doing the right thing when everything seems wrong

5

“I’m going to stay here and care for her for a year because I know she wants to be in her own home as long as possible,” I said to my friend Kate shortly after I arrived back in Canada in October 2011. “After that she won’t know who I am anymore. She’ll go into a nursing home and it won’t matter if I’m around or not. Then I’ll go somewhere else and restart my life.”

“That’s crazy,” Kate said, “You won’t leave.”

“No it’s not, and yes I will,” I was unequivocal. But Kate was right and I was wrong. It was crazy; it got crazier; and I’m still here even though Mom’s gone.

My misguided beliefs about Alzheimer disease was based on ignorance. I learned a lot in the five years prior to Mom’s death in August 2016. I became intimately acquainted with dementia. I rode its roller coaster with Mom. I tore my hair out, cried in frustration, cracked, healed, broke into a million pieces and reassembled myself. I witnessed a beautiful friendship, experienced unconditional love, and found joy in the midst of despair. I observed, researched, listened, shared, and advocated. I got to know my mother and Alzheimer’s disease in surprising new ways. I completely changed my beliefs about dementia, those who have it, and how we should treat it and them.

I’m not alone in thinking our elder care needs to be overhauled. But change takes time, and unfortunately Mom’s ran out before my advocacy could impact her care. I did whatever I could to make the last years of her life as rich, full and joyful as they could be. That meant swimming against the tide, and getting in heaps of trouble. It pitted me against so-called “experts” operating on incorrect information and fallacious beliefs.

“I don’t believe (Mrs. Macaulay’s) present condition would allow it,” a social worker wrote in late 2013 in response to my repeated requests for weekly music therapy sessions for Mom. The social worker was 100% dead wrong. By the time I was made privy to her opinion, I had found Eric through a series of coincidences and hired him. I went ahead and did what I knew was right for Mom. Eric and I spent more than 50 magical musical hours with her. We sang hundreds of songs. We covered The Beatles, Herman’s Hermits, and Johnny Cash to name but a few.

Meanwhile, overwhelming evidence came to light demonstrating how music transforms the lives of people with Alzheimer’s disease. The wildly successful Alive Inside project shows the untold happiness music can generate in people who face cognitive difficulties. The health benefits of singing are equally proven. It’s gratifying that what I knew intuitively has been confirmed with verifiable facts on a large scale. But I’ve never felt the need for “expert” opinions, others’ evidence or research studies to prove what I can see and hear with my own eyes and ears – just like I don’t need advice from people who are ill informed. I trust my own judgment when the truth lies before me. And I don’t have a problem doing what’s right when I have been wrong.

The dramatic changes I personally observed in Mom during and after our music sessions still astound me: she was always engaged and energized by the process; she was more alert, more articulate and more aware for hours afterwards; she walked more confidently and was happier. Mom hadn’t said how she felt about the sessions, which she seemingly forgets the minute they’re over. I saw the immediate benefits, but I had no idea how profoundly she was impacted until one day, unprompted, she told me the things we did together helped her stay alive. It was crystal clear to me that she had a deep understanding of what was going on around her and how it affected her even though she sometimes appeared unaware. Perhaps it was my destiny that I should return to Canada to be Mom’s care partner. Maybe life brought me to where I’m meant to be. A more religious person might call it divine intervention.

How I label it really doesn’t matter. What I do with it does. I’ve learned a great deal, I’m thankful I have dismantled my erroneous beliefs, and I am committed to using my experience to help others. When a reasonable person finds irrefutable proof she’s wrong, there’s only one thing she can do: change her beliefs and #FightThe GoodFight. The right thing. That’s the thing I must do. It’s the thing we must all do.

A version of this post was originally published in January 2015; Mom died on August 17, 2016.

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5 Comments

  1. Music always seemed to have an effect on my mother, too. I think we sometimes know what is best just by instinct (or divine intervention) and I do believe you were meant to be right where you are-just when you are (and were) there.
    Life is such a strange, sad, journey sometimes. However, even in the midst of sadness and despair I think we find those moments of hope and joy that propel us forward.
    You did a good job, my friend. xo Diana

    • Thanks Diana. Yes, I think we do sometimes know by instinct, and to be honest, many things are just a matter of common sense, but people seem ti get stuck in old ways and unhelpful patterns from which they refuse to deviate. Yes, life is strange and sad and joyful, and we’re all in the same rocky boat 🙂

  2. What a lovely tribute to an open and loving heart (yours and your mother’s!). It is too bad that the others around you during her last year’s weren’t able to let go of the narrow minded rules that boxed in their opinions. I hope you find a way to get the word out to others navigating their way through the Alzheimer’s waters.

    • Thank you Heidi <3

      Re: narrowminded rules that boxed in their opinions," yes, it's a real shame that some people are so caught up in their need for power and control and/or committed to doing things the way that they've always been done and/or just plain greedy, that they are blinded to new realities. I continue to work hard at changing mindsets, as do other pioneers around the world, and I'm confident that things will change eventually.

  3. A version of this post was published in January 2015. These were the comments then:

    AmazingSusan In reply to Beth Reinert.
    Yipppeee! I’m gonna try that too – great idea, Beth. I saw those little speakers, now just a matter of picking one up. Eric and I are building a playlist, will share and we can build on it…

    Here’s Mom doing Over the Rainbow last year:

    And this is OMG SO wonderful you will cry for sure:

    AmazingSusan In reply to Diane Brooks.
    Diane, thanks for sharing your experience and what you have done – those are great ideas I also didn’t have a clue what I was doing when I first started and I have learned SO much in the last four years. The biggest overarching problem is inertia – people just naturally tend to do things the way they’ve always been done because it’s easier or they don’t have to think or… to be honest I’m not sure all the reasons because I’m just not that kind of person!

    I think you’re also right about awareness growing – we have to plant more seeds and keep watering like crazy!

    XOX from Canada

    AmazingSusan In reply to Cynthia.
    Cynthia – yep, someone you love is a pretty powerful motivator! And I believe we have to keep advocating for others to honour their experience once they’re gone. It’s so clear to me that change is desperately needed!

    Cynthia In reply to Diane Brooks.
    Diane, bless you! you are doing exactly what more of us need to do – advocate loudly for our loved ones. It is frustrating that those in the position to run these facilities are not as well versed at times as we are but then we do have a strong motivator to learn all we can – someone we love.

    Keep on keeping on!
    All my best wishes – Cynthia, Lockport, NY

    Diane Brooks

    In the mother’s home each resident has their own room and they are able to have whatever they want in it. Now Mum is sometimes awake at night and I have lots of stickers and pictures all over the walls as well as mobiles hanging from the ceiling over her bed. I know she likes them as she often reaches out to them.

    Visitors are also made to feel welcome and one son used to come in every night at tea time. He would bring in his guitar and sing to everyone. I videoed him one night on the iPad and would play it to a few of them when we were sitting around a table, they loved it. I also got one of the caregivers to bring in her guitar and we had a jam season for about an hour and a half – more videos to share!

    I argued, and won, to get a TV screen in the lounge on a wall. It has a DVD player. I downloaded the Christmas lights YouTube videos to pla, they were a hit.

    I totally agree with what you say about how people don’t know much about Alzheimer’s and I have had to ‘go in the ring’ for both Mum and John. However having said that awareness is growing.

    I admit I had little idea and I have had to learn fast and I am proud to say that I took on the whole DHB here over what they wanted to do with Mum. I researched thoroughly and they had no answers and had to back down. Not too good when these are the people who are making the decisions.

    It may sound as though I am an argumentive person but I am not usually but I am determined that Mum and John will have the best quality of life that is possible.

    Thanks so much

    Di Brooks

    Beth Reinert
    caregiversunite.org

    My son gave me a subscription to Spotify for Christmas. I am able to search for any music we want to listen to. I use my smartphone and small blue tooth speaker to transform the nursing home room into memory lane. Songs Momma seems to tune into are old movie favorites like “When You Wish Upon a Star” and “Somewhere Over the Rainbow.” The possibilities are endless.

    Unapprove | Reply | Quick Edit | Edit | History | Spam | Trash
    AmazingSusan
    MyAlzheimersStory.com
    susan@amazingwomenrock.com
    174.92.176.145 In reply to Elise.
    I miss you Elise!

    I don’t remember that time, but isn’t it interesting that you do? It’s the small things, the generous things, the things that make us feel good that we remember about people. Small acts of kindness ripple through time and around the world!

    Thanks for sharing that story about Mom – you can rest assured I’ll remember it now

    AmazingSusan In reply to Edith.
    Edith, so sorry again for the loss of your Dad

    I think it’s really hard for people to stand up and advocate against “experts,” I think we forget that they are human just like the rest of us and are just as likely to make mistakes, or be misinformed, or whatever. We are taught to believe in professionals and what they say, but what they say is not always right.

    In fact, statistics say that doctors misdiagnose 10 to 15% of the time, perhaps even more. Here’s an interesting story about one such misdiagnosis.

    As for the fact that your father would never have been aware of the music, my experience shows that to be completely false. The power of music in engaging people who have dementia has been proven under the auspices of the Music and Memory Project and documented in the film Alive Inside which you can watch on Netflix or buy on DVD from Amazon.

    You did the best you could with your Dad, and I’m sure he was aware of your love <3

    Edith

    my father always loved music and when I asked to bring a radio to his room, he as you know also had alzheimer, they said no that it would disturbed the other person in his room and he wouldn’t be aware of it anyway. Wish I had been as persistent as you. It might have made his time hospitalized more bearable and humane.

    Elise

    I was so happy to hear both your voices Susan and so touched by your own emotions.
    I always think of your mom with lots of affection and thanks. Remember the first time she and I met? it was at the beach in Abu Dhabi, when i fell on the stairs carrying the boys and their beach toys and she was so caring and helpful.
    big kiss to both of you and Happy 2015.

    AmazingSusan In reply to Heidi Sloss.
    that’s what keeps me going…. <3

    AmazingSusan In reply to Cynthia.
    Thanks Cynthia

    Yes, Mom is a character, and I’m lucky to have this time with her even though it’s challenging and stressful as well.

    You will love Alive Inside – I’ve watched it several times on Netflix already! Happy new year to you too. I look forward to hearing from you again, hugs right back at you, Susan

    AmazingSusan In reply to kkt.
    Yes kkt, you’re right! Music therapy, one-on-one care, and “little” extras are expensive and beyond the reach of many people. I’m extremely fortunate, and so is Mom, that I have the resources to be able to give her the gift of healing music sessions.

    However, maybe there are some more affordable alternatives, at least for music. Old CDs could be put on an MP3 player for example, it doesn’t have to be an iPod, so the dementia person could listen to music with headphones. There are lots of music only stations on the radio, or perhaps music students might be willing to play on a volunteer basis…

    Besides music, I think it’s also important to keep people engaged and stimulated and feeling like they are making a meaningful contribution…

    I’m sorry for all the losses you have suffered and I thank you for reading and commenting.

    Heidi Sloss

    While your knowledge might have come late for you and your mom, by sharing it online you are helping so many others!

    Cynthia

    Susan, so appreciate this post and all your posts. Your mom seems like a love. blessings sent for beautiful time with her. amazing how ignorant the care providers are at times – Alive Inside is magic. Just ordered the DVD and can’t wait to watch all of it. Planning to put together an ipod with music my parents will enjoy shortly. All the best wishes for a good 2015 (whatever form it takes). Hugs
    Cynthia

    AmazingSusan In reply to Monica.
    This one and many others Monica… I feel so fortunate <3

    When I first started caring for Mom full-time in 2011, we did a puzzle together. The same one over and over again – a map of the world. I searched high and low for large-piece puzzles like the ones you offer, but couldn't find any.

    It's too late for Mom and I, but maybe not for others. I went to your site and saw your products and think they're great.

    Here's the link for others who may be searching for large-piece jigsaw puzzles and other ways to engage their dementia people: MindStart.com

    kkt

    I agree with you 100% regarding music therapy. Unfortunately many of us can not afford something like this. My husband was diagnosed at 57. Lost his job and we subsequently lost a lot more besides income.

    Monica

    So glad you found this moment of joy with your mom. So very special.

    AmazingSusan In reply to Robin.
    Wow Robin – that’s great! Can you share the name of the facility, and where it is?

    Robin

    Music does make such a difference!
    My mom’s memory care/assisted living facility has a happy hour every day at 4pm. Someone comes in to play the piano and sing. It doesn’t cheer my mom up every time, but most of the time she’s sung along with at least one song during the hour. It’s wonderful.

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