Peg Line Problem

Share your ideas about the practical side of caring.
Hi Guys

i just joined the site and thank god this site is here. also appologies if im putting this in the wrong section

ok so my partner is carer for her brother and she just called me in a right state so i wondered if anyone can give some advice

her Brother has had a peg line since november and its how he gets all his food and medicine. He has had nothing but problems with it blocking, falling out, leaking, etc

So last thursday we were told they were not going to go ahead whith chemo and his life expectancy was not good, maybe 2 months, obviously were devastated. That same night we ended up at A&E as the peg line fell out. They put a new one in and its leaking like crazy. My partner is constantly changing the dressing where the peg line goes into his tummy and changing his t-shirt because its wet from the leaking.

The doctor told my partner today that there was nothing they could do. My partners response was to question the fact they seemed to be willing to let him starve to death and the doctors was reply was basically that we had to understand he didnt have long to live. Worth pointing out that her brother is walking, talking, etc, still has quality of life.

Just wondered if anyone has any suggestions. Is there anyone we could complain to maybe who would respond quickly. Time is obviously of the escence here
thanks
John
He needs to go to a nursing home where there are trained medical staff 24/7, or hospital. Has anyone mentioned NHS Continuing Healthcare to you, there is a special Fast Track system which the GP should trigger.
This isn't something I have any experience of, but I do know that if you go to the Macmillan Cancer community forum, there will be a good amount of info there for those cancer patiients who need a PEG line, and that may be helpful to you?

Also, try the sites that are specifically for the type of cancer your BIL has, again, probably a lot of info there. Sadly, I dare say your problem is not that uncommon.

Although, obviously, nuturition is essential, it might be possible to receive it via an intravenous line - however, I believe that that requires a nurse in constant attentdence, so saldy indicating a nursing home. Or, in the circumstances, a hospice?

And do contat your local hospice anyway - again, they should have practical experience of end-of-life/with PEG (and end of life is not necessarily 'imminent', just, sadlyi, terminal)I( My local hospice was brilliant for end-of-life at home care for my alte husband)

This is a dreadfully difficult time, and I do hope a solution can be found, to give your BIL as much good QoL as can be at this stage.
Hi Guys

thankyou so much for the replies. My brother in law is very clear on the fact that he wants to be at home with us for what little time he has left, as opposed to in a hospital, care home or hospice. Also worth saying my Partner was a proffessional carer before she gave up her job to care for her brother and she is doing an amazing job.

going to check out the cancer care websites

thanks again

john
In that case he needs "Hospice at Home" service, or someone funded by NHS Continuing Healtcare, care provided at home. However wonderful your partner is, one person can't provide round the clock care.
I would definitely agree - hospice at home is the way to go now. It worked very, very well for my husband, though he only survived a few weeks once out of hospital. I was SO glad he did not die in hospital, but in his own bed, in his own home.

Not sure with your BIL, but all the pain was controlled (very well) by a syringe driver - a needle feeds into his arm subcutaneously, dripping in the painkiller and any other meds, which come from a phial in a little box that lay under the pillow. Seemed to work very well. The nurse monitored the driver, ie, refilled the phial.

Please make the very, very most of this extremely precious time. The memory will last for ever -
My sister in law was admitted to a local hospice and they were brilliant, nothing was too much trouble and they understood all about her wanting to die at home. They were so upbeat with her she was much happier when they took over the caring.
She came home about a fortnight before she died and was looked after by the hospice nurses and Macmillans who organised her pain relief and feeding tube and all the bathing and even set her hair and gave her manicures. Wonderful people.
It sounds as though your brother I L is capable of stating his own views, so I think you should give his all the options and allow him to make his own decision - at the same time telling him plainly that none of you is capable of coping with his peg, he has to face up to that fact.
What a terrible situation for you all. All good wishes.
HI Barbara

just a quick line to say thankyou for the reply. yes my brother in law has made it clear he wants to be at home and we are happy to respect that and keep him there

thanks again

john
I think you should be careful what you say, i.e. "you will keep him home as long as possible" because you cannot predict what will happen. For example if you or your partner became unexpectedly ill; or he needed specialist pain relief only available elsewhere.
Don't make promises you might not be able to keep.