Tag: You said it!

Advocacy, Toward better care, You said it!

it’s as frustrating for care workers as it is for family members

My Alzheimer's Story

The state of our elder care health system (worldwide!) is atrocious. And many care workers within it are as neglected and abused as the people they are supposed to be taking care of. After former care worker Heather Reece read bullied and banned: rachel’s story, she wrote:

“Having been a carer of people with dementia, [I can tell you] it’s as frustrating for the carers as it is for the family. Understaffing is the biggest issue; the amount of people you are expected to assist to wash and dress per carer is ridiculous. It’s like a factory conveyor belt, and it shouldn’t be like that. You’re not given the time to let “Margaret” or whoever brush her own hair even though she’s more than capable of doing it but it takes her 20 mins! You’re not given 20 mins to assist to wash and dress one person let alone to help Margaret just brush her hair. It’s sad and wrong that you’re classed as not pulling your weight as a carer if you do your job properly.”

You said it Heather Reece! We need more trained, qualified and compassionate care workers who have more time to do their job properly instead of being rushed because the ratio of residents to workers is completely out of whack.

#FightTheGoodFight #WeCanCareBetter

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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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https://myalzheimersstory.com/2017/12/02/understaffed-nursing-homes-force-residents-into-incontinence/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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Advocacy, Toward better care, You said it!

nobody seems to care

My Alzheimer's Story

I get comments, emails and letters every day that break my heart. I wish I had time to share all of them because they paint such a vivid picture of the needless suffering that results from lack of knowledge, lack of understanding, lack of compassion and lack of resources in dementia care.

When I shared this post about wandering for the umpteenth time on the MyAlzheimersStory.com Facebook page, daughter and care partner Miriam Oltrogge made a comment that brought tears to my eyes:

“My father is known as a wanderer, exit seeking and as having behaviour issues at his long term care home. So now he spends his days in the locked unit with just a half floor where he walks back and forth like a prisoner. His active lifestyle kept him out of a wheelchair, and he still enjoys being up and about. Little did he know where he would end up at 88 years old because he staying so active and physically healthy. These homes could find a better way to handle this but they choose the easiest  and most cost efficient for them.I am sure that some of the people on his floor go for weeks without getting any sunshine and fresh air. This wouldn’t be acceptable for children or prisoners. Why is it ok to do this to seniors? We don’t know who to complain to. Nobody seems to care.”

You said it Miriam Oltroggem, and you are so right, it does often seem like no one cares.

#FightTheGoodFight #WeCanCareBetter

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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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https://myalzheimersstory.com/2017/05/02/wandering-is-not-a-symptom-of-dementia/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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Advocacy, Toward better care, You said it!

the current system is disgraceful

My Alzheimer's Story

I accompanied my LinkedIn post of “please remain seated for the rest of your life” with a question:

“Would you want to be confined to a chair for hours every day at someone else’s whim?”

Canadian personal support worker (PSW) Paula Littzen answered in no uncertain terms. She wrote:  

“No, and it is abuse to make anyone do so! It is unacceptable for this practice, and many more, to be allowed to occur in long-term care (LTC) facilities. The Government and Ministers of Health and LTC, Canada wide, need to open their eyes and ears, face the FACT that the current LTC system is abusive, extremely inadequate, often neglectful, and is not even meeting the basic human rights, and needs, of the people living there.

Our most vulnerable people are not being afforded the care they deserve and need. We know what is needed and must be implemented in LTC facilities to ensure our most vulnerable live their last few years well, happy, and properly cared for. We must hold our leaders accountable, and demand what needs to be done, be done! The current system is disgraceful to anyone with a brain, sight and hearing.”

You said it Paula! And thanks for caring for others the way that you would want to be cared for.

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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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https://myalzheimersstory.com/2016/04/18/please-remain-seated-for-the-rest-of-your-life/

https://myalzheimersstory.com/2018/07/15/19-ltc-human-rights-abuses-i-hope-quebec-will-have-to-pay-for/

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Advocacy, Toward better care, You said it!

one more care worker could make a world of difference

My Alzheimer's Story

The voice of validation is being amplified by individual advocates around the world. Here is another example of those who are willing to speak frankly about the systemic neglect and abuse that takes place in countless long-term care facilities.

After Michael Krauthamer (consultant, speaker, advocate and author of “Walking In Their Shoes: Communicating with Loved Ones Who Have Alzheimer’s disease”), read take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community, he reached out to me on LinkedIn and wrote:

“I am so very sorry about what happened to your mother. Your article and video is heart breaking. Since beginning work in healthcare facilities, I have fought to reduce then stop antipsychotic medications that are handed out like candy to PLWD. I have witnessed too many people placed on these medications because facilities do not want to pay for one more employee. I can always tell when someone is overmedicated. Working with the staff, I have seen remarkable changes when the antipsychotics are ended. Although I realize it’s cheaper for the facilities, it ruins the patients quality of life.

Hiring one more Certified Nursing Assistant (CNA) or Personal Support Worker (PSW) provides the proper amount of staff so that they do not need to use these detrimental alternatives. I stand beside you 100% to help stop the abuse that happens to PLWD, who are prescribed these medications. Once again, thank-you for sharing.”

You said it Michael, and you are so right. #FightTheGoodFight #WeCanCareBetter

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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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https://myalzheimersstory.com/2016/08/04/what-happens-when-care-homes-stop-giving-antipsychotics-to-elderly-people-with-dementia/

https://myalzheimersstory.com/2018/06/09/take-off-the-blindfolds-and-banbpsd-an-open-letter-to-the-worldwide-dementia-community/

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Advocacy, Toward better care, You said it!

let them have their dementia

My Alzheimer's Story

For the many people who just don’t get it, there are a few who totally do. When I run into them, either online or in person, my heart fills with hope for the future. Reading this post by social worker, educator, speaker, trainer and fellow dementia care advocate Daniel Kuhn on LinkedIn made my day. Kuhn wrote:  

“I recently had the pleasure of giving a keynote lecture at an Alzheimer’s Association conference in New York on “Keeping Connected to Someone Living with Dementia.” The positive feedback from professionals and families focused on the fact that I stayed clear of medical interventions and instead talked about how we can help meet emotional needs with compassion, communication and imagination.

It was interesting to hear that this humanistic approach is still considered innovative, 20 years after Tom Kitwood published his finest work, Dementia Reconsidered: The Person Comes First. The biomedical approach to dementia is so deeply embedded in our culture. And it has miserably failed people with dementia and their families.

Once we accept that little or nothing can be done to fix brain pathology, it’s time to accept symptoms and to learn to compensate for them. Instead of fighting dementia with drugs and words, we can listen and simply ask “How can I help to improve your quality of life?” Then it’s time to act individually and collectively.”

You said it Daniel! And thank you for continuing to spread these important messages.

#FightTheGoodFight #WeCanCareBetter #WhereverWeAre

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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.

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

https://myalzheimersstory.com/2015/03/01/life-is-a-death-sentence/

https://myalzheimersstory.com/2015/08/13/my-mom-still-counts-just-like-everyone-else-and-she-deserves-better-we-all-do/

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Advocacy, Toward better care, You said it!

sometimes they just don’t get it in australia either

My Alzheimer's Story

The state of dementia care (i.e. largely lacking and often substandard) is the same everywhere. I know because I get comments and messages to that effect from around the world. This one, from long-time Australian subscriber Kate G. confirms what I opined in hundreds of studies make me mad as hell.  Kate wrote:

Dearest and Amazing Susan,

Thank you for this. I am studying a Bachelor’s degree in Dementia Care and fully understand your frustration. The main reason I am at university now is because I was fed up with healthcare workers not listening to me, the primary carer for my wonderful 90-year-old dad who is LIVING WELL with Alzheimer’s disease.

Sadly, arming myself with detailed academic knowledge hasn’t helped much. Whatever I have to say still falls on deaf ears. No, I am not a registered nurse, doctor, or health care worker. BUT, I do know what keeps my dad safe and happy, and I have living proof, even though it’s not what academics and researchers might consider “evidence.”

It’s as you describe, Susan, — behaviour is the same for all human beings whether one has dementia or not! It’s a constant battle to re-educate the people who are involved in my father’s care. He lives alone in his own place, with a carefully programmed roster of paid care givers who enable and assist him with daily life such as meals, dressing, hygiene, exercise and social interaction.

It takes him time to develop trust, respect and feelings of companionship with these caregivers, but when he develops that trust, and feels safe and secure with someone then ALL IS WELL. However, when an agency care manager arbitrarily decides to change the roster and sends a ‘stranger’ in to help with his shower you can imagine his reaction (and we would all feel the same).

Sometimes they just don’t get it.

At university, I am obliged to study the research that you refer to and often have to laugh. It is all so simple and obvious – to people like you and I. We have to keep spreading the word and educating all who cross our paths. People do not believe me when I tell them my dad is happy and well – he is on no medications (just probiotics and vitamin D), uses no mobility aids (he goes to hour-long exercise-to-music classes twice weekly to maintain strength and have fun), and we monitor his diet so that he is hydrated and consumes adequate protein. Add a sprinkling of car pool Karaoke (we sing out loud in the car), laughter (always having fun) and kindness (mutual understanding) and there we have it. Dad has little to no memory, and occasional confusion, but he is happy and he lives a meaningful life.

Thanks for all the wonderful posts, vignettes and poetry. We must keep on educating (and researching, so they say), and create that change!

Kate G.

Kate G. mistakenly commented anonymously; thankfully, she sent me a follow-up email that said:

“Hi Susan,

I have been reading your blog for some time now, I KNOW we are totally aligned! We have so many similar stories you and I!

I left a glam life and career in Europe to come back to Australia and be with my parents. My mum had cancer, dad was fine. Then when dad was left on his own I began to notice some changes in his behaviour that was beyond grief. Off we went to doctor, then scans etc, then memory clinic, then gerontologist, then… the Alzheimer’s ride took off! Amazing times!”

You said it Kate. I’m glad you reached out to share your experience. #FightTheGoodFight #WeCanCareBetter #WhereverWeAre

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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.

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

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

https://myalzheimersstory.com/2016/03/30/20-ways-to-create-dementia-care-homes-away-from-home/

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Advocacy, Antipsychotic drugs, Toward better care, You said it!

we need a paradigm shift

My Alzheimer's Story

Retired medical writer turned care partner and blogger Lorrie Beauchamp was clearly impacted by Dr. Allen Power’s excellent post Living Well with Dementia: What it Means and What it Doesn’t Mean on Dr. Bill Thomas’s blog Changing Aging. She commented: 

“As a retired medical writer and care partner for my parents (both with dementia/Alzheimer’s), I am relieved to see a growing number of health care professionals who have stopped focusing on the cure and ineffective treatment options. Throwing Big Money at Big Pharma is a Big Mistake.

Concurrent to understanding the underlying physiological causes of dementia, we need to immediately address the emotional and psychological symptoms and fallout of living with it, for both the people who have it, and those who are their companions and carers. This aspect of living with dementia is largely ignored at the moment.

We also need financial assistance to help people living with dementia (PLWD) stay in their homes, given the atrocities committed in residences and long-term care facilities. Healthcare systems throughout North America and elsewhere in the world (e.g. the UK) are in crisis and are ill-equipped to do what is required; they are too big to shift quickly enough to meet the needs.

We need open-minded entrepreneurs to step up and use innovative resources to ensure a good quality of life for PLWD. People living with dementia are angry and restless and with good reason; they need to be heard, not shut up, put away and restrained. And antipsychotics? No way. We need a paradigm shift, and it’s not going to happen until more people like you, Dr. Power, with your credentials and credibility, step up and speak the plain truth. Thank you.“

Read more of Lorrie Beauchamp’s insightful thoughts on ADRD and being a care partner on her blog Unforgettable. Follow her on twitter here.
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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.

https://myalzheimersstory.com/2018/04/20/whos-in-charge-where-are-they-and-do-they-care-2/

 

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

when people castigate, educate!

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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