I’ve been sole carer for my husband for almost a decade, since he was diagnosed with Stage IV COPD. He has a lot of co-morbidities, he needs input from me from 6am until 10pm daily, and I’m hyper-aware of him even at night, although we haven’t shared a bedroom for years. He’s now developed paroxysmal AF, which is putting him into heart failure.
My GP surgery is very difficult to contact and appointments go very quickly. 111 doctors don’t come out; they just send ambulances. Hospitals see ‘COPD’, assume a chest infection and prescribe antibiotics although they haven’t found any evidence of infection! Community nurses are sympathetic but can’t prescribe.
I can’t leave him for more than an hour at a time, and then only if I really have to, because his condition can deteriorate so quickly. I get no respite, and I’m knackered.
I no longer feel I’m helping him to have a decent life, and I have only this - existence. I’m just fire-fighting all the time to try to stop him having a crisis. I feel very alone. Is there anyone else out there feeling the same, and how can we support each other?
Hello Karin
I think I know how you feel and you have my every sympathy, genuinely. I wish I could offer you some advice but I can’t.
I care for my mother and although she suffers from Alzheimer’s disease she has retained enough awareness regarding our situation that I can understand her guilt.
I know the fear you must feel throughout the night, on edge as you wait for any unusual sound. Like you I feel how little I’m offering my mum now. This really is a very difficult time. Still, please realise you’re not alone.
Take care, David
You are most certainly not alone Karin.
I am in a similar position and get very little respite other than the occasional hour when the carers are here. Not much can be achieved in that time but it is better than nothing i guess.