I'm so sorry you're going through this, dementia is hard enough when we care about the person, but when it's a strained relationship...
Ok first off, I just want to say you do NOT owe him anything. There is no rule that says you have to deal with him or his care. I know there are lot of of things at play - a sense of duty, responsibility because you are his wife - but you DO have options. Please consider what is best for you because this is your life and happiness.
Caring is difficult enough when there was love and kindness in a relationship.
First off have a serious think - and talk to others (friends, family or a counselor - if you don't have one, please consider looking) or GP. Do you WANT to be his carer? You are under no obligation. This is really important. Caring is 24/7 and draining. Giving up your life for someone who's only ever made you miserable, no one would blame you. You are allowed to say no. That's OK.
Just because someone becomes ill/sick does not erase the hurt they have done, nor should it be discounted/ignored. You have to decide if you are prepared to care for him. If you DO decide to, I think it's critical you put in boundaries. For example as your husband's care needs get worse, do you want to feed him, wash him, clean him? Be honest with yourself about what you can manage. If you keep caring for him due to how he is, you'll get resentful and it'll eat you up and play havoc with your own health.
On a more basic level, do you want to talk to him etc. Apply for a care needs assessment for your husband via your county council. If it's too much, turn his care over to the county council - say you cannot care for him. Your are clearly beginning to burn out.
Please, please get a care assessment for him:
You can also request a carer's assessment for yourself at the same time - be honest with how much you are struggling with him, explain your marriage situation. Getting a care assessment, you can get people in to help and they can take over his case. Also have a think, do you want to live with him? Be practical, how well is he coping in the house - trust me, this will get worse.
Go back to your GP and explain how difficult it is being his carer. If your current GP doesn't do anything book in to see another GP at the surgery, or try a different surgery. Be persistent. Make some noise, tell them you cannot cope. Tell them you aren't sleeping - that is crucial. If you are sleep-deprived you cannot function on a basic level. It's not safe.
Look into counseling services - there are cheep and free options. GPs can hep offer free, time limited counseling (but there are waiting lists). Google can give you directories of counsellors with filters. Please make time for your mental health. Make sure you eat regularly, relax, sleep and exercise. Even a walk round the block can help. Go on YouTube there are lots of breathing exercises, meditation, mindfulness, yoga videos. THere are also videos about being dementia carers that can help. Also consider asking your GP about antidepressants and/or anxiety medications. Your could look into more natural remedies like St Johns Wort, or try essential oils like lavender, rosemary etc these are good for stress, anxiety, pain etc.
Look into home help. This can be private, or funded by county councils. They can help with cooking, cleaning, laundry etc. You do NOT have to bare the burden yourself, nor should you. Make things easier, cut corners. If you can afford it, consider a cleaner once a week, or once a fortnight. Buy ready meals, get take away, get meal deliveries (you can buy between one week to a month's worth and freeze). Laundry services will take and delivery your laundry back. Even if it's once a month it can help. Ask your kids, neighbours, relatives to help. Could they offer lifts, bring groceries, pop round for coffee etc.
There are also carer organizations where people will come in to help you care for your husband - feeding, dressing, giving medication. his can range from fairly basic up to full on 24/7n nursing. They can also provide companionship etc.
The sitting smoking could be a sign of apathy - a lot of people with dementia stop doing everything - their hobbies, interests, socialising etc - or maybe he was always like this. Could you instill a rule about him only smoking outside?
Talk to your kids. Be honest about how you are struggling, how you feel about him. Do they know you are so upset - I can guarantee if I was your kid I would either be aware or if I wasn't I would want to know. They'll want you to be happy. Stop keep bottling it in, because it *will* make you sick. Don't be afraid or ashamed to ask for their help. Kids want to help their parents. Is there anything they could do that would help e.g. visit more often, cook some meals, take you or your husband to, or to medical appointments?
Dementia does get worse. At some point he'll need 24 hour care. Have a serious think what you want from life. You are allowed and entitled to have a life of your own. You can legally separate or get divorced - you do not have to live with him.
Think what you would advise if one of your kids or friends was in your situation. Would you tell them to put up - they had to stay and care for their uncaring spouse? Treat yourself the way you'd treat someone you love. You are entitled to rest, respect and self care. THat includes walking away from caring.
Try doing some stuff for you - book a massage, get your hair done, meet friends for coffee, do a hobby. You will burn yourself out and become ill. Then you won't be able to look after anyone. Build in treats for yourself. Consider booking a night away or a mini break - get a carer to look after him. watch funny videos/movies. Try doing mediation videos there are loads of short ones on youtube.
With nighttime - raise this with your GP, tell them how bad it is. You can also install home cameras if there are fall issues etc, buy a data chip to record and you could show it to GP, kids and they can see how much you're struggling. You cannot function without sleep - that is critical.
Have a look into care homes - focus on nursing homes rather than residential as they can deal with complex care needs that dementia has. Start making enquiries now. Explain your situation and his care needs. There' no rule that you have to say caring for him. You're allowed to hand his care over to someone else, especially someone who wasn't kind to you. Consider getting carers in to help. You do not have to, nor should you, cope with caring for him by yourself.
there might be some useful info here - it's about toxic parents but I think it can apply to toxic spouces too:
Whether you're providing hands-on care or managing care decisions, setting boundaries with difficult elderly parents enables family caregivers to provide care while safeguarding their own mental health.
care-giving for a narcissist:
Please know you have options. Talk to people and get advice and opinions. COnsider talking to a divorce lawyer - this may seem drastic/unfair but don't ever rule out anything. That takes away your power and choices.
Please continue posting to us - contact dementia support groups - there will be ones for carers, contact your GP, your kids. Raise your voice. You deserve to be heard.
Please keep us updated with what happens.
