Care Partnering, Hope, Inspiration, Joy, Love

5 powerful dementia care lessons i learned being my mom’s care partner

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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Advocacy, Information, Toward better care

no one should have to put up with that racket!

I’m compiling evidence (I’ve got LOTS of it!) to include in letters of complaint to the College of Physicians of Quebec and the Order of Nurses of Quebec regarding the “care” my mother received while in a dementia jail from 2012 to 2016.

One of the environmental aspects that contributed to Mom’s anxiety and agitation was the volume and nature of the noise around her. For the first eighteen months she was there, Mom was forced to sit in an armchair beside a busy elevator and across from the facility’s call bell panel. The panel buzzed constantly and loudly. I found it extremely annoying; so did Mom. But was it just us? I decided to solicit other opinions with a mini survey.

I invited online friends and fans to listen to a 20-second audio clip:

Then I asked them to answer three questions. When I had more than sixty responses, I did an analysis. I wasn’t surprised by the results.

Question 1:

None of the respondents found the sound calming. Only three found it neutral. The large majority (83%) found the sound annoying, and nine respondents (i.e. 13% of all respondents) found it beyond annoying (for a total of 96% saying it was unpleasant in some way); those who answered “other” described it like this:

  • Oh my shattered nerves, horrible……I just wanted it to stop!!!
  • anxiety-provoking as it endures. it is indicating something is wrong, yet I don’t know what is wrong and I also can’t fix the problem
  • Stressful
  • Irritating
  • Distressing
  • so scary… a violent aggression to my ears, to my body, to my heart, to my soul! Panic… a sense of being trapped… attacked with no way out! Thank god for the sound of your soothing voice
  • most uncomfortable – didn’t like it at all
  • Almost painful
  • It hurts. I can’t think straight. It distracts and annoys me. I’m looking for ways to stop it.

Question 2:

Question 3:

The third and last “question” asked respondents to comment. When I did the analysis, Question 3 had generated 33 responses from a total of 68 respondents (i.e. 48% of all respondents left comments). Twenty of those who commented (i.e. 29% of all respondents and 61% of those who commented) expanded on the annoyance factor:
  • I have six five-year-olds in my care. I enjoy getting them rowdy, busy and boisterous. This background sound is detrimental to me and anyone who can hear it. I played it to my band of five-year-olds through a speaker. They clapped their hands over their ears. One told me to “make it shut up!”
  • I work at a specialized Dementia facility and this would freak out my residents
  • I don’t have alzheimer’s but I do have epilepsy and sounds like that really bother me especially high pitched ones.
  • Chaotic feel
  • Noise was painful
  • Those sounds make my brain crazy
  • No-one should have to put with that racket!
  • Get me out of there… fast.
  • I think this sound would be really annoying to a person with Alzheimer’s
  • I’m a carer and, if I didn’t like it, I’m sure my husband who has AD wouldn’t either.
  • I have extremely sensitive hearing and noises like this jangle my nerves.
  • that sound left me very unsettled…
  • hurts my head!
  • The sound is annoying, high pitched and likely induces anxiety in someone with dementia. A softer bell or other ringtone or even music could be a much better alternative.
  • Very annoying sound
  • Seems sound would cause severe stress over time.
  • Incredibly irritating sound, would make me furious if I was subjected to it for a long time.
  • I hated the noise – it set my teeth on edge & I wanted it to stop immediately.
  • curious when we get more info on the project, can’t imagine anyone would find it calming unless it reminds them of home (reminded me of a hotel I stayed in Lima)
  • Brought on anxiety

I received these additional comments on Facebook:

  • OMG, that was a very stressful 20 seconds!
  • I cant listen beyond 5 seconds. I can’t think. It eats into my brain. I want to make it stop. I put it through my speaker, I normally have music blasting was hell. It hurts. I want it to stop.
  • Unnecessary, annoying in a sense heightening manner, with my being on spectrum may affect me differently, but it was just shy of neurological torture in that short span alone.

And one friend quipped that it wouldn’t be long before he’d take a sledge hammer to the sound panel.

If people who DON’T live with dementia find something in the environment annoying and agitating, what might it be like for those who DO live with dementia? It’s really not that hard to figure out what environmental factors might be distressing to someone who lives with demential. All you have to do is ask yourself what you find irritating and/or distressing, and put yourselves in their shoes.

The oh-so-irritating call bell alarm panel sound was eventually changed to something more like a “ping,” but only after Mom had been there for about eighteen months. And that wasn’t the only anxiety producing noise she had to endure. She had always hated loud sounds. It must have been unrelenting torture for her to be imprisoned in such a noise-filled environment. No wonder she was “agitated.”

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Advocacy, Information

how do you feel about this sound?

Thank you for helping me with this little project.

1) Play this 20-second audio clip:


2) click here and tick one of three boxes describing the sound of the buzzer you heard in the background of the clip.

Thank you!

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Death & Dying, Life & Living, Poetry

eternal anguish

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.

eternal anguish

©2019 punkie

eternal anguish

please take her lord,
oh no not yet!
i’m afraid
i might forget

how she smiles
and laughs and cries,
it’s not the time
to say goodbye

but I can’t bear
to see her so
perhaps today
is when she should go

is it selfish
when i wonder
how long before
she’s six feet under?

oh my god
don’t take her now
no, this can’t be
her final bow

let us play
another scene
in which she doesn’t
lay serene

a corpse upon
a broken bed
that’s not my mom
she can’t be dead

she’s the one
who gave me life
who saw me through
both joy and strife

don’t take her god
i need her here,
by my side
forever near

i promise lord
that I’ll be good
and do exactly
as I should

i won’t lie
or kill or loot
or disrespect
an older coot

i’ll love my neighbour
if only you will
set her free

to dance and sing
like we once did
when I was no more
than a kid

please don’t take her
oh no please don’t
i wish you would,
and that you won’t

i know deep down
it’s peace she seeks,
every day
week after week

she craves her home
amidst the stars
her life beyond
these prison bars

but when she breathes
in fits and starts
who will call
the funeral cart?

in this game
where life’s at stake
we’re helpless
to decisions make

it’s in your hands, god,
you call the shots:
undo this heart
tied up in knots

around the rosie
we will sing
lord have mercy
you are the king


©2019 Susan Macaulay. I invite you to share my poetry widely, but please do not reblog or copy and paste my poems into other social media without my permission. Thank you.

a daughter’s prayer to god

don’t mourn me long

dying with my mom

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Care Partnering, Teepa Snow, Tips, tools & skills, Toward better care

surprising teepa care partner tip for when people keep repeating same old stories

Yes, it can be tiresome listening to someone who is living in the early and middle “stages” of dementia tell you the same old stories over and over again.

When you feel worn out by repetition, it can be helpful to remember these three things:

  1. The person living with dementia is likely trying to create a connection with you through story telling. She is reaching out in one of the joyful ways she knows how: by sharing some of herself or her life.
  2. The person living with dementia likey doesn’t remember he has told you that same story before. To him it’s fresh and new.
  3. Storytelling, conversation and connection are great ways to preserve a sense of self and to get brain cells firing, both of which are good for the well-being of us all, including people living with dementia.

In the powerful video below, Teeepa Snow demonstrates in just a few minutes how to keep conversations going with a short and simple phrase that will create engagement instead of cutting people off and potentially creating ill will and disconnection.

Teepa’s counterintuitive tip? Say: “Tell me more…”

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

10+ Teepa Snow videos on dementia basics

25 dementia communication quick tips in 4 minutes!


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Advocacy, Care Partnering, Real life, Toward better care

care partner struggles alone without support of loved one’s adult children

Some of the stories I hear from care partners break my heart. Many find themselves in the same boat: being abused by their own family members who do little or nothing to contribute to the well-being of another family member living with dementia.

Here’s a comment from MyAlzheimersstory subscriber LK:

“You really hit the nail on the head with this post, Susan.  We carers just need a break sometimes, we need a weekend away, we need someone to come and take the person living with dementia out or offer to sit with them for an afternoon.

I am a carer for my partner of fifteen years, we’re not married and the house we live in is his.  He has four grown up children, none of whom are any help; they don’t visit and don’t offer to take their dad out (one lives on another continent).  I wanted us to move up to live nearer to my family who are currently a two-hour drive away. Three of the four children (including the one living on another continent!) said “no you’re not going to move our dad.”

The oldest has joint power of attorney with me and has said he will block any sale of our current home. Although they offer no help, three of the four of them are determined to make my life even harder, which has resulted in me having to see a solicitor to see what my rights are.

I no longer have any goodwill to give to the three who are blocking the move – whereas before I would have taken my partner to visit the ones who live in this country I won’t do so now, which is a loss to my partner but I can’t do everything especially as they seem only to be judgemental over the way I look after their dad and seem oblivious to the fact that I might need some emotional support from my own family!”

Although my situation was different than L.K.’s, the result was the same – exhaustion, frustration and PTSD for me, and neglect and abuse for my mother during the last four years of her life.

Even more discouraging is the fact that, more often than not, the law seems to support the abusers!

Still, we must not give up #FightTheGoodFight

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Advocacy, Care Partnering, Real life, Toward better care

dementia care partner mom investigated for having daughter help with care

Catherine Bixenman-salesi, who is a member of the online dementia support group USAgainstAlzheimers, is the primary care partner to her mom who lives with Alzheimer disease. Catherine regularly shares innovative, interesting and easy-to-implement “work arounds” to address the challenges she faces interacting with her mom. I shared her great ideas previously here and here. On February 3, 2019, Catherine, who lives in New Jersey, USA, shared a post on USAgainst Alzheimers that made my blood boil. Here it is in its entirety, reproduced with Catherine’s permission:


Well, this is how upside down the world has become. My 16-year-old daughter wants to go to nursing school. I am a registered nurse and frankly, I wish she would find another profession, but I believe it is her choice. I try to tell her she does not need to go to nursing school because I am a nurse and it is no way like it is portrayed on Grey’s Anatomy!

Her school offers two vocational classes one for medical assistants and another class for those that want to go to college. The last, you need to have good grades. She is is an A / B student. To make a long story short she was so eager to get into the program, she tells her guidance counselor that she helps me care for her dementia nanny.

I get a knock at the door: two police and two Division Youth and Family Services workers. I was so embarrassed. The social worker starts out with may I come in? We received a complaint that you let your daughter care for her grandmother and you make her feed her…ect. I said come in, but I am going to record you! How dare you! Well, my mother played with my phone and put it into a knock lock mode, so I could not record, but they did not know that. The lady tells me that I could not record our conversation. I said like hell I cant! This is my home and you are standing in front of me, four people. Who is my witness! The policeman said yes it was my home, and yes I could record.

Thank goodness my son was visiting. I went and told him to sit and listen to our conversation. I told them that my daughter has never given my mother a shower. I only asked her to help get her in the tub, I told her I am a nurse and did not use my daughter as a slave. My daughter helps me keep Mom steady when we put on her depends and only once she cleaned moms ass. Only because she pooped when I was at the grocery store. My son told the lady that was the truth and that when my mom soils herself. Even if he volunteers to help I just instruct him about what supplies to get or to make mom’s bed. I told the ladies if I made my daughter my mother’s aide, why did I drive my kid to school and why did I let her go to a friends house during the weekend?

I told the ladies that as a nurse I taught my daughter how to use the hospital bed, turn Mom, and help my mother out of bed with not one person but two. She knows never to get Mom up alone, ever! If I have to run to the doctor I tell my neighbor who is a nurse. My mother is DNR and DO NOT HOSPITALIZE and all the papers are on my refrigerator and posted on my mother’s bedroom door. They ladies went and looked at my mom, they looked in every room of my house. My home is clean!

The one policeman whispered in my ear how sorry he was and he sees I take excellent care of Mom. So I call the school and find out it was my daughter’s counselor that made this call. I said did it occur to you that my daughter was trying to let you know she wanted to get into the vocational program! If I used her as a slave, I am very sure she would not want to be a nurse! That she needed a parent’s signature to get into the program, so she is the one that came to me to sign the permission slip! Dumb ass counselor.

Social services left telling me that it was a misunderstanding. I said yeah – how about this false allegation and negative effects could or would have on my clean nursing license. Now I have to wait to get a letter of clearance. Waiting. Called the school; the counselor said that social services never called her back …so I said they came out 24 hours after you made your false accusations and its taking weeks to get a letter from them to get cleared…DID YOU FOLLOW UP? So if I understand correctly you called social services and they came to your school and questioned and investigated my daughter first before they came to visit me to make sure our stories lined up – which they did – they talked to me and never took my daughter from my home, because you made a bogus call and wasted taxpayers money? My daughter’s counselor did not like my words and common sense. She hung the phone in my ear!


I find this story absolutely astounding, and a clear example of how the work of family members who are dementia care partners is so terribly misunderstood, particularly by many so-called “professionals.


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Advocacy, Resources, Toward better care

10 practical actions that foster real person- and relationship-centered care

A lot of lip service is given to person-centered care, and often not a lot of it is actually delivered. And some people say we should go beyond the concept of person-centered, and instead focus on relationships.

Whatever words you choose to use, here are some key actions that will help develop care environments in which being counts more than doing:

  1. Know each person, their individual likes and dislikes, as well as their wants and needs
  2. Recognize that each person can and does make a difference, no matter their physical, psychological or emotional state
  3. Respond to spirit, as well as to mind and body
  4. Understand that risk and risk taking are normal parts of life. Risk can never be completely eliminated. Psychological safety is as important, perhaps more so, than physical safety.
  5. Put people before tasks
  6. Do unto others as you would have them do unto you
  7. Promote the growth and development of all
  8. Shape and use the potential of the environment in all its aspects: physical, organizational, psycho/social/spiritual
  9. Practice self-examination, searching for new creativity and opportunities for doing better, and interacting more effectively with those around you.
  10. Recognize that culture change and transformation are not destinations but a journey, always a work in progress.

I drew these from a great article by Marguerite McLaughlin, Senior Director of Quality Improvement at American Health Care Association; the article is entitled Avoiding Institutionalizing Person Centered Care. McLaughlin gives several real-life examples of what is and what is not person-centered care, and makes excellent points such as this one:

“So often, care plans read “redirect” as some generalized marching order — a vague notion to get people with Alzheimer’s disease distracted when instead, it should offer ideas that soothe and comfort, prevention strategies that keep folks from becoming bored or lonely. Oh, and there is so much more that can be said and done within this context!”


is your dementia glass half empty or half full?

13+ needs we share with people who live with dementia

20 paths to dementia care homes away from home

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Hope, Love, Toward better care

a story about being with the people you love, whatever the state of their brains

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)


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.


S: I’m happy to see you.


S: Hi.

Hi. (A long pause) I…I…I like seeing you.

S: I like seeing you too Mom, very much.


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.


S: it’s very nice.


S: We’re lucky that way.


S: Not everyone is as lucky as us.


(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?


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?


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…


S: …and we do some spelling…


S: …and you are an excellent speller…


S: …you can spell every word in the dictionary

Yeah, it would be fun wouldn’t it?

S: It would be fun, Mom,


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?


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?


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.


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…?


S: Yes.

What can you spell today? Can you spell clock?


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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Hope, Love, Toward better care

i tell my mom’s story to help improve dementia care worldwide

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.

Videos in both English and French from the conference may be viewed here. There are lots of other resources on the Disability-Life-Dignity (Handicap-Vie-Dignite) website.

And here are some powerful related links:


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