For the last six weeks I’ve spent every single day listening to the grumbles of Blokey. Sometimes it breaks my heart, and sometimes I just want to grab him by shoulders and shake something (sense?) into him. During this six weeks I don’t think either of us have had a full nights sleep, which is partly due to the whirring/alarming of the peritoneal dialysis machine and partly because we’re worried about it.
This is Blokey’s second attempt at peritoneal dialysis. His first attempt failed miserably because the catheter wasn’t placed properly and so had problems draining fluid. Following its removal, and the insertion of a new catheter, he once again began PD.
And I wish he hadn’t.
I feel very selfish. I also feel as though I’m betraying him somehow. He really wants PD to work. He wants the freedom that it offers him. Instead of going to the hospital (he has to go to one further away from home because our local hospital doesn’t offer twilight dialysis and he works full-time) three evenings a week, he can come straight home, do a manual exchange and then hook himself up overnight.
It sounds ideal. But it isn’t. Not for me, anyway. For a start it isn’t working. The exchange he does when he gets in from work should take a maximum of thirty minutes, but it takes about an hour because it’s draining so slowly. Then overnight we should just let the machine do its stuff, but it isn’t relieving him of the required amount of fluid. Since being on PD he’s had countless tests, a couple of x-rays and even two haemodialysis sessions to get the excess fluid off him. He’s currently 6kg over his dry weight, and he barely drinks. His levels aren’t right either, but he appears to be fine. The doctor wasn’t even worried about the excess fluid he was carrying because he was ‘carrying it well’, whatever that means.
Every day is a constant struggle, with Blokey either nearly in tears, or displaying anger because he thinks that the hospital are washing their hands of him/fed up with him.
And I just don’t know what to say to him.
Even if the PD were working, I think I would prefer him to be on HD …
I now consider myself a ‘caregiver’ but that was a term I never even thought about using whilst he was on haemo. Maybe because with HD the whole dialysis process was hidden from me; it all took place away from home and I didn’t have to come to terms with it. Now I feel as though I am very much involved in the dialysis he receives. I was always interested in it, and I always listened to him when he spoke about what went on and who said what, but now it’s very much in my face.
Boxes! My house is breeding them. I would like to be overdramatic and proclaim something along the lines of, ‘they’re everywhere!’ but that would be a lie. They actually all live in either the shed (given to us free of charge by the NHS) or in the cupboard under the stairs. That’s our weekend job … shifting a weeks worth of boxes from garden shed to cupboard. It just feels as though they’re everywhere. And they all have to be broken down and put out for recycling. Not to mention the plastic which keeps all the bags sterile. I’m not that house proud, but I can’t stand mess. Boxes = Mess.
Then there’s the toilet issue. We only have the one loo and our bedroom is along the hall rather than right next door to it. So we have to have a tube trailing from the bedroom, along the landing and into the toilet. Ever since Blokey forgot to put the tube into the toilet I’ve chosen to stay up till he goes to bed so that I can make sure the fluid is going to drain into the loo and not all over the floor. The one time he forgot could have been worse; he remembered within minutes so there was probably only a litre of belly-fluid over the floor which was far better than waking up in the morning to discover maybe 8 plus litres soaking through the ceiling. One day it will happen, I’m sure! This also means that having people to stay is uncomfortable, mostly because who wants to visit someone and pee into their loo whilst they’re draining fluid into it, but also because someone might trip over the tube and fall down the stairs (I’m waiting for that to happen to me).
Which brings us to the question of going away. On HD we can go away for weekends without worrying about taking anything other than his medication. Blokey does did HD on M/W/F evenings so last summer we had a couple of nice relaxing weekends away. But on PD it would mean lugging his machine (which is heavy) and however many boxes of fluid, plus the medical waste bags, cartridges, clips, extension tubes, proper hospital soap and wipes, and all the other little necessities that make PD work.
I just think that if Blokey were back on haemodialysis life would be much calmer. Perhaps it wouldn’t be such an issue for me if the PD were working and he was happy. But it’s the fact that he’s unhappy which makes all the above seem so HUGE in my head. It’s getting to the point now where I’ve started to make snappy-snide comments whenever he gets negative about it, and I really hate the Me that I am at those moments in time. I don’t ever want him to feel that he’s a burden to me.
I just want Blokey to be happy, and however much he does hate those 3 nights a week hooked up on HD at the hospital, he was far happier then than he is now.