“Roger does his dialysis at home which works well for us in terms of feeling more in control and having more flexibility. It also helps ‘us’ as I feel more like I am part of a team…but in some ways it’s a bit like bringing home a new baby, awesome responsibility combined with relentless routine (which can get you down). When we first started down the road that led to him 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 help with his dialysis. Obviously everyone is different and every situation is different too but the nurse who visited us at home to confirm we’d be ok to do home dialysis was quite subtle and understated in terms of how I would or could help.”
I want to be able to do as much as I can for my partner; we’ve been married for 38 years and sometimes I feel like it’s my blood whizzing round the machine as well.
“It is difficult to express feelings of stress when you are the carer, or partner, of a kidney patient. You feel just as constrained by their dialysis but with the guilt that you are not the one whose kidney’s don’t work. I found work colleagues a great source of support, they were close enough to care but not as involved as family members. It’s also good to know that there are other options; 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 my partner, Roger, to dialyse in hospital. It’s really good to know that that’s available if needed – and that she thought to make sure I knew.
“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. My main fear at the beginning turned out not to be a problem. I’m very squeamish and have been known to faint so I 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 it! Ultimately I want to be able to do as much as I can for my partner; we’ve been married for 38 years and sometimes I feel like it’s my blood whizzing round the machine as well.”
We believe that no-one should have to face kidney disease alone. If you are a friend, family member or carer of someone with kidney disease we can help:
- Counselling – our counselling service is available to kidney patients and their friends and family
- Advocacy – our Advocacy team is here to speak up for patients and to make sure their rights are respected. If you feel you need support in navigating the benefits system or the NHS you can contact us
- Grants – kidney disease can impact on the whole family, our patient grants can help make life a little bit easier
- Information – if you feel you need more information about kidney disease and different treatments you can find this here
- Social media – we have a closed group on Facebook where you can meet other kidney patients and their partners/carers and that provides comfort and support.