Care Partnering, Family, Inspiration, Videos

this is what tragic brilliance looks like

In 2011, UK pub owner Alex Lewis somehow contracted Strep A, an incredibly rare bacterial infection from which a person’s flesh starts to eat itself.  The infection attacks the limbs, then works its way inwards, through the joints, past the vital organs before finally – fatally – destroying the heart.

“I shouldn’t have survived it,” he says. “I think 10,000 people a year contract Strep in some form, and of those about 9,600 die. Then of the 400 left, only about 10 have quadruple amputations. I’m one of the lucky ones, definitely,” Lewis says in this 2016 Telegraph article.

I watched the documentary below, spellbound for an hour, as Lewis’s story unfolded starting with how the disease left him severely disfigured and disabled. Both he and his life partner Lucy demonstrate unbelievable courage, determination and loyalty throughout the several years covered in the video that focuses on hope and possibility.

While Lewis’s story isn’t about Alzheimer disease or another form of dementia, it is about love, care, caring, challenge, courage, compassion, determination, life, living, reframing and transformation, all of which are integral to the lives lived by people with dementia and their care partners.

I hope you find it as inspirational as I do.

Lewis’s closing words reminded me of what Mom told me in 2014, and what caregivers from around the world said they had learned when I asked (also inspirational):

https://myalzheimersstory.com/2014/09/07/the-main-thing-is-to-keep-going/

https://myalzheimersstory.com/2016/05/14/top-15-things-dementia-care-partners-say-theyve-learned/

#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);

Care Partnering, Family, Inspiration, Life & Living, Videos

grandpa drake the dragon teaches kids about dementia

Some people use the stuff that life hands them to create magic and beauty, while others see only despair and tragedy. Dr. Jennifer Bute is one of the magicians.

When she was diagnosed with early onset dementia, Dr. Bute began using her experience as a carer, a medical professional, and a patient to help people understand more about dementia. She produced a series of helpful videos as well as other resources that explain various aspects of dementia; you can access them on her blog (called “Glorious Opportunity”) here.

This video cartoon, developed in collaboration with Bute’s family, is narrated by her daughter Allison; it’s perfect for starting a conversation about dementia with young children:

The Dragon Story – Full HD from Kreativity on Vimeo.

Download the resources and discussion PDF that goes with the video here.

#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.

Tips, tools & skills, Toward better care

15 helpful hints to prevent agitation in people living with alzheimer disease and related dementias

I believe in calling a spade a spade, and in giving kudos if and when they’re due. Lately, I’ve been finding a lot of solid, practical and person-centered care tips, tools, and strategies on the Alzheimer Societies’ sites in Canada and the United Kingdom, as well as the Alzheimer’s Association site in the USA, which is where I sourced the list below. The fact that these organisations are upping their games with good information is a great thing because these organisations and their sites are often the first places new care partners go to find information.

Here’s the list of 15 ways to help prevent agitation:

A) Create a calm environment 

1 ) remove stressors, triggers or danger
2 ) move person to a safer or quieter place
3 ) change expectations
4 ) offer security object, rest or privacy
5 ) limit caffeine use
6 ) provide opportunity for exercise
7 ) develop soothing rituals
8 ) use gentle reminders

B) Avoid environmental triggers

9 ) reduce noise
10 ) lower glare
11 ) make “insecure” spaces secure
12 ) get rid of background distractions (TV, loud radio, too much talking)

c) Monitor personal comfort

13 ) check for pain, hunger, thirst, constipation, full bladder, fatigue, infections, and skin irritation
14 ) ensure a comfortable temperature
15 ) be sensitive to fears, misperceived threats, and frustration with expressing what is wanted

I’ve also put together a lengthier and more detailed list of potential sources of discomfort that many find helpful, as well as a list of 20 questions to help prevent aggression, and free 50-minute webinar with tips based on my own experience.

#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);

Image Copyright: aletia / 123RF Stock Photo

Hope, Joy, Life & Living, Videos

baby buddy: you get peed on, you get puked on, who wouldn’t want to do it?

Mom ADORED babies. This would have been the perfect “activity” to help her feel joyful, give meaning to her life and help others at the same time while she lived in the early and mid “stages” of Alzheimer disease.

When I watched the video, it reminded me of this one in which 10-day-old wyatt met his great-grandmother for the first time for the first time (precious!).

Like combining childcare and eldercare, I think this is wonderful win/win idea that could really work and help give PLWD a sense of meaning and purpose if those things might be missing from their lives.

Your thoughts?

Furthermore, this is the way (with love, compassion, tenderness and humanity) we should treat elders living with dementia in long term care instead of like this.

#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, Inspiration, Life & Living, Videos

how not to kill dementia dancers

Sir Ken Robinson’s wonderful 2006 TED talk asks a simple question: “Do schools kill creativity?“

When I re-watched it for the umpteenth time, I was struck by one particular story he told about a little girl and how a parallel might be drawn between the way we label behaviours we find challenging in people who live with dementia, and the way we label behaviour we find challenging in others, particularly children.

Instead of physically and chemically restraining people like my mom, who wanted to keep going despite living with Alzheimer disease, we need to find ways to help them “dance,” whatever dancing means to them. If and when we don’t, we are killing them just as surely as we are killing the creativity of our children in educational systems that put them in boxes, make them sit all day, stifle their curiosity and force them to obey senseless rules.

Systems should be made to fit people. Not the other way around. Here’s the powerful and inspiring three-minute story of the little girl (the full talk is below the short clip):

 

https://myalzheimersstory.com/2016/06/22/10-smart-dance-tips-for-dementia-care-partners/

https://myalzheimersstory.com/2015/11/23/when-mind-and-body-fail-look-for-the-dancer-inside-2/

https://myalzheimersstory.com/2016/03/05/once-a-dancer/

#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: danr13 / 123RF Stock Photo

Care Partnering, Inspiration, Life & Living, Videos

4 “easy” steps to embracing empathy

Empathy and sympathy are two different things entirely, says author and researcher Brené Brown. The former fuels connection and the latter drives disconnection according to Brown.

“Empathy is feeling with people,” she says.

In the short, charming and spot-on video below, Brown cites nursing scholar Theresa Wiseman‘s four things we must do to empathize:

  1. See another’s perspective
  2. Avoid judgement
  3. Recognize emotion
  4. Communicate all of the above

I’m sharing this because empathy is a cornerstone of relationship-centered dementia care. We need to get into the space and reality of our person who lives with dementia, and to empathize with him or her in order to provide the kind of care she or he needs and deserves. Easier said than done, I know!

Have a look and listen:

#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: elen1 / 123RF Stock Photo

Advocacy, Antipsychotic drugs, Information

10 things that seemed like good ideas at the time

Lots of stuff we’re told is good for us actually isn’t.

That’s why I trust my own experience, my own eyes and my own ears, and I take the advice of “experts” and advertisers with a truckload of salt. And I sure as hell don’t trust people who stand to make huge profits from products they push at the expense of my health, welfare and well-being.

Medication has its place and I’m thankful for drugs that alleviate pain, help cure diseases, and prolong life (in a good way), etc. But I don’t believe in inappropriately marketing and inappropriately prescribing drugs that make things worse instead of better. I’ve also learned it’s unwise to believe everything everybody tells me, especially when they have lots to gain from lying.

This slideshow requires JavaScript.

#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.

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

Life & Living, Love, Poetry

so what if santa has dementia? he’s still the same ole claus he used to be

Unbeknownst to most of the world, Santa was diagnosed some time ago with Alzheimer’s disease. Luckily, he has a great support system at the North Pole, and Mrs. Claus knows exactly what to do to keep him engaged with life, as well as to ensure that he’s healthy and happy. We could all benefit by following Mrs. Claus’s good example.

Whatever we believe is real.

santa claus lives with dementia

by punkie 2017

Listen here:

Read here:

“alzheimer’s it is”
the doc says to the clauses
“no cure in sight,
and no clue to the causes

“write your will, take a pill,
give in to your fate
there’s nothing to do
with this disease we all hate”

but the clauses aren’t ready
to throw in the towel
they decide to live on
even if cheek by jowl

the mrs. she knows
it brings santa great joy
to distribute fun gifts
to the world’s girls and boys

she assembles the team
the deer and the elves
“we need to help Santa,
he’s not feeling himself”

“he worries dementia
may cause him to lose
the man he is now —
not to mention his shoes!”

“i want to give meaning
to the life he’s now leading
you’re his friends, ’til the end
for your help i am pleading.”

mrs. clause is no fool
she knows he will change
so she learns how to care
and avoid feeling deranged

she takes deep yoga breaths
in and out, one, two, three,
she gets him to bounce
little kids on his knee

she agrees with her husband
even when he is wrong
defuses tough times
by singing him songs

she never will argue
no, that would be stupid
instead she heaps on
stuff delivered by cupid

to go with his flow
is always her goal
‘cause deep down inside
he’s still the same soul

if he gets angry,
which sometimes he does
i’m sorry,” she says
“i must be the cause.”

these simple ways
are true magic tricks
make it easy as peasy
to engage with st. nick

and the coolest thing is
that by giving more hugs
santa’s wife keeps her husband
off all those bad drugs

it allows him to function
to not go berserk
which in turn makes his wife
want to stand up and twerk

mrs claus is so grateful
she allows me to quote
the model that keeps
the clauses afloat:

these bangs are the best
way forward to glean
skills to stop me and he
from causing a scene!”

the elves and the deer
are in on the game,
their part is designed
to stop stigma and shame

though he often forgets
and becomes more confused
life’s ups and downs
keep santa amused

he works in the shop
tiny elves by his side
it helps him feel useful
and nurtures his pride

they buoy up his spirit
give esteem a big boost
stop fear and depression
finding somewhere to roost

and then on the eve
of the christian big day
rudolph the red
is in charge of the sleigh

they fly through the sky
every year without fail
dementia or not
with the wind at their tail

if the clauses can to it
ho ho so can you
make the best of the worst
by changing your view

seek blessings not curses
in life’s wildest ride
hold a hand, still your heart
let love be your guide

be like santa: believe
you have what it takes
to make every day christmas
when despair you forsake

 

©2017 Susan Macaulay. I invite you to share my poetry widely, but please do not reblog or copy and paste my poems into other social media without my permission. Thank you.

#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);

Image copyright: hasloo / 123RF Stock Photo