My husband has dementia and I feel imprisoned

New to this site
I have a feeling if imprisonment due to this nightmare illness.
I am not here all the time as I work. We also have a carer to help with the morning routine as I am out. Husband not keen on doing much. If we try going out it’s fraught with problems and totally exhausting. Conversation difficult.
I am finding it hard to cope with the lack of freedom or the guilt that comes with going out on own (we didn’t Go out together a great deal in the past so we are not used to operating as a couple other than for meals, conversation and decision making).
I am not sure what I am asking except probably hoping for someone who is or has been in same position for some support.

Welcome to the forum, the feeling of being trapped is a very common problem.

How old is your husband, and what can he do or not do for himself?

Yes, extremely common! The difference between looking after someone with a physical illness or infirmity is SOOO much easier (usually!) than looking after someone with a mental infirmity.

With the former, they are still the person they always were - but not with the latter. Dementia is vile and ‘drains out’ the person we once knew.

What you can do to ease the situation for yourself depends (as it always does in this day and age!), on money.

That will determine how much ‘outside help’ the SS will provide for you.

He is 76 and I am 65. He can get himself to bed, make a slice of toast and get cold drinks plus snacks from the fridge, get in and out of the car and we can sometimes go to restaurants, which he likes, but it’s a silent meal and often with quite a bit of food on the floor afterwards.

He is Much better on the phone than face to face. He can get the TV on but can’t seem to get what he wants. Can no longer operate computer. Blames the equipment. Doesn’t want to exercise - not even short walks. On the rare occasions his family visit he is a little better. Struggles to hear what I say but generally ok with others provided they look very directly at him.

The carer has s bit of a knack with him and can get him to shower (I never could). He can’t work out how to get in the bath. It’s not a very interesting life, as you can see!

I wish I could organise entertainment/engagement for him but I can’t figure out what to do! We’re not very well placed for groups as we don’t live in a city or large town. Taxis are prohibitively expensive in our area. Insanely expensive, actually.

The sad reality probably is that he is quite content in his own way, it’s YOU that would benefit from entertainment and social engagement

These is something called a Carers assessment from the local council that may give you access to some respite in some form. It is your statutory right to have one but councils tend to try not to do them these days. Youll have to push and chase.

Your local carers support maybe able to point you to dementia support groups , both for him and separately for you

If you are self funding you could increase care to cover some ‘sitting time’ so you can get out

're expenses, is he claiming attendence allowance, and the discount off council tax for mental impairment? These can add up to lot of taxis or extra care hours

Hi what area do you live in. I’m happy to do quick Google search to see we what’s available close by

Many thanks.

Some days are worse than others. I look towards the future and that is a mistake. It’s best not to think about the future as it is potentially too bleak.

Sean thanks. I have researched local things. There’s not much (West Sussex). The problem is my working. I can’t get him there. If we were in Surrey it seems it would be much better.