For fourteen years, Vince Zangaro cared for his “Pops” who lived with Alzheimer’s disease. During that time, Vince developed a deep and abiding love, compassion and a gentleness of spirit that endeared him to care partners around the world. He shared some of his feelings on Facebook the day he and his family said farewell to Pops.
Besides being the primary care partner to his father, Zangaro is a musician and the main driver behind the Alzheimer’s Music Fest. His posts and videos documenting the loving care he and his wife Amy give Pops inspired and will no doubt continue to inspire thousands.
As Zangaro and his family approached their final days together, Vince took the time to recognize Chappie Bird, his father’s feathered friend. Here’s that Facebook post as well:
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Vince Zangaro is an extraordinary person. He’s cared for his “Pops” who lives with Alzheimer’s disease for fourteen years. During that time, he has developed deep and abiding love, compassion and a gentleness of spirit that have endeared him to care partners around the world.
Besides being the primary care partner to his father, Zangaro is a musician and the main driver behind the Alzheimer’s Music Fest. His posts and videos documenting the loving care he and his wife Amy give Pops inspire thousands.
Now, Zangaro and his family are approaching their final days together, and true to form, Vince takes time to recognize Chappie Bird, his father’s feathered friend. Here’s the Facebook post:
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“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.
This seemingly anonymous piece, which I stumbled upon quite by accident, brought me to tears.
It’s a shame how we treat the most vulnerable in our world. On the other hand, each and every one of us can make a difference and create positive change through what we do, how we behave, and what we say.
Speak out. Take action. Create change.
the old man and the little boy
anonymous
“sometimes i drop my spoon,” the little boy said
“i do that too,” the old man replied.
“i wet my pants,” the little boy whispered.
“so do i,” laughed the old man.
“sometimes i cry,” the little boy said. his voice cracking a bit.
the old man nodded. “me too.”
“worst of all,” the boy said, looking up at the old man, “grown-ups don’t pay attention to me.”
he felt the warmth of a wrinkled old hand on his own.
“i know what you mean,” said the old man.
Note: I tweaked the piece I found with the above result. if you know the name of the author of the original piece, please contact me so I can give them proper credit.
*Trigger warning:* beautiful and moving video below. Tissues recommended.
Care partners by the thousands share their joys, sorrows, challenges and solutions in Facebook groups and FB communities–it’s one way to feel connected and be supported by others sailing in similar boats. The posts are both heart-wrenching and heartwarming, often making me laugh and cry at the same time. One of Sherri Sturm’s stood out from all the others. I asked her if she would let me “go public” with it; she generously agreed.
Sherri described what took place, and shared some video clips with me:
“My mom Sharon is in the later stages of Alzheimer disease. Still, I wanted her to meet Wyatt, my 10-day-old grandson, and her great-grandson. I wasn’t sure how she would react, since she appears to have lost the ability to communicate with words. It feels like she doesn’t understand what we say to her, and she seems not to know any of us either.
Mom has always loved babies, and I thought she might enjoy holding Wyatt. I put him carefully in her arms; she immediately and naturally cradled him. When he put his hand near her mouth, I was afraid she might bite it, mistaking it for food. Instead, she kissed it gently, and mumbled to him. When I made a motion to take him back, she clearly communicated with her body language that she wanted to hold him a little longer. These were such beautiful, precious moments:
This experience showed me that we will never know what someone living with dementia at this stage really thinks, feels or understands. My advice? Don’t discount your loved one with dementia regardless of how they appear on the outside. They are still very much whom they are deep down inside. Treasure every moment, and include them in special occasions and life celebrations whenever you can. You will never regret it.”
I always feel sad when other care partners feel bad when their parent or parents who live with dementia don’t recognize them anymore. It’s a double tragedy. The adult child feels a tremendous sense of loss and grief, and those feelings cannot help but be felt by their parent who lives with dementia because the disease, which involves losses of many kinds, also increases emotional sensitivity. That is, when we feel sad, they tend to feel sad. When we feel angry, they tend to feel angry too.
I believe the ones we love and who love us always recognize us, if not on the surface, then surely at the core. This poem is about that. I hope it may bring comfort, solace and a change of heart to those who feel despair in these kinds of situations. These 20 questions may also help.
an alzheimer parent’s poem
Dedicated to the hundreds of thousands of children who feel loss and despair when a parent who lives with dementia doesn’t recognize them.
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Flashback: On a bright, crisp, sunny day in February 2012, Mom and I went to a small winter fair “in town.”
There were tents, skating rinks, barbecues, music, and lots of children. Mom loved children. I remember her telling the story of how ducks skate on frozen lakes to my two young cousins when they were little girls. The three of them snuggled in a big armchair as snow fell outside. They giggled and laughed at the thought of drakes on skates, slipping and sliding on the icy surface outside.
When we came upon the bear mascot at the winter festival, Mom grabbed his paws and “waltzed” with him to music coming from a nearby tent. As I filmed her leaving his embrace, she encouraged a pair of little girls to take her place in his arms; they were about the same age my cousins were when she told them about duck Ice Capades. The sheer delight Mom took in dancing and sharing her joy with the children made my heart burst with tenderness and love.
Here are ten lessons I took away that day:
creating space for mom to engage with life was one of the best things I could do for both of us
magic is accessible to everyone, and it’s usually free
hugs and innocence are “ageless” and timeless
small things make a big difference
small things make an EVEN bigger difference when things seems hopeless
dancing bears provide better medicine than many doctors
we are meant to be in community; we belong together
Alzheimer’s is as much a “life sentence” to love and laugh and live right now as it is a death sentence to die some day in the future. Life itself is a death sentence. Why die before we’re dead?
using technology to preserve memories is a smart thing to do
“Someone asked me the other day if I hated Alzheimer’s disease,” wrote Vince Zangaro on his Facebook page.
Besides being the primary care partner to his father, whom he calls Pops, Zangaro is a musician who is the main driver behind the Alzheimer’s Music Fest. His posts and videos documenting the loving care he and his wife Amy give Pops inspire thousands.
“I told them that for the first several years it was a battle,” Vangaro wrote on. “I realized that if I continued to hate Alzheimer’s that I would reflect that anger onto my father. I decided to build a relationship with the disease so I could continue to have one with my dad.
“It’s not like we do not get angry but anger only gets you so far. Pops and I have had a relationship with this disease going on thirteen years. To accept and not hate has made our family much more at peace. This is just where we are at in life.
“Each of us has to do what we have to to find a sense of clarity through this journey. So do I hate Alzheimer’s? No. It is a part of my father and I love him with all my heart. We accept this and don’t spend our time hating, we rather spend our time loving the moments we have.”
I went through the same kind of transformation that Vince Zangaro describes here. Although he was in his early thirties and I was in my late fifties when it happened, I discovered the same truths that Vince, Amy and Pops did. There’s no point hating Alzheimer’s disease or other dementias. It’s so much more sensible, productive and enriching to spend your time and energy loving the people who live with it, and helping them engage life for as long as they possibly can. The rewards for everyone are priceless and immeasurable.
Photo credit: Caters News Agency via The Daily Mail UK
“I think I’m going a little squirrely,” Mom used to say when I “misbehaved” in my late teens and early twenties.
I drove her crazy. I stressed her out. Maybe you react in the same way to someone you know who is living with dementia.
When we’re stressed, we feel out of sorts: our heart rate increases, we breathe more rapidly, our blood pressure goes up, we go into “flight, fight or freeze,” we manifest all kinds of unhealthy and uncomfortable symptoms.
On the rare occasions that mothering me got the better of her, Mom got stressed. She felt like she was going a little nuts. My guess is every dementia care partner feels the same way from time to time, maybe even all the time if their situation has spun out of control.
The Centre for Studies on Human Stress developed a “NUTS” mnemonic to explain what’s going on when stress sets in and things go squirrely.
NUTS, which encapsulates a universal recipe for stressful situations, comprises four main “ingredients:”
No wonder care partners–both those who live with dementia and those who are sharing their journey–get stressed and anxious. It’s normal. It’s expected. It would be abnormal if we didn’t get stressed.
Care partners without dementia are thrust into completely new “careers”. We’re drafted into playing parts we never would have dreamed of auditioning for, but here we are in supporting roles not knowing the lines or even the plot. As the disease evolves in our loved ones, we face unfamiliar twists at every turn.
Many care partners, including myself, never cared for anyone else before they began caring for a loved one with dementia, and most have no previous experience with the myriad forms or the diseases that cause them. We deal with things that often seem random and unpredictable – and we do it every day, sometimes for years and years, sometimes for decades. Who wouldn’t be stressed? It’s normal.
We question our own competence because we constantly feel like we’re failing. Successes are hard to identify in “dementia land” where we wage a never-ending losing battle against insurmountable odds. We’re in the trenches, and there’s no way out. Do we get stressed? You bet. It’s normal.
At the same time, people who live with dementia likely experience even more stress than we, their non-dementia care partners do.
Living with dementia is a completely new experience for them, as it is for us.
Many are justifiably terrified in the early stages, and in the later stages everything must feel strange to them all the time. They may or may not recognize the people around them even when they’ve seen their faces over and again – the hundredth time may be just like the first. Imagine meeting dozens of new people every day, day after day, for the rest of your life… How stressful must that be?
Their world becomes completely and totally unpredictable – everything is unknown, everything is chaotic from one minute to the next. Their own behaviour, moods and emotions are as much a roller coaster to them as they are to us. Nothing can be explained. Most things are confusing.
If that’s not enough, we speak about them as if it not they’re not there when they are; we treat them like children; diminish them by using pet names and terms of endearment; infantilize them; tell them what to do; take away their independence; and punish them for behaviours that would be considered acceptable for anyone else in similar circumstances.
What must their stress levels be like, simply by virtue of the fact that they live with dementia? How much more difficult must it be for them to cope as the disease progresses? No wonder they get anxious – It’s a normal response to the challenges they face.
One thing we can do as dementia care partners is take steps to reduce our own stress so we are better equipped to deal with it in those who live with dementia.
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“That’s the best idea yet!” I congratulated my cousin Liane.
“I KNOW!” She answered with a smile I could hear. “Who can resist laughing babies?”
“Not even me,” I LOL-ed.
Fifty-year-old Liane, a former nurse, care partners with her 80-year-old friend Florence who was recently diagnosed with dementia. Liane helped Florence move into an assisted living facility across from a long-term care home where the pair now volunteer for an hour or two each afternoon.
“Florence loves to be active. And she’s very social. So she and I were serving tea – having tea is one of the highlights of the day, you know.”
“I know,” I said. “There’s not much to do in those places. Everyone’s bored to tears.”
“Yeah,” she agreed. “Anyway, I had just given a cup of tea to one particular lady who always seems to be unhappy. She’s kind of grouchy and mean. Never smiles. Always complains.”
I’d probably be unhappy too, I reflected to myself. We need to do a better job of caring for the elderly, especially those with dementia. They deserve better than what they’re getting.
“All of all of a sudden I got this brain wave,” Liane continued. “I fished my iPad out of my bag, got on to YouTube, and found a video of laughing babies. Well. You can’t imagine the reaction of that cranky old lady. Within seconds she was smiling and laughing and pointing at the babies. It was great.”
“That’s BRILLIANT Liane. I wish I’d thought of it.”
“The next day, I put laughing babies on the big screen they have in the common room. All the ladies and even the few men that were there were over the moon. ‘Isn’t she cute?’ One said. ‘Look at that one,’ another said. They were smiling and cooing and oohing and ahhhing. Laughing babies. Best cure ever. Who knew?”
Better than any pill ever invented for immediate relief of boredom, depression, anger, anxiety, aggression, aches, pains, and overall malaise associated with life, aging, dementia, and most everything that might ail you or your loved ones.
Dosage:
Enjoy five minutes of laughing babies anytime day or night; before, after or with meals.
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My Alzheimer's Story 