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I see people telling others how they can’t do it alone. How they are or will become burned out. What if your loved one has no other relative or living friends but you? They have too much money for Medicaid but not enough to hire an aide more than a few hours a week. What about the unmarried senior with no children, no living siblings or friends? They may hire aides but have no one to manage the aides? I know of aides robbing seniors and being rough with them both in their homes and in nursing homes. Sometimes it falls on YOU and YOU alone. Sometimes all you can do is try to get some sleep to face another day. One day at a time, coping with strong emotions, connecting with friends by phone and other caregivers on forums like this. It is never easy or simple.

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I am an only child and this is basically my scenario. My husband helps some but he cannot do much as he works and we still have a teen at home (sandwich generation). My dad has outlived all family except for my 1 cousin who lives 30 mins away and she only is able to visit some as she works a lot. It all falls on me. It sucks, I have caregiver burnout. I have been thru a recent crisis with my dad, who turns 90 today, and after a bad fall, hospital stay, surgery, and rehab, I am keeping him that SNF where he did rehab. We cannot afford 24/7 caregivers at home, so now I have to also clean his entire gigantic house and get it ready to sell, and that is a daunting task, as he and my mom were borderline hoarders. It is a lot. I get it. I get angry when people say ask for help - from whom? I do hope now that my dad is in a SNF it will become a bit easier for me. I need to still be a mom and also have a job. I have recently found this forum, and it's been very helpful. Anyway, just a vent to say, I hear you and there are others out here experiencing similar situations and it's just hard.
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I actually always wonder about this but for the reason that I am estranged from my family (because of what they've shown themselves to be during this caregiving I'm doing), I am a widow and have no children. I always wonder what will become of me. I've a POA that's listed an elderly cousin (older than me). My father had Alzheimer's. I'm not real hopeful about this.
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Terra: "My dad passed 3 years ago and last year my mom underwent a precipitous mobility decline and her narcissistic side came out full force, to the point where I am physically, mentally and emotionally exhausted... and I am second-guessing everything I thought I felt about my family. I barely even know who my mom is any more."

You are exhausted in every way, and now you are going to add your aunt to the mix?

You also work....just how is that going to happen when you will be a caregiving slave to TWO elders?

How is it that your sister was able to escape this, and you won't allow yourself to be freed?
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Terra. Please check your cage door. You assume you are locked in & Mother has the key.. The cage is not locked. You are free to leave at any time.
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I'm also the only person able to help - my narcissistic mother who is hell on wheels and falls frequently... and her younger sister (my aunt) who is probably going to have to come live with us in our wholly inadequate house in a PACE program or something. (They don't get along.)

I've already resigned myself to the fact that I'm going to die of the stress and lose all my money. There is no one who can help me. My mother has even rejected the geriatric care manager I hired and also the aide we got. As for my aunt she has zero assets and will have to be on Medicaid and all the phone numbers in the world won't help me if I don't have time to call them and be put on hold endlessly or never get through to anyone which is the way it is in COVID times.

I don't love my mother any more. She is a horrific narcissist and her behavior has only gotten worse. I don't want to see her face or hear her voice.

Neither of them really listen to me and both of them are completely clueless when it comes to the real world.

People say "Take care of yourself" and I say, For what? There is no way out for me but dropping dead. I will have no life, why should I hang around for that? Honestly, these two will outlive me and I really don't care what happens after that.
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Plan according to your needs, but know what you want.
I know with absolute certainty I will never go to any facility AL, NH. First, they are totally unreasonable, here average AL starting with $7000. Secondly, we are both fiercely
independent with our ideas and lifestyle.
We were going to enjoy nomadic/ bohemian lifestyle, but Parkinson showed up and after 7 years things are not the same.
Few years ago we lived in South America.
There was a bar/ restaurant we went often with other expats, there was this couple, he had stroke/ dementia, not sure as we never asked out of respect. Anyhow, his wife used to bring him for supper/ drink and after few hours took him home and come back and enjoy herself. Saw him with his nurses on the beach often, happy, content, always smiling. The cost? Beautiful house on the beach, maybe $200,000. Cost of living $1000 + insurance, nurses at $ 1000.
We lived together and separately in 5 countries, I am convinced there are better places to retire.
I know, if I have to face it alone there is many options.
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If this is your husband, you may not make too much. Like said, you need to see an elder lawyer. Medicaid allows for splitting of assets. If you place your husband into Longterm care on Medicaid, you become the Community spouse. You remain in the home and are allowed a car. You will get some or all of the monthly income to live on. Your husbands split of assets will go towards his care and when he starts getting low on funds, you apply for Medicaid.
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BarbBrooklyn is right about costs in many cases.
If you eliminate the mortgage, property insurance, gas bill, electric, water, sewer, garbage, food, auto maintenance, insurance (most facilities have transportation to local stores and outings to a variety of places) and the cost of caregivers if there are any I think you will find cost of IL, and AL comparable to maintaining and remaining in your home. As a person declines and needs more help then the cost does increase but it would increase at home as well with caregivers for more hours and doing more.
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Kathleen, when folks say "too much for Medicaid but not enough to hire aides", I always recommend a consult with abhighly qualified eldercare attorney and a talk with the local Area Agency on Aging.

Every state in this country will pay for NH care if the client is medically and financially at need.

Many states have waiver programs which help keep folks in their homes.

If there is a spouse at home, it is DOUBLY important to see an EC attorney--Medicaid does not want to impoverished the community spouse.

I found with my mom that she made A LOT of assumptions about what facility care cost, and although we had serious sticker shot when we saw the price for independent Living, my MBS sil quickly calculated that the price didn't add up to much more than what it was costing mom to stay at home with help.

Mom kept saying "but I heard you needed a million dollars in liquid assets to...."

She was wrong. Consult an expert. Please.
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I tried to leave no stone unturned when looking for help.
There are Senior Volunteers in the area that will help out a bit on occasion.
I found the VA was a great resource for me. I contacted the Veterans Assistance Commission in my county and through their help got my Husbands military records. He did not have what is termed a "service connected disability" BUT I was able to get some help they covered a few days a week of Day Care that gave me a break. As he declined and was no longer able to go to the Day Care I found other programs that would help pay for caregivers.
When my Husband started on Hospice and I was able to use a Hospice Volunteer on occasion.
Your local Senior Center may have information on programs that would help you. Your local Agency on Aging might also be of help.
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Very true what you say.
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