taken on the family farm in Nova Scotia, Canada, circa 1912.

I was born of an amazing woman who was born of an amazing woman who was born of another. They were all mothers and daughters. I too am a daughter, and in a twist of fate I became the childless mother to the woman who bore me.

My grandmother left her home in Nova Scotia in her early twenties to study nursing in Montreal, Quebec. It’s an overnight train journey, even now. She met my grandfather, an electrician, in Montreal; they married and had four children. Over the years she went back to Nova Scotia occasionally; it was a long way to go. Her brother Alec stayed on the family farm.

L-R back: my aunt Jean, grandfather Ed, grandmother "Kell." Front: Eddy boy, my Mom Patti, aunt Lee.
L-R back: my aunt Jean, grandfather Ed, grandmother “Kell.” Front: Eddy boy, my Mom Patti, aunt Lee.

My mother was the second-oldest child (that’s her front and center in the pic at left). She was born and raised in Montreal with her two sisters and “Eddy boy” (bottom left) the baby of the family. At 23, my mother made the 13-hour flight to Vancouver to marry her fiancé Don. They had two children: me in 1956, my brother in 1958.

When I was six, my father was transferred “back east” and my parents returned to Quebec with my brother and me in tow. Just as my grandmother and mother had done, I left home in my early twenties. Like them I headed west: Gran abandoned the Maritimes for Montreal, Mom flew to Vancouver, I chose Calgary. I settled and married there.

My husband and I moved to the United Arab Emirates in 1993 and returned each summer for extended holidays with our respective families in New Brunswick and Quebec. After we separated in 2005, I travelled back and forth from the Middle East to live with Mom for about two months in the summer and one month in the winter until 2011 when I left Dubai to come back to live with and care for her full time. I was able and still am able to be with Mom so much because I am divorced, childless by choice, and semi-retired. I chose to do it because of Mom’s Alzheimer’s and the fact that she lived alone in a big house.

Susan & Patti walking summer 2009People have told me for years that I am a “good daughter.” I think they say it as a compliment, or perhaps to encourage me. “But what does it really mean?” I’ve asked myself time and again. Does giving up my life as I knew it to care for my mom make me a good daughter? If I hadn’t done so, would that have made me a “bad daughter?” Was I bad daughter for moving away from home in the first place? Were my grandmother and mother “bad” for doing the same ? Or were we all good daughters for being pioneers in our own ways?

I’ve thought about these and similar questions a lot, and I’ve come to some unequivocal conclusions. I feel good, not guilty, about my life choices, which were not enabled in any way by anyone but me. I feel good, not guilty, about my relationship with my mother and about all the things I did or did not do for her while she was alive. Now that she’s gone. I have no regrets.

I never felt I owed my mother some kind of debt of gratitude. I didn’t feel any need to “give back” to her while she was alive. If I owed her anything at all, the debt was repaid in full by me being the person I am. I loved her even though I often felt she did not love me in the way I wanted. During our Alzheimer’s journey, I saw her more clearly than I ever had, and I loved her unconditionally.

I came back to Canada to care for my mom because it was the right thing to do. She needed care, it wasn’t being provided in the way I thought it should be, so I returned. I advocated for what is best for her until her last breath because it was the right thing to do. It’s often harder to do the right thing than it is to make other choices. I strongly believe in living by my values and doing what I know to be right.

IMG_7221
Mom playing guitar June 2014

I wanted Mom to have as much joy and happiness as she could as she neared the end of her life. I helped her to live as I believed she would have wanted for as long as possible: engaged with the world and the people around her.

I held her hand as she went through the process of living with and dying from dementia of the Alzheimer’s type. Together we navigated uncharted territory. The time we spent together during the last chapter of her life was joyful; it was it was also challenging. It lasted about ten years, and then it was over in an hour.

I don’t believe being a good daughter–or son for that matter–depends on where one resides: a few miles down the road, or on the other side of the world, it makes no difference. It’s the nature of the relationship that counts. It has to do with heart, soul and connection. I believe it has to do with being a good person not a good child. It can take a multitude of shapes and mean many different things over the course of a lifetime and beyond. Mostly it has to do with love.

My goodness as a daughter was/is mine to create and celebrate. Any failings are mine to own. That’s the kind of daughter I was, I am, and I will always be.

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Care Partnering, Challenges & Solutions, Tips, tools & skills

never never argue is the “N” in BANGS

My Alzheimer's Story

Like many dementia care partners, I spent years arguing with my mother and exacerbating no-win situations before I became aware that debate only created more anger and angst. By arguing, I became the cause of her “bad behaviour.” It wasn’t the disease, it was me; it wasn’t her fault, it was mine. Had I put myself in her shoes, I would have saved us both a lot of aggravation.

BANGS is an acronym for five ways anyone can use to avert and defuse conflict with people who live with Alzheimer’s dementia and other kinds of dementias.

“B” is for breathe.

“A” is for assess, accept, and agree.

“N” is for never, never argue

“G” is for go with their flow, let go of your ego, get over it, get on with it, get down to it

“S” if for say you’re sorry

This post is about never, never arguing. Arguing with someone with dementia gets you nowhere. It just adds to everyone’s frustration and creates an environment where more conflict is likely to occur. Imagine this conversation at a family dinner:

“His hair was jet black when he was little,” the person with dementia (PWD) says about his grandson.

“No, it’s always been brown,” the boy’s mother counters.

“No it wasn’t. It was black,” the grandfather with dementia shoots back.

“I’m his mother, I should know,” the boy’s mother’s voice  rises an octave or two.

A heated row ensues over the colour of the boy’s hair, which has always definitely been brown, not black. But who cares? The argument could have been averted had the daughter simply agreed with her father about the colour of her son’s hair.

This tendency to argue is not confined to “natural” care partners. Many paid care workers in institutions such as long-term care facilities, nursing homes, and hospitals are unaware they create problems by the way they talk to and treat people with dementia. Imagine this scenario:

“That’s not yours honey,” the caregiver says as she tried to pull a small object from an old woman’s grasp.

“It is so. It’s mine!”

“No it’s not!”

“Yes, it is!”

“Give it to me. NOW.”

“NO.”

 The old woman with dementia slaps the caregiver on the arm as the caregiver yanks the object away.

If you think it sounds like kindergarten gone bad, you’re right!  That’s just what it’s like, and situations like these are why many people with dementia get branded “aggressive” and “violent,” and why far too many are given harmful and largely ineffective anti-psychotic drugs.

We have the power and the responsibility to change these responsive behaviours by changing how we behave ourselves.

The minute  care partners stop arguing with their loved ones and others they interact with who have dementia, things greatly improve. I know it from personal experience and there’s stacks of research to prove it.

Dementia communication is perhaps the only place where that old cliché about “never say never” never applies!

 

Don’t want to end up in a “shoot-out” with a PWD? Use BANGS. The full 50-minute webinar is here:

https://myalzheimersstory.com/2016/12/08/5-surefire-ways-to-stop-anger-and-aggression-in-people-who-live-with-alzheimers-disease-in-the-mid-and-later-stages/

See also: Teepa Snow demos 10 ways to calm a crisis with a person with dementia

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Life & Living, Love, Memories, Videos

we saw love. what do you see?

My Alzheimer's Story

IMG_6342 copy
September 2013: Mom and I won second prize in the What I See Project‘s worldwide video contest about seeing what you see in the mirror. I’m so grateful we chose to participate in the contest and to preserve the special connection we have. I encourage everyone to be in the moment and to document shared times like these.

Here’s the video, called (descriptively yet somewhat unimaginatively LOL) “I See You and Me:”

 

 

What do YOU see in the mirror? Maybe you will find out before I did that in the end we are one.

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