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Anyone have experience with this?

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Thank you all for your time and responses. FYI I am a 5 minute away walk from the board and care where my mother resides. I am completely aware of what hospice is supposed to provide and while they are not supposed to cure what my mother is dying from they are supposed to care for her with dignity and make sure that she is taken care of not let an infection go untreated just because my Mom is on end of life care-- there is no compassion and care going on if a person has an untreated UTI which by the way can be deadly if left un treated-- this would be just mean and ... BTW I do not listen wo what my mother tells me about her care. But because I live so close I get to witness it and experience first hand that what I was sold on by this hospice care provider is NOT being done well, efficiently or with compassion for the family. Thank you all for your support.
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Is your Mom in a facility, a Hospice Hospital, and away from you and other family members ? It sounds like you may be relying on information you are receiving directly from your Mother, instead of another from a family member who is right there and overseeing her care? If so, your Mom may not be giving you correct information, and also, and I understand that this can be dificult to hear, but your Mom (with Hospice) has qualified for end of life care, meaning that thay aren't going to treat any minor ailment, unless it is truly bothering her, ie: UTI symptoms, which she tells them aren't causing her real discomfort, remember they're focus is caring, not curing . She may very well be telling the care team one thing, and you another, to gain attention and your sympathy.

If they Are honestly providing Sub-par treatment, by all means, find a new Hospice provider, but I would visit directly, and request a round table discussion with her Hospice team, including her Drs, Head Nurse, and her Social Worker, then I would pose to them all of your questions, and decide if you would then choose to go with a different Hospice facility.

I realize that this must be incredibly difficult for you, but her care is of course the most important thing. I wish you well with finding the best fit, in the care of your Mom.
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Who directed you to this Hospice company? I would find another if they are this resistant to providing care.
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How far away are you? How do you know things are not done? Does Mom tell you? Maybe mom is developing dementia. If you are a distance away there needs to be someone close to check in on her. If there is nobody, think about a geriatric care manager.
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Should be "if so," not "r so".
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You can talk to the Director of Nursing and/or Administrator, and if your concerns aren't resolved, begin researching other hospice facilities.

Make a checklist of the issues of importance, including the ones that exist now, so that you can discuss with a representative how they would be handled, before making any commitments to change.

Are there any Jewish Welfare Federation or similar offices in your area? r so, would try to find someone there who could provide information on other facilities of which they might be aware, ones which they would recommend.
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Who is living with your mom as her primary care provider? Are you some distance away?
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i have no experience in this area, but I would Google for other hospuce providersin your area, call them and find out how to switch if they seem to suit your needs. Sorry you need to do this.
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Hi Angel- thank you for reaching out- I am aware of what hospice care is supposed to provide, however, the company that my brother and I were directed to, in my opinion has not lived up to its contract as follows: After requesting numerous times to be contacted each week with updates, that does not happen and my Mom has been on hospice since January; yesterday I requested a test for UTI to be performed as my Mom has been talking crazy nonsense for a week and I got a whole list of reasons why they didn't want to do what I requested; they let a medication that aided in my mother breathing lapse and nothing was done to refill till I had to intervene; I requested info on support groups for myself and got 1 church that I can go to, I am Jewish; they are supposed to provide podiatry care- does not happen unless i call and beg and then I am not sure it is happening; when they do call me it is often times to complain that my mom is agitated and doesn't speak nicely and she is mean- my mother is 95, with several strokes and mild dementia and chronic heart disease- she still is able to function mentally and how she is treated and told to wear diapers is demeaning in my humble opinion- The one thing that hospice did mange to do well was regulate my moms water retention- but they take her at her word, my mom will experience pain and once it is over she forgets that she had it- so telling me that my mom does not complain about it hurting when she urinates 2 hours after she has relieved herself and believing and trusting her word is just ludicrous-
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Would you be willing to give us some examples of the care that you don't approve of? Hospice is a very specific type of care and in general they are extremely good at what they do and compassionate by nature. But by choosing this type of care, you have chosen to have only palliative treatment. I know that some people get upset that their loved one is no longer given certain medications while on hospice, when palliative care is just that...no live saving treatments only comfort management. I also know that some people believe hospice is a 24/7 caregiver when this is also not true. The family gives most of the hands on care, while the hospice doctor and nurses provide certain times of day (and hour or two) increasing as death gets closer. Are they doing something different than what you agreed to in your hospice intake paperwork and contract?

Angel
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