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.
You weren’t wrong @bowlingbun ! We battled on for the next three months and never did get the reassessment of his care needs that was promised ‘urgently’ in January. In June he contracted COVID and lost most of his remaining physical and cognitive abilities. We called an ambulance and they didn’t want to take him into hospital because of the COVID and thought he would be OK at home with additional care (promised later that day). The frailty team came out and he rallied slightly being able to stand from his chair for a moment and they also said he should stay home even though I couldn’t get him to the toilet etc. By the evening he couldn’t get up again and I had to leave him in his armchair all night. In the morning his usual carer arrived and was incensed that he hadn’t been taken in the day before, his boss told him to call an ambulance again and then he stayed with us most of the day until he was taken in as a social admission (the ambulance crew having spent more than an hour on hold on the phone to social services just to be told the extra promised care wouldn’t arrive until the following week) and deeming it unsafe to leave him at home. He was in hospital for nearly 6 weeks but has just transferred to a care home where he’s going through CHC funding assessment which the adult services worker seems to think he will qualify for. The system is so broken and I can’t help thinking how expensive and inefficient it’s all been and how it could have played out differently. But I am so relieved he is finally somewhere safe and being cared for 24 hours. We’re finally getting sleep as a family but the house does feel strangely empty without him. Thanks for yours and others support here as always.
It really shouldn’t be like this. It was a huge relief when mum went into a care home, but I was a carer of sorts but in a different way. Try to get away somewhere for a few days before winter arrives. Lots of holiday cottages are available from September, the nearer the date the lower the price. Getting away from it all will really help you recover.
And just like that, dad is gone, five weeks to the day moving into the care home. Our initial relief at having him somewhere safe and being looked after 24 hours and respite from “caring” didn’t last long. In that time he continued to deteriorate, had another hospital admission, we had a really painful 2 hour MDT meeting to discuss CHC funding three days before he died (the outcome of the meeting being that the recommendation to the panel would be as suitable for NHS funding but that a separate application should be made on the fast track route because there wasn’t much time left), and finally in the last week fighting for pain medication to be I given to him when he could no longer take his usual ones as apparently only his family could see he was in pain from his facial expressions, agitation and body language. He was finally given morphine 7 hours before he died. The last year of his life is definitely not what dad (or any of us would want in our old age). Current emotions anger and sadness but glad (if that is the right word) that he is finally at peace.
@AliceUnderground….so sorry to hear your sad news. It’s so wrong that we have to fight for everything to be done as it should be! Glad dad is finally at peace and not suffering anymore.