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Can you help please

Hi,

Im a relative of a 59 year old man with PPMS, he lives in a nursing home and im concerned about his care and him in general.

His parents who are both in their eighties have dementia and used to visit him every day now they very seldom go. He looks out out of his window looking for and one of the staff at the nursing home said he will soon forget about them which i find alarming.

He has no siblings and only the occasional visit from extended family. I went to see him on saturday and he appeared in good spirits although a little confused and forgetful.He suffers with terrible bed sores and i have never seen him out of his bed. He has recently had surgery on his tendons behind his knees because his legs are bent to one side. I dont know if this is a symptom of MS or because he is always in bed , or both. I am not aware of any pyhsio been offered to him.

The nursing home provide food, warmth and keep him clean but surely his other needs should also be met. I am three years younger than him and i have choice about what i eat, what i wear, who i see, if i want a relationship or return to education or not, or to socialise.

He is celebrating his 60th birthday in december and said he would like us to take him to the pub. Staff at the home say that he is waiting for a specialist wheel chair because of his bed sores. I dont think its unreasonable for arrangements to be made to visit his parents or anywhere else he would like to go.

Does living in a nursing home mean an end to meeting all his needs and his choice.

Any advice would be appreciated

Thanks Christine

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I am 45 & live alone with PPMS. Going shopping once a week to get food is my escape. I would highly recommend getting a 2nd hand cheap push wheelchair & visiting a local park to feed the ducks. I had friends, but they don’t really understand things. Not many people do. Getting your relative to visit his parents would be awesome. I hope you find the time & energy to help. My best wishes.

Christine I can’t answer you with any experience of this situation but I do know he will have a social worker who oversees his care home experience. If you can find out who this is then speak to her/him for advice regarding your concerns. If your relative doesn’t know their name then ask the manager of the care home. You may not have the authority to ask these question but someone will, if not the person in care then a next of kin.

Another idea is to contact his local MS group who should be able to advise you, perhaps they have a weekly meeting he could attend. If they don’t have the ability to pick him up and take him back to his care home there are taxi companies who have wheelchair friendly cabs.

Hopefull someone with more knowledge of this kind of thing will be along soon to advise you better than I can.

Good luck and thank you for caring

Jan x

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Thanks…one of the problems in taking him out is that he has no use of his legs and is over 6ft tall and im only 5 2 and i wont beable to get him in and out of my car. It seems like all his independence has been taken from him with no alternative support in place other than the basic care needs provided by the home.

I will continue to find ways to support and one of them is hearing from you and others that have found ways to manage their condition and continue to live as independently as possible.

Thanks Christine

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Thanks…Today i rang the home and left a message for the manager to ring me back, i was going to ask for his social workers contact details…the manager did not ring me back so i will try again.

I think your suggestion of a local MS group is a good idea if transport could be arranged.The home i am told has alot of people with MS i am told at quite a young age so you would think they would beable to facilitate activities and arrangements to meet various needs.

Thanks Christine

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Hi Christine,

What Jan states, makes a lot of sense. Getting someone on your side, that gets things done, is very handy.

People in care need to get out, or they regress much quicker. Bed sores get worse. Finding out what medication your relative takes & getting to know the routines they are used to could help.

Things are never easy, but with the right people, it will all work out. I can picture you all having a family Christmas dinner together.

Good vibes, have a lot of positive results. :slight_smile:

There are services that help arrange days out, especially for your requirements. The MS Society has funding for such situations & they know exactly how to help. The help line number on this site is quite handy.

Good luck Christine. It’s uplifting to know people like yourself, really do care.

You know these are exactly the issues we dread. We are carers (unpaid) for our son. He has Primary Progressive MS of the most severe form. He also has Type 1 insulin dependent diabetes which he took in childhood at six years old. He is totally blind now and nothing connected to diabetes, all MS related. He can’t walk his bladder and bowel are incontinent his memory is very bad, he was a chemist with a master’s degree and now he thinks he’s happy lying on top of his bed most of the day doing nothing. He can’t do anything because his mind doesn’t take anything in. We are 77 and 73 respectively and dread the day we are unable to care for our son. We have Power of Attorney as do his sisters should anything happen to us.

recently I wrote to Scottish Government to see if our son qualified for Ongoing Health Care and were put from person to person and told things like who is your GP we could arrange for someone to talk over your son’s problems with your GP not one person saw the reason why I was writing. I told them my son couldn’t see, could hardly speak, has severe bowel problems a supra pubic catheter and couldn’t even listen to audio books because his mind can’t take them in, he can’t join groups because he is not fit and on top of MS he has type 1 diabetes. We care for our son 24 hours a day because if he has low blood sugar has to be checked during the night - when he was working the diabetes gave him no problem he was well controlled and is nine years younger than his sisters and we and they were very protective of him. Anyway we were told No your son doesn’t qualify for Ongoing Health Care because he doesn’t need specialised nursing you see at the present time we don’t need help but know things could change rapidly but we take things a day at a time. If we did have help of any kind it would have to be paid for because our son is 42 and this is Scotland.

Back to your relative’s problems, the bed sores are terrible and bad nursing care. They just should not be there he has enough to cope with. His memory is probably his saving grace too because he won’t wholly be taking everything in. We do get respite for our son two weeks now and then every few months but he’s not really fit. Every time he is home from respite he has picked up a bacterial infection and this time a sore on his bottom too. All bad hygiene but we never complain just sort it out when he gets home… I think your relative should be allowed out with help.

Cant write any more just now, have to see to our son but hope you get the situation with your relative sorted out.

Thanks…Its actually his birthday on Christmas day and im worried that his parents wont remember even though i know its not their fault.Iv had some great advice from this site and will contact the ms society and take it from there.

Christine

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