Tag: patience

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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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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“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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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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Take my short survey on behaviour here.

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