It is difficult to express feelings of stress as the carer (not a good word, partner better?) of a patient (again not a good word) on dialysis. For me it’s more of an internal pressure than societal expectation – I might get fed up with the drudgery of the dialysis routine and all that goes with it but then feel guilty that I’m not the one whose kidneys don’t work. (I wonder if there’s a gender element to this?).
Everyone’s experiences are different, though. Thinking about ours, these seem to me to be relevant factors:
- Whether doing dialysis at home. Not for everyone. Roger wanted to do it at home right from the start and that’s what we’ve done. It gives you greater feeling of control over the whole process (important) as well as flexibility and feeling that you’re part of the team. But also responsibility – it’s a bit like bringing home a new baby, awesome responsibility combined with relentless routine/work (which can get you down). Apparently it is possible to dialyse on your own but the way we’re set up means I need to be involved.
- How ill the person on dialysis is. Roger’s never been that ill, his kidneys have been damaged (by a build up of fluid due to prostate cancer) so hasn’t experienced the horrors that a lot of people in the Facebook group have. Having said that, he does get tired and it can be difficult knowing how far to push him for days out and weekends away!
- Whether transplant is an option. Being on dialysis as a “temporary” measure till you get a transplant must, I would think, give you a different attitude to the process than if you have to accept that it’s a permanent part of your life – as it is for us. (Roger’s prostate cancer is well under control and not a problem but it rules out a transplant.)
- Age. We’re in our 60’s, Roger had effectively retired when he was diagnosed. Very different if you’re a lot younger, I would think.
- Financial circumstances. We’re very, very fortunate that we’re not battling DWP for benefits or struggling to hold down jobs. I was working full time when Roger was diagnosed, became redundant not long after and at the time he started dialysis was working part time from home – which fitted in perfectly with supporting him on dialysis.
- Whether going on dialysis is as the result of a medical emergency and happens very suddenly or whether you have time to prepare. In our case there was a period of about 4 years when we knew that Roger’s kidneys would deteriorate to the point where dialysis would be inevitable. So there was plenty of time to get a fistula established, attend the information sessions arranged by the hospital and get used to the idea.
- Support from health professionals. On the whole, our experience has been very good. We spent several weeks dialysing in a special home training unit with the emphasis on us staying there until we were completely ready to have the machine etc installed at home. We have a fantastic community nurse who visits regularly and is on hand when needed, there’s also good support from technicians with the machine.
My experience
When we first started down the road that led to Roger going on dialysis, it puzzled me that no-one really explained what would be expected of me, nor asked me whether I’d be prepared to do it. The nurse who visited us at home to assess whether we’d be OK for dialysis at home did refer to me helping but it was quite subtle and fairly understated! Now that we’re settled into home HD, I understand why it’s not discussed a lot – everyone’s different and every couple must have different ways of coping. I found the NHS report Home Dialysis Who Cares For The Carer really helpful, it was a relief to read about other carers’ experiences and that I wasn’t the only one with “but what about me” feelings. It also made me aware of how good our training and support was and is.
I found learning what we needed to know about the dialysis process harder than I’d expected, I think part of my brain didn’t want to know. It’s often compared to learning to drive a car – and it took me a few goes to pass my driving test! Knowing that mistakes could have very serious consequences adds to the stress – which gets less with time and experience but is always there.
My main fear at the beginning turned out not to be a problem. I’m very squeamish and have been known to faint (e.g. at the dentist, when having a blood sample taken etc., etc.) and wasn’t sure whether I’d be able to handle the needles/blood aspect. Much to my surprise I was OK, I think there was so much to learn it took my mind off other aspects. Roger does the actual needle insertion, which, of course, is a big help.
We’ve been together for 40 years and married for 38. During that time, inevitably, you build up little patterns of dependency, routines etc. Working together on dialysis means changes – and, especially at the beginning, tolerating the mistakes that are part of the learning process. Fortunately, we do work together well, and most of the time, just get on with it (sometimes I feel like it’s my blood whizzing around the machine as well). But adjusting to the changes to your relationship that dialysis brings could be potentially stressful.
I was glad to have part-time work, which was largely done from home when we started home HD. We did have a number of problems when we first started, which meant I sometimes had to cancel meetings at short notice (somewhat frustrating). Everyone I worked with was very understanding – in fact, I found work colleagues a great source of support, they were close enough to care but not as involved as family members. Now that the work has come to an end, I must admit I do find the dialysis routine more irksome. It’s important for the dialysis partner to have outside interests.
There is counselling support available – and I know that I could arrange for a break if I needed one. One of the nurses in the training unit made a point of saying that I wasn’t to feel alone and that if ever I needed a break, they would arrange for Roger to dialyse in the hospital. It’s really good to know that that’s available if needed – and that she thought to make sure I knew.
