Lost my Father-in-law yesterday, 24th June 2012

I've not posted on here very much, but looked often. Shed more than a few tears with you all along the way. Maybe sharing this story will help someone.

My father-in-law was a very fit and healthy 82 year old, a fisherman all his life out of Mallaig on the west coast of Scotland. He was at the herring for much of his life, then when that collapsed went shark-fishing, and latterly for prawns (scampi). When he retired from the sea, he was making and mending nets and was legendary, fishermen from all up the West Coast would come for one of his nets. Even his designs, copied faithfully, were missing some vital spark and never matched the catching ability of the nets he made himself. He was still working at the nets until last summer.

He was diagnosed with PC in November last year. He'd been complaining of indigestion-like symptoms for about a year, and had eventually, following an endoscopic investigation, been diagnosed with a hiatus hernia, an ultrasound scan having previously failed to pick up any problem. We were convinced this was the cause, but he was loosing his appetite and was also loosing weight alarmingly. As part of the next stage of investigation he was sent for a CT scan, just to rule out anything else. That was when they found the PC, by this time already too far advanced for treatment.

The news devastated us, my wife (his daughter) and her mother, but he seemed very accepting. The GP took a back seat from then on, and our main help was the MacMillan Nurse, whom he took to like the proverbial duck to water! He was started on fentanyl patches, co-codamol and cyclazine for the dyspepsia. They said to make the most of Christmas and New Year because we probably wont have long after that. He began to get ill over Christmas, and was bed-bound by New Year. We feared the worst, amazed at how quickly it had progressed. Turned out to be constipation! Once the co-codamol was removed, that cleared and he was back to normal, although very much thinner than before, and still with lack of appetite. He was started on steroids to try and boost his appetite.

Things went along until March, when he started getting jaundiced. A second CT scan was carried out and we had the great news that the tumour had hardly grown at all! With his condition stabilised, we started to dare to hope for a longer time with him. But of course the jaundice meant that the tumour had grown and was occluding the pancreatic duct. He was not admitted for stenting for a further 3 weeks, when the MacMillan Nurse returned form her Easter break, she was furious that he hadn't been in. Things moved pretty quickly after that!

I found out about creon from this forum, nobody had mentioned it to us , but from my first asking the nurse about it, the next day he was taking it. He was very particular about his tablets, and managed them all very efficiently. He was always making lists of what to take, when to take it, and even where he got them from, the Clinic or the Pharmacy. Possibly this was one of the few things he still had charge over. Whilst we think he really thought that if he kept taking exactly what he should, they'd be a cure and he'd be better, he didn't seem to get the idea that the creon wasn't a drug and he could take as much as he liked!

Stenting worked well, all his blood counts were returning to normal and he was loosing the yellow colour, but he continued to loose weight and was gradually becoming more and more tired. Initially he had terrible diarrhoea but as all the bile was flushed through, together with increasing the creon, this eased off.

That was the pattern until 4 weeks ago, still active, still pottering about, still cheerful, although spending more and more time in bed, due to tiredness. Although we'd been having regular visits from the MacMillan Nurse, about this time his wife finally relented and accepted help with his personal care from the Community Nurses. He'd fallen one night whilst going to the toilet and she had struggled to get him up and back into bed. She's also 83! It was about 3 weeks ago that he got to the stage of being too tired to get up at all, and it was soon after that that I noticed his abdomen was swollen. Again through this forum I found out about ascites, never having heard of it before.

I work for the Ambulance Service, and whilst we give all our patients the best care we can, to get the call to take one of my own in, it made me realise how little that really is. He was admitted 13 days ago, on Wednesday 13th June. We got him home on the Friday, after having 4 litres drained. Blood tests had shown that his sodium balance was way too low, and that he should be on a limited fluid intake of just 750mls a day. Although in much less discomfort, he seemed much weaker, unable to get out of bed, or even stand without help. The Community Nurses supplied a commode, which he used, and used just as a chair, even though it was on wheels he didn't want to sit in the living room, he preferred to be back in bed. They also supplied us with a hospital bed, which could be raised and lowered, and an airflow mattress. By this stage he was eating very little, and the 750mls fluid was actually a target rather than a limit...

However he got stronger again! On the Sunday, he was sitting on the chair while we changed the bed. When I said I'd help him back into bed, he stood himself up and shuffled over to the bed unaided. That seems so insignificant a thing to do, but it was a real surprise, and again we dared to hope for an improvement. Our son, his grandson, was going away on a school trip for 4 days, so on the Monday evening we all went up and they both had a good natter about cars, and racing. I'm really glad they did, for it wasn't to last.

On Wednesday morning we were called up at about 3.30am. He was in pain, moaning and moving about in the bed. We called the nurses and they came straight away, even at that time in the morning, and gave him a shot of sc diamorphine and midazolam. He was saying that he wanted the drainage again. He slept again. The GP was up later that day and she was of the view that he wasn't strong enough to cope with the proceedure again, possibly not even strong enough to cope with the ambulance journey.

Quite early on we'd made the decision, although it wasn't really a decision, more of a statement, that we wanted him to stay at home. The GP asked again if that was what we all wanted, as she also thought that if he was admitted, they might not let him out again. We didn't realise just then, but that was the start of the end. She prescribed a syringepump with morphine and midazolam, but to stop all the other medication. The sedative had its effect, he was asleep all the time.

That afternoon I was reading a book to him, even though I was getting no response. It was late afternoon and my wife came in and said, to him, that we were going home to get some tea. I took his hand and said I was going as well, to feed the dog. He suddenly opened his eyes. looked at me and said Oh, you're here as well are you?. Maybe the book was really boring and he was glad to get rid of me!

He was no longer able to eat and could only just sip water and the ensure drink through a straw. The Community Nurses were coming in 4 times a day by this time

Then we, the whole family, realised it was time for a constant watch. Every hour we moistened his lips and mouth with a sponge lollipop.

Friday morning he was muttering something. My wife asked him

What is it Dad?

I'm in Hawaii!

Hawaii? What's it like?

Palm trees.

Any coconuts?

Yes coconuts

Are you by the water?

Warm water, blue blue water.

Is there anybody else there?

Millions of people

Anybody you know?

(pause) Mm No.

Can we come there too?

Oh no, no, not yet.

That was the last he said.

We continued the round the clock watch, moistening his lips regularly. Sometimes he would moan or grunt in response to a question, but mostly there was just nothing. The nurses were amazed when we'd done the third night's watch. His morphine dose was increased a further twice.

On Sunday night my wife was up with him, with her brother and sisters as well. At about 10.40 she'd phoned down for me to drive up and get her as they were doing the night shift. His grandson was home from his trip and came up with me. He's very mature and after initially not wanting to, he was keen to be with his grandad. He went into the room and took his grandad's hand, I went out again.

When I went back in, his breathing had stopped.

All the pain had just dropped from his face, we were able to get his wife and other 2 daughters in as he took his last gasps, but there was no pulse.

Such a strong man, he'd fought on much longer than he should have. He was always uncomplaining, even with so much pain, and always, always thinking of others, even to the end. The nurses said how gracious he was, when he still could he'd always thank them, even for the littlest things like a drink of tea. They shared our tears then again during today.

Even though he wasn't my blood relation, he was just what the title says, a father, and I loved him as a father. He'll be very sadly missed, by the whole community as well as his family.

That's my second, and last, post on this forum. Thank you all so very much for the support you didn't even know you were giving. I hope this may help someone else, as it's helped me to write it.

Goodnight.

Dear David, please accept my sincere condolences for the sad loss of your dear Father in law. My heart, my tears, my love and my prayers are with you and your lovely family at this awful time.

Take comfort in the knowledge that your father in law is now free of pain, at peace, in a happy place.

Take care

Karen

Dear David,

Thank you so much for taking the time to write this wonderful post at this difficult time in your life. I am glad the website has helped you, but furious that this tragic illness is so poorly diagnosed and treated.

My sincere condolences to you and your family.

SueF

dear david and family, sorry to hear that an obviously much loved man has taken his rest.

thank you for your kind words about us x

i really do wish you all peace and comfort.

love laura xx

Dear David,

Thank you so much for your post about your father (in law). The love, care and concern in your writing is very, very evident and must have been hard for you to do. It is clear that he was loved enormously, and a very special person in so many peoples lives. I am glad that he was in Hawaii - it sounded just lovely, and a fitting place for your father to be.

I would like to offer you my personal condolences, as well as those of the charity.

Take care, and thank you again.

Jeni.

Dear David, I am very sorry to read about your much loved Father in Law. Thankyou for sharing this touching story. You are in my thoughts and prayers

Takecare Rachel x

Dear David,

I was searching in the forums for some advice or experiences of people having low sodium and your post popped up. Thank you so much for writing it. I can only hope that when the time time comes, my mum's journey is as peaceful as your father in laws. I hope that 6 months on, your family are still as strong,

Wishing you all the best,

Thank you again

Lucy x