Tag: opportunity

Care Partnering, Inspiration, Life & Living

20 opportunities being an alzheimer’s or related dementia care partner might offer you

My Alzheimer's Story

I believe the way we approach life has everything to do with the way we experience it. I believe the same thing about being a care partner to someone who lives with Alzheimer disease or a related dementia.

Like me, most dementia care partners are drafted into the role with little if any training or knowledge of the diseases that cause dementia. We are bombarded with an overwhelmingly negative narrative that comprises nothing but suffering, pain, loss, grief, and tragedy. If we let that narrative define our experience of being a care partner, we, and the person or people we care for and with will indeed suffer. The negative narrative becomes a self-fulfilling prophecy.

What if we could turn that around? What if, instead of focussing on loss, we concentrated on what we stand to gain? What if we homed in on potential?

Being a care partner to someone who is living with Alzheimer or a related dementia may provide you, your family members and your friends opportunities to:

  1. take living and loving to greater depths and heights
  2. heal past wounds and protect against future hurt
  3. learn more about the person you care for and with
  4. learn more about yourself
  5. grow your capacity for compassion
  6. discover what is most important in life
  7. better understand what it means to be human
  8. practice patience
  9. embrace empathy
  10. find ways to manage adversity
  11. learn how to live in the moment – right now!
  12. get into the habit of letting go
  13. find joy in simple things
  14. create a more meaningful life
  15. see the world from a different perspective
  16. spend more time with someone you love
  17. know your own strengths
  18. ask for and receive help from others
  19. be a source of inspiration
  20. share your human experience

I experienced all of these things and more, so I know for a fact that turning the tables on Alzheimer disease and other dementias is possible. Was my life as a care partner a bowl of cherries? Certainly not! Nor was it a long slow train through hell and into oblivion. It contained as much joy as it did heartbreak. I guess some of that is sheer luck. But a lot of it also had to do with being open to opportunity.

https://myalzheimersstory.com/2016/05/14/top-15-things-dementia-care-partners-say-theyve-learned/

https://myalzheimersstory.com/2014/02/27/5-uplifting-emotions-felt-by-alzheimers-dementia-caregivers/

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Challenges & Solutions, Toward better care, Videos

TED aphasia video great for dementia care partners

My Alzheimer's Story

understanding-aphasia-treated

As Mom’s dementia evolved her language skills changed, and while others seemed not to understand what she was trying to communicate when she spoke, I often found it relatively easy to read between the lines and “get” her meaning. At the time, I didn’t know why or how I was able to decipher what often sounded like gibberish, but I instinctively knew she knew what she was trying to say; she was simply unable to locate the words.

Recognizing the symptoms of aphasia, even though I didn’t initially know the technical term for the condition, allowed me to communicate with Mom using words and language for much longer than I otherwise would have. It also helped me to remain patient and to listen more carefully and more fully, which in turn fostered a deeper connection between us. It produced amazing conversations about love, how music helps longevity and more.

Being able to discern the underlying meaning behind the jumbled words that may result from aphasia is an important component of seeing dementia and the people who live with it in a different light, and thus reducing the practice of inappropriately sedating them with antipsychotic medication.

This excellent TEDed video on aphasia is a great reference full of useful information about aphasia and how it manifests. A “must watch” for dementia care partners.

 

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Care Partnering, Hope, Joy, Life & Living, Love

5 good things alzheimer’s brought me more of

My Alzheimer's Story

150615 Mom and me

Fellow blogger Rena McDaniel ran a post entitled I’VE BEEN ROBBED! on her blog The Diary of an Alzheimer’s Caregiver in which she described the devastation Alzheimer’s disease has wrought in her life.

I know where she’s coming from; so do millions of others. I strongly believe we need to change that. We need to change the way we think, write and deal with the disease and the people who have it. After I read her piece, I challenged Rena to write a follow-up about the ways in which being a dementia caregiver has been a blessing in her life. She responded with this list of blessings which include:

“I am blessed… that everyday I don’t have to worry that she is being neglected, abused or uncared for. That I am able with the help of my wonderful husband to provide…a safe, comfortable… environment for her to relax in with no worries.”

Me too Rena! I also wrote about some of the blessings I received as a care partner to my Mom who died on August 17, 2016:

1) Time

Had Mom not developed dementia, I likely would have stayed overseas for several more years. On my return to Canada, I would probably would have chosen to live in another part of the country, further away from her, somewhere far to the east or west. Because of her illness, I spent about three months a year with her from 2005 to 2011. I lived with her 24/7 in her own home for a year (2011/12) and saw her virtually every day after she moved into a nursing home in November 2012.

Dementia gave us the priceless gift of time. I’m grateful to destiny for this thing that was meant to be.

 

2) Depth

Many people experience dementia as the gradual and painful loss of someone they love. In fact, Alzheimer’s disease is often described as “the long goodbye.”

For me, it was a long hello. It afforded me the chance to more fully understand who my mother was as a person. I saw it as a peeling a way of layers to reveal the essence of someone I’d known my entire life and who I grew to know in a different way. Our decade together from 2006 to 2016 gave me the opportunity to know her better than I ever would have otherwise.

Diving deep into our relationship has been scary, rewarding and unexpected.

 

3) Healing

In the process of being her care partner and understanding her better, I was also been able to explore aspects of our relationship that were hurtful and harmful to me. I found ways to let go of those parts and to grow others that better served my higher self and I hope hers as well. I feel extraordinarily fortunate to have cleared negative feelings from my side of our relationship before Mom left this world.

We had some amazing conversations and incredible experiences together. Many of them profoundly touched my heart.

 

4) Practice

Living “in the now” gets a lot of lip service. Living with someone who lived with dementia forced me to practice the principles of being aware in ways I had never done before. Dementia has no past, present or future. It is this second, this minute, this moment in time. There are no yesterdays or tomorrows; there is only today. Now is it. No more, no less. The practice of being more present in pain as well as joy is a great gift. It creates a deeper connection with self and the universe.

 

5) Opportunity

The experience and the process I went through with Mom taught me a multitude of new things about dementia, music, compassion, conflict, communication and more. Had I known in 2006 what I do now, I would have done things differently. On the other hand, I now have a huge opportunity to help others do better than I did.

I can take what I’ve learned and use it to reduce others’ suffering. I can contribute to the pioneering movement to change the way we engage people who live with dementia. All of these things are great gifts, and I have still more to share — stay tuned.

In the meantime, take a look a Rena’s post to see how she’s been blessed in different ways than I have been.

 

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