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.
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.
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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.
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Kate’s comprehensive and thought-provoking statement comprises a wealth of information including a list of 10 Dignity in Care Principles, which Kate originally published on her blog in 2014.
Inspired by her list, I added ten more items to create twenty actions that long-term care providers and their staff could implement to foster and maintain the dignity of people living with dementia (PLWD) who reside in their facilities.
Care partner Catherine Bixenman-salesi knows how to laugh (as well as cry) in the face of the day-to-day ups and downs of living with her mom who lives with dementia. Here’s a short chuckle Catherine posted in a dementia care Facebook group:
Sometimes I don’t know whether to laugh or cry LOL! This happened just now:
Mom: Excuse me, I want milk.
Me: You hate milk, Mom.
Mom: You are lying to me.
Me: Okay, I will bring you some milk.
I go to the kitchen only to find that my kid has left a gallon milk container in the fridge with about a half teaspoon of milk in the bottom of the container. Why? I ask myself. Why does he do this? Arrgghhh. I pour what my kid has graciously left us into a glass, and bring it to my mother. She takes a sip and rolls her eyes. “This tastes like milk,” she says. “I hate milk.”
It’s gonna be one of those days!
Thanks for all you do Catherine, including sharing tips and stories like these:
At some point in most dementia care partners’ experience they will find themselves on this battleground: wishing for their loved one the peace that comes with death, while feeling immense grief at the prospect of losing them. The resulting mix of emotions — compassion, guilt, longing, regret, sorrow and more — is exceedingly difficult to cope with.
This poem is about the heart-wrenching conversations one has with self and the powers that be at those times. It’s the second version of a poem i called “a daughter’s prayer to god,” which I first wrote in 2014, after Mom came “this close” to dying.
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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My Alzheimer's Story 