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.
A friend recommended your blog when I shared that my father-in-law was diagnosed with early Alzheimer's. I don't have experience with this disease, but I do have experience as a cancer survivor.ReplyDelete
I was diagnosed with chronic myelogeneous leukemia in 1993 and went through a bone marrow transplant, which was beyond horrific. My transplant doctor calls the procedure barbaric. But I didn't suffer the way I saw those who loved me suffer. I just went through it. I did what everyone else who has gone through it has done. Coped. Was it easy? No. Yes, I could have died. But my emotional turmoil was minimal. Not so with my loved ones. I had a recurrence a few years back and my partner had a horrible time of it. Again, I didn't have near the level of turmoil she did, though I did have grief and fear.
I've said for a long time that things like this are harder on the people who love the patient than the patient. I don't think that's unique to dementia.
Thank you for sharing your story. It is powerful and helpful when we share our experiences and we find many of the things we go through are not unique to one illness or another. That way we can have compassion for each other in what we are experiencing.
Many good wishes to you and your family.
Thank you for pointing out that there are few support groups for those of us who are aware enough to realize what is happening in our brains and still care enough to want to connect to others who are sharing this journey.ReplyDelete
I was diagnosed with an early onset dementia when I was 42. I am 53 now and continuing to find ways every day to combat the things the dementia is taking away from me.
Some of the local Alzheimer's Association chapters have actual support groups for people with early onset Alzheimer's/dementia. If you have not already, you can see if there is a peer support group for you.
I saw your recent blog posts, they are great! Maybe blogging will be a way to connect with others too.
I look forward to following your journey and insights.
Thank you for your kind words, Rev. Katie. I don't have Alzheimers so my progression is different from that of someone with Alzheimers. End stage, it will be the same but I am, thankfully, nowhere near end stage. And by the time, I reach that stage, I will be long past the point of being functional enough for group support to matter.ReplyDelete
That said, any type of support like that would be better than none but I would not have any way to get to a real life support group anyway as my caretaker has her own medical issues so usually only takes me out in real life when necessary (normally when I have a doctor appointment or medical test - i.e., something that I have to actually be present for)as it it takes a lot out of her to even go out herself, let alone take me with her.
I have been looking for an online support group for others like me but I have not been able to find any. They seem to all be for the caretakers instead.
Please let me know if you ever stumble upon an online support group for those of us living with early onset dementia, those of us called "high functioning" dementia patients. Thank you again.
Stumblinn, I did not know there were no online support groups for people with dementia. Maybe there is a need here that we could create? If you are interested in talking about that some more, please email me at firstname.lastname@example.orgReplyDelete
I do know others with early onset dementia and maybe we could get an online group going.