Advocacy, Life & Living, Toward better care

it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks

The tragedy that is being played out in long-term care facilities (LTCFs) across Canada and around the world as a result of the COVID-19 pandemic comes as no surprise to elder care advocates such as myself.

We have seen the rampant neglect and abuse in LTCFs worldwide, and some of us have been advocating for change for decades. I have been writing this blog for six years, and have documented my own mother’s neglect and abuse including finding her in soiled incontinence briefs (about which I wrote an open letter to Quebec’s then minister of health Gaetan Barrette), being sedated into a comatose state for close to four years, being physically restrained, and more.

Elder care advocates are not alone in knowing about the dire situation in LTC around the world. Care workers know about it, nursing home managers and administrators know about it, and some family members of the neglected and abused know about it too. Elder neglect and abuse in LTCFs have been pervasive for years, and that’s why we’re seeing so many deaths in LTCFs during this pandemic.

Don’t be fooled by what the politicians and government officials are saying now. They would want you to believe that this crisis situation is the result of COVID-19. It’s not. It’s the result of the systemic failure that has been ongoing for a very long time. In Canada, it’s also the result of healthcare officials and politicians not listening to advocates’ warnings about what would happen when COVID-19 reached our country.

Because of the pandemic and the disproportionate toll it’s taking on people living in so-called “care” facilities, the general public is learning the truth: the system sucks.

What everyone also needs to know is the system sucked long before COVID-19 came calling. Here’s what advocates says about the situation in Quebec (the situation is similar across Canada, the US and the UK):



Elder care advocates worldwide have long been fighting for person-centred care that engages people and helps them to live rich and full lives until the end. Research shows this type of care is essential to the well being of older people, particularly those living with dementia. Treating our elders in any other way is criminal, as we are now seeing clearly as they die in their thousands worldwide from COVID-19.

Meanwhile, those responsible point fingers at each other to avoid “holding the bag” as in the case of the Herron “home” in Quebec, Canada.

Here are some of the factors that allow institutional neglect and abuse to continue:

1 ) Ageism & stigma

Ageist views remain widespread (e.g. old people are useless; their lives don’t matter; our job is to warehouse them, not engage them with life). These unhappy myths negatively impact the way we care for elderly people who live in their own homes, in our communities and most particularly in LTCFs.

Many people don’t understand the realities of aging and aged care. Some of the erroneous beliefs include: it doesn’t matter how we treat old people; they don’t know what’s happening; they’re going to die soon anyway; and they are expendable. For example, one member of parliament is said to have implied that since old people in nursing homes are the primary victims of COVID-19, that we should go ahead and re-start the economy.

2 ) Lack of awareness

For the most part, the general public simply does not understand the generally poor conditions that exist in long-term care facilities. Even people who have a family members living in LTCF may not fully understand the conditions under which residents live because they believe what they are told by care workers, administrators and the government. I know from having visited my mother every day for four years that things are rarely what they appear to be. It’s true that some facilities provide good care, but my sense from ongoing research is that they are the exception rather than the rule.

3 ) Poor leadership

Senior executives and medical professionals who manage LTCFs, as well as government policy makers who  are responsible in large part for most of the factors that follow and for the neglect and abuse that result. Being willing to take a hard look at what has been wrong and what is wrong with failing eldercare systems takes courage. Identifying shortcomings and fixing them is a gargantuan task that requires vision, will, energy and commitment. If those kinds of people had been in leadership positions before and were in leadership positions now, we wouldn’t find ourselves with the existing situation: broken facilities full of infected workers and dying residents.

4 ) Lack of training/understanding

The standard of care in any given facility is only as good as the frontline workers who deliver it. Care workers require specialized training and understanding; if they don’t have the skills they need, neglect and abuse are inevitable. Frontline care staff need the encouragement and support of competent, compassionate, visionary leaders to get the job done.

5 ) Low staff-to-resident ratios

How can one care worker attend to the needs of eight to ten or even more residents and do it to a reasonable standard? It’s not possible. And yet, those are the kinds of care worker to resident ratios that prevail in most LTCFs. It’s no wonder neglect and abuse are pervasive. The situation has reached a crisis level with the COVID-19 pandemic.

6 ) Warehouse-like environments

There have been recent innovations in design including dementia villages, small group homes, and facilities in which childcare and eldercare are combined. While these approaches have proven successful, organizations that apply them are still relatively few and far between. Most facilities are not designed to meet resident needs, but rather to maximize operational efficiency. Calling a warehouse a “village,” a “manor,” or a “specialized memory care unit,” does not change the essence of what it is.

7 ) Dis-incentivized workers

Care workers tend to be poorly trained and poorly paid, and overworked because of low staff-to-resident ratios; they are often ill treated, and unappreciated. Many are given part-time work at any given facility, and must therefore work at several facilities to make ends meet, a fact that has contributed to the rapid spread of outbreaks in nursing homes across Canada.

8 ) Uncaring cultures

All of the factors above lead to UNcare cultures in which profit comes first, people come last and the status quo is never questioned, or, if and when it is, complainers and whistleblowers are quickly silenced, dismissed, or disavowed. Staff become demoralized, complacent, cynical and hardened to preserve their own sanity. Negative UNcare cultures that have become entrenched are hard to change.

9 ) Ineffective “policing”

Regulatory bodies may be stretched beyond capacity. Substandard operations/practices may be difficult to identify because of the way inspections are done (e.g. prior notice of visits results in things being “spit and polish” for inspecting eyes), and offending institutions may remain open and operating despite substandard performance and long lists of regulation breaches and/or regulatory infractions.

10 ) The bottom line

Cost-saving, cost-cutting, and the pursuit of profit are deemed more important than providing vulnerable elders with the care they need and deserve. Residents and families are powerless to change the system to which they have fallen victim.

It’s time to take a closer look at this tragic and completely unacceptable state of affairs, demand research into the nature and prevalence of neglect and abuse in long-term care, and most important, to immediately implement action plans to stop it. Class action suits such as these are a step in the right direction.

Perhaps this pandemic will finally open people’s eyes to the horrors of long-term “care” in Canada and around the world. But oh what a heavy price to pay for the potential of change!

6 reasons why staff in long-term care facilities don’t report incidents of elder abuse and neglect

25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it

3 more reasons family and friends of people who live with dementia in long-term care facilities don’t report abuse and neglect

3 reasons family and friends of people who live with dementia in long-term care facilities don’t report abuse and neglect

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Image copyright: warrengoldswain / 123RF Stock Photo

Advocacy, Real life, Toward better care, Videos

500+ reasons we need to do something about widespread neglect and abuse in long-term care in canada (and around the world)

Actually, there are probably thousands of reasons, or maybe even tens of thousands, but there are at least five hundred that I know of — each representing someone who once was, and perhaps still is, a living, breathing human being who was denied or is being denied his or her rights.

Reason #1
The number one reason for me is my mom. She was neglected in various ways, and abused by being administered antipsychotic drugs she didn’t need or want during the four years she spent in a Quebec nursing home. The neglect and abuse culminated in her death in August 2016.

I advocated tirelessly for better care for her during her four years, and, as a result was vilified, ridiculed, disbelieved, slandered, and punished – just as many other dementia and care advocates are. Now, hopefully, the tides are changing. Family members and people in so-called “care” are joining together and saying enough is enough.

Reason #2
Lori Dekervor’s dad Arthur Ross; he died in excruciating pain because workers at the long-term care facility where he resided failed to provide the care he needed after a fall. Like many cases of elder abuse, this one may have gone unnoticed had daughter Lori not found (almost by accident) a stinking, gaping, infected hole at the base of her father’s spine.

The literally hundreds of other reasons comprise the cases of abuse and neglect that have caused suffering and death in long-term care in the past several years alone.

Here are a handful from the scores of examples worldwide:

Francis Yorke found cockroaches in her mother Margaret’s room – even in her bed. Just as I did, she frequently found her mom in wet or soiled incontinence briefs when she arrived for a visit. Margaret eventually died of a UTI. See more in the W5 video below.

Joy Dey’s mom Winnifred was neglected in three separate facilities before Dey found a good one.

Betty McTay’s mom, Edna, who was living in a long-term care facility, died of starvation.“ I think it’s criminal that these places are getting away with this,” McTay tells Sandie Rinaldo in the W5 video below.

Judy Berry’s mom Evelyn Holly was kicked out of twelve “care” facilities in seven years. Berry was so angered that, after her mom died, she opened her own care home, which she ran for sixteen years before becoming a dementia care consultant.

Salim Younes noticed bruises and cuts to his father’s head and legs, as well as significant weight loss; his complaints fell on deaf ears. So he installed a video camera in his father’s room. See what he discovered here.

Family member advocates in Quebec and Ontario have joined together in two separate legal actions to hold long-term care facilities accountable. I am part of one in Quebec, which currently has more than 300 complainants; and Lori is the driving force behind another in Ontario, which currently has more than 200 complainants. The latter is being covered by CTV’s W5 in shocking investigative reports such as the one below, which includes confirmation from a care worker (others have also spoken out in Ontario) of the deplorable practices that may be found in many facilities:

The surprising part about Dekervor, and the more than two hundred families who have joined her to mount a case against LTC giants Revera, Extendicare and Sienna, is that she and they have come forward. I believe elder abuse is pervasive in Canadian long-term care. The problem is, it’s also hidden, and thus hard to fight. Whistleblowers are few and far between and family members often either don’t recognize abuse if they see it or fear reprisals or even worse care if they rock the boat. Those who do complain have a hard time being heard and making their stories stick because facilities and their “experts” hold all the cards. Think David and Goliath without the happy ending.

Fingers crossed things are changing… #FightTheGoodFight

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

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/2016/10/04/25-practices-long-term-care-workers-know-are-elder-neglect-and-abuse/

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Resources, Teepa Snow, Tips, tools & skills, Videos

Teepa Snow demos 10 first steps to calm & comfort a distressed person living with dementia

This four-and-a-half minute video by Teepa Snow (see below) demonstrates 10 easy steps to calm and comfort a distressed person living with dementia.

Truth be told, these practical actions would likely help calm and comfort anyone in distress:

  1. position yourself on the person’s dominant side
  2. useHand Under Hand™ (HUH™ video demo with Teepa here)
  3. pump hand you are holding (like a heartbeat)
  4. copy their breathing with emphasis on the exhale
  5. repeat issue using their words
  6. acknowledge & validate their emotions (more on validation here)
  7. mirror their emotional state
  8. calm & slow your own voice
  9. slow your breathing, continue emphasis on exhale (more on breathing here)
  10. check / confirm issue (e.g. you’re angry?)

These are also great:

10+ Teepa Snow videos on dementia basics

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

10 things to remember when you interact with people who forget

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

//s3.amazonaws.com/downloads.mailchimp.com/js/mc-validate.js(function($) {window.fnames = new Array(); window.ftypes = new Array();fnames[0]=’EMAIL’;ftypes[0]=’email’;fnames[1]=’FNAME’;ftypes[1]=’text’;fnames[2]=’LNAME’;ftypes[2]=’text’;}(jQuery));var $mcj = jQuery.noConflict(true);

Humour, Tips, tools & skills

get silly billy!

“One of the things we teach our caregivers is to take time to be silly or even just to sit quietly. Sometimes we like to make silly faces with our residents or even take selfies. Being silly can be a great redirection tool to get a resident or family member out of a negative mood or a sad day. Try it and let us know if it works for you. And smile. Always.”

You go Joanna!
~~~~~~~~~~~~~~~~~

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. 

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

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

turn potential dementia disasters into fun and laughter

Many dementia care partners have learned that going with the flow works magic: it can turn potential disasters into gales of laughter with very little effort. All it takes is a little bit of imagination. I stumbled on a perfect real life example shared by care partner Catherine Bixenman-salesi. in the online dementia support group USAgainst Alzheimer’s.

Catherine shared the vignette in response to an article on validation that had been posted by group administrator and dementia care author and advisor Carol Bradley Bursack.

Here’s what Catherine had to say:

“My teenaged son often corrects his grandmother, and then suffers the consequences. I, on the other hand, let her stories flow. I also enjoy adding flavour to them. This makes her perk up, and turns her from sad to glad. It also gets her talking, and gesturing with her hands. I help piece the sentences together by filling in every other word, and away we go. Last night, she noticed a commode in her bedroom. She pointed at it and in an angry tone said: ‘Not mine!’ It was a perfect opportunity for some fun.

‘Tell that lazy ass woman to take her belongings with her when she goes,’ I said with a scowl on my face. ‘I have enough work to do here without having to clean up after her!’

Mom burst out laughing. What a joyful sound it was. Of course I laughed too. It seems like a silly thing, but to her it was funny. I could have told her it was hers, which it is, and she would have denied it and become hostile. Instead, I went along with her version of reality. The result? Smiles and laughs all around.”

Kudos to Catherine! I know from my own experience that this, and other imrov techniques really works a treat. I talk about in the video clip here, and in my BANGS model here. If you haven’t tried “going with the flow,” I highly recommend you do so. Your stress level will drop and your relationship with your care partner will improve.

If you have tried going with the flow and have similar stories to share, I’d love to hear them.

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Advocacy, Toward better care, Videos

15-minute care makeover with claire sweeney

How long does it take you to get ready to face the day – to get yourself up and out of bed, have a shower, have breakfast and get dressed? Half an hour? Forty-five minutes? More?

Could you do it all in less than 20 minutes? What if you were an older adult with a disability? What if you had dementia? How long would it take?

One of the reasons people living with dementia get sedated in long-term care facilities (LTCFs) is to make them more compliant so they require less care worker time, because most LTCFs do not have enough personal care workers to provide proper care. Staff to resident ratios in LTCFs, including “memory care” units, range from 1:8 or 1:10 in “better” places to 1:20 or more in others.

It doesn’t take a rocket scientist to figure out it’s impossible for one care worker to rouse, toilet, wash, dress and help eight to 10 older adults living with dementia to have breakfast as well in less than two hours, and to do it properly. But that’s often what’s expected. Clearly, it can’t be done. No way, no how. Not well. Not even passably. No wonder personal support workers are frustrated.

In the UK, care workers who visit people in their homes to help them with activities of daily living  are expected to get the job done in 15 minutes. Fifteen minutes. This 2017 spoof, starring UK 60-minute home makeover maven Claire Sweeney, shows just how ridiculous that is. The same basic principle applies in LTCFs.

For those who aren’t familiar with Claire Sweeney and 60-Minute Makeover, here’s a 2014 clip from one of the episodes (in which she often wore cleavage-revealing clothing to the delight of voyeurs):

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

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

how being sorry and stupid turned mad into glad

I’ve shared parts of this story before. It’s an afternoon in October 2015. Mom appears to be asleep in the recliner when I arrive at the LTCF to visit. I lean over and put my hands on either side of the chair. My face is about arms length from hers.

“Patti?” I say to check if she’s really sleeping or just resting. When she opens her eyes, I know immediately she’s unhappy. I also know exactly what to do to minimize the likelihood of things deteriorating further. In the space of about an hour and a half, I created conditions under which Mom and I could move from bad to good instead of from bad to worse. There’s nothing magic about what I did, anyone can do it.

One way is using the BANGS model I developed to help care partners and care workers effectively engage people who are living with dementia. Here’s what I did: 1) took several deep breaths 2) assessed, accepted and agreed, 3) didn’t argue or correct, 4) went with Mom’s flow, and 5) said I was sorry (a lot!).

I thought it might help others to be able to hear our real-life conversation and the transformation we effected together. The five-minute audio below is divided into three segments. The first one is when I arrive to visit Mom; the second is about an hour later when her mood is shifting; and in the last segment we’ve gone all the way from sad to glad.

From sad to glad: an example of BANGS in action

Click here to listen (I highly recommend listening while reading to fully “get it”):

Read here: 

Susan: We were both talking about nothing

Mom: Well that’s stupid.

Susan: That was stupid. (laughs) That was stupid, Mom.

(Susan turns down the loud music, which may have been contributing to Mom’s angry demeanour)

Susan: Pardon me?

Mom: You don’t lalalalala look stupid things.

Susan: I’m a silly Billy eh mom?

Mom: Yeah, and you’re stupid.

Susan: Am I? What have you got on your face here? It’s cake. (laughs) I’m happy to see you.

Mom: Well I’m not happy to see you.

Susan: No?

Mom: No. I’m not happy at all.

Susan: Are you mad at me?

Mom: Yeah, I am mad at you. Very mad.

Susan: Are you?

Mom: Yeah.

Susan: What have done?

Mom: Well it’s stupid.

Susan: I did a stupid thing?

Mom: Yeah.

Susan: Oh. Sorry about that.

Mom: Yeah, well it is stupid.

Susan: I didn’t mean it. I didn’t mean it. Is there anything I can do to fix it?

Mom: Well no, there’s nothing I can do to fix it. (Mom starts to “tap” Susan quite hard)

Susan: Oh god, you just whacked me. (The taps get lighter) Are those love taps or mad taps?

Mom: Mad taps.

Susan: Okay. Well at least they’re not very hard.

Mom: What do you mean hard?

Susan: Oh my goodness.

Mom: That’s awful thing to do.

Susan: I don’t know what I did, but whatever it is, I’m sorry I did it.

Mom: Well why did you do whatever stupid it was?

Susan: I don’t know. I made a mistake. I’m sorry.

Mom: Well, it’s sort of stupid that you didn’t –

Susan: I know I admit it. I admit it. I was stupid. I know. I don’t know why I did it Mom. It was a mistake. Is there anything I can do to fix it?

Mom: No!

Susan: Oh. Okay. Because if there was something, I would do it.

Mom: Yeah.

Susan: Yeah that’s what happened. Sorry about that. But maybe it’ll fade over time.

Mom: Well I don’t think so. 

Susan: No? Okay. Is it okay if I sit here with you for awhile? How about if we do your nails?

Mom: Well, the nails are beautiful.

Susan: Well, they could be redone I think. Shall I redo them for you?

Mom: Na na na na no I don’t want to.

(About an hour later:)

Susan: Those are nice taps.

Mom: Yeah.

Susan: Are those love taps?

Mom: Yeah, they are nice taps.

Susan: Before you were giving me mad taps. You were mad at me before Mom.

Mom: Mad at you when?

Susan: About an hour ago.

Mom: Oh well, so what.

Susan: (laughs) That’s what I said Mom – so what? It’s okay. You have a right to be mad when you wanna, Mom.

Mom: Yeah, I guess I better.

Susan: Yeah. Life is short. Do what you want.

Mom: Yeah.

Susan: Eh?

Mom: I guess.

Susan: Yep. That’s right.

(About another half hour later:)

 Susan: And then we sang “Mary had a little lamb, little lamb, little lamb…

Together: it’s fleece was white as snow…etc.

Susan: I like that nursery rhyme, it’s cute.

Mom: Well, it was a nice story.

Susan: Yeah it was a nice story, Mom. How about baa, baa..

Together: Baa baa black sheep, have you any wool…

This approach worked wonders for me on many occasions. That’s not to say it always worked, because, just as we all do, Mom had days when she was just plain unhappy — who wouldn’t have been in her circumstances? No one is happy all the time — or at least no one I know, including myself! The point is, this way of engaging someone living with dementia has a much better chance of working than arguing, correcting, and dismissing. Try it and see for yourself.

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

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

//s3.amazonaws.com/downloads.mailchimp.com/js/mc-validate.js(function($) {window.fnames = new Array(); window.ftypes = new Array();fnames[0]=’EMAIL’;ftypes[0]=’email’;fnames[1]=’FNAME’;ftypes[1]=’text’;fnames[2]=’LNAME’;ftypes[2]=’text’;}(jQuery));var $mcj = jQuery.noConflict(true);

Take my short survey on behaviour here.

Image copyright: lightwise / 123RF Stock Photo

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

30 tips to help reduce anxiety in dementia care

We all get anxious sometimes. It’s normal. Often it seems that people who live with dementia experience anxiety more than others. Maybe they have more to be anxious about. Maybe they are more sensitive to stimulation or lack of stimulation. Maybe they become more anxious in particular circumstances or at certain times.

Here are 30 tips to reduce anxiety and stress levels of people living with dementia and their care partners:

  1. minimize medications (and thus their side effects)
  2. remember: everyone experiences anxiety sometimes
  3. provide extra full-spectrum light
  4. track triggers, and reduce them where possible
  5. avoid anticipating “bad behaviour”
  6. avoid caffeinated beverages
  7. avoid alcohol
  8. stick to routines
  9. remember: different things work for different people
  10. remember: what works today may or may not work tomorrow
  11. avoid agitating television (e.g. Dr. Phil)
  12. be physically active each day
  13. don’t be too physically active each day
  14. help the person living with dementia expend “excess energy”
  15. suggest an enjoyable activity
  16. remember: everything is not always “fixable”
  17. stay calm (but don’t tell them to “calm down”!)
  18. minimize loud noises
  19. minimize stimulation
  20. minimize stress
  21. go outside
  22. take a walk
  23. sit by a window
  24. offer a snack
  25. comfort and empathize
  26. agree and validate
  27. play calming music
  28. use touch
  29. remember: even the best batters strike out
  30. remember: all things pass

Do you have more tips? I’d love to hear them!

Take a short survey on behaviour here.

Subscribe to my free updates here.

Image copyright: creatista / 123RF Stock Photo

Care Partnering, Teepa Snow, Tips, tools & skills, Videos

7 teepa tips to help people with dementia do what they can to care

Mom & Pia Roma in a tête-à-tête on May 9, 2013

Mom adored her cat Pia Roma; she came to live with Mom in her big red brick house on the hill sometime after 2001. In the mornings, Pia and Mom delighted in having tea for two. But as Mom’s dementia progressed, it got harder for her to care for her beloved Pia. Twice when I came home from Dubai in 2010, I found breakfast cereal instead of cat food in Pia’s dish.

“When you develop dementia you don’t lose your interest in providing care,” says  dementia care pioneer Teepa Snow, although, as she points out, you may lose some of the skills it takes to do it, just like my mom did.

Caring for other living beings such as a child, a spouse, a friend, a pet, or even the birds outside, as well as caring for the things around you such as your home, your yard, your plants, or whatever brings you pleasure, gives meaning to your life. The desire to care for others and for things doesn’t diminish with dementia.

Here are some specific tips and a video from Teepa Snow on helping people who are living with dementia to care, and thus to keep purpose and meaning alive every day:

  1. provide guidance appropriate to what kind of GEM the person is
  2. observe the person’s behaviour closely for clues
  3. use visual cues (e.g. point, demonstrate, model)
  4. use verbal cues (i.e. say what might be done, make suggestions, give gentle instructions)
  5. break activities up into smaller tasks / “windows”
  6. do “with,” not “for’ or “to”
  7. support PLWD in what they want to do, what they like to do and what they need to do

MORE “QUICK AND EASY” PRACTICAL TEEPA TIPS

7 dementia care basics from Teepa Snow

5 top dementia care tips from Teepa Snow

10 ways to calm a dementia care crisis

13 expert tips to help with “I want to go home”

10 tips to deal with hallucinations

Hand Under Hand (TM) demo

Teepa’s GEMS outshine all the stages

10+ Teepa Snow videos on dementia basics

Teepa Snow’s videos are available on Amazon here.

Take a short survey on behaviour here.

Subscribe to my free updates here.

Care Partnering, Interviews, Tips, tools & skills

alzheimer’s speaks’ lori la bey and i agree on the beauty of dementia

It’s hard for many people to believe any good can come from dementia, but those of us who have experienced transformation during the process of being a care partner to someone who lives with dementia know it to be true, and are immensely grateful for the rare gift we’ve received.

Fellow advocate Lori La Bey and I both experienced a kind of spiritual awakening during our time as care partners to our mothers. We touched on what that deep connection felt like to us when I was a guest on her popular online show AlzheimersSpeaksRadio.

Here’s a two-minute clip related to that part of our conversation:

During the hour-long show, we also talked about family dynamics, antipsychotic medications, transforming perspectives, and my BANGS model to help stop anxiety and aggression (watch the free BANGS webinar here).

Listen to the full show here.

More AlzheimersSpeaksRadio here, and more on Lori and her work here.

Subscribe to my free updates.