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I moved mama to an assisted living facility (ALF) after she fractured her hip in January 2019. She recovered from the hip surgery but did not resume walking in spite of several courses of physical and occupational therapy. Since COVID-19, she seems even less interested in regaining any independence. She used to assist with transferring herself and walk around her room with a walker. Now, I’m told she’s not helping.
The community changed management in July and now has less caregivers than before. I’m told they’re leaving her in bed all day because she is “unable to stand” and they don’t have the staff to help. This is going to lead to bedsores and other complications. Other than severe osteoarthritis of shoulders and right knee, there are no other illnesses or disease. I’m so frustrated that she won’t help herself. We pay $6200 monthly plus $1000 for a private caregiver 2 days a week. I fret to think of moving her to a skilled nursing facility because they are not nice and often reek of urine. How can I stop being angry? Do I move her, wait until she gets worse or the ALF kicks her out?

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Angry? Who are you angry at? It sounds as though your Mom has given up now and would prefer to have palliative and hospice care. Have you been able to speak to her about this choice, or is Covid-19 preventing that as well as so much more. Yes, her level of care is now above assisted living. This has been coming. There is no reason to be angry at her. It is likely her wish to be done with all this now. As you are not her age, and have not gone through all she has gone through that may be difficult for you to empathize with, but please try to accept her own wishes for her own end of life. There is no upside to struggling daily to wrench ones self out of bed into a wheel chair for another day of all this, if that isn't what she wants, other than to "keep down the costs". It sounds she is beyond caring about that.
Try to speak with her, then perhaps with hospice or Palliative Care MD about next steps for placement. You are so correct that this will make her more prone to sores, to pneumonia and malnutrition, and that any one of those things can bring her the peace of death more quickly. I am so sorry. It is just one loss after another for our elders, no matter how hard they may fight. Mobility, dignity, in the end our very memories and minds leave us. This is so difficult for you to witness.
I think Assisted Living is warning you now, and soon enough they will contact you with suggestions. If Hospice is one of them, please consider that if you believe your Mom is done fighting for this daily life. I would let it play out. I think you already know where it is headed. So very sorry.
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DILKimba Jan 19, 2021
Alva that is a very compassionate and thoughtful response.
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I would be proactive in finding a nursing home that DOESN'T reek of urine and offers their residents some quality of life right up until the end, if you wait until the last moment you WILL have to take whatever is available. And BTW, a family member who has worked in both types of facilities has mentioned more than once about people who have remained far too long in AL because they are afraid of the idea of nursing homes when the reality is their loved ones are not receiving appropriate care there.
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Keepurheadup Jan 15, 2021
Thank you. I’m a healthcare professional and I know that to be true. My professional insight appears to be complicating sound decision-making about mom...
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Your mother's mental or physical health may have declined to the point where she is no longer a "candidate" for assisted living. (She could even have some dementia or had a small stroke during/after the hip fracture.)

AL is not a nursing home. AL was intended for seniors who can be independent in their own room, do their own toileting, remember to take their own meds, etc.

I recommend that you start looking for a new place now.
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I understand your concern. In San Antonio, we are fortunate to have group homes, sort of a combination of AL, and MC. I didn't know about them when I had to move my 92 yo stepmom into AL at a cost of $5000 per month (2018). It is closer to $7000 now.

The group homes are licensed and inspected by the state, and are usually limited to 6 or 8 residents at a time. The 2 that have been recommended to me have PT, OT and ST come on a regular basis; recreational activities, and will take residents to dr appointments, besides the necessary care .The cost is about half, and it NEVER increases. Both of my friends had placed their parents (one placed her mom, and the other placed his dad) and the said the care was excellent.
My husband has dementia, and when the time comes I am praying either one of these facilities will have room for him

Maybe you can find something like that in your area.
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Ask the facility. You really need to have a care plan meeting and make it known that you want her up and dressed every day and you expect her to be cared for and if they can't do it, then they need to tell you so you can get her into a facility that is able to meet her needs. Right now, this facility is guilty of neglect and I would be protecting my mom.

I have seen people that are paralyzed from the neck down in assisted living facilities and she was paying 7k monthly.

She was put in her wheelchair and dressed every morning, she was moved to her bed when she requested it. She was helped to the dining room and fed. Amongst many other things daily.

That your mom is being left in bed tells me that she is not getting the care she needs and that is a problem.

Please advocate for her. She will die a miserable, painful death if she is just left in bed all the time. This facility should be reported for elder abuse and neglect, in my opinion.
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What does the private caregiver do for her? Generally in AL facilities one must be mobile. The one my mother had to leave for skilled nursing did allow residents in wheelchairs on the first floor. I do believe they could manage ambulating with the wheelchair.

My mother suffered a septic infection to her whole body. I was basically told at the hospital the end was imminent. She was released to skilled nursing. The facility is very clean and does not reek of unpleasant odors. I do have to advocate with other issues but the staff is receptive when I do.

You could have a frank discussion with your mother indicating that she will have to be moved if she has no interest in attempting to try to help herself more. My mother would love to stand or walk. They are starting PT soon 3 times a week. Medicare is covering this as long as she makes attempts to try and has some improvement. I have emphatically told her that if she does not she will not receive therapy she has requested.

I have previously visited nursing homes for others where the odors are unpleasant. Are you indicating that the one that is like that is the one affiliated with her present AL facility? You should be able to visit others although I realize with Covid that is more difficult.

I was paying just about what you are paying for your mother's AL. Although there is much they are required to do lifting a resident is generally not included for AL facilities. I hope you find a solution. It is very painful for me to know that my mother may never walk again.
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Keepurheadup Jan 15, 2021
Thank you. It is painful to see or acknowledge that she has given up.
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So, a similar situation happened with my dad after he had hip surgery and went into Assisted Living with my mother. He wasn't able to walk anymore, and it turned out there was a brain tumor at play and a CT scan revealed it. Don't be angry...........find a SOLUTION to the situation! Mine was this: I took dad to the ER and they gave him an MRI, said his tumor had grown, and he was at end of life and needed hospice. THAT is when the ALF agreed to KEEP him; once a resident is on hospice care, THEN the AL normally agrees to keep him until he passes, since hospice takes over his care (pretty much).

That's what you need to look into now: Getting your mom a hospice evaluation after you first find out if her ALF will keep her, as is, once she's accepted by hospice. That's how you prevent her from going to Skilled Nursing at this stage of the game, and how I prevented it for my dad, and avoided splitting my parents up before dad passed.

Also, you say there is no other disease present; are you 100% sure of that? When was the last time she was seen by a doctor & given all the tests? Severe arthritis is a very painful situation, too, I know..........I have it. There are days I don't want to get out of bed myself & I'm 63. There appears to be more at play with your mother than simple 'laziness' and maybe depression is involved if there's no other disease going on. Covid has been a bad thing in so many ways b/c it's prevented us from going inside to see our loved ones, and from getting them proper medical care in some instances.

GOOD LUCK. I know how hard all of this truly is. Sometimes fear comes out as anger, I know. Sending you a big hug and a prayer for peace
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Keepurheadup Jan 15, 2021
Mother’s assisted living community participates with a very good geriatric domiciliary program for medical care. The geriatric nurse practitioner visits monthly even during COVID-19. She was taken to the ED in September for back pain and spasms and had a battery of labs, CT scan and X-rays. She has been taking medication for depression for over a year. I’m told she has sad days, but mostly seems content to be left alone.
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Oh boy, I can feel your pain on this one and understand your frustration. When my mom was first hospitalized about 2 years ago for something very minor, she did a complete 180 in about one week. She acted like she then couldn't do one blessed thing for herself. It was a long road and she thought I was mean but I told her point blank she either started doing what was in her abilities to do or face being bedridden for the rest of her days.
She got back to being independent again but now fast forward to today and she is wheelchair bound and living with me. This is even after regular PT. This is due to her not wanting to move around and she doesn't want to get the knee surgery that her ortho doctor said she needed. I get her to do what she is able to do otherwise or she would have me waiting on her hand and foot and even less mobile than she is. In her case it's more than her giving up- she enjoys having me wait on her. :)
She also has osteoarthritis but her doc said that's the worst thing she could have done was stop being active- it's like the Tin Man when he rusts up. The PT gave her plenty of chair exercises to include standing up out of the chair so many times, etc.
I don't think there's an easy answer, but I would suggest look into where you could place her and have it readily set up if needed. I think I would do that anyway since it sounds like you're just paying for food and a roof over her head and not much else. $7200 is a whole lot of money to pay just for the staff to leave her in bed all day. Do they bring her food? I take it your mom's current place also doesn't offer different levels of care? That might be best to find a place where your mom could go and stay for the duration- moving through different care levels as needed. Not sure where you live, but the amount of money you're paying now is very close to the cost of a skilled nursing facility (the one my mom was in for short term rehab was about $9,120 per month). There are some decent ones out there somewhere.
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jacobsonbob Jan 19, 2021
My mother was in a long-term nursing care facility that cost only $6200 per month, but the chances are that if the AL is charging that much per month, it is unlikely that nursing care will be at a similar price in the same area. From what I have seen so far, my impression is that nursing care will probably be roughly double that of AL in a given locality (unless one or the other is especially "fancy"). At least in the US, in some parts of the country the cost of nursing home care can be over three times that found in other areas.
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Doesn't sound like Assisted Living is the appropriate placement. Expecting them to provide skilled nursing care is unreasonable. As much as you hate moving her, she is not getting the level of care she needs. Move her before her health is affected
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"...Unfortunately, it takes all of her income and a good portion of my funds to sustain mom’s long term care, incontinence supplies, haircare, and maintenance of her house in MS..."

Sell the house in MS. She is never going back there, right? You may not be able to recoup the funds you have paid toward her upkeep but it should give her additional funds to pay for herself for a while and until she qualifies for Medicaid.

If you do not already have durable power of attorney both medical and financial for your mother, it's time to get it. Make an appointment with an elder law attorney and get her important paperwork (living will, will, DPOA) in order. Attorneys are used to being able to determine whether or not their client is capable of signing the papers.

It's time to look at a new place for your mother to live. The risk of COVID in a new place seems less than the risk of her getting bedsores. Both can kill her. When you research new places, ask about the COVID vaccine.
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