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She takes total care. Her only mental health issue is untreatable depression. We live in the country and are told by our caregiving agency that caregivers from their small town don't want to go into the more rural area and this makes it too hard to help us with stable care. We don't ask for just one caregiver because they are here 4 times a day. We have asked for 3 or 4 regular ones They train them to work with my daughter, then move them somewhere else. Sometimes I find strangers in my kitchen when I get up. Sometimes I knock on my bathroom door and someone comes out that I've never met. It's very unsettling.

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I'm so sorry it has to be so hard for you at such a young age. If your mother has a medical supply that she uses, she can have them get a letter of medical necessity from her doctor and they can then get her some equipment that a caregiver can use when they come to take care of her. It's frustrating and it seems so hard. Her doctor should be able to help the 2 of you.
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I wish you all the luck, and bless your daughter for being so strong to go through this.
I'm a 20 yr old girl who takes care of my 60 yr old mother with MS. She has needed homecare for almost a decade now (the only other place is NH). 59 caregivers in 9 years sounds lower than her number!! It is so very hard to find someone to even just come day after day. In the past few months, we have been thru 4 agencies... all who seem to have no caregivers equipped to take care of her. A few have denied us service bc bathing her, helping with bathroom care, and talking to her is "too difficult" day after day. I train many different people coming in, and it sure is tiring.. I wish I had an answer to your problem. We are still going thru much of the same. I also live in PA. I hope you find much support here, and tht soon you find help for your daughter. My thoughts are with you.
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Thank you.There are a few services for her, such as the in home care, but seems to slip through the cracks for others. I'm frustrated, but Kate's depression only worsens. She felt like dying once when she was younger so I took her to the emergency room and they admitted her to their mental health ward. She was there a few days and they told us she could no longer stay because she required too mush physical care. She had a melt down a couple years ago and wanted to kill herself.so we call the Crisis help line. Someone came and talked to her for an hour and said they would call the next day. They didn't, so we call the day after that and were told they had no help for her because she was more like an old person and wanted to die but couldn't commit suicide. The last psychologist tried to make her feel guilty by telling her she was lucky to have a roof over her head and something to eat. If one more agency tell us they can't help and then says "good luck", I'm afraid I'll call them a bad name. Again thanks for the help and advice. I'll keep searching until I can no longer talk or dial a phone.
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I'm sorry you and Kate (also my daughter's name) are having a difficult time getting what she needs. I can't help but think that there has to be some services that are appropriate for her. She can't be the only person who has ever been in this situation. You must be very frustrated.

Keep searching, don't give up.
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We have had meetings with our agency and they only treat us like we bother them, and they seem to go out of their way to make Kate feel guilty. She wants to be independent and that is why I;m not her caregiver. Kate does not need constant care she needs someone to take her to the bathroom, bathe her and put her to bed,so she doesn't need constant care. She's very vocal and is intelligent. She wants to be on her own, but housing authorities around here have very few roll in showers. She can't go to a group home because she doesn't have an MR label. Personal care is out because she takes too much care. All that is left to her is a nursing home and there are very few peers. Nursing homes don't want her because youth are "too needy and demanding. A home for "someone like Kate" does not exist her. She wanted to be in a support group for depression but was told she was too unique and didn't fit in any group. If anyone in PA knows of a place for Kate to live or be a part of, please let me know. Thank you for answering my questions. It's nice to be in touch with people who care.
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My sister has Band Heterotopia and moved into residential care at the age of 25. By then my father was in his 60's and realized he had to make plans for her because he was too old to keep up the pace. She was much happier with her peers, the home was run by Lutheran Services. Private non-profits do the best job, I think, in running a group home.
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I work in home healthcare and inconsistent caregivers is the #1 complaint I hear the most. It's not just you.

The goal should always be to have a regular group of caregivers, people who are familiar with your daughter and whom your daughter is familiar with. There are many reasons why there is a revolving door of caregivers. Someone quits. Someone needs different hours. Many caregivers are students so maybe they have other obligations. You said you live in a rural area, that might be a reason although that sounds more like an excuse than a reason. A caregiver is allowed to turn a job down and is given the address of the client. If it's too far the caregiver can turn the job down right then and there.

You said your daughter requires complete care. Like, 24/7 care? And you have 4 shifts around the clock? That would be 4 6-hour shifts. Have you tried different hours? Instead of 4 6-hour shifts have you tried 3 8-hour shifts? Or 2 12-hour shifts? Smaller, more frequent shifts are difficult to staff but your agency won't tell you that.

On the flip side, most caregivers appreciate continuity as well. They don't like to bop around from job to job. When a caregiver finds a case that works she tends to hang onto it for dear life. I'm a nurse and I see the turnover in patient's homes where their caregivers are concerned and everyone feels the same way about it: the family, the client, the caregiver, and the agency. Everyone wants the same caregivers on a regular basis. The agency wants you to be happy, they don't want to lose your business. But sometimes it just doesn't work out like that so the agency has to figure out a way to get regular people in there on a regular basis.

If you haven't done so already I would encourage you to speak to your agency about this. I know how frustrating it is. You deserve a regular group of gals. Everyone does.
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Thank you for this answer. My daughter is 27 yrs, born with a rare anomaly called PETERS ANOMALY, vision in right eye of 20/400 at 6 feet, fake left eye, neurogenic altered bladder and generalized dystonia,has situational depression but can't take antidepressant. WE live in Clearfield Co.,Pennsylvania and Community Resources for Independence, Inc., is our service provider. We have been in touch with the headquarters but nothing has ever changed. We have jokingly teased that Kate should be paid for training caregivers because she trains them, they're here for a short period of time, then they go somewhere else and Kate trains another one. I get exhausted just thinking about it.
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I agree its unsettling- if you can- either seek out a different agency or if you are stuck because of "whatever" reason; time for a one in one appointment with the top - the head of the department. Since you haven't provided details if this is state run (what state) or private pay; this is the best I can offer. So very sorry about your daughter- sounds like a chemical imbalance- hope you will consider Holistic health. I have assisted many to good health by recommendation to source material to self educate. Good luck dear *hugs*
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