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My mom lives next door to me...Hospice tells me that if something should happen to her (ex: house fire and she dies) that I could be found 'negligent' because I'm her primary caregiver and she shouldn't be left alone. I have a monitor so I hear everything that goes on when I'm not physically there, I don't go anywhere except to shop once a week and my neighbor keeps an eye on her for the couple of hours I'm gone, so what's with this? Honestly, this info really shook me up and made me feel totally defeated! What am I supposed to do? Camp out at the foot of her bed in case something happens so I don't end up in prison?

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My mother is in the same condition, and I work but take care of her at night (and live there), and my elderly dad "watches" her during the day. Occasionally, he has to run to the store, which he does, so she is sleeping in bed while he is gone. No one has ever said anything, if they would even know, but what else can we do? Same as latchkey kids,etc.
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My brother had PD, and when they had to move him out of his house (my SIL had died shortly before this) they found a small condo near his son's house, and a home care provider boarded there with him. His son or DIL were there as much as they could be. When he became more disabled, they moved him to the son's house, and the caregiver was there for part of the day to relieve the family. Fortunately the caregiver was a very good person who loved him and took care of him as if she were family. If you could find the right backup caregiver, that might take care of the possible neglect issue.
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Sulyn, we also know of PD patient, so I understand what you say. Continue with your caregiving mom. This is not the first time hospice, neighbors, and other caregivers have criticized. I am thinking if you ignore the comment, nothing will happen. Or, you could be over-the-top and report to APS the hospice worker's comments and get their input. I would not report.
If everyone gave their input, your mom would be locked away somewhere instead of at home. Same with our PD charge, would be in a nursing home,, oops, but there he goes, down the street in his walker to visit, gotta run, we keep an eye out for him as he is rather difficult to keep up with.
So sorry for what you are going through. And the fact that your care plan doesn't fit everyone else's idea is just too hard for them to deal with. Sounds like you are doing the best you can and your best may unsettle others putting them to shame.
Keep on, you are in a hard place, keep checking back, give us a chance to hear more of your concerns, or just to vent. How are you today?
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You have every right to be irritated. This is just the hardest stuff to deal with. When I go home to visit and stay with my folks for a few days I'm a total wreck when I get out of there. It takes me a week to get back to normal. You are clearly do the best anyone could be expected to do. I s she on any meds to calm her?
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You have my empathy, it's awful I know watching people disappear before our eyes even though their bodies remain. My bil can be the same, it's so hard not to say I've heard this story a squillion times and that's in the last half hour.
I don't do prayers, but my thoughts are with you.
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Sorry if I sounded irritated...I am! but certainly not at anyone here. Just the idea that anything might be deemed 'neglect' after all the years of putting up with this situation, watching this perfectly nice woman become someone I don't know, and having to deal with all the stuff that's a daily routine...then I finally get some kind of help, or so I think, only to be told that, in so many words, I'm not doing enough for her has jarred me to the core. I hope to get a more detailed explanation and make the adjustments necessary. Like so many others, I am worn out and at the end of my rope...and I still have to stand by and watch my mother die inch by inch. Today she's uncooperative, won't eat/drink, and constantly repeats herself. Over the weekend, she was talkative, asking what else she could have to eat, talking all nite, and chatting with invisible people while awake. What will she be later today or tomorrow? Whatever it is, I'll be here to try and deal with it the best that I can, just as each of you would do. This is the most difficult thing I've ever had to do and I hope I never have to do it again.
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sulynn49 Give yourself a break and a hug. I don't think people meant to sound critical or judgemental just concerned. It's hard to get a complete picture from questions sometimes. Everyone needs space or they'd crack up. If you know that you are doing your best and your Mum is safe then ask what the person meant, what other help can they offer or point you in the direction off. I hope you find the help & support you need to continue to do an awesome job.
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Thanks for all the input but I feel the need to clarify a few things...Mom does have PD and the dementia that goes with it, but she's in no way 'alone' or is her situation 'sad' because she has ME to attend to her every need. No one else has ever mentioned 'neglect'...in fact, her primary doctor has reminded her often to be thankful that she has a daughter taking such good care of her. It was the Hospice nurse that brought the subject up apparently to protect herself. My mother is in a clean, pleasant home and is where she wants to be. I'm sorry...I can't be at the edge of her bed every single minute of the day and she doesn't really need that since she sleeps allot and prefers to stay in bed. Hospice will not provide 24/7 care and the volunteers are scarce in this county. I'm going to try and get 'help' for the time I take to go shopping once a week, if someone is available and also clarification on this issue. I'm doing the best that I can...which I thought wasn't half bad until this comment was made. I can not 'move in' with her nor bring her into my home...she is very difficult to deal with and I absolutely have to have a space of my own to continue to do this. I hope to find an answer to this.
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JeanneG, always tactful and diplomatic too! Did you hear that Americans of every political party are looking for a few good candidates, for president.
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About costs ... Medicare pays for Hospice care. They do not cover rent. So if someone moves into a Hospice House the "rent" part of the cost must be paid by the patient. The Hospice organization we used said they had "scholarship" funds available and, depending how donations were at any given time, could often absorb all or part of the rent costs. (As it turned out, we did not use the hospice house -- I was just exploring the "what if" situations.)

In your profile I see that Mom is 93 and has Parkinson's. Does she also have the dementia symptoms that often go along with Parkinson's?

I am so sorry, sulynn49, that you find yourself in this situation! Hugs to you.
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Hospice provides 24/7 care in their own Hospice House, if they have one. Otherwise, no, they do not promise or provide 24/7 care. If they provide it in a nursing home or other care facility, they expect the regular staff to continue their duties. If they provide it in a private home, there must be family or paid careres there.

Is your mother actually on hospice, sulynn49, or were you perhaps having a conversation to decide about bringing them in?

It sounds like you have been doing an awesome job in caring for your mother. You've made arrangements so that she can stay in her own familiar home and yet have supervision. Clever and responsible!

You don't say what your mother's impairments are. If you are talking to Hospice I take it that she is near the end of her life. Circumstances change. Impairments get worse. People with terminal illnesses often do reach a point where they should not be left alone. Could your mother be at that point now? Perhaps what was adequate and optimal in the past is not sufficient at this time.

What should you do? Did the hospice person make any suggestions, like admitting her to a nursing home, or to their own facility? If you really want to keep her at home until the end, could you "move in" for a few months? Take turns with other relatives?

Aside from the issue of negligence, leaving a person at the end of her life all alone seems very sad to me. I'm sure you are there a lot. I'm sure you are doing the best you can. It is just sad to think of a dying person being alone in a house for periods of the day.
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I looked into Hospice in NC this year and it was my understanding that you have to have someone else with the patient most of the time. At least that was my understanding of their policy.

Here is link that might help. It does list the cost for Hospice around the clock. I'm not sure what it means though.

https://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNProducts/downloads/hospice_pay_sys_fs.pdf
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Hospice generally does not do 24/7 caregiving. Typically it is either at home with family and paid assistance , or hospital or nursing home with hospice supervising care. This is Mi anyway. Maybe some places are different.
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Sulyn, Hospice should be the ones camping out.
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Hospice is not god, they really are not in charge of life or death, (even though they may have that delusion), and someone was out of line. If your loved one needs 24 hour supervision, hospice should be providing that. In my never to be humble opinion.
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Maggie, that was exactly my same thought.

How in the world is someone on hospice and living alone? wow....sad

She must be conscious if she's being monitored and her carer/daughter can hear everything she's doing.
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I don't believe it, frankly. Healthcare workers are, I believe, mandated reporters. If she didn't report you to Adult Protective Services? It ain't so.

I must say I find it peculiar that you would leave mom alone in her house when she is on hospice. If she is conscious, I can't imagine ANYTHING more lonely...
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Same thoughts as VegasLady and Windy. If hospice is involved, aren't they responsible for providing the care, so why is someone inferring you're to blame?

What are the terms of their involvement? 24/7 monitoring?
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This sounds a little odd. Exactly who made this comment? An aid, nurse? It seems like if any nurse, or professional hospice employee felt you mom was being neglected or in potential danger they would have been more adamant with you or taken some action with APS.

I would call the hospice administrator and get this clarified immediately. This is a serious statement to be confronted with. But I have to ask, is there any thing at moms house that would have alarmed the hospice people?
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Get a different hospice company. Why aren't they providing the needrd care?
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