For each of us who have been or are primary caregivers for our loved ones with dementias and Alzheimer’s Disease (along with comorbid age-related illnesses), we are firsthand witnesses to the physical, emotional, mental, and financial toll it can have on us the caregivers.
But at some point our role as caregivers ends. Dementias and Alzheimer’s Disease are ultimately fatal since the brain affects every part of the body and as the neurological damage of these diseases progress, the damage spreads to the rest of the body.
As I wrote in one of the very first posts I wrote for Going Gentle Into That Good Night, we will never be the same again after being caregivers for our loved ones with dementias and Alzheimer’s Disease and other age-related illnesses.
But it’s been my observation that the caregiver experience leads us in one of two polar opposite directions after our caregiving days are over.
For some caregivers, their path after caregiving leads them toward helping other caregivers who are or will be on the journey through dementias and Alzheimer’s Disease. They do this through blogs – like this one – and books and online and offline support groups.
This path gives an added benefit to the caregivers who choose it: it facilitates the healing process and it often provides a productive journey through the grieving process.
However, for caregivers who choose this path, they learn along the way that there are some things that will never heal in this lifetime and grieving is not a finite process.
The benefit, though, is perspective and acceptance, even in the deeper wounds that won’t quite close up and the unexpected tears that can show up anytime and anywhere no matter how much time has passed.
For other caregivers, though, the path after caregiving is to leave it behind and shut the door on it. In most cases, this is the result of a tremendous amount of pain and loss in their own lives while they were caregivers because of the huge physical, emotional, mental, and financial toll caregiving had on them.
They don’t want to be around anything having to do with caregiving anywhere in their lives: blogs, books, support groups, or even friends and family who are or will be caregivers.
You can literally see this group of caregivers shut down and mentally check out when anything related to caregiving comes up in their lives. They physically, mentally, and emotionally walk away and never look back.
None of us knows what path we’ll choose when our caregiving days for our loved ones with dementias, Alzheimer’s Disease, and age-related illnesses are over.
And what I hope we remember is that neither path, regardless of which we choose, makes us better or worse than those who chose the other path.
For all the similarities we humans share, we each are unique creations who walk unique paths through our lives. I don’t know the details of where or what you have been through and you don’t the details of where and what I’ve been through.
So I urge each of us to be kind, to be empathetic, to be respectful to every other person who has been, who is, who will be a caregiver for loved ones with dementias and Alzheimer’s Disease and age-related illness, regardless of which path they have chosen, choose, or will choose.
Let’s not forget that we’ve all shared the same experience and that creates a bond between us of understanding. We should also remember that, when it’s all said and done, being a caregiver is an incredible act of love that, sadly, in our society more and more people are not willing to make the sacrifice for.
So all of us who have been, who are, and who will be caregivers are incredibly loving people who made the sacrifice, just like the loved ones we care for did with us, at, sometimes, a huge personal cost to themselves for the rest of their lives.
The path we choose afterward is often self-protective and a path toward some sort of wholeness. And that’s okay, even if it’s not the path we chose, choose, or will choose.
There is no right or wrong in the path after caregiving. It depends on each one of us which direction we take. But let’s don’t attack, don’t condemn, don’t criticize our fellow travelers in this journey because they choose a different path than we did after the journey with our loved ones with dementias and Alzheimer’s Disease ends.