This post is not about myself but a relative of mine who was diagnosed with ppms eight years ago. He is a 59 year old male, he can not walk and is doubly incontinent. He never married and lived with his elderly parents who are is only support network. He has been living in a care home since his diagnosis because the flat where the family lives was too small for equipment needed for him.
I saw his parents a couple of weeks ago and they are saying he wants to come home, his parents are totally out of their depth with his situation and do not understand what treatment he is having or needs or what support he can have. In fact they have lived a very isolated life and his mum has many social issues of her own, she fears going out and can not answer the telephone, she is reliant on her husband totally and there appears to be alot of mental and emotional abuse going on. He is very controlling towards her and from what she has said he ignores her for long periods of time.
The care home will only let them visit their son for 3 hours a day because they say that they are very loud.
It seems like a very tragic situation, the parents are in their eighties and very frail in all respects. Their sons visits are their only interaction with the outside world.
What i am trying to find out is that if my relative wanted to live at home albeit in a home big enough for all of them would this be possible. I am aware of the independent living model which in theory gives this choice to all adults.
The reality of it is that his parents fear professional input because they dont know how to communicate with them and i think that his mum becomes frustrated and appears to be aggresive.
I don’t know the answer to your questions but I didn’t want to just read and run. It might be worth a chat with the practice nurse at your GP’s surgery - even if your relative is not one of their patients, she will know which services would need to be involved to ensure that he has suitable support in place if he decides to move out of the care home and should be able to point you in the right direction.
Hi Christine… firstly sorry this is going to be a big chunk of text as my return button won’t work on here. I am 61 and I live in sheltered housing… which is usually for people over 55 with a health problem. It seems to me that this might be the solution to your problem. The flats are generally 1-bed but if your friend could live in one flat and his parents in another, they would all have plenty of contact while he retains his independence. Sheltered housing offer support… social activities and emergency pull cords and pendants which can get you immediate help 24/7. Also they do care assessments every 6 months and can refer to OT (occupational therapy who can provide grab bars, level access showers etc). Also your friend needs a care package. We have people here who have carers come in 24 hours. Others who have a carer for couple of hours in morning and evening. Anyway your first step should be to contact social services. You obviously need a social worker involved in all this. Social Services will also know all the sheltered housing in your area and how to get on the waiting lists. Very often there is not much of a wait. Of course people die, go into nursing homes or simply move out… so there are quite often vacancies and sometimes nobody on the waiting list. Call your local social services … number will be on internet… and find out more. Hope you can get this sorted. I feel very sorry for your friend being in a care home at only 59!!! Let us know how things go… and again sorry about the chunk of text. Pat xx
Thanks for your suggestion…the difficulty i have is that im in Lancashire and my relatives are in Yorkshire. I feel i needed to help because they are all very vulnerable and not taken seriously because they lack some social skills.
Sheltered housing does sound like a good idea, it will keep them together as a family and allow for services to be available.
Im hoping to get as much information together and then i am going to try and speak to my relatives with what options are available.
My relative who is the care home is only 3 years older than myself and spends most of his time in bed which has resulted in bed sores. The home provides basic care like food and bathing but there is so much more to life than that. I have found this site very informative and many people with ppms are still able to enjoy a varied and fulfilling life like anyone else, even if changes have had to be made its still possible for many.
He should be in his own home with a care package. I’m surprised that social services haven’t sorted this out. It’s really disgraceful. Good luck and let us know how it goes. Pat xx
Hi Christine, I can’t add to anything Pat has said I just wanted to offer you my best wishes, I hope you and your family get the help and support you deserve.
Christine I can’t add to what’s been said either but I hope your friend gets all the help he needs, quality of life is so important for everyone but for us it makes our days so much more enjoyable and worth living for. Everyone deserves at least that.
\I came on this site initially because iv a neuro appointment coming up due to some unexplained symptoms…then last week i saw my aunt and uncle and we were talking about their son and how he and they would like him to come home… They dont use a computer so i thought i would find out how others manage and still have an enjoyable life.
Hi Christine, it sounds like your relatives need an advocate to represent them and their wishes to Social services etc it maybe worth enquiring if there is a pensioner and or disability advocacy service available in your area via age uk or local gov site.
Accessing community care & needs based housing can be very daunting for most of us at the best of times, involving social workers initially if there is any form of abuse going on may only serve to bring the shutters down.from how you describe the situation slow and steady giving a feeling that they are in control of their own destiny would be paramount.
Adding to the info On Sheltered housing that Pat has given there is a few extra care schemes/villages popping up around the country, these are based on the same ethos as sheltered but with a care team on site 24hrs, optional meal services, cafe, social & health club & general store, pretty much designed similar to what the Guinness Trust set up years ago. Worth asking about.
Christine I hope your appointment goes well. This forum has been a life saver for me. I felt really alone when I was diagnosed, although I’d been a nurse I’d never really been a patient and had no clue about benefits and help and couldn’t talk to my family about my fears etc as their medical knowledge was nil and they were already so stressed and upset by my illness.
Everyone here has been extremely friendly and supportive, I have hobbies and pastimes that with help I’ve learnt I can manage by pacing myself, doing different things on days I feel less able than I would on days I feel well. They’ve taught me that the feelings of guilt I suffered when I couldn’t manage my chores etc wasn’t realistic, nobody has ever come to harm because the ironing or dusting wasn’t finished on the day I started and I now have a good quality of life despite my limitations.
It really helps to be able to communicate with people who are in your situation than listen to words spoken by someone who has read a book or just tries to make you feel a bit better about yourself. I wish you well and don’t be afraid to pop in, if we can we will help.
Advocacy is exactly what they do need…and i will enquire at the agencies you have mentioned. What you say about them having control is vital. I feel that they are drowning in all thats going on. When they visit the home they are treated like on lookers when in fact its their only son who is in there day in and day out. The home allow him £20.00 a week spending money…where have his human rights gone, im frustrated so i can understand how his parents feel and yes they do feel powerless.
I cant tell you how much chatting on here has helped
My appointment to the neuro is in November. Not really sure whats wrong with me. My legs and arms are very weak, i have balance problems, electric shock sensations, fatigue and severe pain in my neck and shoulders. Its almost like my neck and shoulder muscles do not relax when i use them, they are very tight/stiff.
I also have crohns and Hashimotos…i hope they get to the bottom of it.
Sounds like you have a lot to deal with Christine, hope the neuro gets to the bottom of your problems, like Cath has said use the forum, this journey can be very lonely, family and friends can be great, people on here understand exactly what your going through.
As for Hashimotos I have no idea what that is, sounds like a Japanese car company hope it’s not life threatening or I’ll feel bad for the humour!
Id never heard of it before i got it either…Hahimotos is an autoimmune disease which affects the thyroid,most people with an underactive thyroid have Hashimotos.Usually doctors dont treat the Hashimotos only the underactive thyroid… Humour is good without it where would we be,
It is so good you are doing something for this poor family it does sound to me like they are floundering. You have had some good advice on here. Things that I wouldn’t have a clue about. I do know something about care homes. ​
My mother who had dementia had to go in one and although we felt awful it really was the best place for her and she was well looked after until she died. My father in law is now in the same situation but I feel with him we have lost him. The care home doesn’t really involve us as a family and we feel like we don’t have any say on his care. Don’t get me wrong he is well looked after but you do feel left out.
What I am trying to say is it must be a bit like that with your relative and he is still quite young and he knows what is going on round about him and that makes it worse.
I so hope something can be done to help him.
Good luck with your health problems and hope you get a dx soon. I also have an under active thyroid but have never heard of that Japanese thingy.