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Ell
Care options

Hi

This is my first post so excuse me if this has been asked before.

Mother-in-law has MS, she has had a few relapses lately and was admitted to hospital with a suspected stroke (luckily that was not the case) She is unable to stand, drink and eat by herself, and her speech is very limited. She recently had an Mri that should small vessel disease, which has never been explained to us I have looked it up online. She is also incontinent. It’s very sad to see her how she is now and I just want to do anything I can to help her. Her Husband has decided he did not want her home after she left hospital, he didn’t want the adjustments on the house to make it suitable for her, and he also did not want carers in and out of his home. I have to respect his wishes despite feeling as though she would be so much happier at home in her own environment.

 I was told by social services to look for a nursing home for her to stay in until she has her DST assessment done, or even permanently if we liked it there. I hope this does not come across wrong but after visiting her in the home I really feel it is not the place for her, the Staff are great, her room is lovely and everywhere is very clean, but it is an elderly person home where 50% of the residence have Dementia. I feel so sorry for her whenever I leave. I’ve sat in the communal lounge with her and everyone is falling asleep and she is just sat there. It’s a very depressing thought knowing this could be the environment she will be living in forever. She is only 57yrs old.

My question is are there any homes that care for MS patients that aren’t centred around the elderly? We live in the Bedfordshire area,  any advice would be very gratefully received.

Also what stage of MS does it seem like she is in as that has never been said to any of us?

Thankyou in advance x

Hi

I am so sorry to hear about what you are all going through. I don’t live in your area but this link may help.
https://www.mssociety.org.uk/near-me/branches/bedford-branch

Best wishes

Paul

I have MS

Hi Ell

I can imagine how heartbreaking this situation is for everyone concerned. 

The problem is at first I felt rather negative towards her husband. But then thought about it and I can actually see his perspective. It’s just sad for the whole family. 

I’m sorry I don’t have any solutions to offer. I can’t imagine how anyone in their 50s could bear to live in a retirement care home. My Mother in Law is happy in hers, but she’s aged 89! I’d want to slash my wrists rather than live there. 

As for what stage of the disease process, that’s really impossible to answer. We are all so different. It sounds like she sin a progressive phase, but even that’s not so easy to judge. Some people with very profound disabilities manage to keep on going for years. Whilst others have impaired heart or lung functions which means they are unable to fight off viruses. 

I hope you manage to find an answer. She surely deserves more than an OAP care home! 

Sue

Anonymous

Hello Ell, sorry to hear about the situation, it sounds difficult for all concerned. Have a look at https://www.carehome.co.uk/care_search_results.cfm/searchcountry/UK/sear... as this may give you some options. Sue Ryder and Leonard Cheshire may have some options as well.

We were sent to have a look round a Leonard Cheshire place with our daughter who is disabled from birth(not ms) as a possible place for respite care,they did have some younger people there that would have been about your mother in law's age or a bit younger.They made a point of introducing us to the younger residents who they thought kayleigh would get on with but for us it was the same as your current situation as kay was 19? and the youngest there were prob about 45-50. 

 

 

I have MS

Would she be abled to rent a flat and get a Personal Budget with Direct Payments and have carer's come in?

You could ask Adult Social Care about this option. 

Hi EII,

I have brother-in-law (56 yrs old) with PPMS that is in permanent care now in a Luton area care home (with similar 50 yr old residents). He is also incontinent, can speak with difficulty, but memory gone after 5 minutes. In his coherent periods he says he knows where he is and is 'content' in being there. My wife has the 'Power-of-attorney' for him, as his father can't bear to see his son in a home or this MS condition (a 'pride' issue) meaning my wife also deals with her (his) mother for visits.

Not good, but then again that's family sometimes I guess!

Home deals with permanent stayers, and the occasional temps

If Luton area is a closer Bedfordshire location for you send me a 'message' and I'll respond with the home details

Kevin

Wow firstly as how awful for your mother in law. I would feel completely abandoned and I can only feel that the marriage was not strong to start off with .. (I shouldn't Judge).

 

My husband has had PPMS since 1998 officially diagnosed 2003. Since then he is almost bedbound and now his cognitive problems such as dementia type symptoms have increased but one thing I told him is I will never put you in a home. 

I can understand the loss of your home when carers are in and out, as they are in my home  from 8am until 7pm at night and believe me that last call of the day is a relief. However they are required and without them it would be pandamonium.

I too have seen those homes for a week respite and NEVER again. They forgot my husband was in a room for a day and no breakfast and medication in the wrong place and times. If me getting respite means they nearly kill off my husband I would sooner stay without it. He is also in his 50's so sitting unstimulated by the older generation was not and is not good for progress just slow decline.

 

Hopefully he will have second thoughts and let her remain where she should at home.

 

Caz

 

 

 

Anonymous

Oh my... Scary thread.

Ell. Bless you for caring enough to find this forum and posting.  (The bless you was non religious). 

I am 44, diagnosed for less than a year.  The idea of Being in a home is vary scary. Sorry, the idea of being in a 'home' pre 80 years old is too much to give any sensible response. 

Other than listen to your instincts.