For the Love of Elise: Love, Loss, and the Lessons of Caregiving – National Family Caregivers Month

This is a story of love and caregiving – spoiler alert, not all stories of love and caregiving necessarily have completely happy endings.

I’m Elliot, and in April 2022, my wife Elise and I were living in Fair Lawn, NJ. As almost 73-year-old retirees and in contemplation of our upcoming 50th wedding anniversary, we took a cross-country car trip through the US and Canada in August. Elise had been having some issues with falling and difficulties walking before our trip, so we took some extra precautions and also brought a rolling walker for her. By the time we returned home, we knew something serious was happening, and we started the process of finding the cause.

As Elise’s ability to walk declined, I became her primary caregiver, with support from our children, grandchildren, and friends. By December 2023, we received a preliminary diagnosis that she likely had ALS, and it was confirmed in February 2024. As her condition progressed, her care needs quickly increased, affecting her ability to walk, talk, and manage daily tasks.

Elise was determined to live the best life she could for as long as she could. As her care needs increased, we realized we couldn’t do it all on our own. With her growing difficulty moving around and sleeping through the night, we decided to bring in overnight aides who were wonderful with Elise and allowed both of us to get the rest we needed.

The first lesson we learned – You have to communicate, support one another, and be willing to ask for and accept help when it’s needed.

Our situation became even more challenging as Elise gradually lost her ability to speak. Being deaf, I relied on my hearing aids and the limited American Sign Language skills that Elise, our children, and some friends shared to communicate. When the overnight aides didn’t fully understand her, I had to step in to interpret. The second lesson we learned was clear: providing the best care meant working together as a team — family, friends, and caregivers all supporting Elise.

As an addendum to the first lesson: caregivers need a backup. When I was no longer able to physically lift Elise from her bed to get her into her wheelchair or onto her commode, or out of her wheelchair to get her into our car or the shower, we had to find people or mechanisms to help. We were lucky in that we were led by ALS United Greater New York and our ALS Clinic to resources such as software that converts text to voice so that Elise could communicate her needs even if I wasn’t available.

This leads me to the third lesson we learned – there are wonderful people and groups out there that want to provide the assistance you need. In the relatively short time between Elise’s formal ALS diagnosis in February 2024 and her passing on September 23, 2024, shortly after our 75th birthdays, we received incredible support. We were loaned a wheelchair so Elise could get out of the house and stay connected with the world, and we were gifted software and an iPad to help her communicate when her voice failed. After using them, we returned these items, knowing they would be refurbished and passed on to others in need.

One of the hardest parts of being a caregiver was watching the woman I loved lose her physical abilities, and eventually, her hope. Yet there was no other place I could, or would, be. This truly was a story of love and caregiving: Elise’s love and care for her family and friends, and the love and care we all gave back to her in return. The fourth lesson learned is that caregiving is a form of love, both giving and receiving.

We all made sure that Elise was involved in every way in the decisions for her care, for even if she cannot speak she is still in there and needs to be treated as a vital part in the decision making process. That was the fifth lesson we learned.

And the final lesson learned was that her family and friends still keep Elise in their hearts for better or worse, even after death do us part. Grief is the price we pay for loving someone unconditionally and being loved unconditionally in return. As a caregiver, you can be overcome by regrets and guilt that you could have done better, but you need to understand that you did the best you could when faced with the reality of caregiving. Caregiving can be very difficult to deal with, given the highs and lows involved in the process, but I would do it all again without hesitation, even knowing how the story ends. – Elliot Lainof