Several years ago, decades actually, Harvey and I led a Sunday school class on grief and dying. One week we focused on what not to say to a grieving person. It strikes me that the same lesson applies when addressing a caregiver of a person living with a diagnosis like Alzheimer’s disease or another dementia.
While people do mean well, and their intent is not malicious, my point here is to explain how it feels as a caregiver to hear these statements. Warning: I may get a little snarky! This topic will continue into next week, and I’ll conclude with What TO SAY to Caregivers.
“I know just how you feel.”
There may be someone out there who knows exactly how I felt while I was trying to keep my medical practice going, parent two teen aged daughters, and provide a safe, fulfilling life for Harvey while he lived with Alzheimer’s disease.
But I doubt it.
Expressing this sentiment is meant as a kindness and as a way to build relationship, I know, but you do not know how anyone else feels in any situation. It’s actually arrogant to think so.
Maybe you mean, “I am so sorry you are going through this. My parent/sibling/spouse/friend had Alzheimer’s disease, so I think I understand some portion of what you are going through, but I can’t really understand your particular situation.”
That’s the thing with Alzheimer’s disease and other dementias. Because each person’s brain is unique, how the disease affects an individual is unique. Support groups know this better than most. As we shared our particulars, we realized how different each situation was. Yes, there are commonalities, but every case is unique.
Saying “I know just how you feel” is particularly worrisome when said to some caring for a loved one with a younger-onset dementia. The disease manifests similarly, but the way it affects the lives of the families it touches is not comparable to the much more common older-onset Alzheimer’s disease.
“Everything happens for a reason.”
I find no comfort in this statement. What possible “reason” was there for Harvey to have Alzheimer’s disease?
Life is a mystery.
God did not cause my husband to get Alzheimer’s disease. And God did not cause a hurricane or a tornado to deliberately wipe out a community. I believe that God created the world and set it in motion, but God is not smiting individuals with illnesses or nations with weather disasters. Maybe there is some grand plan that we don’t fully understand, but a God of Love does not choose to inflict pain on creation. It might be scary for some to think that God is not in total control of the universe, minutely controlling creation, but it’s scarier for me to think that God cherry picks persons destined for tragedy.
Well, I didn’t realize I had so much to say on this subject until I started writing! There may be many installments of this series, as I’m just getting warmed up.
Be careful with your words.
6 Responses
I cringe at hearing “ He seems to be fine” or “I wouldn’t know he had dementia.” That says that l’m exaggerating or lying. So hurtful
Oh, you’re absolutely right! That’s horrible. I’m adding it to the list!
Thanks for sharing these statements. You are so right and this info needs to get people to understand saying things is not as helpful and being present with people and caring.
Absolutely. People just don’t know what to say or do. I’ll get to that in later posts!
“Everything happens for a reason…”. How those words have angered me… when I know people were trying to say something… comforting.??
I hope you do have more to share on this particular subject.
Yep! That one is on deck for next week!