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 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 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.
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!
If the reply is 'I don't know, you're the doctor', the answer is 'Yes I am'. Treat it as a game!
"We made the decisions about mother, not you, because it's none of your business"
"Mother made her wishes clear to us before she became worse. We used those wishes to make our decisions. She didn't instruct us to consult anyone outside the immediate family"
"Mother had a DNR, living will and POA all that directed our actions, that's why we didn't do more"
"We made/are making our decisions about her health in consultation with medical experts."
"There's only so many treatment options for some conditions"
If the specialist doctors with years of experience, don't have an answer...you can't expect me to have the answer.
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.
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.
Of course, in the real world, that ain't gonna happen. Fact is, mental health, mental decline, mental illness sevices has been gutted since Regan-people simply do not care to discuss this, deal with it, let alone have resources available for treatment. The "why don't you do more" phrase is the best they can do when confronted with the realities of mental decline. Which in of itsself, speaks volumes about the level of denial of the reality of people affected by mental illness. Defining "more" would be actual mental health centers for those affected. Programs for people, other than health care professionals, that will support them as care givers. Reduce the stigma of getting sick in between your ears-that is the brain itsself. Otherwise, this feels right now like I'm in the Middle Ages as far as health care treatment is concerned. There is nothing. Nothing. One doctor suggested vitamins. Really? Vitamins. Of course more research needs to be done. Awareness has been raised by the Alzheimer's foundation. Yet-here we are, and can only watch our loved one's decline, and there is nothing to help them.
If anyone dared to say to me "can't you do more"-I will not indulge their ignorance by offering placating words and continuing their ignorance. Sometimes the truth hurts, but better to speak to the truth than to allow ignorance to continue.
Next time someone asks me about "doing more" ...I'll tell them. that I am doing more. I'm in the bowels of the covid19 frontline keeping the covid19 away from her ! That's what I'm doing.
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.
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."
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.
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.
I have actually answered questions with 'I don't have a magic wand - wish I did.. ' many many times.
Is there any possibility the folks asking these questions, in what appears a rude way, are being blunt? Or have a factual direct manner?
I only ask as I have some straight talking relatives that will ask very direct questions - in return they expect factual replies. There is no overlay of judgement at all with them.
I too have asked direct questions to caregivers about why they have done things a certain way, or not done this or that. Including asking why they have not hired aides etc.
My aim was not to offend & I hope they did take offence!
I asked to find out what barriers existed to arranging the extra services/treatment the caregiver mentioned but was not proceeding with.
But also, I DO know the know-it-all type that is quick to jump to conclusions & then advise in the *you should* manner. Yuck.
"Thank you for your concern" can be used as a polite shut-up alternative for them. Then ignore them.
I had that happen to me over thirty years ago. My mother had died, and I had a younger sister that was severely disabled and was born with Downs Syndrome. It was a real challenge. I had to maintain the family home, repairs, shopping, and laundry since my sister would be incontinent at times. I scheduled and attended doctor's appointments for my sister, daughter, and myself. No one realized how much of a juggling act this was and no one cared. They were all busy with their lives. Also, I worked a full-time job and was attending college along with these other duties. It was too much. I got laid off from my job due to the recession and there were changes in home health care. It took me seven months to land another full-time job back then. I had started the process to having my sister placed in a beautiful group home built from the ground up. It took a while, but everything worked out for everyone. I even found a nice apartment further uptown. I've been here for the past thirty years. I could move, but there is such a sense of community here. My neighbors are nice, and the surroundings are historic. I'm older now, and I'm staying put for now.
But still...that sort of burden is something my older sibblings never had to bear when they were getting married. When my older sibblings got married both my parents were strong and healthy and could contribute to the wedding.
But I have the burden of :
1) being the de-facto doctor of the family
2) trying to sort out my own personal life by getting married and starting my own family.
3) doing all these things without the help of my parents who are both now to elderly to help me in any way.
How did you do it ?