Homes or facilities for Wilson' patients

I am in need of finding a nursing facility or group home for my son. He is 23 and his neurological problems are so bad that he cannot come home. He needs 24 hr nursing care. If anyone knows of a good home or facility that may have other young people, that would be so appreciated. I am at a total loss. Please help!

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I am having the same problem placing my 42yo son. Every place I've looked into are mostly seniors with senior activities. Altho he has a lot of neurological problems, he is still able to do a few things on his own. I'm looking at a rehab place he was in for physical therapy last year, that place had different age groups. You may want to check into a rehab hospital or skilled nursing center. Good luck!

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My son is also 23 and he is at a Sava Senior care Facility. It is a nursing home with long term rehab also. Most of the patients are older and the activities are geared for them, but this is where he really needs to be to get the care he needs and also the daily PT/OT and speech therapies. The whole staff just loves him to death since he is a bright ray of sunshine! he is about the same age as some of the staff and they spend a lot of time in his room playing and talking to him! he is pretty much spoiled rotten. all of the older patients love him too.

It isn't the ideal situation, but it is workable for now. Hopefully he can come home in about 6-9 months with at home nursing care while I work!

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I am really sorry, but I would never leave my child and especially "the bright ray of sunshine"in some nursing care. Unless he needs 24 hours medical care and I am able to see him every day. Why it's so easy for people to get rid of their sick parents or children and place them under some stranger's supervision? I just know some perfectly functioning seniors placed in retirement homes, taking them away from friends and everything so familiar.
Once more, everyone have different situation, so I mostly curious why people here have this trend?

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Lubatab, your post infuriated me! I did not dump my son into a nursing home! It was not a decision that I made lightly either. He needs intense physical and occupational therapy along with speech and swallow therapy on a daily basis and there aren't any options for that if I bring him home. He has done 2 stints in an acute rehab hospital and even with begging them to keep him, they discharged him! Plus we live way out in the country and if he were at home,
He would have little or no social interaction during the day.

I look forward to the day when he has exhausted his treatment or shows maximum improvent and he CAN come home because I would rather care for him myself. We bring his home almost every weekend and it is quite tiring as he is totally dependent on someone for care. He has to be fed, washed, dressed and change his diaper. He has to be put to bed and gotten up and even getting him in and out of the car for transport is tiring and time comsuming. We fly him all over the country for the best specialists and I pick him up and take him to a multitude of specialist appts, and eye doctor, dentist and haircuts. I live 20 minutes from him and the facility is on my way to work. I see him 2-3 times
a week not including the weekends! We have a vacation home at the beach and take him down there with us. We take him to most family functions and most recently went roller skating and I pushed him while skating on the rink.

Right now I sit in a waiting room for his second doctor
appointment for today to get Botox in his back. It was a 2 hour trip by car! If this post sounds like I am defensive, I am! I feel that I take excellent care of my son and am extremely knowledgable about Wilson's disease and the secondary medical issues and am extremely involved in his care. This was a decision that I did not make lightly and it takes a lot of effort for me and my entire family
to make it work as well as it does in his best interest! Thank you for your time to read this!

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@nchokiemom: You didn't read well my post. I said, " unless he needs 24 hours medical care". And it seems your son exactly in that condition. It's sad, but this is the best you can do. And I will say, you a great mother for trying whatever you can to improve his health, for keeping him so connected to your family life and events you have. My sister takes care of our brother who doesn't walk anymore and I know how extremely difficult it is. Especially with no much help around. Sorry, if it offended you, but I was talking about people with less troubling symptoms or who just placing their relatives in nursing care and forgetting about their existence. My friend had a practice in one of the nursing home and she was devastated by the condition of people in her care. Many were depressed, because were forgotten by their families. The care itself wasn't very good. And it was kind of on expensive side nursing home. You seeing you son, you doing everything what you can and I have only respect for you and people like you. I wish you and your son only the best. He will definitely get better. Medicine is advancing also. So there is always hope.

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ir sounds like your child is not having the needs as a lot of our children are having. You have to keep in mind that we love our children and putting them away in a nursing home and forgetting about them is NOT what we want. Only grown children put their parents in nursing homes and forget about them. my son was in a rehab center last year and I was there every day to help with his meals. he received intense physical therapy and occupational therapy. He had friends and planned activities. He was interacting with other poeple and was happy. He was out of state for 6 months and returned needing a lot of help. I have taken care of him attending for all his needs. I am 63 years ald and petite. I have him taking him to all his appointment pushing him in a wheelchair and he is not light weight(289) he is depressed a lot of the time because I can't take him out unless there is a electric chair available at stores,I have even pushed him around at stores just to get him out. I feel that I am doing him an injustice by not seeking assistance for the help he needs from a skilled nursing center. I hope that there will be improved therapy for WD and that your child will not have these needs.

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@mygillis: I feel bad. I was totally wrong to compare the mother's love and spoiled kids leaving the parents in nursing homes. Yes, often parents also need constant supervision and medical treatment. But as I know, very often they are fine in their own with just little bit help.
I am sorry for hurting the feelings of such courageous and loving mothers who taking care of their children in need. Please forgive me. and please remember, things get better. With my deepest respect, "lubatab"

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thank you for reading my post and for replying. I appreciate your apology to all the loving parents trying to take care of their children.

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What a timely topic for us. We are trying desperately to get our 21 year old son, Woody, into inpatient rehab since his last hospital stay. We have one place that will take him and are appealing insurance decision right now based on a PT that said he was had "poor rehab potential" because he was cognitively impaired and couldn't respond. It is SO frustrating - he is NOT cognitively impaired and he DOES respond but admittedly slowly because of Wilson's. He totally knows what is going on but has so much dystonia, can't talk, swallow, etc he appears to not know what is going on - but he does. SO frustrating dealing w/ bad information and so many medical people not knowing or caring to educate themselves about Wilson's.

In any case - if this falls through, (we are on our 3rd appeal right now) we are looking at having to choose between either home health (which isn't aggressive enough from what I've read) or a long term subacute place - simply to get Woody the PT he needs. I have no idea what to do. It really is all about the therapy to get him better at this point.


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From France:

Our son, 26 years old, has been bed-ridden invalid for 5 years now ; speechless, fed by a GEP.

He 's at home and my wife looks after him from 7 am to 11pm, every day.

He has been in a "facility" for some weeks but he almost died because of a bad nursering.

He was a good guy, in an engineer school , with "friends " who vanished when that fucking WD broke out.

C'est la vie.

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