An Advocate for Caregivers

Yesterday I met a very special man, Rev. Gregory Johnson, who is a passionate advocate for caregivers. He’s worked for years shedding light on the plight of all Family Caregivers, not just those who care for people with Alzheimer’s.  

 

As a caregiver himself he’s intimate with the stresses involved while caring for a loved one. He’s spoken at the UN, Pentagon, corporations and conferences. He’s written books and pamphlets because he knows that caregivers are often overlooked while most attention goes to the person with the illness. As a minister, he told me, “I’ve buried more caregivers than those being cared for.” 

Greg understands that caregivers need to share their stories, need to take care of themselves, and need respite breaks.  He works tirelessly to improve our lives.   His series of conversations called You Are Not Alone are on You Tube.  You can watch them here:

https://www.youtube.com/watch?v=y_8iiy0mmU0

And THANK YOU to all caregivers for what you do.

The Give and Take of Alzheimer’s

I gave a talk on being a caregiver at TEDx Ubud on May 28, 2016 . The talk is now on You Tube and you can see it here:

https://www.youtube.com/watch?v=35hml1XHrF0

My caregiver days for my husband have been over for two years but the effects of those fourteen years of caring for him will be with me forever. Caregiving is a lonely business with families and friends often easing into the background, leaving the primary caregiver on their own. People with Alzheimer’s have a completely different operating system than we do. Family and friends may be uncomfortable being with a person living in Alz World, it may trigger their own fears about their later years, or they may feel that it’s too big a responsibility to step in and give respite to the primary caregiver. 

Dealing with dementia on a day to day basis is exhausting no matter how loving you are to the person with it. Encourage the people around you to come, even for an hour or two. Encourage them to enter Alz World to communicate with the person and have fun with it. Tell them to redirect the person’s attention if they stray into uncomfortable territory. You need the break for your very own health and sanity.

Try to start this support system early on in the disease to ease your friends and family into Alz World. That way it won't seem so foreign. 

If you know a caregiver, volunteer to give them a break. It's one of the best gifts you can give.

TEDx Talk

TEDx Ubud happened this year on May 28.  TED talks are inspirational and informative whether I watch them on YouTube or actually have the privilege to attend the talks.  I always feel fired up watching people so passionate about their subject.  This year was no exception - only this year I was a speaker too. 

I was asked to speak about my fourteen years of experience as a caregiver to my husband, Bob, who had Alzheimer’s. It was an intimate look at life with Alzheimer’s and how it affects the caregiver.  Mostly we hear about the disease and how it ravages the person with it but there is little in the media about how it devastates caregivers.  A significant percentage of us die before our loved one because of the stress, emotional turmoil, physical challenges, and life changing consequences of being a caregiver for someone with dementia – someone whose brain doesn’t function like ours. The rest of us are changed forever, dealing with this challenging disease.

My dream is to advocate for other caregivers through my writing, speaking and experience. 

The article that goes with this photo can be found at:

https://www.lifestylerewired.com/2016/05/losing-to-alzheimers-piece-by-piece/ 

A video of the talk will be on YouTube around the end of June 2016. I'll post the link then. 

Thanks for reading! 

The Book

Finally, I have published my book - six years in the making along with fourteen years of care giving. It’s available on Kindle. Later there will be a hard copy but for now it's readable as an e-book. I hope the story will inspire other caregivers. Here's a summary:

Susan and Bob felt they were living their dream life. They lived in Bali, had a growing business together, they traveled and they were still very much in love even after fourteen years of marriage. When Alzheimer’s hijacked their lives, Susan vowed to give Bob the best life possible.

 Written honestly and vividly, Piece by Piece: Love in the Land of Alzheimer’s tells a caregiver’s story of facing the emotional, physical and every day challenges inherent in caring for a loved one with Alzheimer’s Disease for fourteen years. Susan shares the practical lessons and techniques learned along the way to help other caregiver’s in their journey with Alzheimer’s. 

This is also a story of following one’s dreams, travel, adventure, and finding humor and insights in life’s challenges. Above all, this is a story of enduring love. 

                            AVAILABLE ON KINDLE