I’m wondering if anyone has experience/wisdom regarding arranging nursing home level of care at home for their loved one. My Mum has MSA - she has just gone into a nursing home but I’m really struggling with it. I’m trying to look at other options and wonder how feasible full time care at home is when there is nobody else living in the home. A brief internet search shows some companies that do provide this sort of thing.
We’re in Glasgow. Thanks for reading.
Katie Claire
it might be worth getting in touch with msatrust.org as they may have some information my dad had carers in twice a day but my mum was still around
i’m not sure how expensive it would be, may be cheaper than a home x
Thanks for this, I think it will be more expensive than care home costs. She did have carers twice a day plus family ever present before she went in but it wasn’t enough. The idea appeals to me but from experience the reality will be different.
Best wishes x
i hope you get something sorted xx
Hi,Sorry you are having to deal with this. My sister had MSA for a long time so the system may be better (or I suspect worse now) But we shared a house so she had live in cover, she was assessed as requiring 24 hour attendance and we had the right amount of support from outside agencies, at the beginning a couple of hours a day, but after 4 years she started falling so we had a trip and stay at our local hospice, who arranged her drug and pain management, and then liaised with local authority to arrange four visits a day for personal care and some ‘sitting/talking’ care so I could go to work. We did find that when she did go somewhere for respite, or the two occasions we went to our parents funerals they were good but not as good as care at home. The homes are good usually, care about their residents etc but they did tend to “park” Sue on her own with a call button, which sometimes she could use and sometimes not, and sometimes it didn’t get answered, because they were busy with other patients. As with a lot of MSA things it is very individual so you’ll need to talk to your Mum about what she wants and then be a bit of a squeeky wheel to get it (I became known as the notorious sister!!)
GOOD LUCK
Stay strong or not as YOU need and don’t be afraid to take appropriate help.
Pippa
XXX
Thank you Pippa, what you’ve said about your sister being ‘parked’ with a buzzer is one of the things that is hurting me most about Mum in the home. We cared for her at home this last year and a half, taking turns to stay overnight so she always had one of her children in the house and grandkids popping by and staying overnight at times (as safely as we could throughout the pandemic). So it’s really hard to think of her being on her own - we’re visiting as much as we can but it’s limited due to Covid still and it’s been very hard to speak to her on her phone too. I’m definitely the notorious daughter. I’m trying to come up with ways of making it less hard for everyone but it would be hard to go back to what we were doing before without some other plan… am thinking about even just taking her home at weekends but I’m not sure how feasible that would be for lots of reasons (not least Covid).Thanks for sharing your experience x
Hello there I'm also in Scotland and I have been running dad's care in his own home with live-in carers for about 4 or 5 years now. With support from local authority carers for the personal care side. There are lots of considerations and I'm happy to direct message on here. It is effectively like running a care home for one which can be a lot of work but for us it is the best option. Kay x
My mum has been cared for in a nursing home since Oct 2019 so we've been through the pandemic which has been so, so hard but we are coming out of such restrictive visiting. It was such a hard decision but the practicalities of looking after mum at home were immense - the house would have needed expensive adaptations and my sisters and I work full time & you do need to 'manage' the care, equipment, funding, GP etc. I also really suffered from a lot of guilt with mum needing to go into care - but from seeing what the staff have to do, I honestly don't think it would be manageable at home so I do know mum is safe & we're not going to be in the situation of frequent hospitalisations.
Homes are very different though, ours has its faults but they have great GP support and also a priority call to get paramedics to visit if needed. The nursing staff also now know mum's condition very well which helps.
With visiting getting easier it may feel better for you....I know it has for me over the last couple of weeks. Look at different homes too if that helps, you need one where they won't pigeon hole MSA and will appreciate how complicated it is.
Sadly there is no perfect solution.....I've also had support from our local hospice, that's vital too - for you.
Thanks so much for sharing this. It’s just so bloody hard, isn’t it? And there is no perfect solution as you say. She does have a hospice nurse who’s going to visit her at the home now too. We’re still mulling it all over so we’ll see. And I’m hoping the home will address some of the issues we’ve raised. And hopefully the visiting will continue to improve.
Thanks again and best wishes to you and your Mum x
Really set your expectations to the home. This is the second home for mum, the first one was not right for her and couldn't meet her needs. One of the issues is that they probably won't have had an MSA case, we've found the important things are good GP support and staff who are prepared to understand that families know a lot about the condition! It does need specialised nursing support...
Hi again, I'm not a weirdo, I just suggested to DM because there is so much to say on this topic. On average I allocate 15-30 hours of my time per week to dad's care, either visiting or admin/running the house/liasing with care team/community health professionals. I'm on call for the live-in carer 24/7. Introductory care agencies for live-in carers supply self-employed people and are therefore not regulated by the care inspectorate in Scotland. You would need to supervise the quality of the care yourself.Kx
Thanks again! I didn’t think you were a weirdo!!!! Not sure how to DM but will find out as your advice will be very welcome
No worries😊 I'm not quite sure how to do it either lol. I meant to say I think there is a Scottish support group meeting this Thursday on zoom. If you contact the trust they can give you the link. I won't make that meeting, but Katie the nurse has my contact details. Kx
I have my wife at home, 4 pairs of carers every day and district nurse on Fridays . Viewed some nursing homes but a bit like back in times to the 50's. Social services were pressing me to accept one 30 miles with travel time anything up to 60 mins away but declined.
where to go from here?
MSA Trial in early stage <4yrs patients completed. Company is now in trading halt 
