Unsure of facility

CKCMaggio

What do you do when you're not sure of the facility your loved one is in? It gets decent online reviews, but she is entering late stage dementia and is constantly being sent off to the hospital? For various reasons. Touched another resident, non-med compliant, tripped....every other day it's something. She has moments of clarity and realizes where she is or where she is being sent to, and cries. I think it's been just as devastating for me as for her, but I don't know. I've had a terrible day today just thinking about this, and don't have much support. She was my main person. Ther facility has raised the cost of her care also, from about $8,700 when she first entered a few months ago to about $26,000. Per month. This isn't the most luxurious place, but it is somewhat home-y. My main thing is the constant sending-off to hospitals, which of course incurs a lot of bills. And her not being happy. How do people handle this?

Thank you for any responses.

Marta

Get her signed up for Hospice ( you can call Hospice yourself) and the hospital runs will stop.

BookBuffBex

Is she in a specialized memory care unit in the facility? It sounds like this facility is not equipped to handle her needs. That cost increase is ridiculous, that's a 300% increase!!!! For that price, they should be providing one on one care 24/7! You might want to consult with a geriatric care manager or social worker to figure out if this is the best facility for your LO. I know a move seems traumatic, but so is being sent to the hospital all the time.

CKCMaggio

How do you get a person signed up for hospice? Or find a geriatric care manager/social worker? This is all new to me. She is not in a specialized MCU, just a home that said they deal with that (and I've seen other residents who appear worse off, memory-wise). They had been providing one-on-one care for a bit, which did greatly increase the bill, but when that stopped they increased her "Care Level" so they're basically getting the equivalent. I agree greatly that being sent to the hospital all the time is not good for her mental state. When I saw her there, she was begging me to bring her back home and give her another try here. It's just not reasonable, I couldn't sleep with her here. She'd get up and do strange things, forget that our cat was our cat....it wasn't safe. She constantly wanted to go drive somewhere, but she had forgotten how to drive, basically. Wrong side of the road. But she was desolate at the thought of being returned to the facility, and pretty much begged me to bring her back home....heartbreaking.

CKCMaggio

And thank you Marta and Bookbuff for responding!

CKCMaggio

On top of that (sorry) they say it's best I don't see her or take her out anywhere for a while, so she gets "broken in" to the nursing home. My words, but that's basically it. She used to say she'd rather be shot than have to live in a nursing home. So this is hard hard hard.

michiganpat

My brother was constantly being sent to the ER, frequently more than once a week. They said it was policy, every time he fell, whether he was injured or not. It stopped when he was signed up with hospice.

JeriLynn66

You can ask the Facility to consult Hospice or you can call Agencies yourself. Your loved one will be evaluated by a Hospice nurse to see if she meets criteria to qualify for the program.

I’m sorry this is so hard….

MN Chickadee

$26,000 per month?? I guess I'd be looking for a new facility. That's an enormous increase. I know rates can vary by geographical area but that seems really high. Even a skilled nursing facility which is more acute care is usually less than that in most areas. Not only does the price tag seem high but it sounds like you are not particularly satisfied with the staff and care.

My mother was in a memory care facility until she passed last year (was just under $10,000 per month.) She too was being sent to the ER a lot for falls and other things. I was able to tamp this down a bit by calling a care conference with the staff and expressing my desire to have this happen less. I really liked and trusted the staff and we were on the same page of working together, doing our best with communication etc. which I think you should be able to expect at $26k per month. A well trained staff will have tricks up their sleeves to get someone to take their meds, will try again later, or will ask for you to do a psych consult if it's really bad with a geriatric psychiatrist or look for alternative forms of medicine like liquids. An ER is no place for a PWD who won't take their meds. This makes me question their training and ability to care for people with dementia. Sometimes our facility was able to call me first and ask if I would like mom sent to the ER after an injury and would explain the circumstances and leave it up to me, other times I didn't have a choice. Getting your LO on hospice would end the ambulance being called, the hospice nurse would be called instead. The point of hospice is to keep people out of expensive and invasive medical treatment and focus on comfort instead. You yourself can get her evaluated for hospice. Most areas have at least a few different agencies. You just call them and ask and they send a nurse out to evaluate her. You can try a couple different agencies. Even if she doesn't qualify today they will usually track her and check in often until she does. Your county's agency or council on aging may be able to provide a list of hospice companies or just turn to google or the phone book.

leilani

I'll probably get more outside care when my LO isn't able to ambulate or swallow. She will always be with me in my home. I'm a widow and have family who help me, so I can care a great deal more for LO at home. hugs

mommyandme (m&m)

$26,000/mo? That’s not ok!

Marta

Ditto. No way that $26,000 per month is justifiable. Choose another facility.

I run an adult family home in Washington State, a relatively high cost of living state. Charges for the highest level of care are < $10,000 per month.

Elshack

I agree with the other posters. $ 26,000.00 a month is ridiculous. Call Hospice and they will come and see if she qualifies and then all trips to the ER cease.

CKCMaggio

I can't believe it, another hospital send off today! Although this time she had some cut and swelling on her hand so they thought it was infected. The home says they don't know how it happened, that nobody witnessed it. I'm not necessarily doubting that, but I just can't keep up with all the ambulance bills!

harshedbuzz

I am gobsmacked by that price. A SNF with a higher level of care delivered by RNs, PTs and OTs would be around half that in most of the country. To get to that price point, a PWD would need a 1:1 sitter.

I wonder if you have been targeted by scammers of some sort yourself. I would contact your Area Agency on Aging and ask about this pricing.

HB

Joyce Cooper

every facility which receives any government funding is licensed. Each state has a board of licensing auditors. Ask for the results of the facility's last audit. They are public records. Reading them, you may find out where the issues, if any, were and what corrections they had to make. This gives you a basis for deciding a good facility versus others that are consistently cited for not following regulations. Health and safety are of primary concern.

CKCMaggio

I did contact a hospice agency that's supposed to contact the home and see if Alicia (my friend) qualifies for hospice. She can walk (although has had falls), but has at times had problems with swallowing. She has choked on food before, even when I've brought her out to eat. It's like she's forgetting to chew? I don't know what exactly is going on there. She had to receive a chest pump once at the facility (I'm unclear on who performed it exactly, doesn't seem like they could've waited for the ambulance to show up) to revive her. I feel like she probably would've preferred not be revived, honestly. She has a DNR on file with them now, they claim they didn't have it even though it was submitted when she was admitted. Although I don't like the idea of just letting her suffocate...I'm not sure if there are only particular cases in which the DNR would apply?

Also, an additional problem for me. When Alicia is more aware of her circumstances, she begs for me to take her home. I've seriously considered it, but also realize I wouldn't be able to sleep at night not knowing what she might get up and do. However, it's been a big source of guilt for me. I have a sister that claims she tried in-home care and that it's not reliable, and in the end costs much more. Any others have experience w/ almost 24/7 in-home care?

SEM_BOS

My LO also has begged me to take her home. I considered hiring in-home care, then realized that my LO needs socialization, and just having a care-giver and me there would not be enough activity. I would never be able to get any work done, and I would also be 'on the hook' any time the care-giver called in sick, or had a flat tire. I opted for MC despite all the challenges that come with that.

Also, it's pretty common that PWD don't really know what "home" is. I assumed my LO meant her most recent home, but when I probed, she indicated the houses and towns she lived in growing up or as a young mother, and not the home she lived in prior to diagnosis. I've read other posts on this board where someone who is in their home demands to "go home".

>>>>>she begs for me to take her home. I've seriously considered it, but also realize I wouldn't be able to sleep at night not knowing what she might get up and do. However, it's been a big source of guilt for me. I have a sister that claims she tried in-home care and that it's not reliable, and in the end costs much more. Any others have experience w/ almost 24/7 in-home care?

Iris L.

I suggest no more restaurants. Get a swallowing survey. She sounds late stage. Prepare yourself. Iris

CKCMaggio

How do you get a swallowing survey?

Also, I was wondering if anyone knows of any online chat rooms for ALZ. Live ones, not just leaving messages like here, although this has been helpful to me. Sometimes I just want to have an actual chat, but don't feel up to joining a group in person.

I see where you're coming from SEM_BOS, since before Alicia went into the home I was the only caregiver and that caused me enough stress. Now she is even worse. One day when I visited her at the home she thought she was at an old job and overseeing everything. Thought there were all sorts of things she had to do. I thought maybe that isn't so bad, as opposed to when she knows where she is and is sad about it.

And you're right about her concept of home...she does often think of prior homes and not the current one.

It's the moments of awareness she has that bother me, in some sense. I'm glad she's still there to that extent, but it causes her so much distress to realize her current position. She cries, she begs.

Joyce, I'm unsure how you contact a Board of licensing auditors? I assume that's different from an ombudsman? I feel like the facility is already wary of me for questioning so many things. Some staff have become unfriendly. I've sent emails they don't even respond to. I prefer to email about certain things so I can have a hard copy of their responses and not just a "he said/she said" note.

Anyway...am supposed to tour a different facility today. Unfortunately it's further away, in a town I've never been to. I'm sure they'll put on a good front initially as this one did. In one sense I'd like to have her moved, but am afraid of the next facility being even worse. Then what?

OnlyDaughter123

That is a really difficult situation. I am sorry. Trust your instincts. If something doesn't feel right to you, it probably isn't. Maybe look into some alternative assisted living options. Is this a facility that focuses on memory care? It sounds like they aren't understanding your loved one's needs very well.

CKCMaggio

It is a memory care facility. They just come across that she's problem after problem (how the others aren't I don't know). Maybe she is still enough there to realize her situation and be objecting to it in some ways. They want to get her back into a GPU now, but were disappointed the GPU wouldn't take her without there being an e.r. visit first, so I'm expecting they'll come up with a reason to send her there again soon. Right now they do not want me to visit or call for 2-3 weeks, as they say she "rages" after I visit and leave. She currently has a 1:1 sitter, very expensive. Say her body is not processing proteins. They're currently trying to stabilize her on Risperidol (sp?) Yet they don't believe she is ready for hospice.

mommyandme (m&m)

An OT, Occupational Therapist, may assess the swallowing issues and there are Fluoroscopic imaging studies that can also be done if your LO can tolerate something like that. I imagine if you would like a hospice evaluation done, you could have it done without the facility ordering it. Not sure why they would discourage an evaluation by hospice since if admitted, they will provide an extra layer of support for them too. A CNA would come in and bathe her every week if nothing else. Maybe they only have hospice come in when death is imminent which would be unfortunate. We had hospice for almost two years and they were so helpful. I trust they’re not trying to cover up anything.

I really hope you find a better solution soon.

CKCMaggio

Hello all, I appreciate all responses, thank you. I thought I had asked this before, but don't see it....are there any live chat rooms for this topic that anybody knows of? Sometimes you just want immediate chat, you know?

Regarding hospice, I did find a VNA service to go in a few times a week. Why the facility didn't suggest or arrange it, I don't know. The VNA service I got thought that the facility had their own that they worked with, but I never heard more back on that, and this one is going.

Iris L.

Chat room were discontinued with the new format change.

Iris

CKCMaggio

That's disappointing. Sometimes you need to talk to someone live.

Sunshine2024

You can call the Alz Association 24/7. They have people who can answer questions.