Family – My Alzheimer's Story

These gifts are inexpensive (they don’t cost dollars and cents, so everyone can afford them), and yet priceless (because of the fact they can’t be bought, and must be given from the heart). Even better, they can be gifted all year round!

Please consider giving one, several or all of these gifts this year (and always) to people who live with dementia in your family, your community and around the world.

Respect

You could treat people who live with dementia like the human beings they still are no matter what “stage” of the condition they are living with. You could treat them like adults, not children. You could respect their wishes, wants and desires. You could believe their lives still have value, and you could demonstrate that belief in the way you interact with them.

Love

You may have been told that people who live with dementia become empty shells. But that’s not true. They are people with rights and needs just like the rest of us, and they need to be loved just like the rest of us do. Share your love.

Time

You could give them the most precious gift of all: the gift of time. Carve out a space in your busy life and go to visit someone living alone, or someone who rarely gets visitors even if they are living in community. Once you get there, sit and stay awhile. You don’t have to do anything – just being with someone is often enough.

Understanding

People who live with Alzheimer’s disease and other dementias are widely misunderstood, stigmatized and marginalized. If each and every one of us took the time to educate ourselves and to really understand what’s going one with people who live with dementia, and what causes them to behave the way they do, we would all be a lot better off. If you haven’t already begun learning, start educating yourself now.

Compassion

Imagine what it might be like to be experiencing brain changes in which your memory and your ability to understand the world are shifting in ways that make it hard for you to navigate reality. Imagine what it might be like to experience stigma and isolation, to have other people take control of your life. Imagine what it might be like to walk in their shoes, and then give the people you interact with who are living with dementia your compassion and understanding.

Advocacy

People who live with dementia are often treated like objects, like pieces of furniture, as if they are less than human. Many are unable to speak up for themselves. We need to be their voice. We need to ensure that they are treated with dignity, and that they get the care they have a right to. When you see people who live with dementia being neglected, abused or treated in ways they shouldn’t be, SAY SOMETHING! And then keep advocating until things change.

These are gifts that money can’t buy, but that we all have the capacity to give.

Please give generously.

13+ needs we share with people who live with dementia

alzheimer annie invites you in

30 powerful things you could say to reduce anxiety and anger, and connect with people who live with alzheimer disease

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Family, Poetry, Real life

alone: a heartbreaking poem by 89-year-old lilly who lives with dementia

September 8, 2019September 10, 2019 My Alzheimer's Story

September 8, 2019: “Do you want me to read you the really sad poem I wrote last week?” Lilly* asks.

“Gee Lilly, I don’t know,” I say. “Not if it’s really sad.” I’m feeling a little melancholy myself.

“I’m gonna read it to you anyway.” Lilly has a mind of her own, no doubt about that! She and I have been playing Scrabble on Sunday nights for about year. I go to her place sometime between 7 and 8 p.m. and we play for an hour and a bit. She tells me the same stories over and over as we play, and I listen like it’s the first time every time.

Lilly is a fine Scrabble player, and I lose about as often as I win. She also has a great sense of humour, and is generally pretty positive despite her many physical challenges including spinal stenosis, which keeps her hunched over, in pain and using a walker.

I’ve come to learn quite a lot about Lilly, who will turn ninety on Valentine’s Day 2020. She has six children (a seventh died a few years ago), and ten grandchildren. Great grand twins are expected in November, and Lillly is determined to live until they’re born.

Lilly’s family members call and visit often, and although I’m not there to witness it, I’m certain at least one of them is in touch each and every day. She has other regular visitors, including me, and she goes to a full day adult program (which she adores), on Mondays, Thursdays and Fridays. She has LOTS of contact with family, friends, and support workers. But sometimes, because of her dementia, Lilly forgets about the abundance of social interactions she enjoys, and she feels lonely as we all do from time to time. When that happened last week, Lilly, who is a great poet and writer, put pen to paper.

As she read me the poem she had written, tears came to my eyes, and at the end, my heart broke with despair. Lilly gave me permission to share her poem (with a few tiny tweaks by yours truly):

alone

i haven’t had a visit
i haven’t had a call
it really seems my family
doesn’t care at all

this is a special weekend
too bad that they don’t see
i’m lonely and I feel
that no one cares for me

i’m old now and I guess
i’m a bother to them all
but oh! how I am wishing
that one of them would call

i do not like the message
their silence seems to send
it comes through loud and clear:
they wish my life would end

Please don’t forget people who live with dementia, even though they may forget you. Call often. Visit often. Hold their hands in yours. Hold their hearts in yours. Tell them you love them over and over and over again, especially when they may not remember what you have said. It means the world to every one of us, young and old, living with a disease or not, to feel we are loved.

* Not her real name.

30 powerful things you could say to reduce anxiety and anger, and connect with people who live with alzheimer disease

don’t mourn me long

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Family, Life & Living, Love, Videos

an open letter and song request for country great kenny chesney on behalf of people who live with dementia and their family and friends

August 28, 2019 My Alzheimer's Story

Dear Mr. Chesney,

I love your song “While He Still Knows Who I Am,” but would you write another one please?

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.

It really doesn’t matter if a person living with dementia recognizes us or not. We need to ask ourselves why we get so focused on the recognition part instead of on loving, connecting and being compassionate.

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.

Thank you,

Susan Macaulay
Dementia Care Advocate

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

http://handsoffmybrain.com/2018/10/are-you-my-mother

https://myalzheimersstory.com/2015/01/21/it-doesnt-matter-that-mom-doesnt-know-me-anymore/

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Family, Life & Living, Love, Videos

while he still knows who i am is beautiful and heart wrenching, but does it send the right message about love and connection?

August 28, 2019August 28, 2019 My Alzheimer's Story

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.

I was so saddened by the inference that I wrote an open letter to Kenny Chesney asking him to write another song — one that encourages friends and family members to visit people with dementia especially when those people don’t recognize them anymore.

I wonder if he will.

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

http://handsoffmybrain.com/2018/10/are-you-my-mother

https://myalzheimersstory.com/2015/01/21/it-doesnt-matter-that-mom-doesnt-know-me-anymore/

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Image copyright: dolphfyn / 123RF Stock Photo

Care Partnering, Family, Inspiration, Videos

this is what tragic brilliance looks like

June 18, 2018June 18, 2018 My Alzheimer's Story

In 2011, UK pub owner Alex Lewis somehow contracted Strep A, an incredibly rare bacterial infection from which a person’s flesh starts to eat itself. The infection attacks the limbs, then works its way inwards, through the joints, past the vital organs before finally – fatally – destroying the heart.

“I shouldn’t have survived it,” he says. “I think 10,000 people a year contract Strep in some form, and of those about 9,600 die. Then of the 400 left, only about 10 have quadruple amputations. I’m one of the lucky ones, definitely,” Lewis says in this 2016 Telegraph article.

I watched the documentary below, spellbound for an hour, as Lewis’s story unfolded starting with how the disease left him severely disfigured and disabled. Both he and his life partner Lucy demonstrate unbelievable courage, determination and loyalty throughout the several years covered in the video that focuses on hope and possibility.

While Lewis’s story isn’t about Alzheimer disease or another form of dementia, it is about love, care, caring, challenge, courage, compassion, determination, life, living, reframing and transformation, all of which are integral to the lives lived by people with dementia and their care partners.

I hope you find it as inspirational as I do.

Lewis’s closing words reminded me of what Mom told me in 2014, and what caregivers from around the world said they had learned when I asked (also inspirational):

https://myalzheimersstory.com/2014/09/07/the-main-thing-is-to-keep-going/

https://myalzheimersstory.com/2016/05/14/top-15-things-dementia-care-partners-say-theyve-learned/

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Family, Joy, Love, Music

olivia singing to her great grandmother creates a beautiful moment of love and connection

March 13, 2018 My Alzheimer's Story

Many things about the human condition are universal. Our ability to connect through music is one of them. Music is a powerful way to forge and strengthen bonds between people of all ages, faiths, races, brain health, genders, and whatever! Music, it would seem, is at the heart of our souls. I experienced the joy of music with Mom time after time and am so grateful to have learned as much as I did about its power as we lived with Alzheimer’s together.

The video clip below, of American teen Olivia Erway singing “How Great Thou Art” to her great grandmother is joyful and touching. Mom also knew this hymn, among hundreds of other songs. I was first introduced to it during the Thursday morning sing-alongs in ElderJail. I’m not a religious person, and, although I knew the words after awhile, I never did sing along to this song — kinda’ goes against my grain. That said, I appreciate the beauty of Olivia’s voice, and the power of music to build bridges across all kinds of divides.

Also, the video above reminds me of Australian Carol George singing to her “Nan.” Equally beautiful and touching.

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Care Partnering, Family, Inspiration, Life & Living, Videos

grandpa drake the dragon teaches kids about dementia

March 11, 2018March 11, 2018 My Alzheimer's Story

Some people use the stuff that life hands them to create magic and beauty, while others see only despair and tragedy. Dr. Jennifer Bute is one of the magicians.

When she was diagnosed with early onset dementia, Dr. Bute began using her experience as a carer, a medical professional, and a patient to help people understand more about dementia. She produced a series of helpful videos as well as other resources that explain various aspects of dementia; you can access them on her blog (called “Glorious Opportunity”) here.

This video cartoon, developed in collaboration with Bute’s family, is narrated by her daughter Allison; it’s perfect for starting a conversation about dementia with young children:

The Dragon Story – Full HD from Kreativity on Vimeo.

Download the resources and discussion PDF that goes with the video here.

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Family, Joy, Life & Living, Memories, Real life

born again, just for fun

January 28, 2018 My Alzheimer's Story

The telegram my father sent from Vancouver, where I was born, to my maternal grandmother in Montreal to tell her of my arrival on January 28, 1956.

January 28, 2018: I celebrated 60 birthdays with my mom — sixty-one including the actual day I was born, on which my father sent the telegram above to my maternal grandmother. Since Mom’s death in 2016, I’ve marked two birthdays without her physical presence. Even when she was here, we weren’t always together in the same space or location to mark the day she gave birth to her first child, but we connected somehow by phone or by fax when we were continents apart. That’s not possible today.

But it is possible to share some of the joy and fun she and I experienced on two of the last birthdays of mine we lived before she died. We laughed and sang and had wonderful times despite the fact that Mom lived with Alzheimer disease, and despite the neglect and abuse she suffered in ElderJail. Was life easy? No. But it was a lot easier than many others have it. Could things have been better? Yes. But we made the best of it. Should things have been different? Yes. And that’s why I’m a dementia care advocate.

But back to birthdays.

On January 28, 2015, my 59^th, Mom was in an usually good mood when I arrived to visit. I had no idea why she greeted me with laughter, but I went with her flow, and we giggled together. I told her it was my birthday, and we joked about how amazingly well I had turned out 😛 (the “slapping” sound is Mom giving me “love taps”):

We liked to joke like that, and have a laugh at our own expense.

On January 28, 2016, after I had fetched Mom from her room, I stopped to convey my wishes to one of the residents whose birthday I shared. On the day I turned 60, she turned 100. In the three years since Mom had been there, I had never seen Mrs. A out of bed or awake. But there she was sitting in a wheelchair in the kitchenette across from the elevator that would take Mom and I to the first floor. There were three balloons tied to Mrs. A’s chair. I stopped to wish her happy birthday. Mom understood every word I said to Mrs. A, and she applauded her centenarian co-resident’s longevity. Then Mom and I got on the elevator, and together we sang She’ll Be Comin’ Round the Mountain on the way down to tea:

There’s no doubt I will have celebrated more birthdays with my mother than without her by the time I die, unless I live beyond 120, which seems unlikely at this point! No matter how much I may have wanted it to be different at certain times in my life, there’s no doubt that we too are one.

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Death & Dying, Family, Real life, Toward better care

if only they had listened to ciaran

November 30, 2017November 30, 2017 My Alzheimer's Story

Phyllis Cranfield with her grandson, whom she saw for the first time on October 25, 2017, eight days before she died of a UTI.

Phyllis Cranfield was born in Ireland in 1931, and moved to England in late 1968; she birthed her son Ciaran in 1969, a daughter followed in 1973. Phyllis Cranfield died on Thursday November 2, 2017, after medical staff ignored the alarm bells Ciaran had rung over the previous several weeks.

Ciaran knew there was something wrong with his mom, just like I did on multiple occasions during the four years Mom was in “care.” But the medical powers that be didn’t listen to Ciaran, just like they didn’t listen to me. Ciaran posted his story in a caregivers group on FB, and gave me to permission to repost it here.

“Thursday November 2, 2017: My Beautiful Mum Sadly passed away today not from this horrible disease, but from the lack of care at NGH where they refused to listen to me when I said she had a UTI. Instead, they blamed her poorly condition on her dementia. Three weeks ago, they said she was medically fit and they discharged her.

The very next day I had to call the ambulance to take her back to the hospital. She was diagnosed with a UTI, and was also badly dehydrated; she was re-admitted. She seemed to be recovering well, and then on Saturday I noticed something was wrong. She was clearly ill. I alerted the staff.

Again I was ignored. On Monday I got a call saying to get their ASAP and was told her heart rate was 188bpm and they were trying to bring it down before they moved her to the heart centre later I was told she had sepsis and they were giving her strong antibiotics, but sadly it was to little to late and she passed away at 12:50 pm today. R.I.P Mum love you always

Thursday November 3, 2017: Further to my post yesterday about my Beautiful Mum passing I collected the death certificate today and the cause of death wasn’t sepsis like I was told yesterday.

They listed the cause of death as a urinary tract infection the very thing I told them about five weeks ago it took them nearly two weeks to start the treatment, and even then they only put her on a low dose antibiotics.

My Mum’s death was so preventable. Reading this today I feel sick.

Things like this should never happen in this day and age, I know my Mum lived with dementia and of course I was prepared that one day that would take her. But I wasn’t prepared for her going from a preventable infection like a UTI.

I only wish they had listened to me.”

This is a plea to LTCF staff worldwide: please listen to the ones who know their family members best. By doing so, you will provide better care, reduce needless suffering, and save lives.

Don’t dismiss, ignore, and patronize us. Don’t restrict the times we can see our loved ones, or worse, stop us from seeing them altogether. This is a form of elder abuse.

Our advocacy is an invitation to collaborate, not an exercise in finger-pointing or blame. Care partners like Ciaran and me and family members everywhere want to work with you, not against you, to create better lives for our loved ones living with dementia no matter how long or short a time remains for them. We want them to live well until they die, and we want them to die with dignity and the least amount of suffering possible. They deserve the best from all of us.

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

out of the mouths of babes come dementia truths

September 8, 2017September 8, 2017 My Alzheimer's Story

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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Category: Family

6 priceless gifts you could give people living with dementia (and everyone else for that matter!)

Respect

Love

Time

Understanding

Compassion

Advocacy

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alone: a heartbreaking poem by 89-year-old lilly who lives with dementia

alone

alone

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an open letter and song request for country great kenny chesney on behalf of people who live with dementia and their family and friends

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while he still knows who i am is beautiful and heart wrenching, but does it send the right message about love and connection?

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this is what tragic brilliance looks like

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olivia singing to her great grandmother creates a beautiful moment of love and connection

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grandpa drake the dragon teaches kids about dementia

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born again, just for fun

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if only they had listened to ciaran

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out of the mouths of babes come dementia truths