The Inverted Funnel: Surviving as an Alzheimer’s Caregiver

Every now and then there is an unexpected moment that changes your life. You never know when that will happen as there is no warning, no fireworks in the sky and sometimes this moment of importance surfaces hours or days after that moment passes.

"Last night I was invited to a book signing. I wasn’t sure if I could make it but by chance an appointment changed and I was able to attend. That cancelled appointment changed my life.  My good friend reserved a seat close to the author who was going to give a talk about his new book. I had heard many talks about the subject of this book. My mind was still on the day’s challenges and not truly in the moment. That was about to change!"

This man began his talk by sharing a few stories of his past and humble humor. He had that gift of connecting with the audience in a way that was captivating. There were many jokes that grabbed you but made a point at the same time. Then came the message; life can be an inverted funnel and when that happens what will you do, how will you react and what changes will you make as a spectator in the novel which is your life.

Martin Schreiber was our Governor of Wisconsin in the late 70’s. He was also our Lieutenant Governor and contributed in so many ways to the betterment of our state. His entire life was dedicated to service to others. His life would change in a direction that was not anticipated. A friend once told me we can make our plans but you can’t plan the results! Think about that for a minute. All of us have our idea of where we want our lives to go, how we want to retire and what that life after work will look like. That is human nature. But we also know that life can alter our path with challenges that were never anticipated. This was Marty’s story. A story of intense challenges that rocked his life in a way he never imagined. This is a story of a love affair of over 60 years with his wife. Her name is Elaine. His book is called, “My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver.”

Dementia can come in many forms. It has no set course, comes with no instruction manual. It just is. How we deal with our loved ones with this disease is critical not only to the care for our loved one but for the caregiver who must remain healthy and strong. Elaine had entered into her new reality of dementia and rocked Marty’s life in a way he never expected.

For those entering this new way of life, the funnel becomes inverted. Think about putting a funnel to your eye and looking through that prism with the small end at your eye. You will see the entire world in front of you as that funnel expands your view. Now imagine looking through that funnel with the large end at your eye. Your view becomes narrowed to a very small but intensely focused part of the world you see. One with dementia may see life with that large funnel at their eye. It can become focused on thoughts and feelings that are difficult to understand, especially for the loved one who becomes the caregiver.

"My Two Elaine's" Learning, Coping and Surviving as an Alzheimer's Caregiver. By Martin J. Schreiber

"My Two Elaine's" Learning, Coping and Surviving as an Alzheimer's Caregiver. By Martin J. Schreiber

As Marty pointed out, caregivers are the unspoken heroes. Many times a caregiver’s health may deteriorate mentally and physically if attention is not paid to maintaining one’s body and mind by exercise and nutrition. Often a caregiver may not outlive the person they are caring for. So it is critical to pay attention to what Marty had to say about his journey with Elaine as they experienced a life they never anticipated.

In order for Marty to be a caregiver for Elaine, he had to let the first Elaine go so he could honor and care for the second Elaine. It is hard to imagine this disconnect but as Marty made this mind shift he found a new way to honor and love Elaine in a way he never imagined. By letting go of the Elaine he had known for most of his life he was able to show his love from a different prism. His funnel had also become narrowed, but after his mind shifted the world opened up for both he and Elaine! 

He went on to discuss ‘therapeutic fibbing’ which was a term new to many in the audience. When one has dementia, their reality can become altered where facts can become fiction and fiction can become fact. Many in the audience shared stories of arguments with their loved ones about past events in an attempt to bring them back to reality. There comes a time when we must let go and ask ourselves does it really matter if we correct our loved one. It may become best to redirect and to probe into their new reality rather than prove a point of fact.

Marty’s loving story of his two Elaines resonated in a way I never expected. The lesson for me hit hard. We live in a reality that can change in an instant. So often we wait for signs from above to direct us and to change us. But how many of us actually have a sound plan for a very unpredictable future. You should enjoy every moment you have. You worked hard to maintain your environment and you deserve the fruits of that labor. Enjoy each other if you are blessed to have your partner with you. But there may come a time when life hits hard and change becomes your neighbor. Try to think ahead and plan for that altered life by taking a good look at where you are today. Give your partner a hug and know that life will change as it has to by the laws of nature. Know that the perspective you share with those you love can be altered in an instant and that your reaction to change is the key to future happiness and success.

Our positive attitude is so critical to not only sustaining our own health and can help avoid missing out on moments of joy. Socialization, exercise and a glass of red wine can be the secret to keeping one’s health as a caregiver as well as the person that is cared for. Learning, coping, and surviving can become a way of life for those caring for others. It is critical to listen to the Martys of the world so that you can be ready to help your loved ones in a positive and healthy way. Marty’s two Elaines will forever be a part of my mindset. Most of us will know someone with a form of dementia and by educating ourselves we can make sure that our view of life will have the small end of the funnel at our eye so we can see the beauty of the world in a way we never expected!

For more information or to order an autographed copy directly from Marty Schreiber, go to: www.mytwoelaines.com.
To keep up on Facebook, go to: www.facebook.com/MyTwoElaines

Note: You can call the Aging and Disability Resource Center 24/7 for Help and Advice at: 1-800-272-3900