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:
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.
The universe’s messengers come in all shapes, sizes, colours, forms, genders, and ages. They may be living beings, forces of nature, or inanimate objects. They could be deaf, dumb and blind, ten feet tall and/or incredibly small. Some dance. Some are as vast, and deep as the ocean. Others twinkle like the night sky.
I stumbled upon one playing the fiddle on his parents’ porch in Almonte, Ontario, on June 16, 2018, at about 4:15 p.m.
Actually, that’s not quite true. One rarely “stumbles upon” a messenger from the universe, although it may indeed feel random to either or both the messenger and the “messengee” if their intuition isn’t fully switched on. But the universe’s intentions are clear, and its delivery is unmistakably deliberate and obvious when one is paying attention, which I was, as usual.
I had planned to attend a prior PorchFest de Mississippi Mills session at 3 p.m., but I lay down for a 10-minute nap and overslept. I awoke just in time to make it to 17-year-old Alexander George’s performance, one of several taking place around town at 4 p.m., but I was delayed when I stopped to talk to a stranger along the way to Alex’s gig. He was playing on the porch of his family home, which, coincidentally, is five doors down and across the street from the little house I had just purchased two days before.
As I strolled past my new place, I wondered if I had made the right decision. Two weeks later, I would abandon Quebec’s Eastern Townships, where I had spent my childhood, and which had always been “home” no matter where I travelled in the world. Mom had lived in the big red brick house on the hill on the Georgeville Road for 40 years, and had died not far from it in August 2016. Will she know where to find me after I move? I was full of grief at the prospect of leaving her, even though she was already gone. I tried hard to release my sadness. Enjoy the afternoon. Don’t spoil it with dark thoughts. My positive self-talk produced mixed results.
Two young girls were selling muffins and lemonade beside the Georges’ house. I bought a drink, and gave them a .50-cent tip. Their eyes grew wide. “Thanks!” they said in unison. I meandered down onto the sloping lawn where people were gathered in small groups under the shade of trees and large bushes to take the edge off the heat. I sat down alone on the grass. Alex began to play what must have been the third or fourth song in his set. The Tennessee Waltz. Tears sprang to my eyes, and streamed down my cheeks. Had they known in advance they would be called into action? Luckily, a lady sitting not too far away had tissues.
I first heard The Tennessee Waltz when Eric played it for Mom one afternoon in early 2014. I fell in love with the tune on the spot. Mom knew all the words of course, and I learned them quickly enough. How many times had we sung it together? Dozens. She beautifully, and me badly. It was one of our favourites.
Two-thirds of the way through Alex’s captivating interpretation, I somehow found the presence of mind to pull out my iPhone and push record.
Here’s a full version from Alex’s first (and undoubtedly not his last!) album, just as he played it on the porch accompanied by piano:
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Dr. Elaine Eshbaugh writes a warm-hearted, funny and insightful blog Welcome to Dementialand, which I’ve quoted before.
The common sense advice above is taken from her post “Time Management in Dementialand;” it caused me to reflect on strategies and tools we may use as care partners to engage our care partners who live with dementia, stay connected and reduce our own stress.
1 ) Take a walk
There’s no downside and multiple upsides to exercise, particularly walking. It’s a great stress reliever for anyone, living with dementia or not; it helps maintain health, gets you out of the home and into a different space. More activities here.
2 ) Go with the flow
Those with severe memory loss live in the moment – they may not recall the recent past or be able to anticipate what comes next. The environment and people around them must draw them in and simplify their interactions with the world. More about going with the flow here.
3 ) Don’t argue or correct
I spent years arguing with my mother and exacerbating no-win situations before I became aware that debate only created more anger and angst. By arguing, I became the cause of her “bad behaviour.” It wasn’t the disease, it was me; it wasn’t her fault, it was mine. More on that here.
4 ) Listen fully
Listen with more than your ears. Use your eyes, your heart and your mind. Learn to look behind behaviour to discover what a person with dementia is trying to communicate by their actions. Listen to their behaviour–it may say a lot more than their words ever will. More on this here.
5 ) Be quiet
I spent countless hours with my mother holding hands, watching birds at a feeder, looking out at a field, simply being together in silence. Quiet times can be as engaging as activity, and silence provides space for possibility if you let it. Remember the “pregnant pause?” More on this here.
6) Put yourself in their shoes
There’s nothing like seeing things from the other person’s perspective to increase understanding and connection. There are tools to help with that here and here.
7) If something doesn’t work, try something else
It’s useful to have multiple strategies and tools at the ready to manage different sets of circumstances and events, any one of which might work or not at any given time. For example, music might help someone to feel calm today, but baking cookies might do the trick tomorrow. Music might be effective again the day after tomorrow and the following day, but not the day following that. Flexibility and creativity are important.
March 27, 2018: One thing I remember is how she knew I was there, even if her back was to me as she walked down the hall. I would stop about six feet away, and she would stop too, pivot first if she were walking in the other direction, or just look up if she were walking toward me. That was before she couldn’t walk anymore because of the drugs.
As soon as she saw me, her face transformed. Her eyes widened, her eyebrows lifted, the start of a smile skipped to her lips my darling. That’s what she used to call me. My darling. The death mask fell away, and my mother was resurrected. She stood, a flesh and blood statue in the narrow grey-white hallway, shimmering with a burst of vitality that was surprising for her 85 years, more so because of the advancing state of Alzheimer disease.
I see her as clearly as if she were in front of me this minute: feet firmly planted, body stooped, leaning forward a little, knees gently bent, elbows setting forearms at right angles to biceps, one of her hands, or maybe both, holding something, a tissue, or a paper cup perhaps.
She would have been on her way somewhere. Her destination unknown. Even to her.
But when she sensed it was me, wherever she’d been headed didn’t matter anymore. She’d pause. I’d wait. Wait for full recognition to dawn in her mind just as immediate recognition had flooded her body. I’d wait without words, giving her brain all the time it needed to remember what her heart and soul knew instantly and instinctively.
We danced like that dozens of times in the narrow grey-white hallway, sometimes for a short time, sometimes for longer before she exclaimed to anyone within earshot: “There she is!” As she spoke, she straightened as tall as she could, her voice strong and confident: “There she is! That’s my daughter. That’s my daughter, Mary Susan.”
And so I was. Her daughter. In that narrow hallway in which neither of us ever would have wanted to be standing, and yet in which we found ourselves bound and connected in ways neither could also have never predicted.
I remember that one encounter repeated dozens of times. Each time a blessing. Each time a deep rediscovery. I wish I had a picture of her like that, other than the one seared into my mind, heart, and soul. I wish I had a picture, or a video, so I could show you, and you could see, how she was. Alive.
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When I find a gem, I love to share it. So here’s an introduction to Dr Elaine Eshbaugh’s warm-hearted, funny and insightful blog Welcome to Dementialand.
I’ve extracted five thought-provoking quotes from her post of February 5, 2018, entitled “The Importance (or Lack of Importance of Memories in Dementialand,” which made me chuckle as well as tear up when I read it. One of the five quotes I lifted is pictured above; here are the other four:
“It didn’t matter that what she said made little sense. I will take an illogical and positive conversation over a logical and negative one anytime.”
“I don’t believe anything is ever lost–because it happened. And it shaped our life and the lives of those around us. Forgetting what happened doesn’t negate that.”
“When you don’t recall your past and you don’t have the foresight to think about the future, you reside in the present. And sometimes I am amazed at the joy to be found there.”
“I am in awe at how much people still have to give when their memories fade.”
It saddens me that so many people concentrate on the memory loss associated with Alzheimer disease and other forms of dementia, instead of on the joy that may be found in connecting with the person and the capacities that remain.
If we all just shifted focus slightly, dementialand would be a far better place for those who live with ADRD, as well as for those who accompany them.
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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 59th, 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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December 26, 2017: In November 2012, I put Mom and her best friend Pia Roma in separate prisons.
Pia went to the friend of a friend’s where she hid under the sofa in a cigarette-smoke-filled apartment for a month. My friend rescued Pia from her friend’s, but that didn’t help. Pia hid under my friend’s bed for another month until I rescued her again.
Mom & Pia April 10, 2012, six months before being incarcerated
I didn’t want a cat. Just like I hadn’t wanted to return to Canada to care for Mom in 2011. But I couldn’t bear for helpless Pia who, in Mom’s words, was her “best friend” to live under a sofa or a bed for the rest of her life. So when I decided I needed to stay close to Mom instead of restarting my old life in a new way, I rented a house near the nursing home I would come to call “ElderJail,” and I brought Pia Roma to live with me.
Since then, Pia has accompanied me through ups and downs, never saying anything but “meow” (like Zlateh the Goat said nothing but “maaaaaaa”), or purring loudly, and sharing my morning tea as she often did with Mom, which I captured on video on December 28, 2009, and aptly title “the paws that refreshes.”
But none of us should die before we’re dead, and so, in the meantime, Pia and I paws frequently to count our blessings. We hope you do too. We also invite you to remember that, even in prison, there is space between the bars.
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October 8, 2017: Mom’s faux fur coat has been hanging in an upstairs closet for five years. I’ve never worn it. I’ve had several boxes of her clothes under my bed for about 18 months.
Last week, the daughter of a friend called to say she is collecting household goods and clothing for a Syrian family arriving in Canada at the end of the month. She could pick up anything I might want to pass along to them on Thanksgiving weekend, she said.
What good are Mom’s clothes doing anyone under my bed? That heavy coat could be keeping someone warm instead of hanging useless in a closet.
It seemed like the right time to do the right thing. As always, the right thing is not the easy thing. This poem is about that, and the fabric of our lives.
September 11, 2017: Mom had a great sense of humour. She spent more time laughing than she did crying, although of course like all of us she did both. After she went into what I would come to call “elderjail,” I often brought her to my place for lunch, or dinner, or healing music sessions with Eric.
On this particular day, September 11, 2014, we made a mid-day meal together. I must’ve had some bananas, or maybe some tomatoes from the market sitting on the counter because there were fruit flies in the kitchen. Mom and I got to laughing about the “flute flies,” where they might’ve come from, and what we might do with them. On the spur of the moment I pulled out my iPhone, as I often did, and recorded a “selfie video.”
While September 11 is remembered as a tragic day by many, and rightly so, I recall it with a smile because of the flute flies and the love taps Mom planted on my wrist thus causing my hand to shake, iPhone and all…
My Alzheimer's Story 