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

Piece by Piece

I haven’t written an Alz World post since Bob died a little over a year ago.  Something went out of me when he passed away – all those years of care-giving, all the protracted grief, all the worries of how I’d keep him safe – it left an unexpected void in my life. I thought I would have more time to relax but instead I put myself to finishing a book I’d started in 2009. 

Our Early Years in Bali

Now completed, Piece by Piece- Love and the Land of Alzheimer’s, is about grieving the protracted loss of a soul mate and the lessons learned along the way. I’m hoping it will bring solace to other caregivers in despair at slowly losing a loved one to this terrible disease. My experiences are woven into the story of our lives of travel, inner and outer exploration, friendship and love, and being blessed to be able to live our dreams. 

Piece by Piece is written vividly and openly because these were things I needed to read to more easily face the day-to-day reality of the disease. I want to assure caregivers that what they are going through is the normal emotional roller coaster of the consequences of Alzheimer’s and affects everyone involved. I want to inspire caregivers whether they choose the long haul until death or whether they find they can no longer cope and need to find a home for the AD person. In this avalanche of a disease, we need each others stories.

Now the hard part begins – getting it published. I'm leaning towards self-publishing since the author has to do the marketing even with traditional publishers these days. Publishing is currently a volatile and rapidly changing business. 

                                               ~~~

I hadn't thought that Bob's passing would leave such an emptiness. I thought I'd grieved each piece as it fell away from his personality and that there was little left to bid adieu, so it shook me when sadness descended, especially as the first anniversary of his death loomed near. I decided to honor it and made a small alter with a photo of us, some shells because he loved the sea, a small vase of flowers and lit a 24-hour candle to burn in his honor. And once the year anniversary passed something shifted - it felt like a milestone and my new life had promise. It had light.

I miss Bob but oddly it's as though those fourteen years of Alzheimer's have faded into the background and what I remember and miss is the kind, compassionate, funny, loving man I married. I pass his photo and feel a surge of gratitude for what we had. Thank you, Bob!

Coming Home - Going Home

Julie, Bob and the Root Beer Float

In early March my niece, Julie, was visiting Bali for the first time and staying in my house while I was in the States.  Having heard a lot about Bob, she decided to visit him even though she’d never met him. Knowing how much he liked root beer floats she brought one. They had a nice time together – she feeding him his float and talking with him in whatever way seemed appropriate.  

 

A few days later she was having beach time on a nearby island when I got a Skype call in the States. Bob was back in the clinic running a very high fever. The doctors wanted permission to send him to the hospital. 

After consulting with his daughters we agreed we wanted him sent home.  He had pneumonia again and we wanted to honor his Advanced Medical Directive that clearly stated he did not want antibiotics or heroics in this situation. 

Julie abandoned her beach time and immediately returned to take care of Bob. As an ICU nurse and this was right up her alley. It seemed like Bob was ready to ‘go home’.

I considered flying back to Bali but I had so much left to do in the States before my return that I decided to stay. I’d said good-bye to Bob and put everything into place before I left so that if he didn’t survive my absence, all would be taken care of. Still it was a difficult decision.

Once home from the clinic, Bob steadily improved. Without my knowledge or permission, the clinic had been giving him antibiotics.  When I found this out I could have been angry but it felt so out of my control that all I could think was, ‘there must be a reason Bob is still with us’. 

Finally he improved enough that the IV was removed. He was eating again and getting stronger, although he couldn’t hold his head up unaided.  

I came home to Bali on March 21^st. That day Bob stopped eating. I went to see him on the 22nd, our 28^th wedding anniversary. His breathing was difficult and burbling.  He was in and out of consciousness. Still I told him how much I love him and what a great husband he was to me. I told him stories of our time together, of our life in Bali these past 25 years. 

It was clear he was dying. He breathed shallow hard breaths. We propped him up higher in the bed and that helped ease the struggle. Bob had always been my protector so I whispered in his ear, “It’s Ok to let go Bob.  I’ll be alright.”

Julie came later in the afternoon. We decided to call the clinic. It was painful to see him struggling so. They checked his heart – irregular and weak. His oxygen level measured only in the 60’s so an oxygen tank was sent round to aid his breathing.  Liquid valium was added to his hydration IV to bring peace to Bob and his wet lungs.

Skype brought his daughter, Michele, into the room from Hawaii. “I love you Dad, and I wish I was there with you. Thank you for being my Dad you’ve been a good one. It’s OK to go. I love you.”

I couldn’t get a hold of Dawn, his other daughter.  There was no turning back from this, no miraculous healing, no Bob outliving us all as had happened over and over in the last years.  I felt swept up in a phenomenon totally out of my control.  All I could do is make Bob as comfortable as possible.

On Sunday the 23rd I went to see him first thing in the morning with a friend who wanted to say good-bye. Julie joined us later. I told him again it was OK to go, I would be alright. I told him how happy I was that he waited for me to come home. I continued telling him stories of our wonderful life together traveling the world and living in Bali.

Gusti, who was the caregiver for that day, told us another man he’d cared for lasted like this for a week, so I had in my mind that Bob was not leaving just yet.  Jet lagged and tired I went home to my own bed that night.

At five the next morning Bob stopped breathing.  He died peacefully, well-loved and well looked after. 

I have felt this entire journey, even in its darkest hours, was somehow blessed.  In some magical way everything we needed was provided. People showed up – angels I call them – like Julie at just the right time.  Bob’s cottage came to me when I could no longer take care of him and thought I’d have to put him in a Alz unit in the States.  Daisy the Dashound needed a home and he needed a pet and he’d grown up with Dashounds.  It all fell into place when the time was right. People, with things to teach me, appeared like the Australian couple, he a retired geriatic physician and she a social worker for families dealing with Alzheimer’s. They trained me and the two new caregivers I’d hired in 2007,

I have so much to be grateful for in this journey into Alz World. And most of all I’m grateful that my adoring and adored husband and I had such a fulfilling and fantastic life together, living our dreams.  I have no regrets – this is the life we were handed and I think we did the best we could with it. Thank you, Bob.

Still in There

Well meaning friends, one of them a brain expert, used to tell me that Bob wasn’t ‘in there’ anymore – that the Bob I knew and loved was gone.  I know their intentions were well meaning. They wanted to protect me from the grief of seeing my Soul Mate imprisoned behind a wall of broken and tangled neuro pathways.  They believed and wanted me to believe he was no longer present.

I started to fall into the ‘no one is home’ trap. It was easier to think he was gone once he became a sometimes-difficult man-child to take care of.  But over time I’ve learned differently.

I’ve written a few posts about this and I’m writing again because I think it’s so important. As the person changes dramatically, it may be easier for our own sake as caregivers and loved ones to think they’re gone. And because there’s so much fear that it may happen to us, we project ourselves into the situation and find it unbearable to consider we might still be in there, trapped behind the disease, unable to get out. How much easier to accept if we believe we would be gone and the person in front of us is too.

Certainly the person as we knew them before the disease, has changed. But behind the changes I believe the original person still exists - not shards of them but the essence of them.

Even now that Bob rarely makes sense – he’s in the last stage of Alz - I know Bob’s ‘in there’ – his personality is ‘in there’.  And every once and awhile he makes his way through the dead ends, the holes, the disintegrated streets of the mind to shine.

 Two Views of Bob and the Sunglasses

 

My office manager, Made, recently visited Bob and sent me photos of his time at the cottage. (I’m in the States on my annual business trip while Bob stays with his caregivers in Bali). He wrote that Bob was attracted to his sunglasses so Made handed them to him.   In true Bob fashion he put them on and was transformed.

This photo zoomed me back to our life before Alz. As painful as it is to think my Bob is still present, it’s also comforting.  

A note to my readers - until I'm back in Bali in late March I'll be writing fewer posts.  My work load is pretty intense here in the States.