My mom (right) and her brother Eddy (left) during one of their last visits together (April 2013). They both lived and died with Alzheimer disease and dementia in their mid eighties.
I didn’t see her on August 11, 2016; I didn’t have the strength that day. But I was by her side for the next six, and I held her hand when she died on August 17, 2016.
Being my mother’s care partner was the hardest thing I have ever done. It was also the most rewarding. I learned so much. I loved so much. I cried countless tears. I wouldn’t trade the journey for anything because I also experienced the deeply spiritual privilege of loving another person unconditionally.
Below are ten important facts I learned during and after the time I spent being my mother’s care partner (I’m still learning!)
People who are living with dementia, no matter what “stage” of the condition they are living with:
Let it go (it doesn’t matter if they know you or not) is one of MyAlzheimersstory.com’s most shared pieces. When I posted it on Facebook in January 2020, long-time follower Elizabeth Dunbar shared this delightful story:
My dad knew my essence until his last breath. Labeling and putting people in boxes and pigeon holes is a human convention. Other animals recognize each other without knowing relationships or each other’s history. They just accept.
So whether Dad knew my name or my relationship to him or not didn’t matter to me. I remember going away for a few days about a year before he died. When I returned, I bounced into his room as always. He looked quizzical. I realized he didn’t totally remember me, and I gave him permission to do that.
“I know you’re not feeling well enough these days to totally remember me,” I said. “Is it ok to give you a hint?”
He nodded his assent.
“Well I’m the daughter. One of two children you had. I’m the one that talks a lot!” I joked.
He threw his head back and laughed with tears in his eyes.
”Your name: it’s a Queen,” he said.
“Yes, that’s right,” I said. “I’m Elizabeth. Queen Elizabeth.”
We both laughed.
This was a simple conversation we had many times after that. Sometimes I think he was lucid and pulling one over on me, because that would be him. I always treated him like he was my dad, and let him know that any forgetting was simply okay.
I love this story. It’s so hopeful and helpful, and speaks to the power of playfulness and going with the flow. Thank you so much Queen Elizabeth Dunbar.
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:
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.
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January 25, 2019: I struggle between my twin needs for solitude and connection. Today, I missed a loving touch, and felt a little lonely. So I did something I haven’t done in a long time: I opened the file of archived audio recordings I have from when Mom was in #DementiaJail, and randomly picked 2016, the year she died. Today’s date was near the top of the list.
My visitation “privileges” had been confined to between 1 and 3 p.m. for almost a year at that point, and most days Mom was “asleep” (i.e. sedated) during the time I was allowed to see her. I would sit by her side, and hold her hand, helpless and furious about the situation in which we were so cruelly confined.
I clicked on the January 25th file, and listened. What I heard filled me with sadness, joy, grief and hope. I was extremely touched by the first few minutes of our conversation, which to me clearly demonstrate that people living with Alzheimer disease want and need to remain closely connected in relationship with those around them, particularly those they love.
Here’s a clip (which to me says it all), from the start of my ninety-minute visit with Mom that day three years ago (transcript below if you want to read while you listen)
Transcript
Susan: Patty? Patty? Hello!
Mom: Hello.
Susan: How are you?
Mom: How are you?
S: I’m very well. How are you?
M: Fine.
S: Good.
Yeah.
S: I’m happy to see you.
Yeah.
S: Hi.
Hi. (A long pause) I…I…I like seeing you.
S: I like seeing you too Mom, very much.
Yeah.
S: I like seeing you very much Mom. We still have fun together.
You have eh?
S: Yeah, we do.
Well that’s kinda nice eh?
S: It is kinda nice, Mom.
Yep.
S: it’s very nice.
Yep.
S: We’re lucky that way.
Yeah.
S: Not everyone is as lucky as us.
Nope.
(in an incredible moment of synchronicity I go to turn down the volume on the TV, and a voice on the talkshow that’s on says something like:
“…and it was a real gift to be able to say how much he brought to her life, and how much she loved him and what an honour it was to care for him when he got sick, and that was really beautiful to me, and I think one other is one other thing i would say is funerals are for the living so it’s so important to tell the people you love how you feel about them before they depart, don’t say it at the funeral when they can’t hear you.)
S: Mom?
Yeah.
S: Would you like to go down and have some tea with me?
Yeah, I would. I would. It would be nice.
S: Okay. Shall we do it then? Let’s do it. I’m going to lift your chair up okay? I’ll get your other chair first. (I get the wheelchair) Okay Mom. Patty?
Yeah.
S: I’m going to move this chair so you can stand up okay?
Yeah. You’ll like that eh Sue?
S: I do. I like to spend time with you.
Yeah, well…. I like to spend time with you.
S: I know you do ‘cause I’m fun (I laugh).
(Mom laughs) you…you…you…have fun.
S: …and we joke around together…
Yeah
S: …and we do some spelling…
Yeah.
S: …and you are an excellent speller…
Yeah.
S: …you can spell every word in the dictionary
Yeah, it would be fun wouldn’t it?
S: It would be fun, Mom,
Yeah.
S: …and then we do some singing…
Yeah, that would be nice.
S: How are you feeling today?
I feel good today.
S: That’s good. Were you having a little rest?
Yeah, we were having a little rest, but it was a nice rest.
S: Good. I just need you to lift your bum up a bit Mom.
It’s nice though, it’s nice.
S: Lift your bum up Mom. Again. (As I free Mom from the various “bells and whistles” that are attached to her so I can move her from the recliner to the wheelchair, they begin to sound their respective alarms. “Oh shut up!” I scold the bells and whistles in frustration)
Oh yeah, well you…
S: That thing drives me nuts Mom. It drives me crazy.
Well, it drives me crazy too.
S: It drives you crazy too?
Yeah. I don’t blame you.
S: What about it drives you crazy? That sound?
Yeah.
S: Me too. Are you ready to stand up?
Yeah I’m ready to stand up.
S: Okay good. We’re going to transfer over to this chair okay?
Yeah, well it is a chair.
S: It is a chair. I’ll put your feet a little bit over like this…okay, ready?
Yeah.
S: One, two, three, stand up, Mom. Excellent. You stood up easily Mom.
Yeah, it’s true.
S: It is true. Can you take a step?
Oh yeah, sure I could.
S: Okay good. Hey, you’re doing well. Keep coming. Okay, I’m going to turn you around over into this chair, Mom. How’s that? (She sits in the wheelchair)
Oh it’s lovely. It’s nice over there.
S: It’s gorgeous. Do you need to go to the bathroom?
No, I like to go to the bathroom though.
S: The peeps? Should we go the tea first and peeps after?
Yeah that would be nice.
S: Okay, let’s do that then. Yesterday when I came you were asleep, Mom.
Oh no. I was a asleep?
S: Yeah, you were sound asleep.
No.
S: Yeah, but you’re awake today.
Maybe I’ll be awake today and another day (Mom claps her hands)
S: Good clapping. Clapping on your…?
Gapping!
S: Yes.
What can you spell today? Can you spell clock?
C-L-O-C-K.
S: Yes!
C-L-O-C-Kay on your little pay.
S: Yeah. (I laugh)
Oh, It’s fun to go over there.
S: Yeah. And it’s fun to do spelling. We’ll do some more downstairs.
Yeah, that’s fun….
~~~~~~~~~~~~
I miss connecting with Mom in this physical plane. I’m glad I have these conversations to reflect back on. I’m grateful I said “I love you” to her just about every day for the last four years of her life. Lucky us ❤
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I strongly believe that people who live with dementia and their care partners need to speak out and tell their stories if dementia care is ever to reach the standard it should be at in Canada and around the world.
During the last four years of her life, I visited my mother virtually every day in a place I came to call “Dementia Jail.” While it was good for both of us, and essential for Mom’s overall well-being, at the same time it was traumatizing for me.
“I feel like I’m watching mom being slowly tortured to death every day,” I told my friends.
When Mom died, I realized just how much those daily visits had impacted me. I have no doubt that I experienced some form of post-traumatic stress in the weeks and months following her death. The neglect and abuse I witnessed caused me to become a dementia care advocate. The 600+ posts on this blog comprise a part of my advocacy. But I also actively seek opportunities to tell her story in different ways.
On October 24, 2018, I was one of three facilitators to lead a workshop called “Preventing the Use of Physical and Chemical Restraints: Finding Alternatives” at Together…Promoting Wellness, a one-day conference spearheaded by Disability-Life-Dignity (Handicap-Vie-Dignite), which was aimed at addressing the issues of neglect and abuse in Quebec’s long term care facilities. This is the video of the English version of that workshop; I spoke for the first 20 minutes or so. We also did the workshop in French; the video of the French session is here.
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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:
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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?
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.
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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.
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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.”
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.
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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:
deck her out in festive finery
just be with him
listen
agree (hear all the creative ways BJ does this in the video below)
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My Alzheimer's Story 