My mom is in late stage Parkinson's, has been at her current ALF (state of GA) for 2 years and because of recent falls they are asking her to leave. She is also on Hospice care at the ALF. They say she can't stay because of state regulations and requirements that the ALF has to abide by. My concern is that given her fragile state and general anxiety this move may be the end of her. She has moved 2 times before (once in same facility from independent to assisted and once to this new facility) and each time takes her down a notch. She is comfortable where she is and loves her aides. The nursing homes I have visited say they can't keep her from falling either and basically can't give her any more care than what she has now so I don't see how this is beneficial for my mom. We cannot afford a smaller personal care home or private sitters. What are my rights or options here? Thank you.
A Nursing home is not going to stop the falls either, the only thing I can say is that at least they have more staff typically to help lay eyes on her and help her meet her needs. Most of the time when they are falling it is due to a need they feel they have, such as going to the bathroom, so they do what they have always done and try to do it themselves and end up falling.
As for hospice...I have 2 on hospice in my community, it provides extra care and more eyes on my residents, I always love this option as it means they are allowed to age in place.
You didn't mention in fall precautions were in place such as floor mats next to the bed, no side rails, clear path to restroom, if you haven't maybe you can buy more time by offering to do so.
I wish I could give you more hope. God bless and good luck!
I believe you need to see a lawyer that is well versed in Elder Law.
You need to do your homework as well. It's crucial. The facility may tell you they can't keep her - so check with Georgia's State Department of Health to find out what the State Rules & Regulations are so you'll know what they are. Some facilities will do anything to get rid of someone whose "more trouble than they're worth".
If you don't want the responsibility of being your mother's advocate then someone else needs to take on that responsibility.
I don't know what sort of financial resources your mother has; but, it appears as if they are going to be exhausted in short order .
What a pickle!
Do you have siblings? If so, do they help out or will they be her advocate?
Go see a lawyer.
The move from memory care to care home was a good one, overall, for mom. The caregiver/resident ratio was lower and yes, a better fit for mom's needs. The cost? Care home, small privately owned, was a couple thousand lower a month than memory care, a larger nation-wide company. Don't be afraid of the change, it could actually work out better for mom.
My mom passed after being in the care home for five months. She had been at memory care for about a year and a half. It was sad that we did not know about care home availability in mom's area. It may have been a better choice from the beginning.
And yes, falls did still happen. There is no way to stop them.
You are correct in that the folks DO take a step down every time they're moved. But in the end, what choices do you have? If the ALF says they can't keep her, then you have to move her, one way or another. If they DO have a MC unit, however, that may be your best bet.
Best of luck, I know how hard this whole mess really IS!
I live in Missouri. In Missouri there are two levels of Assisted Living Facilities (ALF), there are ALF I and ALF II. In an ALF I a resident has to be able to make a "pathway to safety" (if there's an emergency such as a fire they must be able to get out if the ALF with minimal assistance within 5 minutes or less). In a ALF II the resident does not have to be able to make the "pathway to safety" and can "age in place" including having hospice services. I don't know if your state has the different levels of ALF's but it is worth checking.
As far as falls goes that can be a deal breaker for many ALF's. You said the skilled home told you that they can't keep her from falling either, true but they are staffed at a higher level than the ALF's so there would be more oversight for your loved one which may mean less falls.
You could contact an Elder Law Attorney for represent you in the appeal process. You may want to contact your local Long-term Care Ombudsman Office, they can file the appeal for you at no cost but you may still want a attorney to represent you at the hearing. The Ombudsman will also know if the discharge notice is legal, in my experience most discharge notices I saw did not meet the legal requirements which I was able to use to by my clients more time to decide what they wanted to do.
I wish you the best, let us know what happens.
Is she falling when she is alone? If you can't afford a sitter, you could try calling every friend, relative and fellow church member you can think of and asking each to come and visit on the days when you can't.
Ask the Hospice service for advice on where to move her.
Does mom need more care or would she be fine with the same amount she is currently getting? What is her prognosis? Hospice doesn't mean imminent death anymore, so what besides Parkinson's is she battling? I ask because you want to make sure she doesn't have to move again.
Have you actually gone and talked to board and care homes to understand pricing and services provided? In AZ they are typically a fraction of the cost. They don't offer activities or trips to Walmart typically, but they do accommodate many levels of care.
Hugs, this is a difficult situation made even more difficult by the AL coming to the end of their care abilities.
Try nailing the ALF down on what the incompatibilities are. What are your mother's needs and risks that conflict with their regulatory obligations, exactly? And can anything be done to reconcile them, short of moving her? They must have done a formal risk assessment - ask to have a look at it, tackle it point by point.
It sounds as though they've already proposed one-to-one care as a solution, but not an affordable one. Is there any wiggle room on that? If not, what else could be done that hasn't already been done to address the falls risk? - what happened, what might have prevented it, what would need to be done differently.
It's actually not good PR for the ALF to be kicking out a long-term resident because she's become "too difficult" - it's not going to win them Brownie points with anyone. So if I were you I would pursue negotiation first. At the very least you'll feel you've tried.
Usually what happens the most is a resident has some reason they are sent out to the hospital and are gone for a bit, we then go in person and assess the resident to see if we can still meet their needs. If I feel we cannot do this I speak with the social worker at the hospital and they will find placement and help the family members with the process. I do what I can from my end to help. I have a lady in similar situation, we have added mats on the floor next to the bed, we try to keep her in activities or with a staff member at the main desk or at least keep her in our line of sight.
I know its a lot to deal with but be honest with yourself and decide if you feel she has needs not being met in an AL community and would the care she receives be better where there is more help available.
I wish you the best of luck!
God bless
Talk to both the social worker where she currently is as well as the Social Worker from Hospice they both should be able to help you find a place for your mom.
The nursing homes are quite correct in stating that they can not totally prevent falls. We used to be able to use walkers (almost like the ones you can buy for kids just learning to walk) for our dementia patients who were going to move regardless of what you put on them. Watched a resident manage to tip it right over. She was giggling as we all dashed to set her right side up. Has your MD or the PT come up with the cause of the latest spate of falls? Is it just the progression of the Parkinson's? Is she able to successfully use a walker or a rollator? Not sure if that would help- just a thought. Maybe a classy wheelchair - preferably with a classy seatbelt (they always try to get up and out of those while forgetting to set the brakes).
Best of luck to you in this difficult situation.
When we decided she needed to move to a safe place, it was not to the ones she checked out because they were not close to where I could keep tabs and visit easily. Anyway, one of those in this area also is a CCRC (has that "up-front" cost.) Seeing as one still has to pay monthly (and sometimes a hefty fee at that!), what is that "up-front" money used for? From what I was able to determine, it isn't used to offset the monthly fee, so why the big $? Where does it go?
(NOTE: one of the places we checked said they were her "home for life", meaning she would stay to the end, but they were not a CCRC that I know of and did not have that up-front fee. Their assessment fee and monthly fee was higher than the place we (me) chose and it was for a double room/shared bath, so it likely was even more for a private room (mom would NOT like sharing!) The place chosen is also a very short drive for me (the one who manages everything and sees her the most!) The other would have been 40-60 minutes each way! Her current place is also, despite yearly increases, STILL less than that other place after 3 years! They do accommodate some issues in the MC unit (some need bathing, help getting up/down/wheeled/dressed/fed, etc.) and up to 1 hour of "personal" care is covered - thankfully mom, so far, hasn't exceeded that one hour! If/when she does, another hourly fee is added on (would suck if she exceeded her included hour by 5 minutes!!!!)
You don’t mention how old she is and this will sound cruel but maybe it is better she goes. My aunt and uncle both had late stage Parkinson’s and lived at the same nursing home. They were like babies physically. They couldn’t do anything but lay there. They couldn’t speak or feed themselves. I think it was worse them being in that shape. Your mother must not be as bad as them because there was no way they could have gotten out of bed or even sit up on their own. It is a sad time of life but hopefully she had a good life. Just spend as much time with her as you can.
Personally, I believe the pneumonia was a “blessing” as mom did not have to go through the final stages of the Parkinson’s. My mom was ready to go to heaven and had always told me that when it was her time to go, please don’t prolong it by using feeding tubes or life support (I was her POA and I honored her wishes). We hired hospice as soon as she was diagnosed with pneumonia and they made her as comfortable as possible. My dad, most of my siblings and some of their spouses, my children who lived close by, my husband, and I all visited her in her final days. The nurses planned to call me when they thought her last moments were nearing, but she went quickly during the night and I believe she didn’t want us to be present at that moment. She’s home now and she’s no longer suffering from the effects of Parkinson’s disease!
I would start searching now for Skilled Nursing for her. To battle her current facility would most likely prove fruitless. It will be time-consuming and probably won’t have a good result for you. If she’s anxious, maybe speak with her doctor about a low-dose anti-anxiety Med for her. This is a lousy situation for all of you.
It is true, state regulations prohibit ALFs from keeping residents beyond board and care. This is a state regulation (supported by national regulations) which is protective against intentional or unintentional neglect. ALFs do not have the level of skilled professionals nor the staff ratios to care for those who truly meet skilled nursing care acuity levels. This is why it is called a continuum of care.
To avoid transfer trauma, involve your mom in the decision as much as possible.
Good luck.
Donna