"It’s the little things that can affect you most when you are a carer for someone with a chronic illness.
"I work as a psychotherapeutic counsellor and am used to supporting others. But I have learned through our experience of CKD how the gruelling schedule of daily care can take its toll on the carer.
"Small details take over your life. The health service is under-resourced and over-stretched, and can tend to focus on the patient rather than the supporting ‘home team’, who are every bit as important.
"When my husband Geoff was diagnosed with CKD in June 2016, we were initially stunned by the diagnosis. An optician identified bleeding behind the retina and referred him to our GP. Our GP then confirmed that Geoff’s kidney function was down to 20%. Now we understood Geoff’s increasing tiredness and regular chest infections over the winter months. We limped along until September that year when he finally had a peritoneal catheter inserted. At this point his kidney function was just 6%. Geoff spent his days resting on the sofa – not in any discomfort, but quietly ‘slipping away’, or so it seemed.
"However, the catheter insertion gave us new hope. As I was still working, friends kindly helped transport Geoff to and from Norfolk and Norwich hospital. Health personnel came to assess the premises for the automated peritoneal dialysis (APD) machine, and our two sons lugged the massive boxes of dialysis fluid (two bags a night) up our two flights of stairs in our tiny thatched cottage, every evening. I spent many hours on the phone in the middle of the night to the 24-hour help line, and frequently slept in my workroom as the alarms woke me up constantly. Stopping work was not an option, as I am self-employed and we could not pay the mortgage without the income.
I could feel my days turning into a constant cycle of clearing up used dialysis bags and living in what was rapidly beginning to resemble a badly run nursing home.
"We got to a point where the nurses suggested we go on to the day-time bags instead. This at least relieved us of the disturbed nights. But the presence of discarded bags of dialysis fluid, left around the living room during the day, began to get to me. One day I had a melt down at the hospital. I could feel my days turning into a constant cycle of clearing up used dialysis bags and living in what was rapidly beginning to resemble a badly run nursing home. Geoff, who had been quite passive about what was happening to him up to this point, suddenly recognised that I was not coping.
"This realisation had a profound effect on him and he began to take responsibility for his own care.
"It took us about four months to get used to the new routine of daytime bags. At this point it was suggested that Geoff should go on to the transplant waiting list. Talking this through with the consultant, we were given so many warnings about what could potentially go wrong that we were puzzled when he said, 'So you are eligible. Isn’t that great! Let’s go ahead.' We mulled it over for a while and decided to wait for six months.
"Geoff’s transplant took place in April 2018. But alas, it failed just under a year later. Between February and July 2019 Geoff spent a total of 12 weeks in hospital with a variety of complications. Six months on (currently on haemodialysis), he is now awaiting surgery for the re-insertion of a peritoneal catheter.
"One thing that helped me during this difficult time was writing poetry. The range of emotions that you feel as a carer needs to be expressed and we sometimes find it difficult to admit just how angry we are at what life has dealt us. Poetry enabled me to express these feelings.
"As a mother of three, I well remember how maternal instincts develop when the first baby comes along – the slightest sound wakes you up and you are intimately attuned to every signal in order to care for that baby and keep them safe. For me, this feeling of hyper-vigilance is once again with me all the time.
"If any of this resonates with you, I leave you with a question…are you looking after yourself, as well as you look after your loved one?
"I am so thankful for all the support that I have had from local friends and from family members (many of whom are not local). I have been able to keep working, and find that focusing on the needs of others completely outside of my own family health problems, is also helpful. If you are a carer, what do you feel that you need in the way of support? It might be time out to walk, spend time on a favourite hobby, or simply find a listening ear. When you are ‘in it for the long haul’ your own self-care must become a part of your care plan for your loved one.
"Think about what would make your life brighter and see what small steps you can take today."
If you are a carer and would like to talk to someone about any of the issues raised in this article, Kidney Care UK have trained counsellors who may be able to help. Visit our free renal counselling page or call us on 01420 541424 to make an appointment
For expert advice, information and support for carers, visit Carers UK
This article was first published in May 2020 in issue 9 of our Kidney Matters magazine