Hi everyone. Have never before joined a forum but feel I need to at least find some solidarity. Will try to keep this brief if I can. I am an only child to a single mum - there is no other family other than my husband and teenage son. I have an amazing bond with my mum - it’s really been the two of us against the world and we are close beyond words, and dragged ourselves through life’s traumas.
She’s had lots of health issues over the last 5 years (including 7 vertebral fractures due to osteoporosis) but has remained fiercely independent throughout until August 24 when her health really declined , 2 weeks before Xmas we received the devastating news that she had lung cancer with liver mets and there was nothing they could do - by this stage she weighed 5stone and was in severe pain. Also devastating was the fact that she had been under the care of a respiratory consultant but they had missed a 10mm lung tumour on a CT scan in February!
She was living 100miles away from me but I’ve moved her down here to live with us and am now caring for her 24/7. We’re receiving hospice at home care but I’m struggling - my mum is really poorly (bowels and bladder causing main problems) and we’re spending most of the day in the bathroom - I have to be with her for her to move around. We were told that she would be pain free and that she wouldn’t lose her dignity, but that’s not how it is. I’m spending most of the day on the phone to district nurses, hospice, GP and none of this is joined up……..I’m trying so so hard to give her the death she deserves but feel like my time is spent being her PA in order to help her, as well as attending to her physical needs. Is this how it is when you decide to care for someone at home? Are you on your own apart from kind words and advice? Sorry, I’m struggling right now …….as an example - catheter fitted on Friday evening due to fluid retention caused by constipation. No bags left with us so had to get us both up night to empty it. Next day told to visit local hospital to get some but thankfully a kind district nurse delivered a few. Then a call saying to get GP to prescribe them. 2 days later GP says can’t as need to be contacted by district nurses with spec of bags so contact them again - fortunately I found them on Amazon so have them now but if I hadn’t then I would have to get up at 3am ( and disturb my mum!) as would have been without. Is this normal? If it is, fine, but I am absolutely exhausted looking after her physical needs and this is sending me over the edge. When we had our first meeting at the hospice they basically said there’s no way you’ll get a hospice bed so it’s either hospice at home or a care home but that the support would be there. Had a call with hospice nurse yesterday (who advised to speak to GP) and she’ll call next week to see how we’re getting on. My mum is getting worse every day.
I know that the NHS is in a state and every palliative/district nurse has been an absolute angel and I appreciate that hospices are in crisis but how do I keep on keeping on right now. I am ok, but emotionally and physically i am exhausted.
