My wife passed away last year due to complications of Lewy body dementia (LBD). Naturally, I have spent much time reflecting on our life and her journey that we shared together. I have listened to many caregivers relay their stories and express their frustrations while caregiving. I hope that my reflection might offer a little comfort and maybe revelation through your own journey as caregivers. I am not a doctor, and I don’t have any formal expertise; I’m just a former caregiver who cared, like you.
I have come to believe that there are three main types of caregivers for those caring for loved ones with LBD. One type is those who are either just not cut out to be caregivers (we all are not) or are angry with the situation and/or their loved one for subjecting them to this wretched disease during their glory years. Indeed, it is a harsh reality. The hope would be that this anger and resentment will pass but, if not, then a caring facility might be the best decision for both of you. Most likely, you have already made that decision in your heart and know it’s for the best for you and your loved one. That is a brave decision.
The next type is someone like me. Since my wife passed, many friends and family members have reached out to me saying that they always saw us as “one person” not as individuals. After much reading, I know and believe that we were “one soul” joined together. If you had a similar relationship, then it is likely you both shared a very caring partnership and had many wonderful moments of giving to humanity, as we did. It was this profound contribution that caused me to question “why did this happen to us?” Undeterred, every morning as we woke, my promise to her was “I would do the best I can do” that day. I did, though, continually look to find some additional motivation to care for my wife other than my undying love.
The third type of caregiver–and the one I am hoping to reach–is the one who may be struggling with their decision process. Make no mistake, this is not an easy journey and none of us signed up for it. One of my toughest moments came when she stopped telling me “I love you,” words we expressed to each other every night before closing our eyes. As my caregiving days ended, I began to spend more time reading and reflecting to try and understand why this all happened to us. I believe that I might have discovered what that additional helpful motivation was. It is my belief that my wife was preparing for her next mission in life: to care for and teach all those lost souls in the universe on how to be better. That was her gift in this life. And I am grateful to have been there to help her make that transition. Why it was LBD that led us here is not for me to judge.
If my words resonate with you at all and you are having a particularly difficult day, gaze into the eyes of your loved one, smile gently, and know that this special person was chosen to continue their gift by helping others as they always did. And you were there to help them along the way.
