Tuesday Tell All-3-14-17 David and Joan

What I Learned Today- Part II

Tuesday Tell All-my Facebook Live at 12N CST on Tuesdays is about stories- people’s stories. Have you ever wondered what was going on before and during the time a photo was taken?  Me Too!  We all have stories- parts of our lives that make us who we are.  Stories that show how we love one another, and stories that tell something words otherwise might not make clear enough.  A flat world becomes round with stories. I'm a photographer and a storyteller.  My world is bright and beautiful because of it.

Tuesday Tell All is also about keeping it real.  So, let’s all admit that we have good days and days that are a bit more challenging.  Yesterday was a GREAT day!  

Dear David, Joan and Kristan, My prayer is that I share your story in such a way to demonstrate how your story has touched my heart. Carmen


David Rivers playing his harmonica

David Rivers playing his harmonica

 

I sat down to write this after visiting with Joan and Kristan yesterday, and discovered my original blog about David and Joan was March 14, 2016- yes exactly one year ago.  The year has gone so fast!  I love how it just happened to work out that I happen to visit with Joan on Marc 13th with hopes to share their story on FaceBook Live on March 14, 2017. There are NO COINCIDENCES!  David, Joan and I met to talk about their journey with dementia.  David wasn’t able to express himself clearly with words, but he enjoyed showing off his harmonic talents, and I enjoyed listening to his beautiful music.  Their story will be in Love Still Lives Here.  

Joan’s honesty shared her feelings about not seeing any beauty or love in their dementia challenges. She told me, "There is no love here. I'm not sure what you are going for."  Her feelings of isolation and their personal pains touched my heart, and while she couldn’t see it at the time, I assured her that her stories would most certainly help others suffering the pain of isolation. Weekly ‘virtual calls’ via Skype with their son Kristan, his wife and 2 daughters were great pleasures and comforts for them. The computer rested on the dining room table in Scotland while they enjoyed their Sunday dinner- jokes, children’s antics, and the usual family banter included.  It was perfectly as 'normal' a family Sunday dinner as they could.


My Big Treat Today!

Their son Kristan, was kind enough to meet with me yesterday, one year to the day after the initial meeting with his parents.  What a treat for me!  Kristan is a native Austinite but hasn't lived here in about 20 years.  He lives in Scotland with his family and is in Austin to help his mother transition his father to a nursing home.  Caring for David at home was no longer a good option for Joan who has had her own health problems.

Kristan's experience as an adult child of aging parents and a father with dementia while living in Scotland intrigued me.  I'm so glad he was open to visiting with me. Love Still Lives Here tells the stories of love and devotion of families caring for their loved ones with dementia.  Parents, wives, husbands and grown children have contributed stories from the heart.  Adult children watch their parents age, and worry how they might need to contribute. Many adult children have young children and spouses of their own as well.  An illness such as dementia with the continued cognitive decline requires ongoing care and an ability to juggle the scary unknown.

When I say it was a treat to visit with them today, I am not exaggerating.  I envisioned their Sunday dinner calls from Joan’s perspective, and hearing Kristan’s description really helped to tell the story from the grown child’s perspective.  His father’s decline and his mother’s challenges were noticed, and he, understandably, experienced some guilt over not knowing how to support them.  Living far away from the United States of course contributed to the challenges, but the weekly virtual calls and ability to visit for extended lengths of time helped.  Guilt and feelings of helplessness are often experienced by caregivers in even the best of circumstances.  


The Skype calls helped to create a little normalcy to the family environment for us and for Mom and Dad.  It’s a surrogate for the experience but not as good.  We could see the changes in Dad, and the kids could see it. The tough time for me was being both the father and the son. I could see them snicker if Dad forgot something. I did the Dad thing and told them to stop and on the other hand I knew if I was their age I could see it. It was funny. Then I would get upset at my own reaction. There was no winning. We saw the decline remotely. It was even harder for my mother I’m sure. It was hard to have that normalcy but we did our best.
— Kristan Rivers

Joan recalls our first visit and her experience and the anger she felt for even being in the situation of caring for her husband with dementia.  She understandably questioned my title Love Still Lives Here and asked how can there be love? She admits to being in an angry mood just for finding herself in the situation as caregiver.   A sense of gratitude overcame me as I remember our meeting and how much her honesty meant to me. I knew it would resonate with others.  Joan was also hopeful that their story might help others dealing with the feelings of isolation associated with dementia.  

David recently moved to a nursing home so Joan could focus on her own health. The transition has been fairly smooth for her.  Nobody asks for dementia- it is thrusted upon us and then we are left to deal with it.  Often it is one family member who is the primary caretaker and a feeling of overwhelm, anger and hopelessness is common.  This is part of why connection with others is so important.  Virtual and day programs can help.  

Interestingly, Joan has watched some of my Facebook Live Tuesday Tell All programs (THANK YOU JOAN!) and recognized another family she met through the adult day program last year.  They look forward to reconnecting.  The world can be a smaller place with technology- the family’s Sunday Skype visits and even this Tuesday Tell All.  It can also be a lonely empty place when we feel alone.  The pain of isolation is one of the issues facing people impacted by dementia, and I believe Joan and David's story (and now Kristan's!) can help others learning to live with dementia. March 14, 2017 Tuesday Tell All will be devoted to David, Joan and Kristan. 

I am so happy I got to reconnect with Joan and meet with Kristan today.  Seeing Joan smile, laugh and interact with her son was a beautiful thing!


David is in this video as well....



Tuesday Tell All is about people's stories. Today its about caregiving, love, isolation and trying to stay 'normal' in the face of dementia. I share what I learned from Joan, David and Kristan. Enjoy!

Facebook Live 3/14/17

About David, Joan and Kristan-Living Well When Someone We Love has Dementia