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?
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I think to accuse your siblings of having 'picture perfect lives' is to begrudge them THEIR lives because your life is so consumed with the 24/7 care of your sister. That she doesn't qualify for Medicare doesn't necessarily mean that YOU have to devote 24/7 to her care and management. You say you have enough money to last the rest of your combined lives, if you spend wisely, and I would consider you spending some money on in home caregivers to give YOU respite 'money well spent.' Or spending money on adult daycare for your sister to give you back your sanity which is hanging on by a thread.
To begrudge others their lives b/c you have an unfavorable one begs that you rethink that life now. Others who offer you suggestions on caregiving may be genuinely trying to help you, seeing how bogged down you are, wanting to see you experience some joy in your life. Do you honestly feel they are trying to upset you or anger you with their ideas? If so, block them on your phone or refuse their calls. If you do wind up taking a call or a visit from someone who offers you an unsolicited or insensitive remark, try telling them how you feel about that remark or better yet, ask them for what you NEED from them. Until they tell you NO to your face that they will not help you, you don't know for a fact that they are unwilling. And if the answer to your plea truly is NO, then find help elsewhere, by paying for it, so you're not asking for 'freebies' from anyone, feeling you 'owe' them for any favors.
As far as a person telling you that you'll "rot in hell for cleaning up vomit and poop on the sabbath, like every other day", I'd cut that person off at the pass. Block them on your phone and out of your life completely. You need that kind of nonsense in your life like you need a hole in the head, fgs. I had a cousin who drove me crazy with BS when I was caring for my parents, so I wouldn't take her calls at all during the heyday of my stress. If I wound up talking to her and she aggravated me, I'd wind up yelling at her & giving her an earful, truthfully. Hey, you want to call me with BS, then deal with the consequences g/f.
Realize that you're in a very vulnerable position here where you DO need help, with or w/o "Medicare" kicking in to insure your sister. Figure out how to ease your burden a bit and find some joy in your life before the stress of all this kills you. Then what happens to your sister? Then Medicaid kicks in and social services places her in a Skilled Nursing Facility, in reality. I'd hate to see you become a statistic :(
Wishing you the best of luck setting down boundaries with the people in your life offering you useless suggestions on how to better care for your sister.
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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.
"I thank you for your concern but I have a system that works for me."
"If you would like to help out could you come by at 1:00 on Wednesday I would love to get to the store and I could use someone to sit with "Betty" while I am gone, she would love some company"
"If you would like to help out there are a few things that I need from the store would you mind picking up a gallon of milk, 2 dozen eggs and the bag of chocolate chips that is on sale"
If these are phone calls...then it is...
"Gee I'm sorry but the timer on the oven is going off, I need to get the cookies out, thanks for calling" HANG UP.
Don't answer let it go to voice mail.
Email...don't respond delete.
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
Exactly what you mentioned mid-way through I was thinking why don't they just roll up their sleeves and pitch in.
You can't leave any type of urine, upchuck to put it politely, you have to keep up with everything. The stench would be unbelievable. There are no days off when someone vomits, etc. That would be the worse thing you could do. The laundry needs to be kept up with as well.
No one wants pity they want an extra pair of hands, services, gift cards, etc.
In all honesty I don't see how you can keep up with this pace solo. Is there any type of day respite programs in the area that offer transportation? You need a break.
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