Where can person with parkinson's live?
February 20, 2018 8:53 AM Subscribe
My mom has Parkinson’s and after a broken hip 2 years ago moved to assisted living facility where she has her own apartment (living room, bedroom, bathroom, mini fridge and microwave). Meals are provided restaurant style 3 times a day. She has levels of care so she can get help with bathroom, dressing, etc but she needs to request help (which she doesn't do).
After hip surgery her dementia got drastically worse. She has a walker, but she doesn’t understand or accept her limitations so she falls multiple times a week from using the walker improperly or not even using it. We temporarily have an aide living with her 24/7 in the assisted living facility but we can't afford to do that for long. I think that she needs more supervision than assisted living can provide. The head of nursing there agrees with me but says that a memory care is not appropriate (her dementia is such that she is alert / aware so she wouldn't be happy there, plus she would still not be supervised so she would still fall constantly). Nursing care is also not appropriate as she is not bedridden.
Other complications: she has a pendant around her neck to call for help after a fall, to ask for help getting to the bathroom, etc but she 100% refuses to use it.
There doesn't seem to be a facility that can handle this and she is paying out of pocket for assisted living and the aide. Is there something I can be looking for that would be a supervised environment to live in? Somewhere between Flemington NJ and Hoboken NJ is what I'm looking for, but knowing what to ask for would be helpful also if you aren't in that specific area.
After hip surgery her dementia got drastically worse. She has a walker, but she doesn’t understand or accept her limitations so she falls multiple times a week from using the walker improperly or not even using it. We temporarily have an aide living with her 24/7 in the assisted living facility but we can't afford to do that for long. I think that she needs more supervision than assisted living can provide. The head of nursing there agrees with me but says that a memory care is not appropriate (her dementia is such that she is alert / aware so she wouldn't be happy there, plus she would still not be supervised so she would still fall constantly). Nursing care is also not appropriate as she is not bedridden.
Other complications: she has a pendant around her neck to call for help after a fall, to ask for help getting to the bathroom, etc but she 100% refuses to use it.
There doesn't seem to be a facility that can handle this and she is paying out of pocket for assisted living and the aide. Is there something I can be looking for that would be a supervised environment to live in? Somewhere between Flemington NJ and Hoboken NJ is what I'm looking for, but knowing what to ask for would be helpful also if you aren't in that specific area.
Best answer: I would recommend consulting a geriatric case manager, or talking to elder care services at the county level. They may have help.
Also talk to her GP and/or neurologist to make sure her diagnoses are fully documented. Among other reasons, a lot of the costs of care can be deducted from her income, if there is a diagnosis of an illness interfering with activities of daily life.
When my father was in a similar circumstance, having a bed alarm helped a little bit with falls at night.
posted by suelac at 9:28 AM on February 20, 2018 [1 favorite]
Also talk to her GP and/or neurologist to make sure her diagnoses are fully documented. Among other reasons, a lot of the costs of care can be deducted from her income, if there is a diagnosis of an illness interfering with activities of daily life.
When my father was in a similar circumstance, having a bed alarm helped a little bit with falls at night.
posted by suelac at 9:28 AM on February 20, 2018 [1 favorite]
She sounds like a perfect candidate for an Alzheimers memory care facility. Preferably one with a reasonable attandant-to-resident ratio in that department.
posted by Thorzdad at 9:41 AM on February 20, 2018
posted by Thorzdad at 9:41 AM on February 20, 2018
Response by poster: Have you talked to the nursing staff or her doctor about a PT/OT evaluation and treatment? If she reduced her falls would she be appropriate for assisted living?
She is getting OT and PT but she doesn’t show improvement. I don’t see how she could be appropriate for assisted living again.
posted by ridogi at 9:43 AM on February 20, 2018
She is getting OT and PT but she doesn’t show improvement. I don’t see how she could be appropriate for assisted living again.
posted by ridogi at 9:43 AM on February 20, 2018
Response by poster: She sounds like a perfect candidate for an Alzheimers memory care facility. Preferably one with a reasonable attandant-to-resident ratio in that department.
I don’t think so. I’ve spoken to some and she has more cognition than the other residents (she is only 69) so she would be unhappy and none of them are supervised that closely. If she is in a chair and someone isn’t there she will just stand up and fall over.
posted by ridogi at 9:50 AM on February 20, 2018
I don’t think so. I’ve spoken to some and she has more cognition than the other residents (she is only 69) so she would be unhappy and none of them are supervised that closely. If she is in a chair and someone isn’t there she will just stand up and fall over.
posted by ridogi at 9:50 AM on February 20, 2018
Response by poster: I would recommend consulting a geriatric case manager, or talking to elder care services at the county level. They may have help.
I will try this route.
posted by ridogi at 9:52 AM on February 20, 2018
I will try this route.
posted by ridogi at 9:52 AM on February 20, 2018
Best answer: In California we have what are known as board and care facilities. They are converted private homes with six residents and one or two awake staff on duty at all times. They provided meals and personal care. It won't have as much personal space (just a bedroom plus shared living spaces) or fancy amenities but a much higher level of personal care than you get in assisted living.
Having staff available helps but, nothing will keep from falling if she doesn't have enough sense to not stand up without her walker. You might need to work with helping her understand that if she doesn't want to be in a wheelchair she needs to ask for help. My MIL is the type who doesn't want to upset people so knowing her son would be very upset made a little more likely that she wouldn't do something stupid (but didn't eliminate the problem).
posted by metahawk at 10:24 AM on February 20, 2018 [1 favorite]
Having staff available helps but, nothing will keep from falling if she doesn't have enough sense to not stand up without her walker. You might need to work with helping her understand that if she doesn't want to be in a wheelchair she needs to ask for help. My MIL is the type who doesn't want to upset people so knowing her son would be very upset made a little more likely that she wouldn't do something stupid (but didn't eliminate the problem).
posted by metahawk at 10:24 AM on February 20, 2018 [1 favorite]
Best answer: So, i do reports for our public health department all the time, and if someone in a nursing home requires an attendant, they have to provide it if they don't, and they fall that's abuse. And the nursing home can be fined.
Maybe she doesn't need a memory care facility, but a generalized nursing home could be a good step until she needs to transfer again.
posted by AlexiaSky at 10:26 AM on February 20, 2018 [1 favorite]
Maybe she doesn't need a memory care facility, but a generalized nursing home could be a good step until she needs to transfer again.
posted by AlexiaSky at 10:26 AM on February 20, 2018 [1 favorite]
My grandmother would try to stand up when she shouldn't; she had a wheelchair because her balance was so bad, but she always wanted to stand up and walk around. We eventually set her up with an alarm like the emergency stop on a treadmill. The thing was attached to her waist and the other part was attached to the chair. If she tried to stand up, the thing would come uncoupled and an alarm would sound so someone could come remind her that she needed to stay seated or use her walker. We used this when she lived with us at home and I believe the nursing home staff continued to use it when she moved to a care facility.
posted by gideonfrog at 10:47 AM on February 20, 2018 [2 favorites]
posted by gideonfrog at 10:47 AM on February 20, 2018 [2 favorites]
We just went through a similar issue and memory care was the right thing. When she's at her best, she knows she is in memory care and that's pretty sad for her, but she also knows that when she isn't at her best she needs it. I don't know what changed where the facility went from "she's not a good candidate" to "this is right for her"
posted by advicepig at 10:55 AM on February 20, 2018 [1 favorite]
posted by advicepig at 10:55 AM on February 20, 2018 [1 favorite]
Best answer: Seconding Metahawk. What you might look at are what are called Adult Family Care homes in NJ. They are smaller group homes/residential care facilities where your mom can get more personalized care. Here's more information. These are small mom-and-pop places, and many will not have websites. You might look for a reputable senior care referral agency to help you find a home near you. Some homes may even specialize in memory-care.
posted by hydra77 at 11:12 AM on February 20, 2018
posted by hydra77 at 11:12 AM on February 20, 2018
You might also find this book - A Bittersweet Season - useful for more information on the kinds of options available and the pitfalls that the author experienced in caring for her own mother. Some good info here. It sounds to me like your mother needs to be in a nursing home with memory care though. Good luck!
posted by leslies at 1:51 PM on February 20, 2018
posted by leslies at 1:51 PM on February 20, 2018
Thirding Metahawk. I went through an incredibly similar situation (prideful and young mother, got kicked out of assisted living for failing to request help.) Afterwards, she moved into a board and care facility/adult family care home and spent the last 18 months or so of her life in relative peace there. The full-time staff also gave her someone to interact with and stimulate her mentally.
Concerning the dementia you mention, please MeMail me--I have some very specific insights that I got only after my mother passed, unfortunately, but could definitely help you in understanding what's going on. (Spoilers: it's not dementia as we traditionally understand it.)
posted by Hot Like Your 12V Wire at 1:53 PM on February 20, 2018
Concerning the dementia you mention, please MeMail me--I have some very specific insights that I got only after my mother passed, unfortunately, but could definitely help you in understanding what's going on. (Spoilers: it's not dementia as we traditionally understand it.)
posted by Hot Like Your 12V Wire at 1:53 PM on February 20, 2018
Response by poster: With a small group home / adult family care home how would doctor visits be handled? In assisted living the doctor and dentist come there, as well as PT / OT person, all arranged by the assisted living facilit. What about things like haircuts?
posted by ridogi at 3:29 PM on February 20, 2018
posted by ridogi at 3:29 PM on February 20, 2018
Best answer: Have you made contact with the National Parkinson's Foundation, American Parkinson's Disease Association or other similar agency? It looks like there are referral services available in New Jersey.
IANYgeriatric case manager, but a GCM or a long term care referral agency would be a great resource to help you find somewhere, too, if the ADPA can't help.
I agree with Hot Like Your 12V Wire, folks with Parkinson's have different needs than someone with Alzheimer's or other types of dementia and some facilities are better equipped to deal with that than others. A different, smaller assisted living or a board and care/adult family care home may be a better fit.
You didn't mention Lewy Body dementia, but if she has been diagnosed with LBD in addition to Parkinson's (or even if you just suspect it might be the case), you might look around at the Lewy Body Dementia Association site.
posted by assenav at 3:34 PM on February 20, 2018
IANYgeriatric case manager, but a GCM or a long term care referral agency would be a great resource to help you find somewhere, too, if the ADPA can't help.
I agree with Hot Like Your 12V Wire, folks with Parkinson's have different needs than someone with Alzheimer's or other types of dementia and some facilities are better equipped to deal with that than others. A different, smaller assisted living or a board and care/adult family care home may be a better fit.
You didn't mention Lewy Body dementia, but if she has been diagnosed with LBD in addition to Parkinson's (or even if you just suspect it might be the case), you might look around at the Lewy Body Dementia Association site.
posted by assenav at 3:34 PM on February 20, 2018
Best answer: With a small group home / adult family care home how would doctor visits be handled? In assisted living the doctor and dentist come there, as well as PT / OT person, all arranged by the assisted living facilit. What about things like haircuts?
In my state, board and care homes and large assisted livings are the exact same type of facility on paper, and have the same license--they are just smaller. Whoever would come visit her in the ALF would visit her in a board and care. Where you might find a difference is that the smaller places may not necessarily have a list of doctors/dentists/hair stylists who are already coming to the facility; you would be more likely to have to find your own person (maybe whoever already sees her where she is now).
posted by assenav at 3:36 PM on February 20, 2018
In my state, board and care homes and large assisted livings are the exact same type of facility on paper, and have the same license--they are just smaller. Whoever would come visit her in the ALF would visit her in a board and care. Where you might find a difference is that the smaller places may not necessarily have a list of doctors/dentists/hair stylists who are already coming to the facility; you would be more likely to have to find your own person (maybe whoever already sees her where she is now).
posted by assenav at 3:36 PM on February 20, 2018
Response by poster: So, i do reports for our public health department all the time, and if someone in a nursing home requires an attendant, they have to provide it if they don't, and they fall that's abuse. And the nursing home can be fined.
Maybe she doesn't need a memory care facility, but a generalized nursing home could be a good step until she needs to transfer again.
Are there names for nursing facilities where residents are able to move about on their own, but require supervision?
How would I prove she needs / apply for having an attendant?
posted by ridogi at 3:47 PM on February 20, 2018
Maybe she doesn't need a memory care facility, but a generalized nursing home could be a good step until she needs to transfer again.
Are there names for nursing facilities where residents are able to move about on their own, but require supervision?
How would I prove she needs / apply for having an attendant?
posted by ridogi at 3:47 PM on February 20, 2018
Best answer: The social worker in my mother's community which has different levels of care from fully independent to hospital like, was a terrific resource for when we needed to make adjustments to her care. She is in assisted living similar to what you describe now, but her husband who recently passed had parkinson's and some cognitive issues associated with it. The MSW helped them tremendously in working with them to find the appropriate level of care.
posted by AugustWest at 5:14 PM on February 20, 2018 [1 favorite]
posted by AugustWest at 5:14 PM on February 20, 2018 [1 favorite]
Best answer: So, I work in IL and in an ER so generally I am doing reporting of facilities after injuries to IL department of public health which is the reporting and investigating body of nursing homes and assisted living facilities in the state of IL.
No nursing home will be able to prevent every fall. Accidents happen . But there should be consistant policies in place to prevent risk as much as possible. When nursing homes and assisted livings don't follow those procedures that's neglect and can impact quality of life.
I have no idea what would be good in your area. Nor do I know your mother. Some generall suggestions/questions when looking at nursing home placements regardless of type:
Do they prescribe fall alarms, and indicate individuals with fall risks rather visably? (Fall precaution signs on patient doors, weight sensors, an color indicator on a wheelchair, ect). If not how do staff know who is a fall risk on a day to day basis?
What is the staff ratio?
How often are they required to check on a patient who is a fall risk with some mobility capability?
How do they ensure staff meet that expectation?
Do they do assisted walking (staff walking with patient, I may not be using the right words here)?
How do they make sure to meet the needs of this type of patient(a memory impairment, fall risk who likes to try and walk)?
When looking at nursing homes, pay attention to the staff and how they treat their most vulnerable, do they look groomed? Are they in a communal area during the day with good visability and present staff? How does the place smell? If you wait around you might get lucky on the tour and see someone trip a fall alarm , you should watch how they respond to the incident if that happens.
I'm surprised the assisted living hasn't mandated a higher level of care of her based on my experiences. If she presented to my ER after multiple falls I would likely make a report. If she doesn't have fall alarms, they are relatively inexpenive additions you should be able to have prescribed, or buy on your own to alert current staff there is a problem.
posted by AlexiaSky at 8:17 PM on February 20, 2018
No nursing home will be able to prevent every fall. Accidents happen . But there should be consistant policies in place to prevent risk as much as possible. When nursing homes and assisted livings don't follow those procedures that's neglect and can impact quality of life.
I have no idea what would be good in your area. Nor do I know your mother. Some generall suggestions/questions when looking at nursing home placements regardless of type:
Do they prescribe fall alarms, and indicate individuals with fall risks rather visably? (Fall precaution signs on patient doors, weight sensors, an color indicator on a wheelchair, ect). If not how do staff know who is a fall risk on a day to day basis?
What is the staff ratio?
How often are they required to check on a patient who is a fall risk with some mobility capability?
How do they ensure staff meet that expectation?
Do they do assisted walking (staff walking with patient, I may not be using the right words here)?
How do they make sure to meet the needs of this type of patient(a memory impairment, fall risk who likes to try and walk)?
When looking at nursing homes, pay attention to the staff and how they treat their most vulnerable, do they look groomed? Are they in a communal area during the day with good visability and present staff? How does the place smell? If you wait around you might get lucky on the tour and see someone trip a fall alarm , you should watch how they respond to the incident if that happens.
I'm surprised the assisted living hasn't mandated a higher level of care of her based on my experiences. If she presented to my ER after multiple falls I would likely make a report. If she doesn't have fall alarms, they are relatively inexpenive additions you should be able to have prescribed, or buy on your own to alert current staff there is a problem.
posted by AlexiaSky at 8:17 PM on February 20, 2018
It might be worth finding out WHY she doesn't use her walker.
Does it hurt her hands/wrists? If so, there are alternatives that are kinder to hands/wrists, and it might be worth getting an Occupational Therapy consult about this.
One alternative to look into: smart crutches.
posted by Murderbot at 9:12 PM on February 20, 2018
Does it hurt her hands/wrists? If so, there are alternatives that are kinder to hands/wrists, and it might be worth getting an Occupational Therapy consult about this.
One alternative to look into: smart crutches.
posted by Murderbot at 9:12 PM on February 20, 2018
This thread is closed to new comments.
posted by pintapicasso at 9:03 AM on February 20, 2018