Today Mom mentioned in one of our conversations, “People always say Alzheimer’s is hardest on the caregiver.” In that moment, I realized just what this often quoted statement might mean to the person with dementia. We were in the middle of talking about how often caregivers speak for their loved one and how infrequently we actually hear from the person with dementia. We said we need more support for the actual patient, and Mom came out with the statement above. I felt like Mom was minimizing how bad this disease is for her because she was taught to do so.
In my experience there are a whole lot of books and support groups for caregivers of people with Alzheimer’s and dementia, but often the actual person with dementia is left out. I hear the quote Mom said at least a few times a month. I rarely hear people say how hard this disease is on the actual person who has it.
Yes, dementia is hard on the caregiver, there is no denying that. I just worry when we focus so much on the caregiving side that we are giving the impression to our loved one that their suffering does not matter. For some this statement may also make them feel guilty, as if they are a burden on their caregivers. I don’t want Mom to have the impression that she is a burden or that her experience of how difficult this disease is is not valid. I actually felt ashamed that Mom so readily repeated this statement. Of all things I want her to remember, that statement is not my first choice.
Being a caregiver is hard now and will only get worse. However, the disease is very hard on Mom too. I can see how hard it is for her. How she is scared of the future and the fact that one day she may not know who her children or husband are. How she feels as of her life has lost it’s purpose because she is so limited in her abilities. This is the one illness she was most afraid to get because she lost her mother to Alzheimer’s. This, in many ways, is Mom’s worst nightmare become reality.
I don’t want to compare who Alzheimer’s/dementia is hardest on. It is hard on us all in different ways.