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.

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17 links to the “other side” of dementia

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7 thoughts on “top 15 things dementia care partners say they’ve learned”

  1. After a particularly trying week, I’m happy to be reminded of these gifts. Yes, we need to rant and rave from time to time, if only to ensure that we are not alone in feeling overwhelmed and cranky, but overall there is no point in staying stuck in negative emotions, for any reason whatsoever. I’m sharply reminded of this by my parents’ honest reactions; it seems dementia makes them particularly sensitive to my moods, and if I walk in with a negative energy, it’s going to be a more difficult day for everyone. How hard is it to start the day with a smile? Deep breath.


    1. Heidi, yes, that’s true. But the answers are from a forum in which most of the participants are primary care partners to people who live with dementia and each of the learnings takes on a whole new meaning at a whole new level.

      For example, I found patience I never would have believed I had when listening to and answering the same questions dozens of times each day for days, weeks and months on end. Admittedly I lost my patience from time to time (even often at the start), but honestly, the level of patience required living with dementia makes that needed in day to day life a cake walk. I did it for only a year, some do it for decades. I can’t imagine.

      Many care partners clean up what they euphemistically call “messes” or “accidents” morning, noon and night. Forum questions include how to best mask the smell of urine, or what the best incontinence product is, or how to get someone to take a bath who hasn’t had one in weeks.

      These are not the kinds of things we have been trained to cope with in western cultures, and yes, perhaps they are what we should all know about being human, but damn, we sure haven’t been trained in the practical skills. So I think care partners are heroes in what they take on and what they learn. And I think most of it goes unappreciated by those who haven’t experienced it first hand.

      It’s hard to be human when life is inhumane 😦


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