In hearing feedback on my book, “Bleeding Hearts”, I’m becoming more and more aware of how many different ways Alzheimer’s affects everyone. Grandmothers, aunts, uncles, grandfathers, mothers, fathers, sisters, brothers…the list goes on and on. And with each one of those persons falling victim to Alzheimer’s, there are dozens of family members being affected in the most abominable ways.
But in everything that I’ve heard, the thing that breaks my heart the most is when someone speaks of the guilt associated with their loved one. Not always a sort of “survivors guilt”, but guilt in the way that one cares for their loved one who has been stricken.
While I am no expert on management of the care for Alzheimer’s victims, I, being a nurse, have experienced death in many ways. But more importantly, I lived it with my husband and his late wife. From what I have learned and for what rings true for me is; we all do what we have to do to get through the nightmare.
Ultimately, it’s the Alzheimer’s victim who suffers the loss of their lifetime of memories and then eventually succumbs to death. But during their decline, the victim ultimately becomes “unaware” of what’s happening and seems to be (I use the word seem because we can only guess based on medical findings) oblivious to everything around them. But the other casualties of Alzheimer’s (who are so often forgotten) are the families and/or loved one’s of the victims having to witness the continued assault on their loved one. In the care, love and support that these “other casualties” give their loved one, they often second guess and doubt themselves as “doing the right thing”.
I feel that if any act, care or decision that is done out of love, how could it be wrong? That if you truly care about the victim and are making decisions about care, placement, end of life treatment, etc., that it can’t be wrong. If there was one thing I could do to help or encourage a caregiver and/or family member of an Alzheimer’s victim, it would be to ease their sense of guilt.
Perhaps shedding light on the subject that “Bleeding Hearts” addresses, I can attempt to begin to lessen the burden of guilt felt by so many.