Tag: 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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Family, Life & Living, Love, Videos

an open letter and song request for country great kenny chesney on behalf of people who live with dementia and their family and friends

My Alzheimer's Story

Dear Mr. Chesney,

I love your song “While He Still Knows Who I Am,” but would you write another one please?

I am a dementia care advocate who learned about dementia through lived experience with my mom. She died in August 2016.

One of the tragedies of Alzheimer’s disease and other dementias is that many family members and friends of people who live with dementia think the person is “gone” when she or he no longer easily recognize family and friends, and so the family and friends stop visiting the person who is living with dementia. This is heartbreaking because this is when love, connection and compassion are most needed by the person who is living with dementia.

It really doesn’t matter if a person living with dementia recognizes us or not. We need to ask ourselves why we get so focused on the recognition part instead of on loving, connecting and being compassionate.

Furthermore, a great deal of healing, love and bonding may be shared by both the person living with dementia and friends and family until the very end. I can’t emphasize how life affirming and deeply spiritual this can be for all involved.

Your song is beautiful and touching, but it infers that people living with dementia are not worth seeing once they don’t recognize us. In fact, the worst thing we can do when a person living with dementia doesn’t recognize us anymore is to stop spending time with him or her. That’s why I’m writing to ask you to please produce another song that will encourage family members and friends to keep spending time with their loved ones who live with dementia, ESPECIALLY when their loved ones don’t know them anymore.

Mr. Chesney, in your audio commentary about “While He Still Knows Who I Am,” you say the song is “heavy” and as the narrator you “have a responsibility.” Please take your responsibility to heart and give us another song that will encourage family and friends to remain connected with people who live with dementia until the very end.

Thank you,

Susan Macaulay
Dementia Care Advocate

https://myalzheimersstory.com/2015/04/09/20-great-questions-to-ask-when-a-loved-one-with-dementia-doesnt-recognize-you-anymore/

http://handsoffmybrain.com/2018/10/are-you-my-mother

https://myalzheimersstory.com/2015/01/21/it-doesnt-matter-that-mom-doesnt-know-me-anymore/

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Family, Life & Living, Love, Videos

while he still knows who i am is beautiful and heart wrenching, but does it send the right message about love and connection?

My Alzheimer's Story

Kenny Chesney’s song While He Still Knows Who I Am is about love, connection and re-discovering a father-son relationship. It made me cry. It may make you cry as well.

But does it send the right message about people who live with dementia, and when and how family and friends should love and connect with them? I don’t think so.

The title and lyrics infer the son is going to visit his dad while the father still knows who the son is. But what happens when father no longer recognizes son? Will the son then not go to visit? That’s the implication.

I was so saddened by the inference that I wrote an open letter to Kenny Chesney asking him to write another song — one that encourages friends and family members to visit people with dementia especially when those people don’t recognize them anymore.

I wonder if he will.

https://myalzheimersstory.com/2015/04/09/20-great-questions-to-ask-when-a-loved-one-with-dementia-doesnt-recognize-you-anymore/

http://handsoffmybrain.com/2018/10/are-you-my-mother

https://myalzheimersstory.com/2015/01/21/it-doesnt-matter-that-mom-doesnt-know-me-anymore/

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Image copyright: dolphfyn / 123RF Stock Photo

Care Partnering, Challenges & Solutions, Toward better care

7 ways to transform dementia care grief and suffering into joy and healing

My Alzheimer's Story

Are you a dementia care partner who lives in a world full of grief, loss and suffering? What if you didn’t have to be in that dark, depressing place? What if you could transform your suffering into healing? What if you could release your feelings of grief and loss?

Moreover, what if changing your world was simply a matter of changing your perspective? Would you choose to do it?

When I chose to reframe the way I saw dementia and the people who live with it, I completely changed my experience as a care partner. Others have done the same. Here’s an excerpt from an email I received from FK, a long-time follower of MyAlzheimersStory.com:

Susan,

I really need to thank you so so much for changing my perspective on what was happening to my parents as they both lived with dementia. I have responded to your blog from time to time, mentioned that I was caring for my parents, both of whom had Alzheimer disease, and shared my experience about being with my sister when she died when your mom was approaching that point.

I had moved to [Some Little Town] from [A Big City] in 2011 when my parents began to lose their abilities to live independently, and I eventually became a full-time care partner.  For the first few years after I noticed the first signs of memory loss, I was stuck in that  intense grieving phase and could only see the losses and mourn what felt like my parents disappearing before my eyes.

But after discovering your site/blog and following it, I gradually learned to see that they were still there, still my parents, still loving and able to share many things with me.  My focus changed from mourning each new loss and grieving what lay ahead in the future, to living with them in the moment and trying to share as many moments of joy as possible.  That made a world of difference.  I was able to love them and keep sharing laughter and love until they died (my dad on April 02nd, 2017 after a long, slow decline and many false alarms; my mother very unexpectedly the very next day, April 03rd, 2017.  Thanks to you, I look back on those years as, in many ways, a happy time despite all the difficulties, frustrations, fears and tears.

I lost a legal bid to get control of my mother’s care in February 2014. Shortly thereafter, I launched MyAlzheimersStory.com. I wanted to share my journey and learnings as a care partner, and help others avert some of the challenges and pitfalls I had faced.

As I learned more about Alzheimer disease and other illnesses that cause dementia, I also came to realize we can radically change our experience of dementia and the people who live with it by reframing the way we see it and them. Helping people transform their experience from suffering to healing has become an integral part of my advocacy–one that’s working as FK’s email demonstrates!

Here are seven ways you can reframe and change your dementia care experience:

  1. Focus on what remains rather than what has been lost
  2. Look for potential rather than staying stuck in deficit
  3. See the person, not the disease
  4. Understand that people who live with dementia are still people, not “empty shells”
  5. Understand that people who live with dementia have the same needs we all have
  6. Create opportunities to experience joy and happiness
  7. Find things to laugh at instead of things to cry over

I did it. FK did it. You can do it too.

17 links to the “other side” of dementia

do you see what i see?

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, 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

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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