You said it! – Page 2 – My Alzheimer's Story

Advocacy, Real life, Toward better care, You said it!

when people castigate, educate!

May 16, 2018May 16, 2018 My Alzheimer's Story

After reading “an open letter to people who think they know better,” care partner Pauline Knowles made this comment on the MAS Facebook page:

“To anyone in this situation: as hard as it is to accept, please remember that it’s ignorance and fear of seeing the reality of the situation that causes people to react like this. They have no understanding of how to react other than to question or criticize. I feel this is caused by fear of the unknown or in some cases lacking the ability to empathize. People need to be educated.

I try to remember how I saw dementia / Alzheimer’s before mum’s diagnosis. I really had no clue. I’ve had to learn as the disease has progressed. I think all of us should write our own story about this journey and what it’s teaching us. We can make this world a better place for all who are or have been touched by this disease. Sharing our experiences will educate the next generations. People might then talk more openly.

My biggest regret was correcting information and arguing with mum, trying to get her to see my reality when all along I should have just lived with hers. This negative proved to be a great positive. I was able to explain to my siblings and mum’s friends not to correct or argue but just accept. Mum is relaxed and not anxious anymore and the people who visit her are more relaxed too. I’ve made it my job to educate and share. The main thing is to whatever is a comfort to mum. Criticism is out of bounds. Only genuine concerns. Thank you so much for sharing this letter.“

Thank you Pauline!

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“You said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network.

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Advocacy, Real life, Toward better care, You said it!

who’s in charge, where are they and do they care?

April 20, 2018 My Alzheimer's Story

Laurie Brookbank is a long-time follower, and frequent commenter on the MAS Facebook page. Like Mom did, Laurie’s mother also resides in a nursing home. And just as I had no control over Mom’s care (despite the fact that I was the only one around her who truly wanted to act in her best interests and who understood what those best interests were), Laurie also does not have the legal right to ask questions about her mother’s care, or to make decisions on her behalf.

After reading “20 paths to dementia care homes away from home,” Laurie offered this observation:

“…and #6 is a big one for me along with #8, #9,#14, #17 (invest in staff who have a passion for eldercare and train them) and #20 (is related to #6 – get rid of the old, stuffy, top-down structure and work together to foster creativity and innovation on behalf of the residents in care).

Mom lives in a facility that is one year old. There are few regular activities as activities are funded through donations, which there don’t seem to be enough of. I’ve noticed a revolving door of casual staff in the past six months. I visit at different times during the day — mostly in the morning, late afternoon or early evening. Not once in almost a year have I ever laid eyes on anybody in administration. I’ve never seen the Director of Care or the Executive Director (both of whom have impressive staff profiles on the facility website), actually talking to the residents. For me, that begs the question: Are they solely paper pushers or do they have compassion, care and concern for the residents? If it’s the latter why aren’t they ever visible to the residents’ family members when they go to visit at a variety of different times of the day? In my opinion, leaders need to be visible and interact with the residents from time to time…”

When members of leadership and administration teams take time to go out “on the floor,” it gives them an opportunity to observe how care is delivered. I suspect many would be surprised by what they would either see, or not, as the case may be.

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Advocacy, Real life, Toward better care, You said it!

it’s time to humanize dementia care

March 22, 2018March 22, 2018 My Alzheimer's Story

Laura Walker is co-founder and director of Memory Matters South West CIC & Moments Cafe an Community Interest Company. She’s a mental health nurse, and life coach with a passion for person-centred everything, all of which is evident in her comment below.

After reading “alzheimer’s disease didn’t do this. drugs and dementia jail did” Walker wrote:

“I see some wonderful examples of care homes led by love, compassion and human connection but unfortunately this is still not the norm. Any culture that allows people to be dehumanized must be challenged. Dehumanizing cultures begin with the separation of staff and residents such as separate toilets for staff, uniforms that separate, conversations that are not inclusive to all present, disregarding distressed cries. All of this is commonplace and normalized in many facilities.

I also know from my work that when you give care workers permission to challenge, debate and stand up to dehumanization, amazing things happen. In my experience, care staff in most care environments do the job because they care. But they often lack the self esteem, knowledge and support to stand up against poor care culture.

So I keep empowering, educating and showing how great it feels for everyone when people living with dementia are fulfilled, understood and thriving. Everybody wins!”

I couldn’t agree more.

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Advocacy, Real life, Toward better care, You said it!

it’s sad

February 28, 2018March 14, 2018 My Alzheimer's Story

Natalia Loskutova, Director of Evaluation at American Academy of Family Physicians (AAFP), knows what she’s talking about. Her professional interests include translational research, neuroscience, and aging especially in the relationship between cognitive and physical decline in dementia. Her current research interest is in cognitive and non-cognitive changes in early/pre-symptomatic Alzheimer’s’ disease, disease predecessor, early detection and disease progression.

After reading “against my wishes and against her will” Loskutova commented:

“It is very sad that despite story after story of the victims of this approach and plentiful research evidence of the harms resulting from the use of several medication classes in persons with dementia that these practices still exist and, most disappointingly, are accepted by many.

You’re right Natalia, it is sad.

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Advocacy, Real life, Toward better care, You said it!

don’t hide behind safety

February 18, 2018March 14, 2018 My Alzheimer's Story

Scottish social care trainer Derek O’Hagan saw the value in the videos documenting Mom’s experience with “hidden” physical restraints and is now using them to give care home staff a different perspective on fall risks and using restraints. He says the outcome has been “very positive.”

O’Hagan also says:

“I believe we hide behind the word safety, I don’t always blame staff but more so the situation, support for older people is extremely underfunded and my opinion undervalued. The video of your mum is not even subtle, it is full on restraint that will be dressed up as ‘safety’ or ‘falls risk’. What we don’t do is talk about how we could make it safe; we just say it is not safe and accept it. Care for the elderly needs to change, here in Scotland I have written to our government asking how this can be done, and when I deliver training in care homes this is an area I focus on. I personally think large care homes should be closed and smaller more person-centred homes opened, even though it may be slightly less cost-effective.”

Spot on Derek!

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Advocacy, Real life, Toward better care, You said it!

greg steven elofson says: perspective is important

February 15, 2018February 17, 2018 My Alzheimer's Story

When I posted “the shocking truth behind this tragic video” on LinkedIn, the first comment it generated reframed the whole situation in less than five full lines, and in a way that made infinite sense to me. I think it will make huge sense to you too.

Greg Steven Elofson, Co-Founder at AlzCare Labs, Inc. said:

“Perspective is so important. A more accurate story lead-in would be: “These two people have been locked up against their consent for prolonged periods of time, rarely seeing the light of day, likely left with unmet needs for privacy, palatable food, and ordinary companionship. Predictably, they have done what we see prison inmates do with regularity–fight. Except these unfortunate people have committed no crimes.”

You said it Greg!

And I would add: They’re jailed because they live with dementia, a condition we stigmatize and haven’t yet (for the most part) learned to treat humanely.

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Advocacy, Real life, Toward better care, You said it!

kate swaffer says: use a human-rights-based approach

February 13, 2018February 14, 2018 My Alzheimer's Story

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Australia: Dementia care activist Kate Swaffer is known worldwide for her advocacy on behalf of people who live with dementia. She is a founding member of Dementia Alliance International, a speaker, and an author, as well as a wife and mother. She blogs here. The Straits Times article that goes with this video is here.

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Advocacy, Real life, Toward better care, You said it!

stephanie frederick says: learn a different language

February 11, 2018February 14, 2018 My Alzheimer's Story

I decided to create a new space on MyAlzheimersStory.com to preserve the useful information, inspiring thoughts, short stories, good ideas and inspiring quotes people share. This is the first one thanks to a LinkedIn connection. I’m calling this space “You said it!”

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I posted 10 ways to reframe “refused medication” on LinkedIn and asked “Can changing the words we use change the way we think about people who live with dementia?”

Stephanie Frederick, M.Ed., RN said:

“I’m an (independent) RN Patient Advocate. My (dementia) patient-client and I were recently “fired” by the PCP (primary care physician) because I refused a medication the client didn’t want (“I feel so drugged!”). It was the 3rd added psychotropic medication on the same day the other 2 medications were increased. The physician couldn’t convince the patient, and he was very angry that I agreed with the patient-client. We were given 30 days to find another provider, which we gladly did. Thank you for helping healthcare practitioners and caregivers to learn a different language!”

You said it Stephanie!

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Advocacy, Real life, Toward better care, You said it!

coy gupta says: what goes around comes around

February 2, 2018February 26, 2018 My Alzheimer's Story

Entrepreneur and data mining guru Coy Gupta has strong opinions. And he doesn’t pull any punches. My post “the lies added insult to injury” touched a nerve when he read it.

Here’s what Gupta had to say in a LinkedIn comment:

“Nursing facilities often use drugs like Thorazine and Haldol to medicate patients. Wait, my mistake, Ooops! Sorry care facilities, I forgot to mention you also use various cocktails of various meds like Ambien and Lunesta to make them sleepy. Ha! So life is good for the care facility. Patients sleep, wake up, get medicated, sit there drooling all day, eat or get fed, then take pills and go to sleep again. Repeat 365 days of the year and you can manage double the number of patients with half the staff and one crooked doctor. Oh wait, the doctor is board certified, has 20 years experience and not all the smarts you might think. Oh wait, you want to argue with him or her? Good luck with getting an appointment. If your loved one dies, oh well they were old, so what did you expect? Go to court? Good luck with that too. The damages (if you can prove them), are based on the life expectancy of the deceased. Hmmmm. I wonder if we have a problem? You think the health department can solve it? Highly unlikely. And that’s good news for the doctors and staff that drug and mistreat patients. The only saving grace at this point is the abusers will eventually they’ll end up in the system they’re a part of now, and receive the same unacceptable treatment they give others. But uh oh — so will the rest of us!”

Sorry to say I think you’re right Coy.

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Advocacy, Real life, Toward better care, You said it!

sue clarke says: they locked up my mom

February 1, 2018May 10, 2018 My Alzheimer's Story

I posted “hidden restraints: hidden abuse” on Facebook with this lead in: “Physical restraints aren’t always as obvious as safety belts and prison bars. I still get upset when I watch these videos; I just feel this is so wrong. On the other hand, I’m grateful I was there to liberate my mom each day, even if it was only for a few hours.”

The post was shared dozens of times and generated many comments, but this one from Sue Clarke, which I have reproduced here exactly as she wrote it, touched my heart; she said:

“My mom. Had got. Alzheimers. And demture. And the car Home. Would lock her in her room. When she. Started. To shout and lash out. We been few times. Me and my auntie. Dad. Used to get up set. We had to find a. Carerer. To unlock the. Door with. A key It’s so sad for the family. And god knows what these poor. Lady. Family feel. I’m so glad. Mom and dad. Have. Passed away. Together. Gone to a better place. Xxx”

Sue Clarke’s comment felt to me like a raw piece of poetry, just like being the care partner to someone living with Alzheimer disease can sometimes be like an experiential life poem that is at once beautiful and tragic.

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