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Visited my 91 year old mom to celebrate her birthday. Instead, my sister & I gathered up 2 extra large garbage bags of molded food, trash, and expired items to take to the dumpster. Bathroom was horrendous with mold in shower, soiled jeans & blouses folded up next to toilet, sink stained, mirrors dirty, and no toilet paper. Gowns & dusters we're left out everywhere leaving it hard to know what was clean or not. Food in frig was molded, lots of opened & ruined products setting out in the room, and sink full of cups & bowls.
On top of this, it was 88 degrees and suffocating in her room with no lights on or blinds opened. Btw, she's on oxygen, but she refuses to wear it most of the time....making hallucinations & her personality worse. She has auditory hallucinations so because she's hearing things from her tv area, she's rolled tv cart to hallway (they have stored it to get it away from fire exit), piled all photos that were on cart face down on couch (because they were singing to her), and set her unplugged tv on floor. It was a horrible mess! I've visited every 2-3 weeks even tho I'm the enemy & have cleaned up off & in the last 6 months, but she says I need to sit down so she can talk (rather argue, complain, or accuse). This time my sister managed to get her to open her gifts, and I reheated her Cracker Barrell birthday dinner so we could leave after 3 hours of picking up & throwing out.
I need advice on how to handle this situation. They've told me before that she refuses help. She even refuses meals so they wrap them for later (& I have to scrap plates of food left in frig). They don't want to agitate her any more than she already is. She won't go out to eat in dining area, so they cannot sneak to clean it. She refuses to go with us anywhere, so she's in her chair complaining & telling people NO. I do not want to upset the new administrator, but I cannot let my dementiated mom live in a filthy and toxic environment. How can I get this situation to improve? I have already asked for the visiting administrator & Hospice Aide to call me. Hopefully, tomorrow!! Thanks in advance for all advice.

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What I see here is people too lazy to bring things to someones attn. I agree that the Hospice aide in there to maybe bathe her but she could have brought up to the Nurse what the apt looked like. That the woman was not caring for herself. Isn't there a Hospice Nurse? Somebody should have called you. Mom seems to need more care than she is signed up for. My Mom had cleaning, laundry and meals were included in her rent. Her bathing, dressing and pill maintenance were things she paid xtra for.
I understand by law that they can't make her do what she doesn't want to. I am sure that someone from Moms AL would have informed me that something was wrong.
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Reply to JoAnn29
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She's WAY beyond assisted living. Get her into a full-care memory care facility ASAP.
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Reply to MJ1929
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Just from the picture you paint for us I think your Mom needs more than ALF where staff really will not meddle with you if you refuse care and treatment, bathing and cleaning. I know my brother did not want (nor need) a lot of care, visits, checking, and wished to do his own dusting due to his remaining collections he treasured. Once the person needs more direction, wanted or not, cleaning wanted or not, and bathing wanted or not we are looking at memory care. Sadly, because so much more expensive. I don't know how much can be expected of a hospice aide in your particular case; in general is it not a whole lot if the person refuses care.
I do question that the facility is not coming to YOU sooner as this all sounds unsanitary at best, and I know the ALF where my brother was would not have allowed this sort of deterioration without family care plan meeting and discussion of needs. So sorry you are going through this, and glad there will be a meeting.
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Reply to AlvaDeer
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I know that the hospice nurses and aides are supposed to report to their supervisors any harmful or dangerous environments their patients may be living in. I'm guessing that's not being done. And what kind of facility would allow your mom to continue to live in her filth, as that is a health risk to everyone in the facility, with a chance of cockroaches and who knows what other kinds of bugs, along with the chance of your mom getting food poisoning from eating rotten food? It's disgusting, and the facility should not allow it. I'm surprised they haven't kicked your mom out yet.
You may have to talk to moms Dr. about putting her on some kind of medication to keep her from being so agitated, so someone can get in her to clean her room on a regular basis. I wish you the best in this sad situation.
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Reply to funkygrandma59
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Marylin Jul 6, 2021
Mom has about 5 months of money remaining as she has been in ALF for 5 years. Medicaid with the Choices program application is my July project. We were hoping to keep her at this facility until the end. It was a struggle to get her there, prepare room, and meet her needs & demands. She's always been head strong & difficult. It's been a challenge for the facility but they say she's not ready for the nursing home and Hospice thinks she's ok there with their visits 2-3 times a week. I think she needs medication but they say she has to agree & she won't. She still has rights & she knows it and she knows her pills so there's no trickery! Her Dr is the Hospice Dr, so nurses are all we see & communicate with.
The facility says they try & not upset her, especially because of her hallucinations. Hospice says it could be her meds, but nothing has changed in 2 years but 5 days if Bactrum for a possible UTI. I have begged everyone to find something to ease my mom's misery before she leaves, but no one says they can without her permission. Does this change if you're in a nursing home?
Thanks so much!
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If your mother has not been declared incompetent, she can live any way she pleases.

The ALF can evict her, however.

I would work with the ALF admins of gettting her assessed by a geriatric psychiatrist for meds; getting her a professional "needs assessment" (sounds like memory care would be more appropriate).

Perhaps getting her admitted to a psych unit or "senior behavioral health" facility might be an option.

What does her doctor say?
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Reply to BarbBrooklyn
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Marylin Jul 6, 2021
Is Memory Care for Medicaid patients? Her money is almost gone & we're applying soon.

I think the ALF is avoiding her because she says she's cleaning her room herself & in the past she has. But, now, she isn't able. With her mean spirit, they avoid her. Hospice nurse has made their job easier & they admit it. He only sees her twice a week, changes her bad conversations to good ones, takes her bp & oxygen levels and leaves. I've asked for a hospice aide for months & now one has been assigned. I hope she can help. I see why everyone is saying NH or MC is needed. I'm going to give the new administrator & hospice aid a chance on correcting this situation first. Changes are necessary but oh so difficult!
Thank you!
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