Hydrocephalus and the initiative of two

Carers' health and wellbeing
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Hi all, new here and wanted to say hello.

I’ve been with my partner now for 19 years, she has Hydrocephalus, FND, Scoliosis and Learning Difficulties as well as mobility issues currently caused by an abnormal bone growth in her hip. It’s been four months now since I officially left work to become her full time carer and it’s starting to settle in just how lonely the world becomes when you don’t have work as an outlet anymore. I’ve been pouring myself into my hobbies such as Warhammer, video games and the like in my free time but not really having anyone to talk to is hard, even on the good days it would be nice just to have a little chat with someone. But hey I just thought I would post here and see what it’s all about. Hope everyone is doing ok :blush: it’s really hard sometimes as her executive function and initiative are impacted so a lot of the time it feels like it’s a one way sort of love.

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Hi Chase, welcome to the forum.

Since you left work have the council updated your Carers Assessment? Are you sure you are both claiming all the benefits which you are entitled to? It doesn’t make anyone better but can certainly make life easier.

Is your wife able to get in the car? She must be feeling equally lonely too. Ideally it would be great if you could find something you can both enjoy together. I was once caring in various ways for all four parents and our son with learning difficulties. Very little time to do anything for myself at all.

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Hi bowlingbun, thanks for replying, yeah the finances are all pretty much sorted, just waiting on her LCWRA assessment now. My partner enjoys going to weekly singing groups which I love for her, she’s also really into trains and has her own Warhammer obsession :joy: it’s mainly just the shared stuff that tends to get left behind, like that feeling that we are a couple and I’m not just her carer.

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@Chase83 …welcome to this forum, you’ll find it a great place where you can chat to others who are or have been through similar.

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Thanks Sue :blush: that means a lot

1 Like