I need help....

[pyrxtc]

As some of you may have read, my mother had an Aneurysm in November that should have killed her but luckily she lives close enough to Boston that the DR's were able to save her life by using the most coils ever to stop the bleed. She was in a semi-come for 6 weeks and then was moved to a ICU ward to be monitored and then to a rehab hospital for acute therapy.

Insurance only pays for 4 weeks of that therapy and then made us move her to a nursing home for rehab. The nursing home S**ks !! they have been threatening to cut off therapy for some time now since they say my mother is not meeting their goals. They refuse to give us a paper of what their goals are so we can have them assessed by one of the 3 neurologists that know her case (One of which found my mother's case so amazing that he is doing a paper on her.) to see if their expectations are even feasible.

My siblings and I are trying to find ways to get this done and hit a wall everywhere. We have the appeals paper but some Dr's are slow getting us what we need to file.

My Dad (who we think is depressed over this and who wouldn't be) is having a hard time with all of this and doesn't want to pay for an attorney after the last one kind of messed him over. He doesn't think it will help. We are trying everything we can figure out but none of it has helped.

Does anyone know anywhere we can turn for help ? My mother needs this therapy, as puny as it is, very badly. She actually needs way more than what they were giving her. If anyone knows anywhere in MA or NH that we can go for help I would be grateful. She is a resident of MA and 60 yrs old.

Thanks for the help.

 

[TinkerbelleAbbysMom]

Is there a social worker or case manager? If not at the rehab center what about at the hospital she originally was in ICU at? Could the doctor who is writing the paper get any info for you? Also, did she have a primary care doctor prior to the incident? Could someone it that office help you all?
Sorry I don't have any great ideas but I wanted to share Hugs and a few thoughts.

 

[pyrxtc]

she has a case manager but she only knows what the Dr at nursing home tells her. (Dr at home does not routinely care for patients with brain injuries) We are waiting for papers from the Dr at ICU but they don't have much since as soon as her infections were treated, she was moved to acute rehab hospital. Offices are slow to get paperwork to us since Dr's are busy and can't stop to write it out. She has a primary and Neuro from before incident and both have seen her and Neuro referred her to a rehab specialist Neuro but no opening until July.

We are trying to avoid going through state health care since since it will mess up everything for my Dad and the house he lives in.

My mother is almost well enough to be able to be home and have care. She is a long way from being able to care for herself as her memory is shot (short term anyways), has no sense of balance, walks barely and cannot do stairs or even get up out of her chair on her own. She will need a lot of work and months to do these on her own.

I am willing to move in with my dad for the summer, so she can move home but he is against that. My aunt is willing to challenge my father so my mother can come live with her. The place she is at is horrible and we have started looking at other facilities to move her to but we have not found a place that offers suitable therapy and has a bed open.

 

[Disney Doll]

As some of you may have read, my mother had an Aneurysm in November that should have killed her but luckily she lives close enough to Boston that the DR's were able to save her life by using the most coils ever to stop the bleed. She was in a semi-come for 6 weeks and then was moved to a ICU ward to be monitored and then to a rehab hospital for acute therapy.

Insurance only pays for 4 weeks of that therapy and then made us move her to a nursing home for rehab. The nursing home S**ks !! they have been threatening to cut off therapy for some time now since they say my mother is not meeting their goals. They refuse to give us a paper of what their goals are so we can have them assessed by one of the 3 neurologists that know her case (One of which found my mother's case so amazing that he is doing a paper on her.) to see if their expectations are even feasible. They cannot refuse to dicuss your mother's goals with her family. If they are refusing to do so, get her primary care doctor involved, get the manager of the floor involved, get the administrator of the nusring home involved and if you get no satisfaction form any of those avenues then call your department of health for the state in which the nursing home is located and report them. Believe me when I tell you, as soon as "The State" gets involved, everybody hops to!

My siblings and I are trying to find ways to get this done and hit a wall everywhere. We have the appeals paper but some Dr's are slow getting us what we need to file.

My Dad (who we think is depressed over this and who wouldn't be) is having a hard time with all of this and doesn't want to pay for an attorney after the last one kind of messed him over. He doesn't think it will help. We are trying everything we can figure out but none of it has helped. I understand your father's reluctance, but ultimately, getting advice from an attorney who is experienced in eldercare will be very helpful.Does anyone know anywhere we can turn for help ? My mother needs this therapy, as puny as it is, very badly. She actually needs way more than what they were giving her. If anyone knows anywhere in MA or NH that we can go for help I would be grateful. She is a resident of MA and 60 yrs old.

Thanks for the help.

If she is able to come home, she might be eligible for home physical therapy through a visiting nurse agency.

 

[pyrxtc]

"They cannot refuse to dicuss your mother's goals with her family. If they are refusing to do so, get her primary care doctor involved, get the manager of the floor involved, get the administrator of the nusring home involved and if you get no satisfaction form any of those avenues then call your department of health for the state in which the nursing home is located and report them. Believe me when I tell you, as soon as "The State" gets involved, everybody hops to!"


They always have an excuse as to why we can't talk to the Dr. and everyone tells us we have to talk to him. He is either not in, at a meeting, or has just left for the day no matter when we call. he is not at nursing home or his office, ever ! None of us have ever met him in all the time she has been at this place.

I guess it's time to get in touch with the department of health. Thanks for the idea, Monday morning look out !! We have a new place to call!!

 

[happygirl]

Is there anyway you can change nursing homes?

 

[pyrxtc]

right now, because of what this DR is saying about progress, her insurance will not pay for anything and the nursing home will start sending the bill to my dad starting tomorrow. Well, it will be sent next month but the entire bill is his now. No therapy means no coverage for any of it.

Until we can get them to reinstate therapy, no other nursing home will take her without a large deposit to pay for her care from my father. He doesn't have that kind of money, none of us do.

All these years paying money into insurance and one Dr is messing it all up !!

 

[happygirl]

right now, because of what this DR is saying about progress, her insurance will not pay for anything and the nursing home will start sending the bill to my dad starting tomorrow. Well, it will be sent next month but the entire bill is his now. No therapy means no coverage for any of it.

Until we can get them to reinstate therapy, no other nursing home will take her without a large deposit to pay for her care from my father. He doesn't have that kind of money, none of us do.

All these years paying money into insurance and one Dr is messing it all up !!

Does she get medicare? I would look into in home care and in home rehab

 

[pyrxtc]

No medicare, she does not qualify until 2 years. We can't even apply until 2 years after her insurance stops.

 

[happygirl]

No medicare, she does not qualify until 2 years. We can't even apply until 2 years after her insurance stops.

Wow, sometimes with major illness they will let you apply for it. What about disability, you might try to apply for that it will help bring in some extra money in case the insurance won't pay for the thepary. Sending up prayers you will find a solution

 

[lsyorke]

Private insurance can pretty much call the shots on what they are going to cover, and I'm actually very surprised they covered nursing home as far as they have. Medicare does cover "skilled care" completely for 21 days and then up to 100 days(with a secondary insurance) as long as progress is being made and the skilled need is still present. Once there is a documented plateau, that skilled need is no longer there and the patient is considered custodial. Therapy would be her skilled need and an MDS(minimum data set) must be submitted to the insurance company documenting her progress. I would ask to see her MDS and to meet with the MDS coordinator at the facility to see what they are sending.

Medicare does not cover custodial care and private insurances only cover if it's a long term care policy.

That said, call the ombudsman for the elderly for your state. At worst you will get accurate information from the nursing home, at best you may be able to get more time for therapy. If she is plateaued in her therapy, there may not be much you can do. There is no excuse for the nursing home to not provide you with information that you request.

Definitely apply for disability for her, but as you've already noted there is a two year wait for Medicare once disability is approved.

 

[pyrxtc]

she has gotten disability approved but no checks as of yet. Her progress has definitely not plateaued in any way. There are things that she is doing on her own that she could not do before and although her brain does not connect to get herself up, she can now get up with a single hand from someone else and the rest under her own power.

I can only get down to see her every weekend and the changes I see are always wonderful. She can walk while only holding a rail to support herself and 2 weeks ago took 5 steps alone before flailing.

Lack of specialized care has stopped her from progressing in a few areas. She is supposed to be asked about the bathroom every two hours but they don't have the staff to do that. also, she is supposed to be walking instead of using her chair as much as possible but then the therapy staff instructs the aides that they are not allowed to get her up to walk. What they do is almost counter-productive to what she needs.

We even had an atrocious moment last weekend where she was left in her bed until we got there at 1:15 pm and my brother got her out of bed and brought her downstairs for a concert. She still had on her nightgown and when I approached the nurse afterwards to ask about it, why she wasn't up or dressed, I was told they didn't know and she went to speak with the aid that was to be working with her that day.

Aid was on lunch but another aid stated that she wasn't sure. Nurse asked aid if anyone had brought my mother her meals since usually she would go down to the dining room for all meals but was not yet out of bed. Turns out, my mother had not only been left in bed all morning, she had not been brought to the bathroom or fed all morning. Yup, you read that right, nothing for her all day.

Now with her injury, any awareness or motivation for anything has been impaired. Her get-up-and-go is on pause. She has to be reminded to press the button for help, we had to put up signs for basic things and hope that she remembers to read them. She can do just about anything if tell her to except remember things. Short term memory is currently shot.

progress is being made but no one has ever met this Dr and we all know that it is imperative to find out his expectations he has for. We need to have her Neuro look at them to see if they are even feasible for her condition.. Insurance will cover the inpatient therapy for as long as the Dr says she is making progress and can handle the therapy. even all of her Neuro's say she needs more therapy each day and she is doing wonderful for what happened to her. Each time they see her (which is often, she had made significant progress.

It has become so much easier to take her out for the day since she can now get in the car almost on her own and can even tell us what the address is that we are going to and directions to get there in some cases. there area lot more things she needs to do but the Dr's that know her, know that she is progressing.

 

[shortbun]

I don't know if this helps but age 60 in many states is the golden ticket to state and county senior assistance programs. In Ohio, a social worker visits and asseses the situation then assigns help-RN once a week, home maker, meals, physical therapy at home...all for a sliding scale. I've been looking into this recently for two relatives here in Ohio. This could take some of the burden off your dad and you allowing you to take over some of the other stuff. Can you train somehow to continue her therapy? What equipment do you need? In Ohio too, there are many programs where agencies will help to adapt a home for a disabled person-design and build ramp, change doors to accomodate wheelchairs and so forth. Work to find help where it's offered and try to do the other yourself. Network for help from physical therapists; you might find a social worker in the county programs who can find someone to help you figure out what you need to do for your mom. Don't give up. Keep looking for anyone, anything to keep her making progress. Your dad is overwhelmed, get him to a counselor. Their insurance should pay something toward that OR the county programs might help there too. Last, find a palliative care organization. Sometimes they are affiliated with hospice but it is not hospice and perhaps they can offer some assistance or guidance. Good luck. We're all pulling for you!!! And-you need to document everything.

 

[low-key]

i anit got no advice but feel your pain

 

[JerseyJanice]

No advice either, but I'll think good thoughts for you, your mom and your family, and keep you all in my prayers.

 

[mom2grace]

she has gotten disability approved but no checks as of yet. Her progress has definitely not plateaued in any way. There are things that she is doing on her own that she could not do before and although her brain does not connect to get herself up, she can now get up with a single hand from someone else and the rest under her own power.

I can only get down to see her every weekend and the changes I see are always wonderful. She can walk while only holding a rail to support herself and 2 weeks ago took 5 steps alone before flailing.

Lack of specialized care has stopped her from progressing in a few areas. She is supposed to be asked about the bathroom every two hours but they don't have the staff to do that. also, she is supposed to be walking instead of using her chair as much as possible but then the therapy staff instructs the aides that they are not allowed to get her up to walk. What they do is almost counter-productive to what she needs.

We even had an atrocious moment last weekend where she was left in her bed until we got there at 1:15 pm and my brother got her out of bed and brought her downstairs for a concert. She still had on her nightgown and when I approached the nurse afterwards to ask about it, why she wasn't up or dressed, I was told they didn't know and she went to speak with the aid that was to be working with her that day.

Aid was on lunch but another aid stated that she wasn't sure. Nurse asked aid if anyone had brought my mother her meals since usually she would go down to the dining room for all meals but was not yet out of bed. Turns out, my mother had not only been left in bed all morning, she had not been brought to the bathroom or fed all morning. Yup, you read that right, nothing for her all day.

Now with her injury, any awareness or motivation for anything has been impaired. Her get-up-and-go is on pause. She has to be reminded to press the button for help, we had to put up signs for basic things and hope that she remembers to read them. She can do just about anything if tell her to except remember things. Short term memory is currently shot.

progress is being made but no one has ever met this Dr and we all know that it is imperative to find out his expectations he has for. We need to have her Neuro look at them to see if they are even feasible for her condition.. Insurance will cover the inpatient therapy for as long as the Dr says she is making progress and can handle the therapy. even all of her Neuro's say she needs more therapy each day and she is doing wonderful for what happened to her. Each time they see her (which is often, she had made significant progress.

It has become so much easier to take her out for the day since she can now get in the car almost on her own and can even tell us what the address is that we are going to and directions to get there in some cases. there area lot more things she needs to do but the Dr's that know her, know that she is progressing.

You need an elder law attorney, STAT!

 

[shortbun]

If you can take the summer off, get her out of there and do the therapy yourself. When my aunt was very sick, we had her in a nursing home but someone was there nearly all day to make sure she got the care she deserved. We brought cakes, pizza, candy, flowers for the staff without expectations but somehow my aunt got good care. Sad but factual. I went to her therapy sessions, taught my mother how to do them as well. Mom got instruction on how to support her sister and made sure she got to all the programs for stimulation, their first cousin went to breakfast everyday and taught her cousin how to feed herself then showed the rest of us. Her son filled in wherever he could and learned it all. When the staff of a nursing home knows there is always someone there, they know they would get caught shirking their responsibillities. You just can not let up. Find friends of your mothers to take shifts-meals-bedtime. We also started taking my aunt out for meals, which kept her motivated because she was really wanting to get her life going again. We'd take her for burgers-drive through, ice cream, long drives, play her favorite music on the radio and I was in charge of the Godiva chocolates, lol! You must find some semblance of life for your mom. Show your dad that he can begin to have a bit of life back as well.

 

[pyrxtc]

My Aunt, her sister, is there pretty much every day. She knew we were going in the afternoon so she didn't plan to be there that day.

We have all learned the therapy she needs but a lot of her healing is needing her brain to heal so she can do the rest on her own. I have taken her out to do stuff, she even got to the point one day to call me Mom very sarcastically since I was always asking her if she needed anything or to go the bathroom or anything. The majority of healing is in her brain, without that healing there is no major forwards that are self done. Without a short term memory, she forgets that she can get up, or walk, or anything. She thinks that because she is in a chair that something is wrong with her legs.

When I last saw her, I told her an everyone that she was not allowed to use the chair anymore. She has a regular chair in her room she can sit in and a walker to use to get to the bathroom and down to the dining room. There is no real reason for the chair to even be in her room. Yes, she gets tired of walking sometimes but there are chairs everywhere she can sit in. She needs to work out the legs more so she doesn't tire so fast.