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My sister definitely doesn’t qualify for Medicare or disability, our finances are too intertwined and she’s been unemployed too long. I did moderately well in life and saved quite a bit. Savings are enough to last the rest of our lives, assuming we are careful with spending. That means that for her to qualify for Medicare, I’d basically have to deplete most of my savings and hers as well…since she is mentally disabled there’s no way to unwind all of this. I’ve wasted money on several elder care attorneys only to be told the same answer. So, I’m on the only route that works for us…stretch out my caregiving until it become impossible to stretch the funds at last until Medicare kicks in. And hopefully keep the people out of our lives who make me feel inadequate and jealous of their picture perfect lives.

thanks for the suggestions, which I find helpful.
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sp19690 Dec 2022
I see she's only 57 so you have 5 more years of this. I am so sorry you are going through this it sounds like a nightmare. I don't know how you do it. I dont think I would last a week. I am really sorry even elder care lawyers can't help and offer you an alternative to what you are having to do day in and day out.
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When my sibling visits there are a lot of suggestions and ideas to improve my
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
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I cant imagine your being able to take care of her for the next 10 or 20 years. Hopefully you have looked into getting her qualified for Medicare or talked to an elder care attorny to see how she can get skilled nursing home care without you paying for it.

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?
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You should ask the nut case that told you that you would rot in hell for cleaning up like and poop on the Sabbath if she wipes her ass on the sabbath. What a religious nut case. So many twisted people using religion to justify their defective and insane thinking.
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I've been through this too. It was a relative who thinks she knows everything. She kept urging me to do ridiculous things, like feed dad mashed potatoes because someone says that cures cancer. He didn't like and wouldn't eat mashed potatoes. Then there were demands about what he should be doing for recreation as he lay dying (which she wouldn't accept), cutting remarks that he really didn't have dementia and was just bored, and on and on. She wasn't interested in helping and never did. I bent over backward to please and appease her. I ignored the accusations and hurtful things she said to me and to others about me. We ended up estranged anyway because I couldn't stand her anymore and didn't want this toxic person in my life ever again.

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.
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You deal with these people by using one of two responses. You may even want to use both.

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.
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I see from your profile your sister has a Dememtia. So sorry she is so young. Is she on Social Security Disabikity? If so she hets Medicaid, right.? If not she should be on SSD. I know u don't want to get into why she can't get Medicaid. Did she not pay into it? Was she not married to someone who did pay into it. My Mom only worked 3 yrs or so and quit after she had my sister. Her SS and Medicare was based on Dads earnings.

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.
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BurntCaregiver Dec 2022
@JoAnn

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.
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You're between a rock and a hard place with some financial interdependence that keeps you perpetually stuck as her 24/7 caregiver. I'd imagine you wish you'd seen this coming and not become so entangled as to be unable to change the situation.

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.
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I would strongly encourage you not to cut anyone out of your life unless they are truly toxic. Many are simply ignorant as they haven’t walked your path, they can’t see what you’re experiencing and really don’t want to, many unconsciously think bad things are contagious and don’t want the bad things to affect them. I used to feel much as you do. For almost 30 years now I’ve had a son with complex medical issues and a brain injury from it all. For a very long time I wanted to cut off people who said stupid things or just didn’t get it. But I came to see, they couldn’t help not understanding our path, their intentions weren’t evil, just ignorant, and my resentment hurt only me. Some of those same people have now been big helps at times over the years, some not, but I’d never have found out if I just lashed out and cut people off. I hope you can change tactics, interrupting the comments midstream and saying “thanks for your concern, would you like to know what kinds of help we really could use?” Some you’ll never hear from again, and that’s okay. But maybe some will surprise you. You’re not superwoman, you have a long haul here, and accepting help is desperately needed. Getting angry is very understandable but it doesn’t get you anywhere. I still have some complete bummer idiot friends and family, I’ve learned to accept them warts and all. And I’ve developed deep gratitude for those who’ve learned and come through in times of need. I hope you’ll find some of the same
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sp19690 Dec 2022
Can she cut the woman who told her she would rot in hell for cleaning up puke and crap out of her life?
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