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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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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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.
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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I love the hopefulness of the image above, and the humanity of the tune below.
Despite the challenges of my journey with Mom, I learned so much from it and from her as we travelled the road hand in hand. I’m grateful for the time we spent together here in this life, and particularly as she lived with dementia of the Alzheimer’s type.
Nevertheless, our journey with dementia was also replete with tragety, frustration, despair and suffering, most of which was uneneccessary. The way we care for people who live with dementia and their care partners is unacceptable. Our healthcare systems are broken, elders are neglected and abused, we need to fight for massive change. We can’t give up; we must rise up. This post is dedicated to all those who would make this world a better place for us all, especially those of us who are vulnerable elders who live with dementia — you raise me up to more than I can be!
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“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.
Dedicated to unappreciated care partners worldwide. Thank you for all you do.
Dear random person who sees my care partner from time to time and feels the need to point out s/he has bruises all over her/his body that look frightening and s/he has really declined a lot since the last time you saw her/him and s/he can barely walk anymore and s/he’s asleep when s/he should be awake and sometimes vice versa and you hardly recognize him/her as the person you used to know and you’re really shocked and feel bad seeing him/her like this and isn’t it sad and a shame and this is what you would or wouldn’t do if you were me and you would rather be shot than end up like this,
Yes; I know. I know what you think.
But you know little of me and/or the situation in which my care partner and I find ourselves. You think you do, but you don’t. Pretty much the only people who get it are those who have been through it, and you clearly haven’t otherwise you wouldn’t say the things you do and I wouldn’t need to write this letter to you.
I either live with my care partner or I visit her/him almost daily. I spend endless hours and fleeting moments with him/her talking nonsense and singing and just being together, because one day soon s/he will be gone. Every minute with him is torture; every second with her is precious. I know by the way s/he rocks back and forth when s/he wants to get up and get moving, and by the look on his/her face and the feel of her/his hand in mine if s/he is able to stand unassisted. Mostly s/he’s not, so I am by her/his side whenever I can be. When s/he is able, we shuffle around wherever we happen to be to get some exercise.
I know by the way she pats her hair that she loves the fact that it’s “done.” I know the colour and brand of her nail polish because I supply it. I know when she had her last manicure because I was the one who gave it to her.
I know by the way he touches his face that the cut just above his left brow worries him. I know the kind of aftershave he prefers, so I buy it to help him know he’s the same man he used to be: the man who was and still is the love of my life. I know by the way he reaches out to me when I’m near that my presence is important whether he recognizes me or not.
I know when his/her sleep is unnatural by the slackness of his/her mouth and the rhythm of his/her breathing. It breaks my heart that s/he is being medicated for normal behaviour which could be addressed and resolved without drugs. I can’t change that; I would if I could.
What I can change is a soiled adult brief, and I do so often. No one showed me how. I figured it out myself, just as I’ve learned everything else I wish I’d never had to learn about being a caring partner to someone who lives with dementia. I didn’t asked for this. I never wanted it. But here I am. What can I do?
I recognize her wheelchair by the stain on the seat. When she can’t feed herself, I help her to eat like she helped me when I was a baby. When she’s able to eat by herself, I celebrate a small victory. I help her engage with her shrinking world, not simply exist in it.
I see her/him in ways you can’t even begin to imagine. We are reflected in the mirror of each other. I have cried with her/him, comforted her/him and felt the sting of her/his acid Alzheimer’s tongue. I pray for her/him to stay and go. I watch her/him look death in the eye and grab life by the horns every day despite her/his illnesses. I am her/his cheerleader, her/his advocate, her/his voice. I am her/his child/parent/spouse/sibling. Our souls are linked; our destinies are intertwined. We are more deeply connected than we have ever been.
Who are you? You are a casual observer making ill-informed assumptions and coming to erroneous conclusions based on incomplete information. You mean less than nothing to me. My care partner means everything to me. I have experienced first hand the effects of decisions I’m told are in his or her best interests, but which in reality have little or nothing to do with her/his health and well-being and everything to do with convenience, reducing costs and conserving her/his wealth for someone else’s use once s/he’s gone.
The effects of the decisions in which I have no say include the cuts, bruises and other conditions about which you feel compelled to apprise me. Your thoughtless and insensitive comments add salt to other wounds you cannot see. You don’t know me. You don’t know my circumstances. You don’t know my parent/spouse/sibling/child although you may think you do, and because you think you do you also think you have a right to judge me or her/him or the situation in which we find ourselves.
The next time you feel tempted to comment, judge, berate or advise me on aspects of my care partner’s condition or my role in her/his life, please consider all of the above and mind your own business instead of mine.
P.S. to all the beautiful friends and acquaintances everywhere (especially those in online support groups whom I may never meet or know personally) who support without judgment and share their wisdom and experiences without expectation: thank you, I love you and I am so grateful you are here to hold my hand ❤
Every word Sean Donal O’Shea speaks in this video might have come from my mouth.
I’ve watched it many times and I cry every time. Not from sadness, but from witnessing another human being’s deep connection and compassion in the face of a disease that defeats the spirit of many. I am full of admiration for those who live with dementia, just as Sean Donal O’Shea is inspired by his mother. He and I and others like us are are fortunate. There are millions of care partners who are tortured beyond measure by dementia; they are unable to find any gems amidst the tragedy. Those of us who find healing and purpose suffer less. We’re lucky.
My name is Sean Donal; I’m from Waterville, County Kerry, and my mother is Debbie, she’s 58 years of age and she has early onset Alzheimer’s disease.
I think at the start I was very impatient with Mom. Her mobile phone used to go off in her pocket and it would ring us. And we used to try to show her how to lock it, no way could she comprehend it at all whatsoever. And this was before the diagnosis and were kinda going: “there’s two buttons you have to press.”
And you feel fierce guilty after those things, like you’d kind of be getting angry with them, and saying “why can’t you do that?” And now looking back on them you say God…
I remember one day we were going back to the beach, and it was a real foggy day and I had to ring my girlfriend saying I don’t know where I am and that really gave me an awful fright. Imagine spending your whole day like that…
A few years ago when she was able to speak, we would chat and she would answer me back and they would be proper chats, you know, they wouldn’t be just chatting about the weather, we’d talk. Even now, if there’s something on my mind, I’ll go in there and I’ll say, and you’ll see the eye go up, or she’ll give a smile.
When we were young she used to say “goodnight, God bless, I love you.” And like boys don’t say that crack at all and after the diagnosis, I started saying to her, I’d tell her I love her and that she’s an inspiration, which she is.
Me now and me 10 years ago, it would be two totally different people altogether. Previously I worked as a block (brick) layer. I went to college and I got a degree in Applied Social Studies and Social Care purely because of her.
I told her that I passed and there was a smile there and I knew inside she was doing cartwheels and everything, but she outward couldn’t express it like.
This is something I want to do for the rest of my life.
I accepted it a long time before my father did and I suppose it was easier because that’s his life partner, his wife. To see that being taken away it must be very hard, and he denied it for an awful long time, I know that. But in the last few years, he’s become the main man now, you know, what he says goes and he’s a great carer now.
Two or three months ago, she used to give the kiss, but that’s gone now. And she used to stroke the hand, but that’s gone now too. You don’t notice the day-to-day things, it’s only when it’s spread out and looking back over it.
When there was live music playing, she’d get up and she’d start dancing, she wouldn’t care who was watching, and she’d pull you up to go dancing and I remember I’d be going “Just stop you know, just leave me alone.” If she could dance now, I’d dance on TV with her you know.
I’ve never ever in my life seen anyone as brave and courageous as her. She’s just unbelievable. They broke the mould after making her you know. She’s unbelievable.
My Alzheimer's Story 