Category: Joy

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

Care Partnering, Hope, Inspiration, Joy, Love

5 powerful dementia care lessons i learned being my mom’s care partner

My Alzheimer's Story

Being my mother’s primary care partner in various ways for ten years was one of the hardest things I’ve ever done. It was ultimately also one of the most rewarding in that it provided me with countless learning opportunities. I’ve blogged before about the joys, the difficult emotions and the lessons I and other dementia care partners have learned; here are five more:

1 ) People are people, not furniture

A changing brain does not suddenly make someone less than human, less what they were before their brain started to change, or less deserving than anyone else. People are people, no matter the condition of their brain, or their body. They have rights, needs and wants, just like the rest of us do. Recognizing and fulfilling those rights, needs and wants are societal and communal responsibilities.

2 ) Stigma destroys the stigmatized

Stigma can be more destructive and devastating to a person’s well being than a terminal illness. Stigma causes many people who live with dementia and the people who care for them to become isolated, sometimes even shunned by family and friends. This isolation is often more damaging to people who live with dementia and their care partners than the condition itself. Changing the way we see dementia and the people who live with it is one of the most powerful ways we can positively impact the well being of those who live with the condition.

3 ) Life is challenging

The challenges we face in life provide opportunities for us to learn, grow and become better people. The challenges of living with dementia and/or being the care partner to someone who lives with dementia are like other life challenges in the sense that they also provide opportunities for us to learn, grow and become the best we can be. It’s up to us to find the opportunities in the challenges we face.

4 ) We are not dead until we die

This seems obvious. Nevertheless, others treat many people who live with dementia as if they are already gone. I believe that treating someone as if they are not here when they still are increases the chances that they will decline at a faster rate. People need attention (via words, deeds and touch) to know they are loved and appreciated. Treating people with love, compassion, understanding and tender care will improve their well-being and boost their ability to thrive, even as they near the end of life.

5 ) Not needing to be recognized increases the chances you will be

When friends and family let go of the need to be recognized by a loved one who lives with dementia, I believe the chances that the person living with dementia will recognize them increases. My theory is unproven and based on my own experience, but I feel strongly that it’s true. When we let go of the need to be recognized, we become more relaxed, more loving, and more open to possibility, all of which impacts those around in a positive way and creates an environment in which positive interactions are more likely to occur.

What lessons have you learned?

top 15 things dementia care partners say they’ve learned

5 Uplifting Emotions Felt by Alzheimers Dementia Care Partners

5 Raw Emotions Alzheimers Dementia Caregivers Feel Every Day

17 links to the “other side” of dementia

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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

exploring autism spectrum disorder and asperger’s syndrome

My Alzheimer's Story

No, it’s not a typo. The headline does indeed read Asperger Syndrome and not Alzheimer Disease. And no, the focus of this blog is not changing — this post is a bit of an anomaly.

Lilly*, one of the first and most loyal followers of MyAlzheimersStory.com is an “Aspie.” When I recently befriended someone who, like Lilly, was diagnosed with autism spectrum disorder (ASD or Asperger’s syndrome) later in life (i.e. in his forties), I wanted to know more about the condition so I could be as supportive of my new friend as possible. Understanding is key to communication, and, as we had been collaborating on a project, I felt the more I knew about being an Aspie, the better I would be able to engage him, and the more successful our work together would be. Sadly, the project will now never see the light of day.

Remarkably, as I dug into the information, I recognized the signs of high-functioning ASD in myself, and realized I might easily be considered on the edge of the high functioning end of the spectrum.

When I shared this with Lilly on Messenger, she quickly replied:

“I too believe you could be, you have many high-functioning characteristics, and you troubleshoot with different skill set than “non neurodiverse”, from my observation over the past few years.”

I began my research by revisiting Temple Grandin‘s TED201O talk The World Needs All Kind of Minds, which I had found fascinating when it was first released, and which delivered additional insights on second viewing. Grandin lives with autism, has a doctorate, and is one of the top scientists in the humane livestock handling industry; a highly rated 2010 movie about her life, starring Clare Danes, won a Golden Globe award. She is also the co-author of this groundbreaking book: The Autistic Brain: Thinking Across the Spectrum.

Here is her 2010 TED talk:

This short CNN piece combines live interview with clips from the movie:

I found one of the best “basics” articles on the Autism Speaks Canada website. The article points out that “Asperger syndrome often remains undiagnosed until a child or adult begins to have serious difficulties in school, the workplace or their personal lives. Diagnosis tends to center primarily on difficulties with social interactions.” Other information I found suggests marital issues are frequently among the diagnosis drivers. This excellent Psychology Today article outlines a number of specific, practical strategies that may help get and/or keep a marriage with an Aspie on track. This one in particular struck me:

“Understanding that [Asperger Syndrome] is a biologically-based, neurological difference vs. a psychological mental disorder is key. Learning about [Asperger Syndrome] is important to sort through what challenges are [Asperger Syndrome] based and what are just regular marriage issues. Books, movies, articles, and seminars can help the both partners better understand [Asperger]. Due to its complex nature, learning about [Asperger Syndrome] is lifelong.”

I also found this wonderful video:

There’s a great article on Asperger and creativity here, and another interesting TED talk called Asperger’s: Not Being Afraid Anymore here, and one on meds here. More on girls with autism spectrum disorder here.

People with Alzheimer Disease are often stigmatized and seen as “less than” or deficient in some way. I wrote a poem to help change that mindset. Aspies are similarly stigmatized, and often told there’s something “wrong” with them. There’s nothing wrong with people who are different. They are simply different. So I also wrote a poem about what it might be like for an Aspie to be labeled and stigmatized, from an Aspie perspective. Not surprisingly, I seem to have a pretty good grip on that.

Doing this research was helpful and enlightening for me. I hope it is for you too.

*Not her real name.

http://amazingsusan.com/2018/12/23/see-the-me-thats-me/

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

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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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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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Care Partnering, Hope, Inspiration, Joy, Love

courageous vangaros united by love in life and death

My Alzheimer's Story
Pops and Vince Vangaro

Albert Anthony “Pops” Zangaro

April 1st, 1942 – April 10th, 2018

For fourteen years, Vince Zangaro cared for his “Pops” who lived with Alzheimer’s disease. During that time, Vince developed a deep and abiding love, compassion and a gentleness of spirit that endeared him to care partners around the world. He shared some of his feelings on Facebook the day he and his family said farewell to Pops.

Besides being the primary care partner to his father, Zangaro is a musician and the main driver behind the Alzheimer’s Music Fest. His posts and videos documenting the loving care he and his wife Amy give Pops inspired and will no doubt continue to inspire thousands.

As Zangaro and his family approached their final days together, Vince took the time to recognize Chappie Bird, his father’s feathered friend. Here’s that Facebook post as well:

See a video of the Zangaro family caring together here.

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Care Partnering, Hope, Inspiration, Joy, Love

son thanks pops’ caregiver bird at alzheimer’s end

My Alzheimer's Story

Vince Zangaro is an extraordinary person. He’s cared for his “Pops” who lives with Alzheimer’s disease for fourteen years. During that time, he has developed deep and abiding love, compassion and a gentleness of spirit that have endeared him to care partners around the world.

Besides being the primary care partner to his father, Zangaro is a musician and the main driver behind the Alzheimer’s Music Fest. His posts and videos documenting the loving care he and his wife Amy give Pops inspire thousands.

Now, Zangaro and his family are approaching their final days together, and true to form, Vince takes time to recognize Chappie Bird, his father’s feathered friend. Here’s the Facebook post:

See a video of the Zangaro family caring together here.

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Hope, Joy, Love, Music

mom’s 2012 irish medley

My Alzheimer's Story

 

The Georgeville Neighbours’ Lunch was held (probably still is) the third Thursday of every month starting in late fall and running through to early spring. Mom usually went with her long-time friend Margery, who picked Mom up on her way to the event. Margery was a good friend to Mom. Good friends often become fewer and farther between for people who live with dementia.

When our angel Caroline joined Mom and I, she and Mom went to the Neighbours’ Lunches together. Sometimes I tagged along. The March 2012 lunch was on the 15th, two days before St. Patrick’s Day. Caroline helped Mom get “dolled up” in her best festive green gear, and before they left for the lunch Mom treated us to an impromptu concert in the living room. She didn’t remember all the words to the tunes, but that didn’t matter. It was such a joyful time. Mom sang beautifully and hammed it up, Caroline laughed so hard her cheeks hurt, and I captured what I could on my iPhone. (I’m so grateful for technology.)

By March 2012, Mom had lost her driver’s licence (the spring before), and she needed someone (either Caroline or I) to be with her all the time. She hadn’t been able to cook for herself, with the exception of making toast and tea, for more than a year. Nevertheless, she was still fully engaged with life and the people around her. In the video, you’ll see a puzzle on the table in the background, it’s a big-pieces jigsaw puzzle of Canada. We must have completed that puzzle 25 times during our last year together in her own home. Even Pia, Mom’s long-haired grey cat, got in the act.

I wish I could sing like Mom did. She knew hundreds of songs, a few of which I learned from her during her last years. She and I sang up until a couple of days before she died. Music saved our sanity; it also brought us both happiness and healing. I hope you enjoy this Irish medley as much now as we did in 2012. And oh yeah, Happy St. Patrick’s Day 🙂

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