Yesterday, my brother and I discussed something which angers both of us about caring for our aging parents....that is when someone else asks us why aren't we doing more.
It felt so carthartic talking about it in the open. I thought, because I was a doctor, I was the only one being constantly asked "why don't you do something more?" by our extended family (cousins, aunts, uncles etc).
I was glad to hear my brother say that he gets that too. Its frustrating.
Do you have any idea how often I get this from my extended family? As if they think I can just come up with some magical diagnosis/treatment plan that none of the specialists have thought of.
It was nice hearing it come from my brother too.
My father, my brothers and I are trying the best we can. We are greiving too along the way. We are the ones who see Mom's decline everyday as we take care of her.
We ARE doing our best, and nobody else but us know what we go through with her everyday.
For everyone else it may just be a phone call, or that sick family member you know of...but for us....its a lot more personal.
I would like to actually say that but I think all the venom and rage with my family take over and it wouldn't be pretty.
That puts it back on them to explain why they'd say something so boneheaded. Watching them stammer and try to backtrack would be worth it, I think. 😉
Sorry there are boneheads in your family.
1. For family members, when they ask a "why" question, if you can keep a "straight face", you could respond with something like: "I'm glad you raised that issue. We do need to address that issue. How will YOU be willing to help? I can send you a list of everything else we're considering so you can decide what you will do to help us. How soon can you help us?"
2. For nonfamily members, I think a query to the effect of "what did YOU do when you took care of your family members?" That should shut them up.
Personally, I think that people who make these kinds of rude "suggestions" are trying to place blame on someone else b/c they themselves aren't or haven't been supportive to their own families. It's kind of a "blame the other guy and I'll feel better for my lack of participation."
Being in the middle of an intense health situation with my mother, its almost like people think that there is a magic cure for everything. A diagnosis and a pill that will miraculously transform a frail, broken body into a tap dancing cabaret star. They put blinders on to the reality of the fragility of life.
I have never found a solution to dispelling the ignorance but many of that type make a single visit to see Aunt Margaret at the SNF, express their shock and sorrow, and are never seen again.
One such “helpful compassionate type” visited THE FIRST WEEKEND MY MOTHER HAD BEEN PLACED, then NEVER showed up again for the 5 1/2 years my mother was there, but DID find the time to appear at the cemetery and eat the lunch provided for MOURNERS.
Handling this kind of “help”. Take it with a grain of salt!
All they see is Aunt Olga sitting in her chair smiling with a blanket across her lap and her hair combed for a 1 hour visit or however long. They don't know she's wearing an incontinence brief. They don't know she no longer knows what meds to take and when. They don't know she needs meal prep and bathing assist. They don't know her laundry needs to be done. They don't know she allowed someone she'd never met into her home when she was there alone. They don't know she threw the mail in the trash and routinely leaves her phone off the hook so no one can reach her.
Even when onlookers are TOLD all of these things, they figure it can't be that bad and remain in denial. Much easier to ask WHY more isn't being done. Sometimes, it's simply all been done and other elders likely receive even less depending on who they have advocating for them. When people ask these questions, it's often their own fear talking. They worry about what will happen to them as they age and figure there MUST be a solution. Sometimes there isn't a good answer that everyone likes.
"I am sorry, but I must tell you that you are overstepping your boundaries. Please don't do it again. I can only hope that we will be able to stay in communication, but another such instance will mean that we cannot".
Full stop.
You are right to be very angry.
How DARE they. And what about you makes them even BEGIN to think they can get by with this.
Some people are just ignorant. When they are you need not to put up with it. Your plate is full enough. It isn't as though we don't examine and re-examine our own limitations ALL THE TIME, laying in bed fretting and worrying and wishing we were up to doing more.
I am so sorry that people can be so cruel. It is a terrible added burden. Just see to it that you don't pick up the luggage they drop in front of you. Don't descend into guilt when what you are feeling is GRIEF, the "other G-word".
I am a registered nurse and I realize I can't "fix it" or "do more" than I have time, strength, energy... I realize that my job is to put people into the best situation for healing or health or care, then I leave the rest up to God.
If the reply is 'I don't know, you're the doctor', the answer is 'Yes I am'. Treat it as a game!
There was so much I wanted to yell.
"And if the presence of the stranger in the house drove Mom into a fit of confusion...would you come and help us calm her down ?"
"instead of telling me why didn't we get a care-taker...why didn't you offer us one ?"
"If you know how to get a caretaker, why didn't you hire one yourself for us?"
"Are you willing to help us pay for the caretaker ? because all these brain scans and neurology consults ain't cheap !"
It would be wonderful if they would step up in some of the ways your unspoken responses suggest, but that is not likely to happen. More distant family members are probably relieved to be far enough removed to evade responsibility. They won't appreciate the difficulties until they are responsible for someone closer to them.
Take care of yourself and continue to do what you are comfortably able to do.