Trying to carry on

[Angel 4]

I am so sorry for your situation, it's bad enough when you're older, but for you and your husband it's just so unfair when being so young. As others have said, it is your home and your sons' home to, and you and your sons deserve to be able to enjoy your home and not become completely isolated. On my part, over the last 5 years I have learnt to just carry on, I don't tell my OH what's happening because he can't remember fully and becomes agitated, and it is the 'idea' of it that has proved to be the problem. It's hard because you want to treat the PWD as you have always treated them, consulting them over decisions, but their decisions are not rational, and you and your children need to find a way to continue your lives, your sons need to be able to have friends over. It does feel as if, as carers, we are expected to completely put our own lives on hold and devote every waking moment to the PWD. Since you have two rooms, maybe make sure your husband is comfortable in the other room - TV, books, snacks, drinks so that his routine is not disturbed too much?

I feel like not tell him is actually the best way forward, it’s so hard not to do what I’ve always done and ask him… but he’s not the person he was any more.
Thank you for your reply x

 

[JaxG]

Over time I have come to realise that I also am entitled to a life, and have the right to put myself first some of the time in as far as the illness allows. It's a learning process, made all the more challenging because the PWD will deteriorate and their needs change, but you are entitled to have a life, and your sons certainly are entitled to be put first. For me, my children (now grown up), and grandchildren are the most important people in my life, and if it was me I would put their needs at the top of the list as much as you can. Sadly your son's lives are going to be affected but they do need to be able to enjoy their young lives.