I have been the 24-7 caregiver for my younger sister for about 5 years. She is 63 years old and under no circumstance can qualify for Medicare (long story, so no need to discuss that). I am financially, physically and emotionally her full time caregiver. If I put her into any type of facility at this point, it will break me financially. Since she’s only 63, she will likely live a long time. So my only hope is to try to do everything myself to stretch the funds as long as possible.
NOW FOR MY QUESTION. How do I stop outsiders from giving totally unsolicited suggestions and comments about the situation. One woman told me I’d rot in hell for cleaning up vomit and poop on the sabbath, like every other day.
A common comment is that I need to stop “Being a perfectionist”. They say it’s too time consuming to fold clothes the way I do (since my sister hides dirty clothes everywhere, it’s the only way to tell which clothes, including mine, are semi-clean). Im told not to clean so much, even though the stench of vomit always lingers in the air. I’m told that I should make simpler meals, even though cooking is one of my few outlets/hobbies. I’m told to buy a bigger car to carry her wheelchair, even though I don’t want to give up my little car and spend money on a car I hate.
Everyone gives unsolicited suggestions on how I should better care for my sister. Do they REALLY think I haven’t spent hours every day looking for treatment, equipment , causes and solutions? Do they REALLY think I don’t take her to a plethora of docs? Must they really assume that I am stupid, despite having a PHD and a successful career before I retired.
no one offers to give me a couple of hours break or to pay for any of that equipment or home care that they believe I should spend my money on. Just comments on what I’m doing wrong. I have anther sister who insists that she can’t help because she isn’t used to handling vomit (like it’s something I could ever get used to). She also claims she can’t contribute monetarily because she doesn’t have the funds (she was a big shot at a major corporation, and often brags she got upper six figure bonuses, and is taking three months of vacations this year alone). She loves to come to my house complaining about her bad golf game, or excitedly telling me I should have gone to be party or another and that I really would have had fun? Does she really need to rub her picture perfect life in my face, while I stink of vomit?
As people make these so-called well meaning comments, I cut more and more people out of my life (most recently cut off the bragging sister). So now it’s just me and my Alzheimer’s sister 24-7.
I know that I should be more thick skinned, even though I’m at the precipice of insanity myself. But, how does everyone else deal with unsolicited insensitive remarks by people who aren’t willing to prove any substantive assistance?
thanks for the suggestions, which I find helpful.
caring for my parents. I have learned to just say "That's great! You can take that on!". Nothing ever happens and I just shred the paperwork. It is not my job to jump up and complete every request. I think a lot of absent sibling suggestions come from guilt and their way of relief is to stir up trouble with some new senior service that will restore parents to their former glory. There are not a lot of family I speak to anymore. At first it was I was absolutely crushed but not so much anymore. I am starting to enjoy my new life free from crippling co-dependent family relationships. When my parents ask about them I just change the subject.
You might want to contact APS and the Alzheimer's/Dementia associations in your community. Maybe a eldercare attorney?
Good Luck! Put yourself in the equation! Take care of yourself!
I wouldn't want to live in a vomit/urine/poop smelling house either
What happens if you die or get sick? You may have money that would pay for her care if you died via an inheritance but eventually that would run out then what would happen to your sister?
What you're describing isn't unusual, and you have to realize that you're playing a long game. If it's making you sick, like increasing your depression and anxiety to the point where you're not taking care of yourself, you may need to make it a short game as far as they're concerned. I gather you've already started that. Would it be possible to cut these toxic folks out of your life completely and replace them with a group of people who understand what you're facing and will provide wholehearted support? An Alzheimer's support group near you might be what you need. Good luck, and I hope you find a solution that will make you feel better.
Response #1:
Shut the hell up. I don't need your suggestions and or your peanut-gallery comments.
Response #2:
Don't tell me. Show me. If you can do a better job then I'm doing then please, be my guest. Go ahead you take over. If not, shut the hell up.
Try these out. I think you'll like them. Also a little FYI. Your sister is not a minor. You would not be responsible to pay for her care if you put her in facility care. If she is disabled and does not qualify for Medicare then she is on Medicaid and probably SSI disability.
Medicaid pays for residential care.
Have you spoken to Medicaid about your sister entering Longterm care with them paying. This is too much for you.
Try placing small bowls if vinegar around, out of sister's reach. It may help with the smell.
She qualifies for Medicaid. Maybe not Medicare if she never worked or married and had a spouse who did.
If she's not on Medicaid it's because there's either money set up for her that can be drawn on or she isn't a legal American citizen. Some states actually let illegal residents go on their Medicaid program, which of course they should not but do.
Tell people to take a hike. People have no clue what your life is like and they have zero basis for trying to tell you how to care for your sister and that little bit of self care you're able to fit into the daily routine.
Simply put up your hand and tell them to stop, as soon as the launch into their baseless tirades. Or, ask them to write down their 'suggestions' and drop it in the mail, you get to reading it when you have time. Hand up the phone, block their numbers, walk away.
Pls find some support nearby for caregivers and allow yourself the grace of developing some relationships with others who actually understand your very difficult situation.
Ultimately, if completely unable to untangle the finances with one more very thorough review, incl possible downsizing, you have to start cutting these toxic ppl out of your life. God knows your plate is heaping as it is.
Walk away from these ppl, they can kick rocks.