We caught up with the brilliant and insightful Lisa Marshall a few weeks ago and have shared our conversation below.

Lisa, thanks for taking the time to share your stories with us today What’s been the most meaningful project you’ve worked on?

The most meaningful project I’ve worked on is “Oh Hello Alzheimer’s”, an international blog allowing the world into our private life during our journey. After Peter’s death, I wrote a book with the same title, which is not only a guidebook for caregivers and families, but a love story. My husband Peter and I had a rare and unique love story that many people never experience in their lifetime. Peter was diagnosed with Alzheimer’s when he was just 53 years old. Looking back, I noticed signs when he was in his mid to late 40’s.
We both had lucrative careers, our 5 children had left the nest and they were flourishing. We had everything we could ever ask for and every day was a honeymoon. Our plan was to retire early when we turned 60. Travel, relax, garden, golf, we were in the home stretch.
Instead, Peter stopped working when he was 53 as he could no longer understand what his job demanded of him. He had climbed the ladder and was a Vice President, overseeing Risk Management and Compliance at an Investment Portfolio Management Company.
Peter had a brilliant analytical mind. By the time he left his job, every responsibility had been gently removed from his care and he spent hours sitting in the lobby looking out over the Hartford landscape instead.
I retired a year later as it was no longer safe for Peter to be home alone. He needed supervision and assistance doing many things as his confusion increased. After losing both of our salaries, we had to rely on just 23% of our income through long term disability and Social Security Disability. We lost the opportunity to pay into Social Security and our medical expenses were now out of pocket.
Over the 3 years and 8 months from diagnoses to Peter’s death, I chronicled almost daily, the horror we endured. Peter’s brain forgot how to do everything it ever knew. He lost the ability to form sentences and recall words, drive a car, and play golf. He could no longer remember his birthday or address, or our wedding anniversary.
Childhood friends and their memories were lost. Peter’s brain would not let him remember how to dress properly or what clothing to wear for what season or occasion. Zippers and shoelaces were replaced by elastic waists and Velcro. He forgot the names of our children, and he forgot the precious memories that we had made together over the last 22 years. And he forgot that I was his wife.
I became the keeper of our memories, sharing our precious storybook with him. He delighted in the tales hearing them for the first time, every time. Until he could no longer comprehend my words and his eyes became distant. The days were unpredictable and new voids in his ability crept in often.
Peter unlearned, how to eat a sandwich and cut his meat, brush his teeth, trim his nails and shave his face and head. So, I did these things for him. He needed help toileting and showering. The morning routine of personal care and dressing was exhausting. Imagine trying to dress a 6 foot man who is combative or not participating in putting on a shirt, or pants, or diaper or socks.
While the work was exhausting physically and emotionally, I was happy to help him because I knew, Peter was not giving me a hard time, he was having a hard time.
Eventually, Peter lost his ability to walk, and eat, drink and swallow. He spent the last days of his precious life in a hospital bed in our family room. My bed was placed just across the room so I could tend to anything he needed. Finally, Peter’s brain forgot how to breath and his heart stopped beating. I heard his last heartbeat and felt his last breath on my face. And just like that Alzheimer’s had taken my Prince Charming.

Lisa, love having you share your insights with us. Before we ask you more questions, maybe you can take a moment to introduce yourself to our readers who might have missed our earlier conversations?

The unique thing about Oh Hello Alzheimer’s is the truth. The raw and authentic look at what the caregiver and or families experience while taking care of their loved one.

Peter, gave ME a beautiful life. Peter gave the world a beautiful gift. The powerful gift of his permission to allow me to be his voice and share an inside view of Alzheimer’s disease. Peter not only granted me permission to create an international blog, sharing our heartbreaking experiences, but he encouraged me to do so.
I would read my words to him before posting them and I would cry. There were many days I wanted to stop blogging as writing the story of our reality was excruciating. One day, Peter knelt behind me on his knee as I sobbed through the words. Rubbing my back he said, It has to be done, It has to be you.

I have become a fierce advocate for families struggling with Alzheimer’s and use my voice and passion to try to evoke change. I wrote the book as a guide to help families learn practical and relatable tips and tricks in order to reduce stress and become more effective caregivers. There are chapters covering taboo topics which are difficult to learn about and ask questions about. The book offers a peek around the corner of what could be coming and ways to approach new challenges.
Additionally, I invite followers to join group discussions or private consultations, to have in depth conversations about what issues they are currently dealing with.
Companies interview me for the purpose of their zoom attendees to gain continuing Ed credits. I also speak in person and via zoom to families at memory care facilities.
The moments that make me most proud are when caregivers tell me something I said or they read changed their perspective and helped them to be a more compassionate caregiver.

Is there mission driving your creative journey?

I’ll narrow this down to three important things! 1. FIND JOY! 2. No regrets! 3. Self Care

Find Joy, No regrets; I adopted these mantras early on in our disease, after diagnosis, and recommend them to everyone whether you’re affected by Alzheimer’s or not. Life presents moments and minutes and hours and days of opportunity, and we instantly choose what to do, and how we react to them. Optimism can be scarce when faced with adversity that has only the saddest of outcomes, but why waste even the briefest present moment? Look for joy, seek it out, invite it into your heart and joy will stifle sadness almost every time.

I vowed to myself throughout our journey that I would have no regrets. The only way to have no regrets was to do nothing I would feel regretful for. This requires being constantly mindful and very present. Words are like toothpaste, once they come out, they’re impossible to put back in. I knew being gentle with my words and actions were paramount to living my truth of no regrets. Being patient required me to let go of tasks I once thought were important. Many household chores or mundane duties were moved to the unimportant column of life while I very mindfully cared for Peter. When if was over, because of this diligent mindset, I have no regrets.
Self-care is a luxury many caregivers have a difficult time honoring, however, it needs to be a requirement. Caring for someone with Alzheimer’s is exhausting and a caregiver cannot pour from an empty cup. It would have been difficult to adhere to my mantras had I not disciplined myself to take time off. The hardest part is asking for help, but in truth allowing someone to help during this time is a gift to them as well.

Let’s talk about resilience next – do you have a story you can share with us?

One of the most gut-wrenching periods of our story, was when Peter forgot who I was. He forgot all the memories that we had made together over our 20 year Cinderella story. I was always a proponent of meeting Peter wherever he was, joining his journey, and playing the pretending game. This night was no different. I heard his words and delighted in them, flattered, and at the same time, I wanted to run out of the room horrified. I chose to be delighted. We were watching an episode of the TV show New Girl and a certain couple was getting married. I was crying and letting some of my pain stream down my face. Peter would always tease me when I cried during a show or movie to lighten the mood. I caught him laughing at me and I laughed, too, and blew my nose and told him to shut up. We laughed together and I said, “It’s so beautiful. I’m really happy.” reassuring him so he wouldn’t be afraid of my tears. “Isn’t this nice?” I asked Peter, pointing to the TV wondering if he understood what was happening.
Peter was sitting on a different couch to my right and there was a table between us. Peter leaned in, over the end table putting his chin on his hand. He had a devilish look on his face, boyish almost, and he looked right into my eyes and said, “Let’s do it!” with this huge inviting smile!
“Do what?” I asked and Peter pointed to the TV. “Get married?” I asked and his grin grew so wide!
And he said, “yes.”
Shaking my head in disbelief and joy I asked him, “Are you asking me to marry you?”
He smiled and chirped loudly, “Yes!”
I had no intention of having a ceremony until my daughter who owns, Sarah Brehant Events, a wedding and event planning company, gave me the perfect reminder. If I didn’t do it, I’d have regrets.
Every detail was planned by my daughter and a huge team of generous vendors. All services and talents were donated to Peter and I for our perfect “wedding day”.
It was one of most resilient days because while Peter had fallen in love with me and asked me to marry him again, he had forgotten everything we built together.    

Contact Info:

• Instagram: @ohhelloalzheimers
• Facebook: @ohhelloalzheimers
• Linkedin: @ohhelloalzheimers

Image Credits
@caitfletcherphotography @danbrehantphotography