Hello & thank you!

I’ve been hanging around here a while and I wanted to say a big thank you in my first post - to all of you who use this forum. I mean there are thousands of us out there but it’s remarkable how quickly you can feel completely alone and isolated in this position - it has been so reassuring reading all your experiences.

And now an introduction to us… Dad is now in his 90’s. He moved in with my husband and I 18 years ago and I’ve been caring for him for the last 10 years or so. That was really just the cooking/cleaning/washing stuff as his physical mobility reduced but he was cognitively good and was great at entertaining himself and I carried on working full-time. Following a hospital admission with delirium 6 months ago he never regained his mental agility and has now been diagnosed with moderate-severe mixed dementia (Alzeimers/Vascular type). I feel like everything was wrong with that hospital stay and discharge, and that there doesn’t seem to be a single day without another hiccup or minor battle with various agencies or support services. I’ve stopped working because dad’s care needs have escalated at night, and we’re on an ‘urgent’ list with social services for a care reassessment (they’re “overwhelmed” apparently. Aren’t we all!?) Anyway, wasn’t meant to be a big moan. But so many times I’ve wondered if it was just me over-reacting to different conversations and scenarios and it’s been good to read that many of you have been in similar situations (well, not good obviously - none of us should be having to deal with a challenging system and difficult professionals - but hopefully you know what I mean!) Ironically I worked for 30 years in healthcare, health policy and patient advocacy so I always felt I had a good handle on the system and knew how to navigate it. Suddenly it all seems so flaming hard!

Luckily I do have a supportive friendship group and family and genuinely don’t know where I’d be without them. Thanks for listening here too x


It’s not just dad 18 years older, it’s you too!
I hate the way as I get older my energy has plummetted, especially after surgery.
From what you describe, residential care is almost inevitable. Make sure it’s before any further crisis, not after you have a breakdown, or worse. Things will only change if you make them happen.


Hi @AliceUnderground … it’s definitely not just you! I’ve had some major battles just to get my hubbie what should be basic services… like a GP appointment! I’ve found success by just being bloody minded and persistent but it sometimes feel exhausting to always have to push and push and be that annoying person. And I agree with @bowlingbun … as well as caring for my husband (who is 26 years older than me), I’m also going through the menopause which really impacts my own energy levels. Anyway, welcome! I’ve just joined in this forum as my husbands care needs after over 10 years of Parkinsons have escalated and it’s a great support.


Dear Aliceunderground.
Thanks for sharing your experience and for the kindness you show to all of us. You love your father and that shines through
Warmly Ula


@AliceUnderground Honestly you are not alone. Sadly so many of us struggle to get help and deal with professionals and at times, even medical staff. The system is totally broken. I am truly sorry you are having to go through this and many if not most of us can relate to your post.