Tag: fun

Care Partnering, Joy, Music, Videos

mom knew hundreds of songs, but down in the valley was her go to

My Alzheimer's Story

I had never heard Mom sing Down in the Valley. Ever. Until a couple of years after she was diagnosed with Alzheimer disease. Then she (we) sang it every day, sometimes five or six times a day, until just before she died.

Mom and I must have sung Down in the Valley thousands of times between 2011, when I moved back to Canada to be her care partner, and 2016, when she said goodbye to this world. During that time I learned so much from our musical sessions together.

“Why don’t we sing a song Mom?” I would say when things were getting a bit out of hand, when either she or I was feeling stressed or angry or sad, or when I had run out of other things to do to keep us both occupied.

“Okay,” she would respond.

“What do want to sing Mom?” I always asked before I made any suggestions of my own. It gave her a modicum of control as her world was spinning out of it.

“How about Down in the Valley?” She would almost always reply — It was her go to.

“Okay Mom. You start.”

“Down in the valley, valley so low,” the words came out of her mouth sweet and true. “Hang your head over, hear the wind blow. Roses love sunshine, violets live dew, angels in heaven, know I love you.”

Mom had a beautiful voice. She knew all the words. I fell short on both counts, at least at the beginning. I learned the words eventually–to Down in the Valley and dozens of other tunes– but my voice would never match hers. Ever.

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down in the valley: one of our gazillion favourites

5 things I never knew until I sang with my alzheimer mom

Hope, Love, Toward better care

1 easy way you can help change the face of dementia care worldwide

My Alzheimer's Story
Teacher and students at Drake Medox College/Drake Medox Health Solutions in Surrey B.C. pose with a poster of “let me shine” hanging on one of their classroom walls

“I LOVE your newsletter!” the email began. “I often share your stories with our students and instructors. I actually printed, laminated and posted your ‘let me shine’ dementia rhyme in all our classrooms and labs.”

The message was from Angela Del Bianco, the Marketing & Program Development Manager at Drake Medox College/Drake Medox Health Solutions in Surrey B.C., Canada. It’s the kind of message that makes my heart sing because it tells me my advocacy is having a worldwide impact by helping to change the perceptions of those who work in dementia care.

I sent an email back to Del Bianco asking for more details; she responded immediately:

“We have nineteen classes and approximately three hundred and twenty-five students in progress at any given time at our two campuses. These students are supported by twenty-two instructors (classroom, clinical and English as a Second Language support staff as English is not the first language of many of our students).

We offer Health Care Assistant (HCA), Activity Assistant and Community Support Worker Programs, but HCAs represent more than 80 percent of our student body: we graduate more than five hundred and twenty-five HCAs a year!”

That means a lot of future care workers will be exposed to the reframing and redefining messaged contained in my ‘let me shine’ poem because Del Bianco took the initiative and posted it in her college’s classrooms.

Better yet, this isn’t the first time the poem has been used in this way.

Bing Boettner, a registered nurse who teaches health science students at a technical school in Maryville, Montana, contacted me in April 2017, and asked me to do a couple of webinars for her students via Skype. Boettner had also printed and laminated “let me shine,” and hung it up in her classroom. I got a big surprise when she showed the poster to me when we Skyped – it was about six feet high!

A couple of weeks after the sessions with Boettner’s students, I was in Ottawa, Ontario, doing a series of workshop for caregivers. I included a copy of “let me shine,” in the participant handouts. One woman in the class said: “I have that poem pinned on my wall. Someone gave it to me.” I was thrilled. ” I wrote it,” I said. She was stunned. She hadn’t known where it came from, or who had written it. It felt wonderful to learn that my good messages are spreading, even when I don’t always know about it. Every little bit counts.

So what can you do to help change the face of dementia care for the better?

Easy. You can download, copy, and distribute posters of “let me shine” as widely as possible. Here are some ideas of where you might post the poem:

  • classrooms and staff rooms in technical schools, colleges, nursing schools, medical schools, etc. where future healthcare workers are learning and being trained
  • In care facility staff rooms, nurses stations, activity rooms, kitchens, dining areas, etc.
  • above your loved one’s bed and/or in their bathroom

You could also:

  • hand it out in care worker and caregiver seminars, sharing circles, meetings, etc.
  • include it in healthcare and dementia care conference packages
  • email the link to the poem or to this post to your friends and followers
  • include the link to the poem or to this post in your next newsletter
  • share it and discuss it at your next staff meeting
  • put it on your blog
  • read it anywhere and everywhere!

Or maybe you have some other ideas – I would love to hear them! I would also love it if you sent me a pic of what you do to spread “let me shine” (with a few details) so I can post your story on MyAlzheimersStory.com and the MAS Facebook page.

Together we can make a difference.

#wecancarebetter

Note: I had to crop the picture of the Drake Medox College/Drake Medox Health Solutions students and teacher to fit my banner format. Here’s the full pic Angela Del Bianco sent me:

https://myalzheimersstory.com/2016/07/24/let-me-shine-a-dementia-rhyme-to-open-minds/

https://myalzheimersstory.com/2018/09/21/3-excerpts-from-the-best-article-on-dementia-i-have-ever-read-and-a-link-to-the-full-meal-deal/

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Hope, Joy, Love, Toward better care

7 kinds of therapy i don’t want when i’m living with alzheimer disease

My Alzheimer's Story

When I am living with Alzheimer disease, which I expect I will be one day, I want to do the things I love to  do for as long as possible, and to be offered the opportunity to try new, engaging and enriching activities that will fill the last chapter of my life with joy and happiness. I don’t wish to be labelled or “therapized,” or treated like someone who is less than human, or worse like an object with not more value than a chair.

So please, future care partners, help me to live until I die: interact with me, support me, invite me to grow and learn and to engage life with purpose and meaning and please, please, please don’t stigmatize it by calling it “therapy.” If things keep on as they are, people who live with dementia will soon be getting “food therapy” every time they have a meal! And “sleep therapy” when they go to bed at night or have an afternoon nap. It’s completely ridiculous.

1) Pet therapy

I adored my little cat Pia Roma, who had lived with Mom before she became my treasured housemate. The pic above is of Pia and I having a cuddle on the morning of the day she died (June 29, 2018). I hope I will have animal companions of some sort near me until I too say goodbye to this place. Taking care of and loving an animal gives people of all ages purpose and joy. Purpose and joy are important. I love to have animals around me; I see no reason to label being with animals “pet therapy” if and when I’m living with dementia.

2) Music therapy

They say music is the universal language. It connects people, speaks to them in special ways, and touches them at their core. I experienced its powerful effects first hand with Mom. Through music, I learned many things and found much joy. While I think I will love to continue to experience music in many forms when I live with dementia, I don’t see why enjoying music should be described as “therapy” simply because my brain is changing.

3) Art therapy

I create art. I’m not a painter or a sculptor or a potter. At least not yet. But I have created and I continue to create multimedia works that bring me and others joy and happiness. I hope that if I ever come to live with dementia that I’m able to continue with the artistic activities I do now. Why should those same activities be labeled “therapy” if I live with dementia? The word therapy has implications I don’t like and I’ll thank you kindly not to use it when I’m living with dementia.

4) Doll therapy

I never played with dolls. Never had children. Not interested, no thanks. But if I did love babies, and playing with dolls as a person living with dementia made me feel young and wonderful and happy, why would it have to be called “therapy?” Why not just say every human being needs to feel connection, love, purpose and meaning and enjoying dolls, or stuffed animals or whatever, are other ways of achieving that?

5) Poetry therapy

i love to write and make words rhyme,

in fact I do it all the time!

so stop the stigma if you please,

just because my brain’s diseased.

It’s writing. It’s poetry. It doesn’t suddenly become “therapy” because one has a changing brain.

6) Exercise therapy

Seriously? Exercise therapy? With a few exceptions, exercise is just plain good for all of us, most of the time, no matter what condition we’re in.

7) Gardening therapy

Ummm. Please. See 6) above.

Come to think of it, when I’m living with dementia, don’t give me any kind of therapy at all. Support me in doing the things I’ve always enjoyed and in exploring new ways of creating purpose and joy in my life. Yes, by all means do that. But don’t call it “therapy,” because I don’t want to be stigmatized and have labels applied to who I am and what I do when I live with dementia because I will be the person I have always been only in a new, different and equally beautiful way.

https://myalzheimersstory.com/2016/07/24/let-me-shine-a-dementia-rhyme-to-open-minds/

https://myalzheimersstory.com/2016/01/21/50-names-not-to-call-alzheimers-me/

https://myalzheimersstory.com/2015/03/27/13-needs-we-share-with-people-who-have-dementia/

https://myalzheimersstory.com/2014/06/16/5-things-i-never-knew-until-i-sang-with-my-alzheimers-mom/

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Hope, Joy, Love, Toward better care

7 things you can do now to prepare for being a dementia care partner one day

My Alzheimer's Story

Most family members who become dementia care partners do so out of necessity rather than choice. They are thrown into the deep end with no training, little knowledge and few skills.

And, as we live longer, the number of people who are drafted into care partnering roles is only going to increase because age is the biggest risk factor for developing Alzheimer disease and other forms of dementia.

How can one prepare oneself to potentially become a dementia care partner?

I don’t think there’s a formula that works for everyone because everyone’s life experience is different (although there are similarities and commonalities of course!). However, I think the best preparation in all cases is to practice good life skills and habits that will serve us no matter what challenges we face. When we practice these skills, we are better equipped to live more joyful lives whether that includes being a dementia care partner or not.

Below are seven life skills I think are especially important for dementia care partners, and which may help anyone to prepare for that role, as well as to live a better life overall.

Practice:

  1. Having an open mind
  2. Having an open heart
  3. Looking for opportunities to create joy and happiness
  4. Experiencing your feelings
  5. Finding ways to reframe “negative situations”
  6. Focussing on capacity (home in on what CAN be done, not on what can’t)
  7. Grieving and letting go of losses

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

https://myalzheimersstory.com/2017/10/12/15-essential-qualities-dementia-care-partners-need-to-survive-2/

https://myalzheimersstory.com/2018/01/14/20-opportunities-being-a-dementia-care-partner-might-offer-you/

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Hope, Joy, Love, Toward better care

7 ways to bring joy to your dying mom at christmas

My Alzheimer's Story

December 17, 2018: This is the second time I’ve written about Gloria Gallagher and her daughter BJ. The first article is here. Gloria has lived with Alzheimer’s disease for more than a decade. She’s paralyzed from the neck down, and so she cannot move her arms or legs. She can’t get out of bed, and has a hard time articulating what she wants to say. She’s been “this close” to death numerous times. And yet, she and her daughter, author BJ Gallagher, make the most of their visits together.

You too can bring Christmas joy to the life of someone living with dementia by emulating BJ’s techniques. Here are seven ideas:

  1.  deck her out in festive finery
  2.  just be with him
  3.  listen
  4.  agree (hear all the creative ways BJ does this in the video below)
  5.  be positive
  6.  love, love, love him
  7.  give her a jar full of stars

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Advocacy, Real life, Toward better care

puppies & people living with dementia: it’s not rocket science (p.s.: forget the pillows — leave them with the real thing!)

My Alzheimer's Story

We know what works — this little visit with puppies got 13 million views in five days on Facebook.

So why the hell don’t we just do it? Why don’t we have puppies and kittens and plants and flowers and music and joyful stuff in long-term care facilities and in our own homes instead of TVs and geri-chairs?

Mom got more joy from her kitty cat Pia Roma (her “best friend”) than she did from anything. It’s so simple…

And yep, it’s a great idea and all, but Is it just me or do the PLWD look justifiably confused when they give them pillows as replacements for the real puppies? It’s like, “Hey! wait a minute, you just gave me a puppy and now you’re going to take it away and leave me with a pillow? Huh?”

Sure it’s a nice gesture to bring along a puppy, but maybe the rest of it needs a bit of rethinking #justsaying Or maybe I’m wrong…What do YOU think?

the paws that refreshes

a magical musical alzheimer gift

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

bj and her mom gloria look for blessings

My Alzheimer's Story

November 21, 2018: Gloria Gallagher has lived with Alzheimer’s disease for more than a decade. She’s paralyzed from the neck down, and so she cannot move her arms or legs. She can’t get out of bed, and has a hard time articulating what she wants to say. She’s been “this close” to death numerous times. And yet, she and her daughter, author BJ Gallagher, often laugh, joke and have a great time during their visits.

“She’s just so dang cute I can hardly stand it sometimes. She just bursts my heart wide open,” BJ says. “Sometimes we have so much fun together!”

How can this be? How can Gloria an BJ be having fun? How can they be joyful in the midst of disease and debilitation? Essentially, it’s about attitude.

“Whatever life hands us, we just gotta make the best of it,” BJ comments to FB friends. “When Mom was diagnosed with Alzheimer’s 10 or 12 years ago, we experienced the initial shock and dismay. But once we got past the ‘oh shit’ reaction, we moved on to, ‘OK, this is happening so we’ll just deal with it as it unfolds.’ I had heard the horror stories about Alzheimer’s, so I thought the disease would wipe out my mother’s personality and turn her into a vegetable. But that hasn’t happened. She is completely paralyzed but inside that old frozen wrinkled body, Gloria is still alive and well. Lucky me. Lucky her. Everyone’s journey with Alzheimer’s is different – and part of it is how the patient and the family deal with it. Mom and I, we just look for the blessings.”

You said it BJ!

Like Gloria and BJ, Mom and I looked for the blessings, and we found many among the challenges and tears. I hope you will too ❤

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

“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/2016/09/06/5-good-things-alzheimers-brought-more-of-into-my-life/

https://myalzheimersstory.com/2016/12/29/blessings-and-curses/

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Life & Living, Memories, Music, Videos

alex george fiddles “good-to-go” message from mom & universe

My Alzheimer's Story

The universe’s messengers come in all shapes, sizes, colours, forms, genders, and ages. They may be living beings, forces of nature, or inanimate objects. They could be deaf, dumb and blind, ten feet tall and/or incredibly small. Some dance. Some are as vast, and deep as the ocean. Others twinkle like the night sky.

I stumbled upon one playing the fiddle on his parents’ porch in Almonte, Ontario, on June 16, 2018, at about 4:15 p.m.

Actually, that’s not quite true. One rarely “stumbles upon” a messenger from the universe, although it may indeed feel random to either or both the messenger and the “messengee” if their intuition isn’t fully switched on. But the universe’s intentions are clear, and its delivery is unmistakably deliberate and obvious when one is paying attention, which I was, as usual.

I had planned to attend a prior PorchFest de Mississippi Mills session at 3 p.m., but I lay down for a 10-minute nap and overslept. I awoke just in time to make it to 17-year-old Alexander George’s performance, one of several taking place around town at 4 p.m., but I was delayed when I stopped to talk to a stranger along the way to Alex’s gig. He was playing on the porch of his family home, which, coincidentally, is five doors down and across the street from the little house I had just purchased two days before.

As I strolled past my new place, I wondered if I had made the right decision. Two weeks later, I would abandon Quebec’s Eastern Townships, where I had spent my childhood, and which had always been “home” no matter where I travelled in the world. Mom had lived in the big red brick house on the hill on the Georgeville Road for 40 years, and had died not far from it in August 2016. Will she know where to find me after I move? I was full of grief at the prospect of leaving her, even though she was already gone. I tried hard to release my sadness. Enjoy the afternoon. Don’t spoil it with dark thoughts. My positive self-talk produced mixed results.

Two young girls were selling muffins and lemonade beside the Georges’ house. I bought a drink, and gave them a .50-cent tip. Their eyes grew wide. “Thanks!” they said in unison. I meandered down onto the sloping lawn where people were gathered in small groups under the shade of trees and large bushes to take the edge off the heat. I sat down alone on the grass. Alex began to play what must have been the third or fourth song in his set. The Tennessee Waltz. Tears sprang to my eyes, and streamed down my cheeks. Had they known in advance they would be called into action? Luckily, a lady sitting not too far away had tissues.

I first heard The Tennessee Waltz when Eric played it for Mom one afternoon in early 2014. I fell in love with the tune on the spot. Mom knew all the words of course, and I learned them quickly enough. How many times had we sung it together? Dozens. She beautifully, and me badly. It was one of our favourites.

Two-thirds of the way through Alex’s captivating interpretation, I somehow found the presence of mind to pull out my iPhone and push record.

Here’s a full version from Alex’s first (and undoubtedly not his last!) album, just as he played it on the porch accompanied by piano:

More about the hugely talented Alex George here.

https://myalzheimersstory.com/2018/01/25/the-beautiful-tennessee-waltz/

https://myalzheimersstory.com/2016/11/27/do-you-see-what-i-see/

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Joy, Life & Living, Memories

7 strategies to create harmony in dementialand

My Alzheimer's Story

Dr. Elaine Eshbaugh writes a warm-hearted, funny and insightful blog Welcome to Dementialand, which I’ve quoted before.

The common sense advice above is taken from her post “Time Management in Dementialand;” it caused me to reflect on strategies and tools we may use as care partners to engage our care partners who live with dementia, stay connected and reduce our own stress.

1 ) Take a walk

There’s no downside and multiple upsides to exercise, particularly walking. It’s a great stress reliever for anyone, living with dementia or not; it helps maintain health, gets you out of the home and into a different space. More activities here.

2 ) Go with the flow

Those with severe memory loss live in the moment – they may not recall the recent past or be able to anticipate what comes next. The environment and people around them must draw them in and simplify their interactions with the world. More about going with the flow here.

3 ) Don’t argue or correct

I spent years arguing with my mother and exacerbating no-win situations before I became aware that debate only created more anger and angst. By arguing, I became the cause of her “bad behaviour.” It wasn’t the disease, it was me; it wasn’t her fault, it was mine. More on that here.

4 ) Listen fully

Listen with more than your ears. Use your eyes, your heart and your mind. Learn to look behind behaviour to discover what a person with dementia is trying to communicate by their actions. Listen to their behaviour–it may say a lot more than their words ever will. More on this here.

5 ) Be quiet

I spent countless hours with my mother holding hands, watching birds at a feeder, looking out at a field, simply being together in silence. Quiet times can be as engaging as activity, and silence provides space for possibility if you let it. Remember the “pregnant pause?” More on this here.

6) Put yourself in their shoes

There’s nothing like seeing things from the other person’s perspective to increase understanding and connection. There are tools to help with that here and here.

7) If something doesn’t work, try something else

It’s useful to have multiple strategies and tools at the ready to manage different sets of circumstances and events, any one of which might work or not at any given time. For example, music might help someone to feel calm today, but baking cookies might do the trick tomorrow. Music might be effective again the day after tomorrow and the following day, but not the day following that. Flexibility and creativity are important.

Read Dr. Eshbaugh’s post Time Management in Dementialand here.

https://myalzheimersstory.com/2017/11/13/30-tips-to-help-reduce-anxiety-in-dementia-care/

https://myalzheimersstory.com/2016/01/10/10-things-to-remember-when-you-interact-with-people-who-forget/

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Activities, Advocacy, Hope, Humour, Life & Living, Videos

how old is old?

My Alzheimer's Story

 I love the quote from the “old man” towards the end of the video below. He says:

 “When people start stopping, that’s when they start getting old.”

I think the same principle applies to people who live with dementia.  I also believe that by “getting to know” people who live with dementia, and understanding who they really are, we can change the negative narrative associated with Alzheimer’s disease and related dementias (ADRD) as well as those who live with diseases that cause dementia.

We need to think differently about what it means to live with ADRD, just like the young people in the video change their thinking about what “old” is by experiencing what “old” people can do, and also by learning from them.



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