Care Partnering, Challenges & Solutions, Toward better care

7 ways to transform dementia care grief and suffering into joy and healing

Are you a dementia care partner who lives in a world full of grief, loss and suffering? What if you didn’t have to be in that dark, depressing place? What if you could transform your suffering into healing? What if you could release your feelings of grief and loss?

Moreover, what if changing your world was simply a matter of changing your perspective? Would you choose to do it?

When I chose to reframe the way I saw dementia and the people who live with it, I completely changed my experience as a care partner. Others have done the same. Here’s an excerpt from an email I received from FK, a long-time follower of


I really need to thank you so so much for changing my perspective on what was happening to my parents as they both lived with dementia. I have responded to your blog from time to time, mentioned that I was caring for my parents, both of whom had Alzheimer disease, and shared my experience about being with my sister when she died when your mom was approaching that point.

I had moved to [Some Little Town] from [A Big City] in 2011 when my parents began to lose their abilities to live independently, and I eventually became a full-time care partner.  For the first few years after I noticed the first signs of memory loss, I was stuck in that  intense grieving phase and could only see the losses and mourn what felt like my parents disappearing before my eyes.

But after discovering your site/blog and following it, I gradually learned to see that they were still there, still my parents, still loving and able to share many things with me.  My focus changed from mourning each new loss and grieving what lay ahead in the future, to living with them in the moment and trying to share as many moments of joy as possible.  That made a world of difference.  I was able to love them and keep sharing laughter and love until they died (my dad on April 02nd, 2017 after a long, slow decline and many false alarms; my mother very unexpectedly the very next day, April 03rd, 2017.  Thanks to you, I look back on those years as, in many ways, a happy time despite all the difficulties, frustrations, fears and tears.

I lost a legal bid to get control of my mother’s care in February 2014. Shortly thereafter, I launched I wanted to share my journey and learnings as a care partner, and help others avert some of the challenges and pitfalls I had faced.

As I learned more about Alzheimer disease and other illnesses that cause dementia, I also came to realize we can radically change our experience of dementia and the people who live with it by reframing the way we see it and them. Helping people transform their experience from suffering to healing has become an integral part of my advocacy–one that’s working as FK’s email demonstrates!

Here are seven ways you can reframe and change your dementia care experience:

  1. Focus on what remains rather than what has been lost
  2. Look for potential rather than staying stuck in deficit
  3. See the person, not the disease
  4. Understand that people who live with dementia are still people, not “empty shells”
  5. Understand that people who live with dementia have the same needs we all have
  6. Create opportunities to experience joy and happiness
  7. Find things to laugh at instead of things to cry over

I did it. FK did it. You can do it too.

17 links to the “other side” of dementia

do you see what i see?

3 excerpts from the best article on dementia i have ever read (and a link to the full meal deal)

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Life & Living, Love, Memories, Music, Videos

singer songwriter jay allen holds on to his mom

Nashville country music artist and songwriter Jay Allen’s mother has early onset Alzheimer disease. He wrote about it here, and he sings live about it in his song Blank Stares in the video shared by a fan on the Facebook post below:

And here’s the studio version from YouTube:

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Death & Dying, Life & Living, Memories, Tips, tools & skills

what do you say to people living with dementia when someone they love dies, or when they ask about someone who is dead?

Online care partner groups are supportive environments where family members who care for people they love who live with dementia ask and get answers to all kinds of questions. Sometimes the questions, such as this type, are heartbreaking:

My mother has Alzheimer’s disease, and my father is terminally ill with cancer. His time is very short now — only a matter of days. I’m worried about what I should say to Mom about Dad’s death. How do we tell her about his passing? We figured we would take her to the funeral home for a private visitation, but not keep her there for the visitation or funeral. What do we do after he’s gone and she asks about him? Do we break the news to her over and over? Or keep changing the subject when he comes up?

Experienced family care partner and USAgainstAlzheimer’s FB group moderator Jessica Price-Parrott answers this kind of question with excellent advice:

“My mom and grandmother were each other’s everything. Once my grandfather died my mom was her helper, friend, caregiver, and protector. My mom lived just two blocks away and really met all of my grandmother’s needs. Fast-forward fifteen years to when my mother was diagnosed with Alzheimer’s. My grandmother watched the disease progress in my mom. My grandmother passed away first. At this time my mother was in a memory care facility. I did not take my mother to the viewing, and I did not tell her that her mother had died.

I think this is extremely situational. You really know your mother best. I chose to not tell my mom because her brain would not allow her to grieve like you or I.

I know some people who tell their loved ones with dementia and that’s that. The person who is living with dementia never asks another question about it. Others ask over and over again, and grieve every time they are told the person they love is gone.

At first I thought my mom needed to know, it was her mother, she deserved the truth, and it wasn’t fair to her for me to not be honest. The more I thought about it though, the more I felt that telling her wouldn’t be fair because her thought process wouldn’t allow her to grieve in a healthy way.

When Mom asked how her mom was I would say she was fine and well taken care of. I figured that wasn’t a lie. God was keeping her safe.

As Mom lay dying she opened her eyes and looked at me. It was then I told her that her mom was waiting for her. I smiled, and loved her. She closed her eyes, and passed away peacefully.”

My mother and grandmother were also very close. When Mom asked about her mom, or her sisters (all of whom were gone), I told her they were happy and peaceful.

Also like Jessica, I was at my mother’s side when she died. During her final hour, I repeatedly said the same thing to her: “Gran is waiting for you Mom. It’s okay to go. She’s waiting for you.”

I know Mom heard me, and I’m sure it comforted her as much as it did me.

dying with my mom

10 normal ways care partners express grief

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Image copyright: bialasiewicz / 123RF Stock Photo

Death & Dying, Love, Spirituality

3 wise thoughts on being with someone you love as they die, which also apply to being with someone with dementia as they live

In the three short videos below palliative care physician Dr. Mike Harlos gives advice aimed at other palliative care doctors and nurses. He talks about how to communicate with family members as someone they love approaches death.

But I think there’s something for all of us learn from his gentle wisdom on how to interact with those who find themselves at the side of someone they love as that person dies. It also struck me that what Dr. Harlos says applies equally to people who live with dementia who many others think are “gone” long before the actually are.

In these three short videos (each is less than three minutes long), Dr. Harlos shares simple pieces of practical advice with respect to communication:

  1. Assume they can hear you
  2. Take it out of the room
  3. Make space for final conversations

I invite you to watch and listen, and hope you will be as deeply touched by Dr. Harlos’s words as I was/am. Just listening to his voice at once calmed me, and brought me to tears. As I watched the videos, I  felt as if I were in the presence of an angel, albeit an earthbound one for the moment. I might have made the experience of dying with my mom more beautiful and meaningful had I been exposed to the Canadian Virtual Hospice before her death instead of after.

1 ) Assume they can hear you

Conversations at the bedside: Can my loved one still hear me? from Canadian Virtual Hospice on Vimeo.

2 ) Take it out of the room

Conversations at the bedside: Being mindful of what is said from Canadian Virtual Hospice on Vimeo.

3 ) Make space for final conversations

Giving space for final conversations from Canadian Virtual Hospice on Vimeo.

I wrote a poem about my final moments with my mom; it’s here.

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Image copyright: bialasiewicz / 123RF Stock Photo

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

if only they had listened to ciaran

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.

Two days before Phyllis passed.

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.”

Phyllis Cranfield, Easter 2017.

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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Care Partnering, Life & Living, Memories, Real life

how mickey mouse keeps viv & gregg’s love alive

Thanks to Gregg Viall for this touching story about his wife Viv, himself and Mickey Mouse.


One night, at the beginning of our journey with Alzheimer’s disease, my wife Viv was crying uncontrollably, devastated by the prospect that one day she might forget who I was. I tried everything I could for a good hour to stop the flood of tears and to get her to relax. Nothing worked.

Then I had a brilliant idea.

“I’ll get a Mickey Mouse tattoo so you’ll always remember who I am,” I said.

“Really?” she said. She immediately stopped crying, and embraced me.

“As God is my witness,” I replied.

Viv & Gregg & the watch

Ironically, Viv and I met at a divorce recovery workshop in 1991; I was going through one, and she was supporting a friend. She and I became friends in turn, and about a year later we went to Disneyland on our first date. I guess that sounds kinda hokey, but we had a great time. I knew then that we were perfectly matched.

Two months later, Viv gave me a Seiko Mickey Mouse watch for my birthday. We laughed when I opened it. I still wear it every day. It’s the only watch I own.

You’ve probably guessed by now that I’m not the sort of guy who would go for tattoos–I’m more like what they used to call “preppy.” But I do keep my promises, and I did get Mickey Mouse tattooed on my left upper arm, like I told Viv I would.

Fast-forward to Easter Sunday 2016, four years after she’d been so worried about not remembering me:

Viv and are sitting on the sofa watching a DVD, some TCM movie no doubt, they were her favorites–Barbara Stanwyck in particular. Out of the blue, she asks me to pause the movie. She turns and looks at me.

You’re so nice,” she says. “But who are you?

I feel as if a freight train has ploughed into my chest, and the force of the blow kills a part of me. I hide the pain for Viv’s sake, and, without a word, I roll up my shirtsleeve to reveal Mickey.

Gregg’s tattoo

Viv examines the tattoo, traces the outline with her finger, and then looks at me for a split second before tears begin to roll down her cheeks.

“You’re Gregg,” she says. “You’re my husband Gregg.”

Then she grins, and gives me a bear hug the likes of which I haven’t had in years.

Numerous times after that, when I felt she needed reassurance, I’d roll up my sleeve like I did that Easter afternoon and show her the tattoo. I even bought several t-shirts with Mickey emblazoned across the front, and a couple of baseball caps as well, because they helped me stay connected to Viv.

Towards the end, when I’d ask her who I was, she’d say: “Mine,” and that was good enough for me. Viv and I remained bound together in a deep and meaningful way right up until the moment she passed. Dementia never got in the way of our love, and after 25 years that watch means more to me than ever, especially now that Viv’s not by my side anymore.

Viv doesn’t need the tattoo to recognize me now; she can see me as clear as day from where she is, and she knows exactly who I am. As for me, I look at Mickey from time to time in the mirror. He reminds me to take whatever I get and make the most of it because no matter how odd or how small a thing is, there may come a day when it’s all I have.

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Image copyright: bukki88 / 123RF Stock Photo

Care Partnering, Challenges & Solutions, Real life

this is for jane, and maybe for you too

There’s a woman I’ve never met on the other side of the world. Her name is Jane (not really, but let’s pretend); we connected online through the mutual friend of a friend’s friend.

Jane’s partner, let’s call her B, lives with dementia; Jane has been her 24/7 care partner for several years already. Jane has had little if any outside support caring for B, which has been relatively easy until now. Relatively. But now? Not so much.

Like many dementia care partners, Jane didn’t realize the toll her care partnering role was taking on her until things recently ramped up a notch a notch or two. Hers case is like the metaphor of the frog in the saucepan. Thousands upon thousand of care partners out there at this very moment are like so many frogs in so many saucepans on so many stoves with the heat on low. But back to Jane. Now, because she’s exhausted, and has few energy reserves, Jane’s patience is wearing thin. Very thin. Thin as the skin on the back of an elderly hand.

Sensibly, Jane is reaching out for help. But help is in short supply. The system, what little there is of it, is broken in Australia where Jane and B live, just as it is in Canada, the UK, and the US. Friends and family members are sometimes willing and able to help, but lately, just when Jane needs more support, “sometimes” has become “rarely.” It’s not for lack of good intentions, but as we all know, the road to hell is paved with those.

I know the place where Jane is, because I’ve been there. I know the pain and the panic, the frustration and the fear. Ten months into being my mom’s primary care partner 24/7, I was breaking; I hung by a proverbial thread. I’d had a paid care worker with us from 9 to 6 five days a week for six months, and EVEN THEN, I could feel myself falling apart. Soon, I wouldn’t be able to function.

I contacted a therapist I’d seen in my twenties. We agreed to have several sessions on Skype. Whenever I had to do something for myself, or to have some “alone time,” I had to leave the house, which I could only do when the paid caregiver was there. Because all of that was a hassle, I mostly stayed in and worked in my room when she was with us, going for a walk or run or whatever when I could.  But for things like the therapy sessions, I had to go to another location. On this particular day I had escaped to a friend’s yard about three miles from home. I’d made two trips back and forth because I’d forgotten my phone, which I needed for the Skype call.

This is what the start of the session sounded like:

If you are a care partner like I was, or like Jane is, who is cracking, or even breaking, get help. Fast. Whatever you have to do to get it, do it. You won’t be any good to anyone in pieces. That’s the bottom line. Even telling your story to someone who will actually listen to it can have a calming effect. Just knowing someone else gets it (I do!), might save you.

For anyone who doesn’t “get it” because they haven’t been there, but who might be reading this post, you probably know a Jane. Or a Sally, Theresa, Heather or Bill. If you aren’t a dementia care partner, but you know someone who is, please help them. Even a little. Even a little bit counts. Don’t tell them what to do, or sympathize or empathize or stand by doing nothing. Do something. Anything to help.

Thank you.

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Care Partnering, Life & Living, Memories, Real life

beauty, magic, grief and reflections on regret

“Tears are rolling down my cheeks,” Anita’s comment began after the link to “come to mummy anyway,” which I’d posted in an online caregiver support group. Her comment continued:

“My husband Doug passed away in April 2016. He was fairly alert and able to communicate his needs, though not in complete thoughts, until about five months before his death. 
We were fortunate, he was ambulatory until about six weeks prior and only bedbound ten days before his passing

During those last ten days, he had moments when he was alert. 
He spoke to a friend about his, Doug’s, children, remembering them both by name (Lisa and Eric). 
 He recalled his precious childhood kitty, Muffy, and asked one of the hospice nurse’s if she liked her job. She smiled and said she did as she gently touched his hand.

Four days before he died he told me I was beautiful. He also told me he was afraid. Three days before he died, the doctor said he might live another three to five years. Two days before he died, he talked with his deceased grandmother; and then he was gone.

This swift end was unanticipated. I didn’t expect him to go so quickly. Gone too soon. And yet, for all the days of being lost, not soon enough.”

“The suffering is over,” Anita wrote in real time. “The memories never are. If we’re lucky.”

Now tears were rolling down my cheeks. Here we were, two women who had lost people we loved sharing our stories. Previously unknown to each other, thousands of miles apart, yet connected by loss and grief.

I responded with a link to a poem I’d written called “gone too soon.” She answered back.

“Oh my God. ‘Had only, if only, I wish,’ have passed my lips a thousand times. 
The exhaustion, frustration, aggravation, isolation seem so mundane, so trivial, so unwarranted now. At the time you’re navigating this path, emotion overcomes the reality that someone is struggling much more than you. Regret is the worst word in the English language. 
 One can recover from all other emotions: anger, hate, hurt, disappointment. We can deal with those if we choose to be brave, and mature. 
 But regret can never be undone. 
Neither can my missing him.”

I was struck by the beauty and wisdom of Anita’s words. I asked if I might share them, with a picture of Doug and herself. She readily agreed. 

Along with the images she sent, she shared other parts, joyful parts, of their life together:

“His name is Doug Nieland. He was 78 when he passed away. A retired professor at Eastern Kentucky University, Richmond, Ky. Originally from Guttenberg, Iowa. A brilliant man, with a great sense on humor. He was a talented magician – a member of the International Brotherhood of Magicians for over 57 years.

An avid nature lover, he developed amazing photography skills and captured stunning images of butterflies, insects, and then people. A complex individual with his share of flaws. But he was my biggest fan, supporter and cheerleader. We were married in 1977, and lived in Richmond. I still do.

Doug taught Therapeutic Recreation with an emphasis on aging. 
He did “all the right things:” ate healthfully, stayed mentally and physically active. 
For the first 14 years of our marriage, I ran Anita’s Bridal Boutique in Richmond.

I was honored to be named Mrs. Kentucky in 1987. Doug was so proud! 
He and the other husbands got to dance on stage with Gladys Knight in Las Vegas at the Mrs. America pageant. It was a fond memory he recalled frequently.

I later returned to college and became an Occupational Therapist. 
And, no, that doesn’t make it any easier when your husband is your “patient.” No marriage, no relationship is perfect, neither is any person on earth. Our trials are many, some wound us to the core, some teach us lessons. The lesson I take away from my and Doug’s life together is to forgive. Forgive them, forgive yourself and never forget to love. 

Overall, my life has been, and is, incredibly blessed. 
I have a daughter and two grandchildren. 
I’m healthy; I’m alive. I was raised by a strong woman, and I am one.”

The last two sentences made me smile. I reread them silently to myself. I’m healthy; I’m alive. I was raised by a strong woman, and I am one. I paused for a moment to reflect. I’m lucky to have no regrets. Then I put fingers to keyboard, and got back to work.

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Care Partnering, Love, Poetry

i am still a person by judy lauer

I don’t know Judy Lauer, but it would appear she wrote this poem about Kenny Dale Lauer, whom she clearly loves. Maybe Kenny is/was her husband, spouse, father, brother, son, or cousin; I don’t know. I tried to find her, but I couldn’t. Anyway, awhile ago she submitted this poem somewhere online and someone copied it, and… you know what happens after that.

I love the reality, sadness, grief, joy, life and hope of this poem that Judy Lauer wrote at some unknown time before today. It has the same kind of humanity I tried to capture in my own piece entitled “let me shine.”

Here’s to you kindred spirits Judy Lauer and Kenny Dale Lauer, wherever you are.

I’m still a person

by Judy Lauer 

I have Alzheimer’s, but just the same,
Kenny Dale Lauer is still my name
I may not remember who you are,
But I know you’re special, at least so far.
I cannot Speak, no words come out.
But if I could I think I’d Shout.
Sometimes I’m Sad, and shed a tear,
Sometimes its, scary and lots of fear,
Sometimes I smile when you stop by,
Even if it’s just to say hi.
I worked at Fairbanks, this I know
But, don’t you all? I do think so.
It is hard to swallow when I try to eat.
But good ‘ole ice cream is still a treat.
I drool a lot and make a mess
It’s part of this crazy disease I guess.
I wear pull ups, and I hate clothes,
and what I’m thinking, no one knows.
All the nurses and helpers too,
Know exactly what to do,
I love my Teddy and Teddy loves me,
I am still a person, and God Bless Me.

by Judy Lauer 

Note: If you know the whereabouts of Judy Lauer, please ask her to contact me. Thanks.

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Image copyright: helen575618 / 123RF Stock Photo

Care Partnering, Hope, Life & Living, Love, Videos

mama don’t forget i love you

mama don't forget I love you


I strongly believe we stay connected to those we love and those who love us across vast distances of time and space and beyond life and death.

I recall this quote from one of my all-time favourite books: “Illusions: The Adventures of a Reluctant Messiah” by Richard Bach:

“Your friends will know you better in the first minute you meet
than your acquaintances will know you in a thousand years.”

Likewise, I believe we feel connected with the souls we love regardless of whether they seem to remember or recognize us on the superficial level of this life. If you feel disconnected or sad because your care partner with dementia doesn’t recognize you, these 20 questions might help.

Marty McGill lost his mom to Alzheimer’s disease. When I first heard the tune he wrote for her it made me cry because it was so similar to my experience. I left a comment; Marty immediately replied. He wrote:

“The last 6 months or so at home she would get up throughout the night. I slept on a loveseat those months so I could wake when she came down the hall. She would be smiling, dressed the best she could manage, ready to start the day, and I would redirect her back to bed. First thing I did every morning was get her dressed and sit her by the window while I fixed her breakfast. I would put crumbs on the sill to draw the birds in. She would watch them and talk to them. I miss my mom.”

Here is the beautiful song McGill wrote about love beyond recognition and about being a care partner:



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