My husband has been fitted with a permanent catheter and is still in hospital awaiting a care package for home (he also has other health issues including cancer) but this is taking so long that I feel I have to try to work with this myself. One of the things I have been pondering is whether or not we can still sleep in the same bed. I’m afraid that if I turn abruptly I may dislodge the catheter or lie on it and block the tube (in the past my husband has complained that I toss and turn endlessly and he can’t get to sleep).
Can anyone please advise me as to how they manage this. It’s probably only the first of many questions I am likely to ask!
If you have a good sized bedroom, this might be the time to change to twin beds. Then you can fidget and he can sleep! the catheter will probably be fixed to a night bag placed on the floor by his bed at night (that’s what’s happened to me immediately post op).
Has anyone told you that you cannot be forced to care for him?
How advanced is the cancer?
How much help does he need for daily things like washing, dressing, bathing?
Can he get in and out of bed easily, or does he now need an adjustable hospital bed - if he needs one it will be arranged on loan, for free?
Make a list of everything you want to ask us, and also ask the hospital. He should have one “key” nurse who is responsible for him, often written next to the patient’s name above the bed. If you haven’t seen her yet, insist on doing so. Have you spoken to the consultant?
I’m a great believer in knowing everything so that I don’t get any shocks, however bad the news is. Then I can deal withit. Others want to bury their heads in the sand!
Has anyone mentioned NHS Continuing Healthcare to you?
This is a issue which is worth discussing with the urologist if you have one and the cancer team too. Make sure to also find out if you are eligible for NHS continuing healthcare or not as well. Have you applied for benefits yet? The two main most important ones to claim are employment support allowance and personal independence payment. Citizen’s Advice can assist you with the forms. Give them a call on Monday asking to chat with a benefits advisor or email them tomorrow. Alternatively you can go to your local office.
Jot down things to mention at your next appointment.
When was the last me time opportunity? Me time is crucial for all unpaid carers. Even if it is spent taking care of yourself that still counts.
Thank you all for your replies. It’s uplifting to know that someone is listening to your fears and concerns no matter how trivial they may seem to others. I think it’ll have to be separate bedrooms as we have only a fairly small bungalow but at least everything is on one level. I appreciate all your advice but as you are aware, the NHS is very short staffed and its not easy to find a doctor or nurse who has the time to speak to me. I’m trying to remain firm about not taking him home without a care package in place but he has been in hospital now for 4 weeks and he wants home and the nursing staff are putting a little pressure on me to comply. I feel so guilty at leaving him there.
His cancer is pretty advanced (palliative treatment only and inoperable). The nodes have spread to his lungs and the primary site (in his sino-nasal cavity) will start to re-grow but will definitely happen sooner rather than later. The oncologist and specialist staff in the cancer centre have been terrific and so caring and helpful. We have a review appointment there next week and he will be taken to that by ambulance from his current ward. Maybe we’ll get some more answers then.