Hi, my husband is now in a nursing home, something I often feel guilty and a failure about. After posting some recent posts it was ,in one way ,so good to learn that others also have loved ones in nursing homes. It's such a difficult thing to cope with as is caring for someone suffering from MSA at home. I just wanted to encourage and applaud all of you are are doing such an amazing job caring for someone at home. I haven't posted on this site so much since my husband went into the nursing home as I realised I felt a bit of an outsider - not from anything anyone here said, just my own struggles. It's difficult to have handed the day to day care of a loved one into someone else's hands, but there is lots we can do to support them still. It might be good to hear others feedback about how they've felt in this situation as it brings up very complex feelings.
If anyone is trying to care for someone at home I would really encourage you to get any adaptations to your house done in really good time. we had planned on putting in a wet room and making a bedroom downstairs, but unfortunately the clock beat us despite having architects drawings already done, the need for it came much sooner than we'd anticipated. My husband also needed a load more care - a 24 hour a day live in carer, 4 visits a day by another carer plus me helping out in between. Despite trying really hard to set care up it was impossible, there just weren't the reliable carers out there and we were let down many times.
Hope this is of some help to someone. This is such a great supportive community, thank you.
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Don't feel guilty, there's only so much you can manage, it's not easy being a carer.
My wife has the MSA and I care for her at home at the moment. I'm bigger than she is so with all the correct equipment I can push, pull and hoist her and hopefully do an acceptable job of caring for her.
If it was the other way around and I had the MSA I don't think she could manage and I would be in a similar position to your husband.
Good advice when you say get ahead and plan for adaptations.
You're doing the best you can, you can't do anymore than that, take care and look after yourself as well.
HiClearly you've tried everything in your power to care for your husband to ensure he is safe and as well as can be. Sometimes being in a nursing home is the best option.
Sue and I have spoken about this and we've decided that the only time this would be an option for her is if it's a danger to life for her to stay home or she is completely unaware of the change.
Luckily we have a team of great carers but we are constantly having to educate new carers on how best to look after Sue.
I heartily agree that planning well ahead is a positive and not to put these decisions off because "it might not happen to me" because it almost certainly will.
thanks Paul and Sue. Iain needs full time nursing care now partly because his blood pressure is so erratic and the Drs have tried stabilising it without success. The result is he frequently passes out even when just sitting and often for long periods. when he was at home I had to call an ambulance on several occasions. I do hope you manage to keep caring for Sue at home.
Thank you for this post which comes at a very opportune time for me. My husband has had MSA for 14 years, and the last 2 have been truly horrible. He has a live in carer, and a night-time carer, but the support is poor, and I don't feel confident leaving him for any length of time. I have a short break planned next week and he is going into respite care at a nursing home, but I am feeling that he should go in permanently as I am exhausted both mentally and physically. I feel guilty but I also need time for me.
Hi wow 14 years is a long time! I was burnt out after 3. maybe you can extend the period he is in the nursing home for just to give you a bit more of a break and time to recover. Yes, you do need time for you, your life is also important. Also if you are more refreshed you'll have more to give your husband than when you're running on empty.
Yes, it's been a long haul with lots of plateaus and then suddenly dips Eyesight is a problem now. I'm currently waiting for yet another consultant appointment, MSA is a condition which just keeps on giving.
you shouldn’t feel guilty , my mum looked after my dad for a while , but then had to get carers in as she couldn’t lift him, he ended up in hospital eventually when he got ill , but it’s hard to care for someone with MSA
we are looking at my mum going into a home now as her dementia is getting a bit worse , but it’s more the falling over , she just isn’t safe at home and we can’t be there 24/7
Hello, I am also struggling with the fact that my husband is in a nursing home. He went in for respite but they are saying it will be hard to get double up carers at home, and we would have to have a live in carer. Which is quite scary. I spent all the inheritance I got from my mum to adapt our home for my husband. It’s so frustrating and he wants to die at home. And we kept all of our 4 parents out of nursing homes. It’s so difficult
Noticed you mentioned plans for wetrooms, etc., and Calebsmum mentioning using inheritance to adapt homes. Think I'll mention this generally for all. After Adrienne's diagnosis we quickly realised we needed the equipment that Medequip provided (through Adult Social Services). North Yorkshire Occupationsl Therapists have helped provide a wetroom, a ramp, a d are now in the process of providing g s hoist. There are rules, but these adaptations should be available to you all. Enquire.
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