I am very sorry indeed to hear about this, and especially that you have not been out for 18 months.
My OH had Parkinsons which led him to become paranoid; and very anxious so he did not want to be left - he thought people were trying to kill him. So I do understand that feeling of not being able to leave him.
It took me a while but in the end I came to the conclusion that I could not be a fit carer if I did not look after my own needs with as much dedication as I looked after his. It is a big psychological leap to make I know. We are programmed to care, and we gradually slip into it and it takes over our life before we realise it.
With dementia, and the sort of problems my OH had, it is even more difficult because often the person we are caring for may not seem like the person we married.
This is how I coped ( or tried to cope):
- I employed a friend (someone he also knew) to be with him when I needed to go out anywhere. For example, I was determined not to stop going to the choral society I sing with. It had got to the point that when I did go, I had to keep ringing him up to check he was OK and invariably I finished up giving up and going home.
- I have DDs living locally and they would do their share of sitting with him - they too were on board with the idea that I had to look after myself too.
- I had lots of support from the Parkinsons nurse - there will be similar specialist nurses for your OH's condition.
- I also had lots of support from the local Parkinsons UK - there will be a branch of the Alzheimers Society near you.
- there are carers' organisations in most areas - try googling for the one nearest you.
- Social Services are there to help you organise carers who might come in; but you can do this yourself via any agency if you are over the financial limits for LA help.
To be honest I think the biggest stumbling block is allowing oneself to acknowledge that it is OK to shed some of the load - the sense of duty is so ingrained that it can be a struggle.
My advice to you would be to have that struggle - and get some help. There is more than one way of discharging your responsibilities to your loved one - just because you might be handing some of it to someone else does not mean you do not care. You are making sure he has care, but not necessarily doing it all yourself. Honestly - that is the most difficult hurdle.
I am sending you lots of fellow feeling and a hand-hold. Please look after yourself as well as your OH.