Care Partnering, Inspiration, Life & Living, Videos

20 things & beings i love & am grateful for today

My fb friend mary missy taylor issued an invitation. Here’s what she said:

“We live in turbulent troubled times. And it’s easy to be swept up in all that is dysfunctional, uncertain, and frightening. I propose to write a list of twenty things I love and challenge friends to do the same. Your format can be a numbered list, or something more creative such as a poem. For those who wish to participate, please encourage a friend or two you know to do the same. Let’s spread LOVE today.”

Here’s my list:

1 ) my sky tonight (pictured above), and all the others before and after it

2 ) the generosity of a “stranger” i met for five minutes a decade ago who believes that when we invest in girls and women, we invest in changing the world for the better. This stranger has since regularly gifted me with inspiration, hope, faith, love, courage, determination and passion for no reason other than we are all connected and somehow instruments of the universe

3 ) stepping outside and hearing the sound of chickadee wings as they fly to and from the feeder by the window

4 ) a little grey cat who still has the energy to chase a string in a circles and the strength to hop up onto my bed at night where she curls up on the quilt with her motor running

5 ) a defiant #blacklivesmatter poet with turquoise lips that matched her multicoloured coat

6 ) tears that never seem to stop, ever

7 ) wood burning in the fireplace I’ve been lucky enough to sit in front of on winter nights for the past five years, and which makes me think of Joan of Arc every time.

8 ) the heart beat and hard beat of driving rain against my bedroom window panes this morning before dawn

9 ) pulling brown-eyed susans out of the front garden with my frien naisi just after the rain stopped, knowing she will transplant them in her garden and remember me ever autumn when they bloom

10 ) baked salmon with mustard glaze and broccoli with lemon and butter accompanied by bourgoigne aligoté

11 ) jacqueline novogratz and her work

12 ) 70% dark chocolate

13 ) dried hydrangeas in several different-sized baskets thanks to the angel who used to cut mom’s hair

14 ) the joy of writing rhyming poetry that pops into my consciousness and then drops onto a page or a keyboard like pieces of a jigsaw puzzle

15 ) leah bisiani’s take on being a care partner: “Together, the care partner, the person requiring care and those who care for them, should join as one so that life continues as they all desire and deserve. The gift of life isn’t singular nor one way, because we all have the opportunity and the privilege that comes with caring for each other in a way that enhances the experience. Love does conquer all and living with dementia can never diminish true love. No condition ever does. Just so poignant and touching.”

16 ) the ripple effect

17 ) amazing women who stand on stages everywhere and tell their worldwide stories of tragedy and triumph, tears and fears and thus create cracks and fissures that let the light in and cause healing to begin

18 ) the tick tock tick tock of my mother’s antique clocks marking time, still.

19 ) lists, especially ones like this one, this one, and this one that help care partners transform their experiences

20 ) mary missy taylor’s take on what not to say to someone who is grieving

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Care Partnering, Inspiration, Life & Living, Videos

when i get muddled, i sure wish she were here

Everybody gets mixed up, loses things, forgets stuff, sometimes feels confused, and gets lost. It can happen at any age — seven or 70. We all need help, support and looking after sometimes, and boy, you sure realize it when you’re alone.

I wish my mom were still around to look out for me. Or maybe she is, but just from a different place…

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Care Partnering, Life & Living, Love

thank your lucky dementia stars

Living with dementia is hard. I know because I know people who live with it and they tell me so. And I saw first hand how hard it was for my mom.

Being a care partner to someone who lives with dementia is also hard. I know because I did it in various ways for a decade, and I read real-life accounts about how difficult it is for other care partners everywhere every day.

Sometimes people living with dementia and their care partners feel or think they are worse off than those on the other side of the coin. But are they? And if they are, does it really matter?

Living with dementia is excruciatingly difficult on everybody: the people who live with it, the people who live with the people who live with it, their families, their friends, and their communities. Everybody. Dementia is tough on everybody.

I get frustrated sometimes because we don’t need to make this dementia rough patch into a no-win argument about who has the shorter end of the stick. No one does. No one is worse off. It’s shitty. Life is shitty. We’re all in it, and it’s shitty. As well as joyful.

Just because someone expresses the fact that she or he is having a hard time, doesn’t negate YOUR hard time. It just means every-fucking-body is having a hard time.

We could have been the mother, farther, daughter, sister, or brother of someone killed in a square in Mogadishu today. Or the parent forced to send his child to sea alone in an unseaworthy boat because that’s the only one-in-a-million chance that child has to survive, only to have him drown on the way to potential safety. Or the young Rohingya mother who watched her baby being burned alive after soldiers threw him into a fire. And then she was raped. The rest of her family was murdered; somehow she managed to escape.

There are far worse things than living with dementia or being the care partner of someone who lives with dementia. We are lucky in so many ways. We should be counting our collective blessings. Let’s maintain some perspective, and create some space for more joy to honour those who don’t have nearly as much as we do.

End of mini rant.

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Care Partnering, Inspiration, Life & Living, Videos

15 qualities dementia care partners need to survive

Being a dementia care partner to my mother who lived with Alzheimer disease was one of the hardest things I’ve ever done. It was also one of the most rewarding. Like millions of others worldwide, I was drafted into the role knowing nothing about dementia or even about being a carer. I learned a lot over 10 years.

Here are 15 essential qualities (in no particular order), that I feel a care partner must either possess initially or acquire during the process of caregiving in order to survive being a care partner for any length of time:

  1. Courage: the ability to do something that frightens one
  2. Determination: firmness of purpose; resoluteness
  3. Compassion: sympathetic pity and concern for the sufferings or misfortunes of others
  4. Flexibility: the quality of bending easily without breaking
  5. Creativity: the use of the imagination or original ideas
  6. Stubbornness: dogged determination not to change one’s attitude or position
  7. Kindness: the quality of being friendly, generous, and considerate
  8. Resilience: the capacity to recover quickly from difficulties (see Huddol video below)
  9. Stamina: the ability to sustain prolonged physical or mental effort
  10. Empathy: the ability to understand and share the feelings of another
  11. Strength: the capacity to withstand great force or pressure
  12. Energy: the strength and vitality required for sustained physical or mental activity
  13. Gratitude: the quality of being thankful; readiness to show appreciation
  14. Patience: the capacity to accept or tolerate delay, trouble, or suffering
  15. Guts: toughness of character

Some of these may seem contradictory, but I feel they are in fact complementary. What do you think? Which might you “delete?” What might you add?

These qualities are powerfully captured in a short video by recently launched caregiver community platform Huddol:

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Advocacy, Toward better care, Videos

run for your life!

This video by rock band Foo Fighters hits the nail on the head.

It captures in words, music, lyrics, intensity, and visuals what I imagine underlies the “challenging behaviours” of many people who live with dementia in LTCFs, the conditions of many of which would make anyone want to escape.

I wonder if the idea was perhaps sparked by this creative video advertisement called Breaking Free developed on spec for and ultimately rejected by running shoe makers (it subsequently went viral).

I love the lyrics in particular. Oh, and of course the escapees…


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Advocacy, Life & Living, Resources

8 principles of high-quality care and support that people who live with dementia and people who don’t live with dementia all deserve

Who knows better what they need to live with a disease, a condition, a problem, a challenge, a difference than those who live with it?

Nobody, that’s who.

The World Dementia Council (WDC) is an international charity. It consists of 24 senior experts and leaders drawn from research, academia, industry and NGOs in high-, low-, and middle-income countries, and most important, it includes two leaders with a personal dementia diagnosis.

In May 2017, the WDC published a Global Care Statement Calling For More Care and Support For People Living With Dementia. This is what it said in part:

“All persons affected by dementia – those living with the diseases that cause it, their care partners, and their family and friends – have a right to receive the highest quality care and support possible to meet their needs. They have the human right to be treated with dignity and respect. And they are entitled to full and effective participation and inclusion in society. These rights transcend national boundaries and cultures.”

The statement included eight principles of high-quality care and support, the short forms of which are listed below, and which, in my view, apply to everyone, not just people who live with dementia. I’ve put brackets around the bits that could be taken out to make this principles universally applicable:

1) Individuals receive a timely and accurate diagnosis; and are told of that diagnosis
2) People [living with dementia] are entitled to respect and dignity
3) Communities are inclusive of people [living with dementia]
4) Care is person- and relationship-centered
5) The provision of person-centered care is based on continuous assessment and individualized care planning
6) People [living with dementia and their care partners]  are involved as active participants in [their own] care planning
7) Medical and care professionals have adequate knowledge [of all aspects of dementia]
8) Care coordination and collaboration occurs between all care providers

Equally important is the WDC statement below that calls for collaboration between all those involved in care whether they be “professionals,” family care partners, or other care providers. I particularly like the fact that monitoring and evaluating care and support is specifically mentioned as I feel this is the only way to stop the neglect and abuse of people who live with dementia in their own homes as well as in long-term care facilities.

See the WDC care statement and a more detailed explanation of each of the eight principles here.

The principles also express the need for medical and care professionals to be knowledgeable of all aspects of dementia and to work across disciplines to ensure a holistic approach to disease management; and for care coordination and collaboration to occur between all care providers, including in monitoring and evaluating the care and support provided. Yes. All of that makes sense to me.

Bravo WDC for identifying what people who live with dementia deserve, and what the rest of us who don’t yet live with dementia deserve as well!

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Family, Inspiration, Life & Living, Love, Real life

out of the mouths of babes come dementia truths

Thanks to Leah Bisiani of Uplifting Dementia for sharing an encouraging story from Australia about a program there called Kids4Dementia. Her post on Linked in brought me to a story that made my heart sing. It said things such as:

“Attitudes and habits are notoriously difficult to change. Rather than waiting for [attitudes about dementia] to become entrenched, we decided to try to create them proactively among today’s children.”

The article included this touching video, which includes the young girl and the quote above at the very end:

It went went on to describe stuff we should be trying to achieve with adults as well as children to lessen the stigma around Alzheimer disease and other related dementias:

Kids4Dementia is a multimedia dementia education program for primary schoolchildren.

Through an engaging animated story, real-life videos and fun activities, 10 and 12-year-olds learn that a person with dementia is still a person, and not someone to fear, laugh at or ignore.

Students learn how it feels to have dementia or live with someone with dementia, discover activities they can do with a person with dementia and how visits to care homes can be fun. Students also learn how to reduce their risk of developing dementia in later life.

Kids4Dementia [was piloted in] three schools in Australia. The teachers loved it, the students loved it, and importantly it worked. Kids4Dementia statistically improved students’ attitudes about dementia.”

Yay Kids4Dementia! Here’s hoping you go worldwide.

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Advocacy, Antipsychotic drugs, Life & Living, Memories, Real life

the shame belongs to someone else

A friend took the picture above of Mom and I on August 16, 2009, a couple of years after Mom was found to have Alzheimer disease. At the time, Mom still lived on her own, with her cat Pia Roma, in the big red brick house on the hill. It would be another two years before I moved back to Canada permanently to take care of her.

When the pic came up as a memory prompt on Facebook a year and a week after Mom died, I re-shared it because we are so beautiful and joyful in that moment. That post elicited this comment from Diane (not her real name), a FB friend who had known Mom when they were both active in the ladies local golf “circuit:”

“Susan, this is a beautiful photo of your mom (and you), and it is how I want to remember her and probably how she wants to be remembered. She was such a gracious and elegant lady!”

I’m sure Diane’s intentions were good, but her comment raised my hackles. What right does she have to weigh in on what I choose to share or not about my mom? 

Diane followed with an email:

“Susan, the main reason I wrote is also that your mom was so proud and self-conscious of her looks, always ‘coquette’, was always beautifully turned out, but when I look at some of the photos you shared on FB when her Alzheimer Is advanced, not much life in her soft eyes, then sometimes the ones where she is bruised, I think to myself, this is not something she would have wanted shared or people to view her like that.”

My hackles rose even further. I took a bunch of deep breaths, and composed an email in reply.

I wrote about how Mom was there when I was born, and how I was there when she died. I knew her for 60 years; she was my mother. I knew her better than anyone. I didn’t just see her style, grace, pride, pizazz and ferocity every now and again, I experienced it for decades. She taught me how to be in the world. I lived inside her for nine months. She still lives inside me.

I wrote about how I struggled for a long time trying to decide whether or not to post “ugly” images of Mom on my blog. She wasn’t one to air her dirty laundry in public. Hell, she didn’t tell me my father had tried to commit suicide until four months after the fact, and she never told her closest friends.

I wrote that, on the other hand, Mom was a fighter. If she believed something was wrong, she was a pit bull, an effective organizer, and a relentless advocate. She made her voice heard, she wasn’t afraid of anyone, and she didn’t give up. And she was always especially kind to the elderly.

I wrote that after months of soul searching, I decided it was more important for the truth to be known than it was to worry about appearances.

Then I didn’t send the email.

Because Diane is right.

Every time I post an “ugly” picture, I feel sad and torn. Sometimes I feel like I’m going to be sick. It’s hard every single time because it’s true, Mom probably wouldn’t want to be remembered like that. And I don’t want to remember seeing her that way, the way she is in the ugly pictures and videos. I don’t want to remember not being able to do anything to make it better. To bear witness to what happened to her every day was excruciatingly painful. Each time I post a picture or a video or a conversation, I feel that pain. Lots of times I weep.

Yes it’s true, Mom probably wouldn’t want to be remembered like that. Nor would she have wanted to live the way she was forced to live for the last four years of her life. She hated taking drugs. She loved to be on the move. It was cruel and inhumane to chemically and physically restrain her. She didn’t deserve the treatment she got, and neither do hundreds of thousands of others who endure the same and worse.

It’s important that the public be made aware of what occurs much more frequently than people think in hospital wards, long-term care facilities, and behind the locked doors of memory care units. I want everyone to see the reality of what happened to my mother, difficult though it is for me to share it. Because this should not happen to vulnerable elderly people. It’s just plain wrong.

Alzheimer disease did not cause the lack of expression on my mother’s face or the bruises on her body; the antipsychotic medications she was given did. Drugs she was inappropriately prescribed for behaviour that was a response to unmet needs, the environment she lived in, and the way improperly trained staff approached her produced the ugliness I captured in pictures and audio/video recordings.

I was powerless to change Mom’s situation, and it’s too late to help her now; she’s gone.

But it’s not too late to help others, and ultimately it’s also not too late to help my future self should I also develop dementia and require care. I post the ugliness I would really rather not share because sweeping it under the carpet would dishonour my mother more than showing the truth of what happened to her does.

The shame of her bruised face and vacant eyes belongs to those who sedated her with drugs and neglected her care. Dementia was not to blame. And the shame doesn’t belong to her. Or to me.

If she were here to advise me, Mom would tell me to do what I believe is right, and not to pay attention to what people think or say.

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Care Partnering, Family, Inspiration, Life & Living, Love, Real life

when love is a stranger

When I saw Scott Taylor’s post, I had to ask if I might share it, and I was grateful when he agreed. Scott’s mom, Debbie Taylor, was diagnosed with dementia a few years ago. Her drift into it was gradual but constant, he says. Now she thinks he’s someone else. Here’s what he wrote about that:

August 24, 2017: After today’s visit with my mom, I was particularly reflective when I left. More so than normal. Some days are better than others and it’s definitely hard for me to see her like this.

She still doesn’t know or believe I’m her son. The dementia has made sure of that. But her relationship with the stranger she thinks I am is getting stronger. Heck, it’s a full-blown friendship now. She remembers details about my life, asks me how my business is doing, how things are going with writing. She hugs me and seems excited to talk to me.

You see, my mom and Steve Holcomb (the name and persona she has given me in her mind) are actually becoming quite close. We laugh, keep each other updated on life and just shoot the breeze in general. Sometimes that’s the best you get in a situation like ours. And you know what, that’s alright with me. It’s okay she doesn’t know my name. Because I think she feels my love. And that’s much more important.

All I can do is all I can do, and that’s to love her as the stranger she thinks I am. So that’s what I do. And I trust it’s enough for right now.

If you feel distressed because someone you love with dementia doesn’t recognize you, you might find these posts helpful: 20 great question to ask when a loved one with dementia doesn’t know you anymore and it doesn’t matter if they know you or not.

Scott Taylor is the founder and creative director of Colorpop, an art and design firm based in Tulsa OK.

He also is a writer and speaker, traveling around talking about empathy, vulnerability and developing emotional literacy.

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Care Partnering, Interviews, Tips, tools & skills

alzheimer’s speaks’ lori la bey and i agree on the beauty of dementia

It’s hard for many people to believe any good can come from dementia, but those of us who have experienced transformation during the process of being a care partner to someone who lives with dementia know it to be true, and are immensely grateful for the rare gift we’ve received.

Fellow advocate Lori La Bey and I both experienced a kind of spiritual awakening during our time as care partners to our mothers. We touched on what that deep connection felt like to us when I was a guest on her popular online show AlzheimersSpeaksRadio.

Here’s a two-minute clip related to that part of our conversation:

During the hour-long show, we also talked about family dynamics, antipsychotic medications, transforming perspectives, and my BANGS model to help stop anxiety and aggression (watch the free BANGS webinar here).

Listen to the full show here.

More AlzheimersSpeaksRadio here, and more on Lori and her work here.

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