New member asking for guidance and advice

Hi, I am new to this forum, just trying to find my way around?
I have been caring for my husband for ten years since he was diagnosed with rare neurological degenerative condition in 2007. His mobility has decreased significantly over recent years and his sensory loss has spread too.
There is no support network for his condition, the closest is possibly Charcot-Marie-Tooth / or possibly MND- so it is very easy to feel isolated when you cannot find any person with exactly the same condition.
I have been claiming CA since I stopped working in 2012, but I am due to receive my State Pension later this year.
I have never had a Carers Assessment, and for the record my husband hasn’t seen a OT or anyone from social services since we downsized into a smaller home in 2011. We made adaptations ourselves with the only additions from the OT- a stairlift provided and grab rails in the shower/ wet-room, plus elephant feet for our sofa
They told us that because we had made the structural changes ourselves, we were no longer able to claim a ‘retrospective disability Facilities grant’ to help with the building costs.
It seems we are finding out that there is more help out there, but we were ignorant in where to find that help? I am hoping that by joining Carers UK, I am going to find the support we need going forward.

I am concerned that my health could affect my ability to give him the care he needs as I get older, but more so he is entitled to better support- and not feel he has slipped through the ‘net’ and off the social care needs list?
I know we must take responsibility somewhat for just getting on with our lives as best we can, being independent as possible, but I am truly concerned for the future needs he may have?
Any input and guidance would be welcome?

Welcome to the forum.

My 43 year old son is brain damaged, some things like driving a 10 ton 100 year old steam engine he can do well BUT he can’t read, write or do any maths. I’ve had so many problems over the years trying to get appropriate support, a real nightmare.

I would contact the MND Society anyhow, they may be able to give you emotional support, or suggest someone who can.
Ask Social Services for a Carers Assessment for yourself, and a Needs Assessment for your husband.

Think about what would help you in your caring role. Counselling, gym membership, dishwasher, tumble dryer, gardener, domestic help, anything at all. Definitely try to do something for yourself every week.
How much is your husband able to do for himself now?

Hi there,

Definitely ask your local authority for both the needs assessments. The sooner the better in our experience as it is taking a long time to get through ours. It is definitely worth reading up about the assessments so you can think about the questions they will ask before hand. There are some good fact sheets on this site. Also keep notes on when you have made contact, what meetings you have had and what has been agreed.

Do you now need additional equipment to help you care for your husband now his mobility has decreased? Although you won’t be able to get a DFG to help with past adaptions if your husband has new needs then you can apply for a DFG to meet these. Authorities do also loan equipment such as stand aids, mobile hoists and then there are wheelchair services if he needs these things and is eligible.

With regards to the future think about what you will need. You need to think about what happens if you are ill and what help you will need in those circumstances. You should also think about if you need some help to give either you or he a break and also what effect caring might have on your health physically and mentally.

Thank you for your sound advice regarding carers and needs assessments.
I will read up more on the fact sheets. We found from previous PIP assessments, we were poorly prepared for the early physical assessments.
Thank you too for all the words of encouragement too. We have tried to be independent and manage our circumstances ourselves- my husband is a very proud man and has always provided for all the family as best he could. It is not easy for him to ask for help, it upsets him. He has never been offered counselling to help him adjust to the effects of his condition and deteriorating health- only antidepressants from our GP?
Regards Ros

Rosalind, the more help your husband accepts the longer he can stay at home.
And he MUST consider your health and well being as much as his own, because without you, the only realistic option may be residential care.
If your husband has always worked, gently remind him he’s been paying for services he might need “one day” all his working life. Benefits are not charity, but more like an insurance payout.
It’s really important that you reduce the jobs around the home as much as possible, ideally having a domestic help and a gardener, to save your energy for caring. Streamlining the house as much as possible helps, if you have things you don’t currently use but don’t want to part with, buy some Really Useful Boxes and store them in the spare room, loft, or garage.

It was not very easy for me either. My rational mind knew there were very few options available however my bottled up emotions took over my mind completely. I recommend making some brief summary notes on your options. Good luck. Any update original poster. It was quite hard. One thing that really helped me to calm down was making notes and emailing local places in order to find out some more information. Try fixing up a time to see over the entire place.
Call to arrange a suitable time to meet. I used to write a short report on every single care home after I visited to help things. I also interviewed people in addition to analyse experience levels, personal qualities and key skills beyond doubt. Use your notes to guide you to a sensible decision based on the information. Read beyond the lines of the report to determine suitability.