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):
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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.
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:
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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)
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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.
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.
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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):
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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:
See another’s perspective
Avoid judgement
Recognize emotion
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:
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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.
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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.
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.
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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
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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 
My Alzheimer's Story 