Hi Everyone,
This is my first post although I’ve be reading all your stories for a while now and feel part of the group so if I ramble please bare with me!
I’m wondering if anyone is a sole carer and how they cope with the worry of the person they are caring for illness?
So my mum died suddenly 10 years ago when I was 30 from lung cancer and since then I’ve been looking after my dad. Fast forward to now and he has arthritis, diabetes, heart failure, pulmonary embolism and terminal liver cancer. He was diagnosed 2 and a half years ago with advanced liver cancer and in that time it’s been full on with Christies care, stays in hospital, 2 major surgeries, doctors appointments and trips to A and E. It’s not so much taking him to places it’s the worry and trauma of his illnesses and what is going to happen to him next that goes with it I’m struggling with and it frightens me. It’s a constant round of tests and scans and waiting for the results. Will it be bad news again this time / how long does he have left / is it the end? There is no other family or siblings to help shoulder the worry although my partner is fantastic!
Last weekend was a call early Sunday morning for a trip to A and E. He couldn’t breathe and he waited part of the night for me to wake up so I could take him to A and E and for all I knew he could have had a heart attack in my car. It turned out to be a blood clot. It has been like this since his diagnosis with one thing after the other. Other A and E visits because he diabetes was not under control and I found him slumped with his eyes rolling in his head, kidney and toilet problems and chest and tummy pains.
He is now extremely thin and the tumour has grown we have put a care plan in place for when he cant get out of bed anymore and Macmillan nurses will help medical care. I do all the practical stuff and visits to appointments and he talks to me each night after work about his problems and how he feels. I’m just kind of waiting for it to get really bad now but I’m at the point where I’ve got nothing left to give. I am an empty shell just kind of existing really. I’ve got to go and see him today I’ve no idea what state he’s in as last night he said he felt so exhausted on the couch maybe because of the cancer of maybe because of the pulmonary embolism.
Me and my partner moved in with him a while ago and that really didn’t work so we moved out again and I’m doing a part time job I hate at the minute just so I can have time to sort dad while also trying to stay sane. I have severe anxiety that affects each day and Im numbing myself with beta blocker and diazepam because I don’t sleep. I’ve also had counselling which has helped me process pre-grief and guilt and sorrow that he has cancer. I did have a problem with the booze but that’s now sorted! So each day I’m either a zombie and my nerves are shot to bits.
how does everyone cope please? Does anyone else feel like this? My personality ranges from full on practical wise / we can do this / what does he need today, to I’m ready to give up and I can’t carry on doing this which I won’t do because I have no choice but to carry on doing what I’m doing. I beat myself up some days as I feel like I should be like Mary Poppins with a smile on my face and remedies in my bag! Does anyone have any advice as to where I can find some strength or any practical tips to manage my days?
thanks very much for reading and hope I haven’t rambled on too much with my problems!
LoubyLou Xx
Hi both,
It can be such a challenge when we care and often we hear "I have to be strong" - really easy words to say, rather more difficult to deliver.
Sometimes what can really help in a needs assessment for the patient and a carers assessment for us. It can help to highlight the support that is available so that everyone has the support they need. I know in the past I came close to breaking - or possibly broke but kind people picked me up, dusted me down and here we go again.
Often people talk of being selfish, I think to be a good carer we need to recognize the times when we need to make space in our lives and sometimes too when we might be too caring and practice a bit of tough love - what can our loved ones do maybe they had a bit of confidence that we are there for backup.
<<hugs>>
Steve
