Category: Love

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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Advocacy, Inspiration, Life & Living, Love

imagine how much suffering could be spared!

My Alzheimer's Story

My friend Lorrie B. is an amazing writer, editor, translator and primary care partner to her parents, both of whom live with dementia. Lorrie is also an insightful blogger who documents her care partnering experiences here: Unforgettable.live.

Like me, Lorrie is also insatiably curious, and, since becoming her parents primary care partner, has done extensive research related to dementia (as have I!). Despite having read reams and reams of dementia-related stuff, Lorrie and I agree the article referenced in this post is one of the best we’ve come across on living with dementia. Lorrie left this comment:

“Wow. I’m with you, Susan, this is one of the best articles about “living with dementia” that I’ve read in the past three years of scouring the media. Such a beautiful and valuable perspective, level-headed and lyrical. I saw both my parents in many of the instances that she mentions – if we had more of this thinking, imagine how much suffering could be spared! Honestly, if people with dementia can teach us to think more with our hearts than our heads, it would benefit everyone to be in their world and feel the power of love beyond the brain. Thank you so much for finding and sharing this.“

Lorrie’s with me and I’m with her – we’ll all benefit and suffer way less when we feel the power of love beyond the brain.

You said it Lorrie B.!

#FightTheGoodFight #WeCanCareBetter

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

“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.

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

One of Lorrie B.’s blog posts: Lesson #29: Hope Springs a Kernel

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/

https://myalzheimersstory.com/2017/12/03/four-years-later-is-too-late-for-my-mom-but-its-not-for-others/

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Advocacy, Inspiration, Life & Living, Love

3 excerpts from the best article on dementia i have ever read (and a link to the full meal deal)

My Alzheimer's Story

Sometimes you come across something that captures everything you want to say so brilliantly that it literally takes your breath away, and makes you weep in gratitude.

Sallie Tisdale’s article Out of time: the un-becoming of self, in the March 2018 issue of Harper’s Magazine, is one of those somethings. It says in five pages what I have tried to articulate in the more than 600 pages on this blog, in workshops, webinars, conversations and comments, with mixed success as best. Yet Tisdale does it beautifully, succinctly and poetically.

Here are three important excerpts from her compelling piece:

“The stark fact is that dementia is incurable, progressive, and fatal, but here is the surprise: in the company of [people who live with dementia], one finds peace and unquestioned love in at least as much measure as in the rest of the world. I watch my clients navigate each day’s puzzling details. I know their efforts may look to many observers like an embarrassment of loss. I see the riches: the brave, vulnerable, completely human work of figuring things out. People with dementia sometimes have a rare entrancement with their surroundings, a simplicity of perception, a sense of wonder. Being with a person who has dementia is not that different from being with a person who doesn’t share your language. It is a little like talking to someone who has lost her tongue and cannot speak, has lost his hands and cannot write. This is not a bad thing; it is just a different thing. It requires a different kind of attention.”

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

“The fact that my own me-ness persists is obvious, and yet a persistence of identity is one of the last things we expect with [people who live with dementia]. They seem different to us; mustn’t they be different to themselves? The spate of recent research considering how a person with dementia actually feels tells us no, not really. People know they have a memory impairment, but they feel themselves to be the same person, even in late stages of the disease: “I’m like a slow-motion version of my old self,” says someone with dementia. The possibility of pleasure, let alone contentment, for this person is barely acknowledged. A team of researchers called our current vision of dementia the tragedy discourse. Another group notes that most researchers have shown “a stark disinterest in happiness,” and their assumption of distress is because that is “the only available lexicon for experience, the only available lens through which dementia is viewed.” Surveys have found that Alzheimer’s disease, the most common form of dementia, and cancer are the diseases that people fear the most. The communal response to dementia seems to invite only existential despair.”

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

“Yet people with Alzheimer’s consistently rate their quality of life higher than their family members do. In a large international study, people with cognitive impairments were no less happy than healthy people. When family members are upset about a relative’s decline, certain it is a terrible experience, they are not always clear on who is suffering. My friend Kate’s mother had Alzheimer’s. She had always worn careful makeup, and she was uncomfortable leaving the house without it. But her makeup became exaggerated, almost clownish, and she refused Kate’s help. Looking in the mirror, she liked what she saw. Going out to a restaurant became, for Kate, “an exercise in my own discomfort, being willing to let her be as she was.”

The full article is here. I strongly encourage you to read it.

 

https://myalzheimersstory.com/2015/08/13/my-mom-still-counts-just-like-everyone-else-and-she-deserves-better-we-all-do/

https://myalzheimersstory.com/2018/08/10/my-mom-is-a-question-mark-august-9-2016/

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Life & Living, Love, Memories, Music, Videos

singer songwriter jay allen holds on to his mom

My Alzheimer's Story

Nashville country music artist and songwriter Jay Allen’s mother has early onset Alzheimer disease. He wrote about it here, and he sings live about it in his song Blank Stares in the video shared by a fan on the Facebook post below:

And here’s the studio version from YouTube:

 

https://myalzheimersstory.com/2016/08/20/dying-with-my-mom/

https://myalzheimersstory.com/2016/02/25/10-normal-ways-care-partners-express-grief/

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Care Partnering, Death & Dying, Life & Living, Love

7-part palliative care plan works (for people AND cats)

My Alzheimer's Story

About a month after Mom died in August 2016, her little kitty cat Pia Roma, who had lived with me since late February 2013, began to behave strangely. Coquetishly cute Pia, with her big yellow eyes, had always been a little odd, but this was different. She wasn’t herself at all. There were continence issues, a lot of meowing and more vomiting than usual.

“She has chronic kidney disease,” the vet told me after some blood tests and an overnight stay at the clinic. “And probably a bit of feline dementia too.”

The vet gave me medication for the CKD, and put Pia on a special diet. Pia continued to enjoy an active life for an older cat, despite her dementia. When I took her back for a check-up in 2017, Pia’s kidneys had actually improved. In the four years we’d been together, we’d grown really close, and I was delighted she continued to be so well. I was equally devastated, however, with the results of this year’s check-up, which took place last week. I wrote about it on my personal FB page:

“I took Pia to the vet yesterday afternoon. Unfortunately, the news isn’t good. The vet was impressed with the great shape she’s in for a cat her age, which I think is 16. The vet said her heart is in fabulous condition; she was surprised and impressed when I told her that Pia still runs around, plays, and jumps up and down from my desk to the floor and onto my very high bed.

The blood tests, however, told a different story. The results showed that, while her thyroid is fine, her kidney disease has progressed from stage I, which is was two years ago, to stage III, which it is now. The vet reckons she only has about six months more in this world.

The only thing that can be done for her now is palliative care to keep her comfortable. Of course I feel desperately sad, and I can’t stop crying, but what to do? This is life. And death.”

As with any terminal illness (e.g. Alzheimer’s disease, kidney disease, etc.), the patient does not suddenly die the minute she or he is diagnosed. People (and animals!) can continued to live relatively well until they die. I believe our job as care partners is to support those we love in living as they go through the process of dying. If I’m not mistaken, that’s what palliative care should be about. Hard as hell in the midst of our own grief, no doubt about that. But I know it’s possible.

So I have a palliative care plan for Pia. It’s essentially the same as what I tried to do for Mom, even though my hands were tied in many ways. Here’s the plan:

1) watch and listen carefully to try to determine what her needs are and do what I can to meet them

2) focus on what she can do each day

3) make her life as joyful as possible

4) maximize comfort

5) minimize pain

6) let her be the driver

7) respect the process and hold space for both of us

I know all these things worked a treat when I was with Mom, and I believe they’ll help Pia as well. Maybe they’ll be a blessing for those you love too.

https://myalzheimersstory.com/2018/02/25/3-wise-thoughts-on-being-with-someone-you-love-as-they-die-which-also-apply-to-being-with-someone-with-dementia-as-they-live/

https://myalzheimersstory.com/2018/04/27/understanding-the-suffering-associated-with-dying/

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Care Partnering, Challenges & Solutions, Love

harry and the daughter who never visited

My Alzheimer's Story

I don’t know if the story/parable below is true or not, but I think it could be. I’ve written it based on a comment someone shared in a caregivers’ group on Facebook. One thing is sure, the lesson it contains is powerful, practical and hopeful.

Harry, who lived with Alzheimer disease, was moved into a large nursing home somewhere in the world because his family couldn’t take care of him anymore. Every Saturday, a young woman would come to visit. She always brought delicious ice cream for Harry and her to share. Harry loved ice cream. He loved the feel of the cool creaminess in his mouth, and he enjoyed tasting the different flavours: raspberry, vanilla, chocolate, and maple, which was his favourite.

He and the young woman savoured their bowls of ice cream together, and chatted about things Harry didn’t remember after she left. But each week his face lit up like a Christmas tree when she walked into his room. He was glad to see her because he often felt lonely. Even though there seemed to be lots of people around, none of them sat and talked to Harry like the young woman who brought the ice cream did. No one seemed to pay much attention to him but her.

These Saturday visits went on for several months. Then, at the end of their visit on the last Saturday in July, Harry said something to the young woman that made her terribly sad.

“My daughter never comes to visit,” Harry said. His eyes got watery, his chin started to quiver, and his voice cracked. “I think she’s forgotten me. She mustn’t care if I live or die. I wish she would come to see me like you do.”

The young woman was devastated by Harry’s words. Her heart broke in two on the spot. She had to do something to help Harry feel better.

The next week, when she came to visit, bringing ice cream as usual, she also brought an envelope, which she surreptitiously placed on Harry’s bedside table when she came in. After they’d had their treat, the young woman drew Harry’s attention to the envelope.

“It looks like you got a letter Harry,” she said. “I wonder who it’s from?”

“I don’t know,” Harry said.

“Shall we take a look?” the young woman asked.

Harry nodded. The young woman fetched the envelope from the side table. “It says ‘Dad’ on the front.” She handed the envelope to Harry, who took if from her with a slight frown on his face. “Open it,” said the young woman. “Let’s see what it says.”

Harry pulled a handwritten note from the envelope and read it to himself. A smile spread across his face.

“What does it say?” asked the young woman.

“It says ‘Hi Dad, I dropped in to see you today, but you were out. You must have been at the barbershop with Joe and Charlie when I came by. But don’t worry, I’ll come again next week, and I’ll bring some ice cream to share. See you then, Love Katherine.’”

Harry was beaming. “Katherine’s my daughter,” he said to the young woman. “She came to see me today, but I must’ve been out. She says she’s coming back next week. She’s going to bring ice cream. She’s loved ice cream since she was a little girl.”

“Oh Harry, that’s great news,” said the young woman, “I’m sure your daughter loves you very much, and she’ll be here just as she promised.”

It went on like this every week for several months. Anytime Harry felt sad that his daughter never came to visit, the young woman would draw his attention to an envelope somewhere in the room. The notes were slightly different each time: perhaps Harry was in the bathroom, or the garden, or at the dentist, or wherever when Katherine had come by. But the promise was always the same: next week, his daughter would be back, and she would bring ice cream.

Meanwhile, the young woman and Harry enjoyed many Saturday afternoons together talking about his childhood, the weather, and the birds in the feeder by the window. Sometimes the young woman read to Harry. Sometimes he told her war stories. They joked and laughed about nothing. Then, one Saturday in December, Harry’s face lit up like a Christmas tree just as it always did when the young woman walked into the room. But this time, it was different.

“Katherine!” Harry exclaimed. “I’m so glad to see you.”

“Hi Dad,” the young woman said as she gave him a big hug. “I’m happy to see you too. I brought you some ice cream. Maple, your favourite.” They spent a wonderful afternoon laughing, listening to music, singing and just being together. Harry told Katherine about the young woman who sometimes came to visit, and who also brought ice cream.

“She’s very nice,” Harry said earnestly. “But not as nice as you Katherine. You’re my daughter. No one can take your place.” Katherine reached out for Harry’s hand, squeezed it gently, and looked into his eyes. “I love you, Dad,” she said.

“I love you too sweetie,” Harry replied. “Always remember that. No matter what.”

I visited with my mom virtually every day for the last four years of her life, and I was with her when she died. Sometimes she recognized me, sometime she didn’t. But it didn’t matter. What mattered was that we got to spend time together, and we created moments of joy almost every day. Just like Harry and Katherine.

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

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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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