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

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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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, Family, Hope, Humour, Joy, Life & Living, Love, Spirituality

albina takes internet by storm with joy


Albina sees herself on TV


Joyful Albina Foisy is an overnight Internet sensation.

Her son Armand took a video of her playing in the snow. It went viral. I quoted her and shared that video here.

Then Armand took another video of Albina watching herself on TV.

It also went viral.

Here’s why: Continue reading “albina takes internet by storm with joy”