Care Partnering, Hope, Inspiration, Joy, Love

5 powerful dementia care lessons i learned being my mom’s care partner

Being my mother’s primary care partner in various ways for ten years was one of the hardest things I’ve ever done. It was ultimately also one of the most rewarding in that it provided me with countless learning opportunities. I’ve blogged before about the joys, the difficult emotions and the lessons I and other dementia care partners have learned; here are five more:

1 ) People are people, not furniture

A changing brain does not suddenly make someone less than human, less what they were before their brain started to change, or less deserving than anyone else. People are people, no matter the condition of their brain, or their body. They have rights, needs and wants, just like the rest of us do. Recognizing and fulfilling those rights, needs and wants are societal and communal responsibilities.

2 ) Stigma destroys the stigmatized

Stigma can be more destructive and devastating to a person’s well being than a terminal illness. Stigma causes many people who live with dementia and the people who care for them to become isolated, sometimes even shunned by family and friends. This isolation is often more damaging to people who live with dementia and their care partners than the condition itself. Changing the way we see dementia and the people who live with it is one of the most powerful ways we can positively impact the well being of those who live with the condition.

3 ) Life is challenging

The challenges we face in life provide opportunities for us to learn, grow and become better people. The challenges of living with dementia and/or being the care partner to someone who lives with dementia are like other life challenges in the sense that they also provide opportunities for us to learn, grow and become the best we can be. It’s up to us to find the opportunities in the challenges we face.

4 ) We are not dead until we die

This seems obvious. Nevertheless, others treat many people who live with dementia as if they are already gone. I believe that treating someone as if they are not here when they still are increases the chances that they will decline at a faster rate. People need attention (via words, deeds and touch) to know they are loved and appreciated. Treating people with love, compassion, understanding and tender care will improve their well-being and boost their ability to thrive, even as they near the end of life.

5 ) Not needing to be recognized increases the chances you will be

When friends and family let go of the need to be recognized by a loved one who lives with dementia, I believe the chances that the person living with dementia will recognize them increases. My theory is unproven and based on my own experience, but I feel strongly that it’s true. When we let go of the need to be recognized, we become more relaxed, more loving, and more open to possibility, all of which impacts those around in a positive way and creates an environment in which positive interactions are more likely to occur.

What lessons have you learned?

top 15 things dementia care partners say they’ve learned

5 Uplifting Emotions Felt by Alzheimers Dementia Care Partners

5 Raw Emotions Alzheimers Dementia Caregivers Feel Every Day

17 links to the “other side” of dementia

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Care Partnering, Hope, Inspiration, Joy, Love

courageous vangaros united by love in life and death

Pops and Vince Vangaro

Albert Anthony “Pops” Zangaro

April 1st, 1942 – April 10th, 2018

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:

See a video of the Zangaro family caring together here.

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Care Partnering, Hope, Inspiration, Joy, Love

son thanks pops’ caregiver bird at alzheimer’s end

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:

See a video of the Zangaro family caring together here.

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Care Partnering, Hope, Inspiration, Joy, Love

47 things family dementia care partners say they’ve learned

 

Most family members who are dementia care partners will tell you that the role into which they have been unwillingly drafted is one of the toughest, if not THE toughest thing they’ve ever done. And yet, many will also tell you that plenty of learning goes on as well.

Here’s what they said when I asked family members who are also dementia care partners to fill in the blank in this sentence: “I’ve learned ____________.”

  1. I’m only human
  2. shit happens
  3. I am the only one I can depend on
  4. housework isn’t a priority
  5. a little lying can be a good thing
  6. you can’t control anyone else but you
  7. not to waste a moment of my life on negative feelings like bitterness, jealousy, or anger
  8. I am stronger than I ever thought I could be and weaker than I ever wished to be
  9. joy and healing are possible even the in the midst of tragedy and despair
  10. people who tell you to be a vocal advocate often get frustrated when you become one
  11. life is fleeting and love is enduring
  12. I have control over how I react and respond
  13. some day is today
  14. who I am doesn’t depend on what I do
  15. dementia does not rob a person of who she is
  16. caring is not what you say, it’s what you do
  17. all things pass
  18. people with dementia behave like the rest of us
  19. love prevails
  20. I’m great at counting to 10
  21. you never know what’s going on in someone else’s mind
  22. that people are much more than the disease they may have
  23. if I can make my loved one smile, my day isn’t so bad
  24. that everything is relative
  25. who my friends are
  26. how amazing my friends are
  27. how little I need
  28. how to redirect
  29. to live in the moment
  30. to love unconditionally
  31. to breathe and wait
  32. to let love in
  33. to look at life differently
  34. to listen with my heart
  35. to live with the glass half full
  36. to not sweat the small stuff
  37. to slow down
  38. to expect the unexpected
  39. to pick my battles
  40. to enjoy our time together
  41. to see humour in small things
  42. to make conversation about anything
  43. to see the beauty in small ways
  44. to never take things or people for granted
  45. to invest in those who are really here for me
  46. to be non-judgemental
  47. to say i love you more often

There are 15 more learnings here.

Being a family dementia care partner is a roller coaster of tragically raw and sometimes uplifting emotions. It can also be a tremendous learning experience if we choose to let it teach us. What have you learned so far?

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Care Partnering, Hope, Inspiration, Joy, Love

don’t waste your time hating alzheimer’s disease

dont-waste-your-time-hating-alzheimers-disease-2

“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.

Here’s the Zangaro family in action:

 

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Care Partnering, Hope, Inspiration, Joy, Love

leslie jones 5 top care lessons & 5 more of my own

lessons learned concept on black blackboard with coffee cupt and paper plane

“I’m so sorry for your loss, our loss. I have followed you and your mom’s story for a long time. My mom just died in December 2015. She lived with me, and I took care of her for the past ten years,” wrote Leslie Jones on the MyAlzheimersStory.com Facebook post after I posted something about Mom’s death.

Ten years is a long time to be a care partner to someone who lives with dementia. I saluted and thanked Jones for all she had done for her mother and I asked her if she would like to share her top five “lessons learned.”

“There were so many,” she wrote, and then she listed these top five:

  1. Patience is paramount
  2. Tomorrow will be better
  3. Laugh every day
  4. She gets frustrated too
  5. Nails don’t trim themselves

Here are five of my own (besides these):

  1. There’s no point hating a disease
  2. “Broken” minds do not define who people are
  3. Holding hands is heaven
  4. Music is better than medication
  5. Somewhere over the rainbow is here and now

What are yours? Feel free to share in the comments below.

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Care Partnering, Hope, Inspiration, Joy, Love

top 15 things dementia care partners say they’ve learned

top 15 things care partners learn flowers

Once upon an online caregiver support group, Sandra Wampfler Quinn-Allwein was frustrated by a spate of negativity.

People share everything from soup to nuts in such groups, which are a godsend for many on the difficult journey of dementia care. Care partners talk about joys, sorrows, and challenges. They ask questions and provide answers. They grieve and celebrate together.

Most care partners will tell you that the role into which they have been unwillingly drafted is one of the toughest, if not THE toughest thing they’ve ever done. It can be gut-wrenching and soul-destroying. It’s hardly surprising that fuses sometimes shorten and comments spiral in unintended directions.

When that happened on this particular day, Quinn-Allwein decided to reverse the wave of negativity with one simple question: “What has caring for a person living with dementia taught you?”

The responses came fast and furious. Here are the top fifteen:

  1. Patience
  2. Compassion
  3. Love
  4. Understanding
  5. Kindness
  6. Perseverance
  7. Faith
  8. Humility
  9. Empathy
  10. Appreciation
  11. Acceptance
  12. Forgiveness
  13. Selflessness
  14. Strength
  15. Mercy

These types of groups are closed and secret, and sharing individual comments is prohibited for the sake of privacy. But the list above is generic and anonymous, and I’ve posted it to support and inspire.

Being a care partner is a roller coaster of emotions. It can also be a tremendous learning experience if we choose to let it teach us.

5 Uplifting Emotions Felt by Alzheimers Dementia Care Partners

5 Raw Emotions Alzheimers Dementia Caregivers Feel Every Day

17 links to the “other side” of dementia

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Care Partnering, Challenges & Solutions, Life & Living, Love, Videos

another day at the alzheimer cafe

Alzheimer's cafe take twoThings were going along swimmingly at the Alzheimer’s cafe: Mom had buttered the toast and was reading the sticky notes that sat on the kitchen counter by the fridge.

I was filling our plates and capturing everything on video, when at 2:15 it all went suddenly and horribly wrong! It’s easy for me to see my faux pas and its impact – can you?

And do you notice anything different in this clip than in the first one here? It’s all one great big learning opportunity LOL 🙂

August 23, 2014

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