Follow
Share

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.

Find Care & Housing
Assisted Living facilities cannot provide the same level of care that a Skilled Nursing Facility can. However, they’re correct when they say they cannot prevent falls. There can be a room full of aides, nurses and therapists and somehow, some way, a Senior will still find a way to fall. My mom did. But, she would take off without her walker, too Does your mom do this? Can you explain to her that she shouldn’t?

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.
Helpful Answer (9)
Reply to Ahmijoy
Report

It's so hard. I also had to move my Dad from his beloved AL when his falls were too frequent. But instead of a NH, I found him a residential board and care facility that could provide much closer supervision. They allowed chair and bed alarms which the AL would not allow. He is doing much better there, and the cost was very similar to what he was paying at the AL with all the services, at the B&C everything is just included in the price. So shop around, and because the B&C is privately owned and not a big chain like the AL, I was able to negotiate the price. The downside is that the B&C, the residents don't have the mental capacity to interact as my dads needs some socialization, so I take him back to the AL to visit his old friends frequently. Good luck!
Helpful Answer (8)
Reply to SofiaAmirpoor
Report
Angeleyes1 Jul 9, 2019
What does B&C stand for? I'm guessing it's a smaller private care home of some kind, more like a nursing home than an AL?
(0)
Report
See 1 more reply
You may add a 24-hour caregiver which may satisfy the ALF.

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
Helpful Answer (7)
Reply to captainocaptain
Report

I honestly don’t think you have any rights if it is an assisted living home because those are for people that just need some assistance in getting by like giving them meds, etc. Unfortunately it does sound like your mother belongs in a nursing home. If she is on hospice that means she doesn’t have long to live. My brother was on hospice for a very short time but he stayed at home because his wife was there 24/7 and he had nurses or nurses aids in every day for the short time he lived. He was diagnosed on a Monday and died the next Wednesday. He was 66.
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.
Helpful Answer (6)
Reply to Suetillman
Report
busymom Jul 9, 2019
My mom had Parkinson's disease, too. She ended up with aspirated pneumonia in her final days. She had lived for nearly 2 years in Assisted Living, but when her falls (with a walker) began to occur, we moved her to nursing care where they could use alarms on her bed or chair. She did eventually use a wheel chair in the last month or so of her life. She could walk some, but felt more secure in the chair and her nurses were so sweet to help her go from her room to the dining area or to visit my dad who was 2 doors down.

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!
(8)
Report
She may require the level of care that a SNF (Skilled Nursing Facility) would offer, I am surprised that they are refusing her.
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.
Helpful Answer (6)
Reply to Grandma1954
Report
disgustedtoo Jul 9, 2019
I don't think the SNF refused, just said they also could not prevent all falls. I would think falls are going to happen no matter where someone lives (AL/MC/NH or your/their home), until they are unable to get out of bed (or even roll out.)
(4)
Report
I'm in NJ but an certified as an assisted living administrator. Here we have definite rules about the services we can provide to our residents. We can not provide NH level of care. My issue is that I don't think this is brought to the attention of resident and families during the initial tours and admission process. The famous (or perhaps I should say infamous) line of " see, your mother can age here" should have an addendum that says as long as she doesn't require a lot of help with ADL's, isn't bedridden for more than 14 days, blah, blah, blah. Some families might then opt (and be able to afford) for a CCRC (Continuum Care Retirement Community) which has all levels of care from complete independence to skilled nursing and rehabilitation on the same campus. A resident might have to change buildings but they could see their friends for lunch and dinner. Of course, CCRCs generally require an up front entry fee (often in excess of 150K) and have a more expensive monthly charge for this reason. They also tend to have slightly more staff (for faster daytime service at least) and most have chefs or chefs in training - ergo--- the is as good as an AL.
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.
Helpful Answer (5)
Reply to geddyupgo
Report
disgustedtoo Jul 9, 2019
Perhaps you can answer a question I have had for a long time... My mother used to check out the ALs local to where she lived (I think it was 25% free meal, 25% nosy and perhaps as much as 50% part of her plan, of course the 50% vanished when she developed dementia!) Many, if not all, were apparently these CCRCs.

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!!!!)
(0)
Report
See 1 more reply
There is a major difference between Assisted Living and Skilled Nursing. Staffing is one difference. It’s unfair for those in AL to have one resident who requires more care. This takes away from time spent caring for other AL residents. Yes, a person could fall anywhere but there is more staffing and oversight in a SNF. When a higher level of care is required, a move to a SNF is necessary, otherwise AL’s would have too many residents needing more care than can be provided for them. This would defeat the purpose of “assisted” living.
Helpful Answer (5)
Reply to Susanonlyone
Report

Call the Social Worker at the Hospice and get their help with this situation. The ALF is correct, the regulations in GA leave them very little room to legally keep your mother. A SNF is most likely, legally, where your mom will have to be, as you cannot afford private sitters. The SNF is being honest about what they can and cannot do regarding falls - but until the regulations change the ALF's hands are tied. Are you certain a smaller PCH is out of the question cost wise? Usually they are willing to be a bit more flexible in their interpretation of the guidelines. Also depending on the situation and how near the end your mom is sometimes you can "slow down" the discharge until it is a moot point. I.e. the ALF will work with you to legally meet the requirements of giving you a discharge notice, letting you appeal, giving it to you again, so that at very end-stages your mom doesn't have to move (like expectation of less than 14 days). If family is willing to stay in the room with mom to keep her safe during that time. Trust me, the aides and ALF do not want to have your Mom leave, I am sure they love her too, but legally they can only do so much before they will get in trouble with the State of GA.
Helpful Answer (5)
Reply to plum9195
Report

After a bout with pneumonia & a stay in rehab, the ALF mom lived at for 4+ years would not take her back due to advancing dementia & too many falls with broken bones they were unaware of. She fell under the radar........was able to get herself back UP after a few falls and didn't call for help, so nobody knew. After a CT scan in the hospital, it turned out she had 3 broken ribs & several broken bones in her sternum in various stages of healing, all from falls we knew nothing about. Mother is devious. Anyway, the ALF agreed to take her into their Memory Care (MC) Unit across the parking lot, which is $2K a month more but staffed more like a nursing home in that the ratio of caregivers to residents is MUCH better than the ALF. Mom fell again today at MC, but that's ok........they expect it. She has bed and chair alarms so when she tries to transfer alone, the alarm goes off and help comes in right away. Is this type of scenario an option for you? I do know that ALFs are indeed bound by certain rules that we agreed to when we signed up.........the main goal is to keep our folks safe and when they can't do that, the folks need to move on. The other thing I wanted to mention is you can hire an advisor who looks around at different ALFs FOR you, to determine which ones will take higher risk patients. Morningstar here in Colorado is one of the ALFs that takes such patients, such as 2-person transfer residents. The rates, unfortunately, are similar to SNFs; the man I spoke with pays $8500 a month for his dad at the SNF at the gold-level of care.

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!
Helpful Answer (5)
Reply to lealonnie1
Report

Have you checked into the cost of care homes? My mom was kicked out of memory care, she needed more care than they could provide. She was on hospice at the time and they recommended a care home that they worked with regularly. None of us want to have to deal with moving a loved one as it many times causes further decline.

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.
Helpful Answer (5)
Reply to gladimhere
Report
Bdette144 Jul 17, 2019
What is a "care home"? is it regulated? Are the characteristics clearly defined? I have never heard of one.
(0)
Report
See 1 more reply
See All Answers

Ask a Question

Subscribe to
Our Newsletter