Hi. I’ve just found this forum so thought I’d join and hopefully connect with some of you.
I’m a full time carer for my husband who has MS.
I’m struggling to cope and feeling grief at the life we’ve lost together. I’m sure many of you feel the same way.
Thanks for reading and it would be great to chat to anyone!
X
Hi Annie, welcome to the forum.
Are you getting any help with caring, so you can escape?
Hello & Welcome to the forum AnnieG
Are you and your husband getting all you are entitled too. Are you able to get any respite time and do the things you enjoy. There are many forum users who are full time long term carers. Are you connected to any local carers groups.
Hi Annie,
welcome to the forum.
When was your husband diagnosed? MS is such a cruel condition and has a big impact on the person and their family. Not easy to adjust to.
If you haven’t seen this booklet, it might be of help to you https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/KIP/Supplement.pdf
…this booklet is for and about you. It is designed to help you understand what is going on and acknowledge feelings that you may be experiencing, and to give you strategies to deal with your own emotions and challenges while trying to support your loved one.
I agree with Bowlingbun and Sunnydisposition, it’s important to find time to continue doing things that you enjoy. Taking time out from caring will benefit you both.
You may also enjoy the Cuppa for Carers virtual meet ups Online meetups | Carers UK.
Melly1
Hi. Thanks for your replies.
We get a direct payment from our local council that pays for a carer for 7 hours a week. So I use that for one day…when I go to my elderly parents to see them and help them!
Apart from that I’m just at home with my husband. There are no other care options and we can’t afford to pay for care.
My husband gets PIP and ESA and I get carers allowance. There’s nothing else we are entitled to.
Husband was diagnosed in 2013. Rapid progression. No longer mobile and needs full help with personal care.
I would love to do some of the things I enjoy but it’s just not an option?
That is a ridiculously small amount of Direct Payments.
Time for a new assessment, and a Carers Assessment for you.
What support does mum need?
I’ve been a multiple carer and it’s VERY hard.
Hi Bowlingbun…
Carers assessment is all up to date. We get funded for half of my husbands care, the other half we have to pay for. However we can’t afford to make the payments towards the care so we just use the 50% our local authority pays. I told them 2 years ago that we can’t afford to pay…it’s an ongoing issue. I can’t worry about it anymore so just use their half until they sort it out!
My mum has Parkinson’s and dementia. I just help with getting her washed, dressed etc and wash and blow dry her hair. I do some washing for them too. My sister helps too. My dad, although 85, is very capable. It’s the only time of the week I get to see them.
I have to say I’m feeling a bit sorry for myself at the moment with the lack of any sort of life for myself and no prospect of anything changing.
X
Can I suggest you ng the Carers UK helpline for a confidential chat about your finances.
Did you know people with dementia are exempt from Council Tax?