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It started in 2017… I finally was able to coordinate care from 8am to 11pm through the waiver program in 2019. At that time I had a full blown mental breakdown. I was just starting to feel like I had my life back… and all the sudden the agency that we use says they can’t fill night hours 4-11pm x7. As of August 1… with one week notice. His UPMC Coordinator is diligently seeking to fill the hours. So I’m back to sitting at dads 49 hours a week. I’m already feeling very weary.
I worked hard to get care in place for his safety. I have always said I’m not the caregiver. I want anything to do with it.
‘Now I realize that they have no emergency plan for him through the waiver program and they have respite… two weeks per year. Wow, I wasn’t told that.
I'm told I’m not responsible for his life… really. Knowing all the evidence is there that he is not safe. He was an alcoholic all his life. He has only one friend who used to visit but he died. I am his only family that will be responsible and diligent for him. I gotta tell you… I am pretty sure I can’t do this anymore. My whole life has been so throttled through this whole ordeal. I am now neglecting my husband, my children and grand children. And I can’t live with that. Oh did I mention that my husband and I both recovering from Covid… I am exhausted.

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In the beginning they begged me to help him. I told them I am not a caretaker and have no intentions on it. But I pushed for his help…. Figured once he had help it would let me go back to life as usual. I could visit like a daughter would…
I always took on Getting his groceries, etc., all Dr. appointments because the agency doesn’t have transport. I don’t mind helping that way…but I’m self employed…8 years. I can’t sit 49 hours a week. At his place unless it’s temporary🙁
I'm terrified to just not show up and leave him alone all those hours… I really am losing my mind about it.
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SnoopyLove Aug 2021
Worst case scenario call APS about an at-risk elder if you are worried about his safety. I hate it when caregivers get shanghaied into providing care at the expense of providing for their own basic needs. Caregiving isn’t slavery!
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I agree, you need to place Dad. Have his PCP say he needs 24/7 care.
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MistieLee Aug 2021
My dad was put down as 24/7 care… we could not find any home who would take him because he was hostile. When they did the waiver program they promised he would have 24 back to back nurses. We got 8-11pm. Because we are in a rural area. My dad has PCP, psychiatrist and a neurologist. The only people who are benefitting is those getting paid. No one had told me that he is incompetent nor gave me any paperwork concerning it. I am not a Dr. and I know he isn’t safe, besides the proof is in the last 4 years of care. Nurses keep track of everything. I don’t feel like the system is for him or me.
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Your father needs to be in a nursing home then. Do not take on caregiving responsibilities if you are unable to and make sure his case manager knows that. Tell him/her your father needs to be placed in a facility.
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