Had a nice day yesterday - drove over to a little town in the Pennines called Hebden Bridge. It's got a medieval pack horse bridge and lots of shops. We finally got two huge wooden giraffes to go with the menagerie (horses, fish, storks) in the conservatory.
Back to mum's later this morning, I have a dental appointment first. Oh and then some guy is coming to see me about prices to recover our two sofas... I've had them about 13 years but they're still in pretty good shape except that the covers are now stained beyond the point where cleaning them does the job. So I thought I'd investigate the cost of re-covering the fabric rather than buy new sofas. This isn't something I am planning to have done soon, but Roy is talking about redecorating the living room for Christmas so if we're changing our colour scheme then, might as well sort the sofas out at the same time.
Just spent a lovely afternoon watching a Barry Manilow at the Vegas Hilton DVD with my Dad. I love Barry Manilow and I have to say I was impressed at how strong his voice still is. I'd love to go to see that show live.
Monday 30 April 2007
Saturday 28 April 2007
Saturday 28th April
I'm having a rather nice weekend... this morning I went into Leeds. I haven't been anywhere near proper shops in such a long time! I must say I got bored quite quickly... I guess also knowing that I have no monthly pay to replace any spending I did was holding me back. Not like me - I must be getting sensible.
Anyway, I did buy a nice summer top which was inexpensive. The sun was shining so I got a coffee and sandwich and sat on a bench listening to a great busker for about half an hour.
Sometimes the music in the City Centre is really good - and this guy was very popular... he was getting applause and even seemed to have a few groupies hanging around him.
http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendid=102275964
After that I visited Roy's parents and now I'm back home and will be getting ready to go out to dinner soon.
From Pancreatic Cancer UK Forum:
Just a quick post to say "thanks" to Leslie for the recommendation of Final Gifts. I read this book last week, and it has really helped me a lot. At this (relatively) early stage in my dad's illness, I had been quite afraid of what was ahead.
This book has really taken some of that fear away, and prepared me better for what lies ahead. I know that not everybody will die "by the book", but there are some excellent case studies in there which have reassured me that dad can have a peaceful end to his life. It is also starting to help me think more positively about the whole experience, and ultimately my own mortality.
Anyway, I did buy a nice summer top which was inexpensive. The sun was shining so I got a coffee and sandwich and sat on a bench listening to a great busker for about half an hour.
Sometimes the music in the City Centre is really good - and this guy was very popular... he was getting applause and even seemed to have a few groupies hanging around him.
http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendid=102275964
After that I visited Roy's parents and now I'm back home and will be getting ready to go out to dinner soon.
From Pancreatic Cancer UK Forum:
Just a quick post to say "thanks" to Leslie for the recommendation of Final Gifts. I read this book last week, and it has really helped me a lot. At this (relatively) early stage in my dad's illness, I had been quite afraid of what was ahead.
This book has really taken some of that fear away, and prepared me better for what lies ahead. I know that not everybody will die "by the book", but there are some excellent case studies in there which have reassured me that dad can have a peaceful end to his life. It is also starting to help me think more positively about the whole experience, and ultimately my own mortality.
Friday 27 April 2007
Friday 27th April
Dad has always loved his food and when he started feeling poorly (end of January this year) he started to eat less as he wasn't hungry and when he did eat felt uncomfortable. He was also very constipated (which made him not want to eat much).
He was then taken in to hospital in early Feb, which was when the round of investigations leading to his PC diagnosis started. Initially they were looking into his bowel as his main sympton was constipation and distended abdomen.
Over the 6 weeks he was in hospital, he started to find that he couldn't eat any food which he needed to chew - it started with chicken, and then meat and then to the stage where he even struggled to eat soft white fish. He is wondering what caused this.
He's no appetite, but would still like to try and eat a few nice things. Currently we are giving him Fortisip drinks, plus little bits of whatever else he fancies (soup, mash and gravy, custard etc). Has this happened to anybody else? Is there a physical reason why PC patients cannot or do not like to chew? Or is it the body's way of trying to naturally decrease food intake?
Somebody did suggest that his difficulty chewing and swallowing (he struggles to take his tablets) was psychological/emotional. Dad doesn't agree with this.
Another post from PCUK:
Dad's doctor came out yesterday and also told him that whilst he's been on Fortisip for a while now, his system may not be tolerating it too well because the bowels need fibre to keep them working properly and aren't really made to cope with a liquid diet. She's suggested he try just one Fortisip drink each day, and spread out in 2 or 3 "portions". He's making a big effort to eat more proper food, but the portion sizes are so small as he can't cope with much more.
Dad was a bit quieter today (he was quite good at the start of the week, funny and mischievous almost) but has not been as bright this last day or two... not miserable or depressed (like last week), just quieter and looking more tired and ill.
I would recommend the Final Gifts book. It's very much focused on a few key areas relating to end of life, but the case studies in there are very reassuring. It has helped remove some of my fears about what is ahead.
He was then taken in to hospital in early Feb, which was when the round of investigations leading to his PC diagnosis started. Initially they were looking into his bowel as his main sympton was constipation and distended abdomen.
Over the 6 weeks he was in hospital, he started to find that he couldn't eat any food which he needed to chew - it started with chicken, and then meat and then to the stage where he even struggled to eat soft white fish. He is wondering what caused this.
He's no appetite, but would still like to try and eat a few nice things. Currently we are giving him Fortisip drinks, plus little bits of whatever else he fancies (soup, mash and gravy, custard etc). Has this happened to anybody else? Is there a physical reason why PC patients cannot or do not like to chew? Or is it the body's way of trying to naturally decrease food intake?
Somebody did suggest that his difficulty chewing and swallowing (he struggles to take his tablets) was psychological/emotional. Dad doesn't agree with this.
Another post from PCUK:
Dad's doctor came out yesterday and also told him that whilst he's been on Fortisip for a while now, his system may not be tolerating it too well because the bowels need fibre to keep them working properly and aren't really made to cope with a liquid diet. She's suggested he try just one Fortisip drink each day, and spread out in 2 or 3 "portions". He's making a big effort to eat more proper food, but the portion sizes are so small as he can't cope with much more.
Dad was a bit quieter today (he was quite good at the start of the week, funny and mischievous almost) but has not been as bright this last day or two... not miserable or depressed (like last week), just quieter and looking more tired and ill.
I would recommend the Final Gifts book. It's very much focused on a few key areas relating to end of life, but the case studies in there are very reassuring. It has helped remove some of my fears about what is ahead.
Wednesday 25 April 2007
Wednesday 25th April
Things are fine here. My dad is very upbeat this week. He has moved on to a low dose morphine drug now to make him more comfy (I don't know if it's that which is making him so happy!!???).
He doesn't have much pain (occasional ache in his low back or stomach) but his pressure sores are still bothering him (stinging and hurting) so the Doc suggested trying the morphine. It seems to be working a treat and he is also sleeping much better at night.
We're having a lovely week with him actually - lots of laughter and nice chats.
And the good news is that the District Nurse says his sores are actually starting to heal (I recommend Manuka Honey ointment for this) and they are coming tomorrow to remove the dead skin and put some kind of seaweed dressing on.
So, each week is different and this week so far has been a good one.
No idea what I'll do in the Conservatory when it gets hot (the electrican forgot to put the wiring in for a ceiling fan ). I have a small blow heater with a cool air option on it, so maybe I'll try that. In the meantime, on warm sunny days it makes a fabulous drying room for the laundry (albeit an expensive one).
From Pancreatic Cancer UK Forum:
We've dealt with the practical stuff, and we do the day to day stuff no problem - but why is the personal stuff so hard!? Like you, I start to get upset just at the thought of it, and yet I am going about day to day business without getting emotional.
I got the book that Leslie recommended today - I'm going to start reading it later. If I find any handy hints I will post them up. I think I said a few personal things to my dad in passing - i.e. when that kind of opportunity comes up in conversation, but I always end up filling up so tend to keep it brief. I don't mind if dad and I get upset - I think at times it is good to cry together, but I know there are still one or two things unsaid that I can't quite get round to. It's daft really because he's so bright at the moment it would be a perfect time. I'm going to make an effort to say at least one of them this week before I head home for the weekend.
And another one:
Wonder if it was the Fortisip drink making my dad loose, then? If your mum had a similar reaction.... mind you he was on them for a few weeks with no problem. I guess it's all part of what the disease can do to people.
I was a bit sneaky today - I asked Dad if he wanted to try some bread and butter pudding, and he said he would. So I made it with part milk/part Fortisip as I am a bit worried that his calorie intake has dropped by 1200 per day since he stopped taking them. Then I made him a cup of hot choc and used some fortisip in that... it tasted nice actually, not that I personally need the extra cals!
He's having fresh mushroom soup later so I'll sneak the last of a bottle into it. Naughty, I know, but at least he'll be getting some nutrients and calories from it, and if his bowels do go loose again then I'll have a word with his GP when she visits tomorrow. Dad only has the Fortisip Neutral so you can put it in pretty much anything where you would use milk or cream.
Yet another:
We were asked about what to do if my dad took a turn for the worst (this was a few weeks ago when he was taken back into hospital for a few days with some problems). The Consultant actually asked my dad... "if your heart stops, do you want us to put the paddles on you". My dad was a bit groggy at the time (his BP had dropped really low) but said very clear "DNR" (Do Not Resucitate). I had guessed that is what he would say, but didn't want to speak on his behalf when we were asked.
He doesn't have much pain (occasional ache in his low back or stomach) but his pressure sores are still bothering him (stinging and hurting) so the Doc suggested trying the morphine. It seems to be working a treat and he is also sleeping much better at night.
We're having a lovely week with him actually - lots of laughter and nice chats.
And the good news is that the District Nurse says his sores are actually starting to heal (I recommend Manuka Honey ointment for this) and they are coming tomorrow to remove the dead skin and put some kind of seaweed dressing on.
So, each week is different and this week so far has been a good one.
No idea what I'll do in the Conservatory when it gets hot (the electrican forgot to put the wiring in for a ceiling fan ). I have a small blow heater with a cool air option on it, so maybe I'll try that. In the meantime, on warm sunny days it makes a fabulous drying room for the laundry (albeit an expensive one).
From Pancreatic Cancer UK Forum:
We've dealt with the practical stuff, and we do the day to day stuff no problem - but why is the personal stuff so hard!? Like you, I start to get upset just at the thought of it, and yet I am going about day to day business without getting emotional.
I got the book that Leslie recommended today - I'm going to start reading it later. If I find any handy hints I will post them up. I think I said a few personal things to my dad in passing - i.e. when that kind of opportunity comes up in conversation, but I always end up filling up so tend to keep it brief. I don't mind if dad and I get upset - I think at times it is good to cry together, but I know there are still one or two things unsaid that I can't quite get round to. It's daft really because he's so bright at the moment it would be a perfect time. I'm going to make an effort to say at least one of them this week before I head home for the weekend.
And another one:
Wonder if it was the Fortisip drink making my dad loose, then? If your mum had a similar reaction.... mind you he was on them for a few weeks with no problem. I guess it's all part of what the disease can do to people.
I was a bit sneaky today - I asked Dad if he wanted to try some bread and butter pudding, and he said he would. So I made it with part milk/part Fortisip as I am a bit worried that his calorie intake has dropped by 1200 per day since he stopped taking them. Then I made him a cup of hot choc and used some fortisip in that... it tasted nice actually, not that I personally need the extra cals!
He's having fresh mushroom soup later so I'll sneak the last of a bottle into it. Naughty, I know, but at least he'll be getting some nutrients and calories from it, and if his bowels do go loose again then I'll have a word with his GP when she visits tomorrow. Dad only has the Fortisip Neutral so you can put it in pretty much anything where you would use milk or cream.
Yet another:
We were asked about what to do if my dad took a turn for the worst (this was a few weeks ago when he was taken back into hospital for a few days with some problems). The Consultant actually asked my dad... "if your heart stops, do you want us to put the paddles on you". My dad was a bit groggy at the time (his BP had dropped really low) but said very clear "DNR" (Do Not Resucitate). I had guessed that is what he would say, but didn't want to speak on his behalf when we were asked.
Tuesday 24 April 2007
Tuesday 24th April
From PCUK:
My dad has been a bit "loose" this last week, but he's barely eating anyway. He was taking two Fortisip drinks per day (600 cals each) plus an egg whisked in milk, a cup of hot choc and half a cup of soup. So now he's decided that the Fortisip is making his bowels loose and so has stopped drinking them. I'm not overly happy about this as it means his calorie intake has plummeted but I'm giving him today and then will chat with him about it tomorrow.
He is still taking Oramorph - I thought he'd stopped but I think I misheard something mum told me. He's been very upbeat and chatty since last night, which is good, but I know to expect some down days, too.
We see Nurses from Moor Lane (Mary, Brian and Gail mainly).
My mum is doing ok - she is disabled with arthritis, which means that she often looks perfectly well, but is racked with pain right through her body. She can look after herself and dad to the extent of making meals, tidying the flat (they moved to a smaller place 4 years ago to make life easier for themselves) and so on. However she can't stand or walk for long, doesn't drive, and just generally can feel fairly rotten as a result of her pain. She also has COPD (lung disease) but seems to have this under control with medication. Bless her - she's soldiering on really well but I know she is feeling the strain of it all. On an emotional level she is being strong (she says she isn't - I think she's doing very well) but I know she's devastated about what is happening to Dad now, and what is ahead for him.
If my sister and I aren't around, my mum would struggle with helping Dad - she can't get down to empty his catheter bag, move or lift him up in bed etc, so that is why we have help from Home Care, as we can't guarantee that we will be here every day at the times when Dad needs help.
My dad has been a bit "loose" this last week, but he's barely eating anyway. He was taking two Fortisip drinks per day (600 cals each) plus an egg whisked in milk, a cup of hot choc and half a cup of soup. So now he's decided that the Fortisip is making his bowels loose and so has stopped drinking them. I'm not overly happy about this as it means his calorie intake has plummeted but I'm giving him today and then will chat with him about it tomorrow.
He is still taking Oramorph - I thought he'd stopped but I think I misheard something mum told me. He's been very upbeat and chatty since last night, which is good, but I know to expect some down days, too.
We see Nurses from Moor Lane (Mary, Brian and Gail mainly).
My mum is doing ok - she is disabled with arthritis, which means that she often looks perfectly well, but is racked with pain right through her body. She can look after herself and dad to the extent of making meals, tidying the flat (they moved to a smaller place 4 years ago to make life easier for themselves) and so on. However she can't stand or walk for long, doesn't drive, and just generally can feel fairly rotten as a result of her pain. She also has COPD (lung disease) but seems to have this under control with medication. Bless her - she's soldiering on really well but I know she is feeling the strain of it all. On an emotional level she is being strong (she says she isn't - I think she's doing very well) but I know she's devastated about what is happening to Dad now, and what is ahead for him.
If my sister and I aren't around, my mum would struggle with helping Dad - she can't get down to empty his catheter bag, move or lift him up in bed etc, so that is why we have help from Home Care, as we can't guarantee that we will be here every day at the times when Dad needs help.
Monday 23 April 2007
Monday 23rd April
Morning and Happy St Georges Day.
Ah yes my niece is being marvellous over my dad - but she's still a little brat in most other respects. :-)
From Pancreatic Cancer UK Forum:
Leslie, thanks for posting that. I've just read your sister's biog - it's a beautifully written piece. I ordered the Final Gifts book from Amazon last week, as I saw it recommended elsewhere. I am hoping it will arrive tomorrow or the day after. I'm glad you found it useful. I know it won't have all the answers for us but I thought it was worth
And another one:
My dad has taken himself off the oramorph (he was only on low dose anyway) as he says it isn't working. We're going to phone Helen and ask to talk through his pain and pain relief in more detail as we aren't really sure what the root cause it (pressure sores or the disease) and he also has a nasty, persistent cough which is troubling him. I am wondering if the cancer has spread into his lungs but he's had this cough since he was in hospital (from early February) and I know they did some chest x-rays there. He's had several courses of antibiotic so if it is infection, nothing is shifting it. We need to try to get him comfortable as he's getting quite distressed and more fed up with it all.
Ah yes my niece is being marvellous over my dad - but she's still a little brat in most other respects. :-)
From Pancreatic Cancer UK Forum:
Leslie, thanks for posting that. I've just read your sister's biog - it's a beautifully written piece. I ordered the Final Gifts book from Amazon last week, as I saw it recommended elsewhere. I am hoping it will arrive tomorrow or the day after. I'm glad you found it useful. I know it won't have all the answers for us but I thought it was worth
And another one:
My dad has taken himself off the oramorph (he was only on low dose anyway) as he says it isn't working. We're going to phone Helen and ask to talk through his pain and pain relief in more detail as we aren't really sure what the root cause it (pressure sores or the disease) and he also has a nasty, persistent cough which is troubling him. I am wondering if the cancer has spread into his lungs but he's had this cough since he was in hospital (from early February) and I know they did some chest x-rays there. He's had several courses of antibiotic so if it is infection, nothing is shifting it. We need to try to get him comfortable as he's getting quite distressed and more fed up with it all.
Sunday 22 April 2007
Sunday 22nd April
Why I am still up and on the computer? I was really tired earlier today but I had an espresso at 9.30 which might not have been a great idea. Dinner was lovely. I had a prawn salad to start, then roast coley (lovely white fish which I'd not tried before) on a bed of piperade, spinach and butterbeans. All quite healthy until I ordered the sticky toffee pudding . Then I came home and had an espresso and large Tia Maria.
I had to laugh at myself eating butterbeans. I always had a total revulsion of them as a kid... I would practically be in tears whenever my mum served them up to us (only about once a month, I have to say). Tonight when I saw the menu, the child in me went "ugh" and then the adult said "hang on, you like beans, and that's all they are". I was quite impressed with them, actually.
I finished the Nigel Slater book (Toast) this morning. What a great read... I had to agree with how he described so much of the food he writes about. Is there a follow up? I'd like to hear the next part of the story........
From PCUK:
We're in pretty much the same situation with my dad (felt ill from mid-January, in hospital 6 weeks, diagnosed 8th March, no treatment offered). My dad is 68. We also wonder about "when" as it isn't something that anybody has been very specific about with us. The closest we got was one Registrar who said that because my dad's cancer had started to spread (into his stomach lining) then it was likely he would deteriorate rapidly and probably had "months".
For this reason they decided not to refer my dad to the Regional specialist, and didn't offer any treatment locally. I read into that months meant the short term rather than almost a year! My major issue when my dad left hospital having being told he was terminally ill and that they would arrange for his palliative care, is that nobody actually explained to us what "palliative care" is. So, over the course of the 2 weeks after his discharge, we were in a bit of confusion about who would come out, when, for how long and who did what.
However, what I did manage to establish is:
- The patients GP is responsible for his care when he is at home
- The "palliative care" team consists of: the GP, District Nurses, Home Carers and Macmillan Nurse
- The District Nurse Team Leader seems to be the person who co-ordinates everything for us (equipment, carer visits etc). He deals with Social Services on our behalf.
- Various other people can be involved (physio/occupational therapists, alternative therapies provided by volunteers for Macmillan etc). You can arrange that via the Macmillan Nurse.
- Home care can do a certain amount (e.g. my dad has a stoma bag covering a laparoscopy wound and Home care will change and empty it) but there is a line where they have to stop and District Nurses take over. (E.g. my dad has dressings on his pressure sores, and Home Care are not allowed to touch that). They can also give out medication but only if it is prescribed in day-labelled packaging.
When my dad was discharged, the lady from Home Care told us (well, we asked when we saw reference to 6 weeks in a leaflet) that they are attached to the local GP area covering my dad and are there to provide short term support on discharge (for 6 weeks). But then she said what normally happens is that after 6 weeks, patients requiring more care are handed over to an Agency care team. She also advised us that in end-of-life cases, they usually kept the same care team throughout so as to avoid disruption and distress for the patient. It may be different in various parts of the country, though? We're in Widnes.We've been very fortunate in that my dad's GP is fantastic (she's given mum her personal mobile number if we ever need it) and came to see Dad within days of his discharge to check what care he needed and to make sure that he was getting it.
I had to laugh at myself eating butterbeans. I always had a total revulsion of them as a kid... I would practically be in tears whenever my mum served them up to us (only about once a month, I have to say). Tonight when I saw the menu, the child in me went "ugh" and then the adult said "hang on, you like beans, and that's all they are". I was quite impressed with them, actually.
I finished the Nigel Slater book (Toast) this morning. What a great read... I had to agree with how he described so much of the food he writes about. Is there a follow up? I'd like to hear the next part of the story........
From PCUK:
We're in pretty much the same situation with my dad (felt ill from mid-January, in hospital 6 weeks, diagnosed 8th March, no treatment offered). My dad is 68. We also wonder about "when" as it isn't something that anybody has been very specific about with us. The closest we got was one Registrar who said that because my dad's cancer had started to spread (into his stomach lining) then it was likely he would deteriorate rapidly and probably had "months".
For this reason they decided not to refer my dad to the Regional specialist, and didn't offer any treatment locally. I read into that months meant the short term rather than almost a year! My major issue when my dad left hospital having being told he was terminally ill and that they would arrange for his palliative care, is that nobody actually explained to us what "palliative care" is. So, over the course of the 2 weeks after his discharge, we were in a bit of confusion about who would come out, when, for how long and who did what.
However, what I did manage to establish is:
- The patients GP is responsible for his care when he is at home
- The "palliative care" team consists of: the GP, District Nurses, Home Carers and Macmillan Nurse
- The District Nurse Team Leader seems to be the person who co-ordinates everything for us (equipment, carer visits etc). He deals with Social Services on our behalf.
- Various other people can be involved (physio/occupational therapists, alternative therapies provided by volunteers for Macmillan etc). You can arrange that via the Macmillan Nurse.
- Home care can do a certain amount (e.g. my dad has a stoma bag covering a laparoscopy wound and Home care will change and empty it) but there is a line where they have to stop and District Nurses take over. (E.g. my dad has dressings on his pressure sores, and Home Care are not allowed to touch that). They can also give out medication but only if it is prescribed in day-labelled packaging.
When my dad was discharged, the lady from Home Care told us (well, we asked when we saw reference to 6 weeks in a leaflet) that they are attached to the local GP area covering my dad and are there to provide short term support on discharge (for 6 weeks). But then she said what normally happens is that after 6 weeks, patients requiring more care are handed over to an Agency care team. She also advised us that in end-of-life cases, they usually kept the same care team throughout so as to avoid disruption and distress for the patient. It may be different in various parts of the country, though? We're in Widnes.We've been very fortunate in that my dad's GP is fantastic (she's given mum her personal mobile number if we ever need it) and came to see Dad within days of his discharge to check what care he needed and to make sure that he was getting it.
Saturday 21 April 2007
Finally opening up....
I'm back home.... got back at 6pm yesterday.
My dad was a bit low in his mood yesterday and for the first time since he was diagnosed in hospital, he actually opened up to me and expressed some emotion about how he is feeling. It was tough to see, but at the same time I am glad he did as we knew he'd been bottling things in for too long. I have made him promise that he will let go when he needs to - with either me, mum or my sister. I've told him we can take it, and that is the kind of support we're there to offer him.
So today I'll be shopping and just generally pottering about... it doesn't seem as warm and sunny here as it's been all week. Tomorrow I think we'll go for a walk somewhere nice. Or maybe get the bikes out.... ooh now that's an idea!
Well I have spent far too much in Tesco. I couldn't resist buying my niece a pink-heart-patterned-fluffy-on-one-side-silky-on-the-other throw for her bedroom. She always seems to like to be "wrapped" in something and I so I got it for her. I might save it for when things get really tough with Dad, as a little gift. She's actually really, really brave over it all and goes into chat to him all the time. She often breaks her heart crying when she comes out, but she never tries to avoid it, and is always really bright and bubbly around my dad. She's only 12 - I don't know how I'd have coped at that age. My 18 year old nephew just tries to avoid the situation as far as possible, bless him. He does come and visit and chat to my dad, but I know he is struggling with it all.
We're out for dinner this evening (just Roy and I) to a new pub we've found that was done up. I think I mentioned it a few weeks ago - it's terrific value and really nice food.
Comment added in May:
When Dad did finally open up to us, it was really hard to hear. I'd gone in to say goodbye to him before leaving for the weekend and I'd asked him what the Nurse had done. "Same as always" he'd said (meaning: dressed the wound, given Clexane injection). "Thats all I have to look forward to, day in, day out - I'm fed up of it. I can't go on like this". Then he started to cry. I kicked his door shut and went back to him.. I didn't know what to say but I just said that I understood him feeling like that. He said he wished somebody would do the decent thing and just put him down. I said, well you know they can't do that, and he just nodded. He said that he was trying to be open but he found it hard... I explained that we (mum, Lol and I) were there to support him and listen if he wanted to moan or cry at any time. I asked him to promise me he wouldn't be brave all the time if he didn't feel like it. I said how amazing he's been through all this. I told him, that if ever I need strength to face anything like he's going through in my own life, then I only hope I have even half the strength that he's showing. I told him I know how deep he's digging to carry on, and that he must try to let it out if it all gets too much. He said he understood that. Then he asked me to open the door, or else mum and Lorraine would wonder what was going on. "Well the rotten buggers haven't been in to find out yet" I said. He laughed, and said he'd watch tv, Pie in the Sky - it takes him "out of himself" for a while.
Such a sad conversation to have. When I came out, I was telling Mum and Lorraine. Emily was there and she was listening in (for a change!). She went marching in to Dad's room and started to talk to him. "Are you alright, Grandad? You're so brave, you know Grandad. If it was me, I'd be moaning, moaning, moaning and getting on everyone's nerves". She's so funny at times. So brave herself, really.
My dad was a bit low in his mood yesterday and for the first time since he was diagnosed in hospital, he actually opened up to me and expressed some emotion about how he is feeling. It was tough to see, but at the same time I am glad he did as we knew he'd been bottling things in for too long. I have made him promise that he will let go when he needs to - with either me, mum or my sister. I've told him we can take it, and that is the kind of support we're there to offer him.
So today I'll be shopping and just generally pottering about... it doesn't seem as warm and sunny here as it's been all week. Tomorrow I think we'll go for a walk somewhere nice. Or maybe get the bikes out.... ooh now that's an idea!
Well I have spent far too much in Tesco. I couldn't resist buying my niece a pink-heart-patterned-fluffy-on-one-side-silky-on-the-other throw for her bedroom. She always seems to like to be "wrapped" in something and I so I got it for her. I might save it for when things get really tough with Dad, as a little gift. She's actually really, really brave over it all and goes into chat to him all the time. She often breaks her heart crying when she comes out, but she never tries to avoid it, and is always really bright and bubbly around my dad. She's only 12 - I don't know how I'd have coped at that age. My 18 year old nephew just tries to avoid the situation as far as possible, bless him. He does come and visit and chat to my dad, but I know he is struggling with it all.
We're out for dinner this evening (just Roy and I) to a new pub we've found that was done up. I think I mentioned it a few weeks ago - it's terrific value and really nice food.
Comment added in May:
When Dad did finally open up to us, it was really hard to hear. I'd gone in to say goodbye to him before leaving for the weekend and I'd asked him what the Nurse had done. "Same as always" he'd said (meaning: dressed the wound, given Clexane injection). "Thats all I have to look forward to, day in, day out - I'm fed up of it. I can't go on like this". Then he started to cry. I kicked his door shut and went back to him.. I didn't know what to say but I just said that I understood him feeling like that. He said he wished somebody would do the decent thing and just put him down. I said, well you know they can't do that, and he just nodded. He said that he was trying to be open but he found it hard... I explained that we (mum, Lol and I) were there to support him and listen if he wanted to moan or cry at any time. I asked him to promise me he wouldn't be brave all the time if he didn't feel like it. I said how amazing he's been through all this. I told him, that if ever I need strength to face anything like he's going through in my own life, then I only hope I have even half the strength that he's showing. I told him I know how deep he's digging to carry on, and that he must try to let it out if it all gets too much. He said he understood that. Then he asked me to open the door, or else mum and Lorraine would wonder what was going on. "Well the rotten buggers haven't been in to find out yet" I said. He laughed, and said he'd watch tv, Pie in the Sky - it takes him "out of himself" for a while.
Such a sad conversation to have. When I came out, I was telling Mum and Lorraine. Emily was there and she was listening in (for a change!). She went marching in to Dad's room and started to talk to him. "Are you alright, Grandad? You're so brave, you know Grandad. If it was me, I'd be moaning, moaning, moaning and getting on everyone's nerves". She's so funny at times. So brave herself, really.
Thursday 19 April 2007
Thursday 19th April
From PCUK (addressed to Barb):
My dad's new hoist chair arrived today and if he feels up to it I would love to get him outdoors in the sun and fresh air - even if just for 10 minutes outside his flat. We haven't had any way of getting him out of bed since he lost his strength (his legs went first) and we've been waiting for the new sling to come, as he couldn't use the first one (it hurt where he has nasty pressure sores). I think I am the opposite to you - I like 7 - 8 hours sleep and am rubbish if I get less! When this first started with Dad I had a few sleepless nights but now I am sleeping well.
My dad's new hoist chair arrived today and if he feels up to it I would love to get him outdoors in the sun and fresh air - even if just for 10 minutes outside his flat. We haven't had any way of getting him out of bed since he lost his strength (his legs went first) and we've been waiting for the new sling to come, as he couldn't use the first one (it hurt where he has nasty pressure sores). I think I am the opposite to you - I like 7 - 8 hours sleep and am rubbish if I get less! When this first started with Dad I had a few sleepless nights but now I am sleeping well.
Wednesday 18 April 2007
Wednesday 18th April
From PCUK Forum (addressed to Barb from Canada, in the UK caring for her mom):
I'm lucky in that I am sleeping well, and my dad is currently not at the stage where he needs to be attended 24 hours a day. I'm glad your husband can come over... it will be good support for you. It must be tough being so far away from your husband and children. I live 70 miles away from my parents, I am in Leeds and they're in Widnes.
However, the timing of this has been appropriate as I recently took redundancy from my job and have decided not to look for anything else just yet. Since early February, I've been staying near my parents during the week, and then going home most weekends (if all is well).
We don't have kids and my husband has been wonderful about this. Like you, I have a sister (who lives very close to mum and dad) but she has two young kids and so we are both trying to work as a team with mum. That seems to be working out well. I also have a brother but he has 3 young kiddies and his wife's father is ill, so she spends a lot of time caring for him. So we tend not to ask him to do too much in terms of caring.
I'm lucky in that I am sleeping well, and my dad is currently not at the stage where he needs to be attended 24 hours a day. I'm glad your husband can come over... it will be good support for you. It must be tough being so far away from your husband and children. I live 70 miles away from my parents, I am in Leeds and they're in Widnes.
However, the timing of this has been appropriate as I recently took redundancy from my job and have decided not to look for anything else just yet. Since early February, I've been staying near my parents during the week, and then going home most weekends (if all is well).
We don't have kids and my husband has been wonderful about this. Like you, I have a sister (who lives very close to mum and dad) but she has two young kids and so we are both trying to work as a team with mum. That seems to be working out well. I also have a brother but he has 3 young kiddies and his wife's father is ill, so she spends a lot of time caring for him. So we tend not to ask him to do too much in terms of caring.
Tuesday 17 April 2007
Tuesday 17th April
Various posts from PCUK Forum:
Nia, if your Macmillan Nurse is coming to meet you then I hope you will get all of the information you need to prepare for your dad's care. Make a list before you see her, I found it helped me to remember to cover all the concerns I had. I have found my dad's palliative care team (a combination of my dad's GP, District Nurse, Carers and Macmillan Nurse) to be very good... but as I think I said to somebody on another thread, be sure to push and ensure that you get exactly the help and support you need. If you act like you can cope, you may be left to do more than you can actually handle (or are comfortable with). I'm not being negative here, just from my experience a lot more support is available to you than may be initially offered.
Also, remember that you can sometimes get alternative therapies like Reiki through Macmillan. If that is something your dad might be interested in.
Barb - I am sorry that your mum wasn't offered treatment. I know how it feels when that last glimmer of hope is taken away from your parent. When my dad was told his cancer was inoperable, he was not interested in any life prolonging therapy - he doesn't want to linger now as his quality of life is severely impaired due to immobility and weakness.
I also understand what you mean when you say you fear what we all have ahead. My fears are slightly lessened the more I speak to people about things like pain and symptom relief.... but then we aren't really that far along the path with my dad (I don't think).
Another post:
We were a bit silly in that we bought dad a brand new double bed just before he came out of hospital. A week later, the care team (carers and District Nurse) decided that he would need a proper hospital bed and we were left with the dilemma of where to store a double. Ah well, you live and learn. :)
And another:
For those of us still going through our journey with loved ones who are ill, it doesn't make us give up hope - I guess we just learn to revise what we hope for. Early on in my dad's illness I hoped for a diagnosis of pancreatitis or IBS.
Then when we knew he had pancreas cancer I hoped for some form of treatment.
Then when they couldn't offer any treatment I hoped for my dad to be comfortable and in peace.
It's often hard to find any positives in this awful disease and dying process.
And another:
Melanie - yes I agree with you there. (She has suggested supporting improvements of diagnostic techniques for PC). Later on (after my dad has passed) I want to look into that in more detail. I am also concerned in that pancreas cancer has affected my paternal grandmother, father and maternal grandfather. So I want to look at the Europac info and what they're doing to investigate genetics. And another positive I can see (if I look hard enough ;)) is that I can always think about fundraising for research and diagnostic techniques.
Nia, if your Macmillan Nurse is coming to meet you then I hope you will get all of the information you need to prepare for your dad's care. Make a list before you see her, I found it helped me to remember to cover all the concerns I had. I have found my dad's palliative care team (a combination of my dad's GP, District Nurse, Carers and Macmillan Nurse) to be very good... but as I think I said to somebody on another thread, be sure to push and ensure that you get exactly the help and support you need. If you act like you can cope, you may be left to do more than you can actually handle (or are comfortable with). I'm not being negative here, just from my experience a lot more support is available to you than may be initially offered.
Also, remember that you can sometimes get alternative therapies like Reiki through Macmillan. If that is something your dad might be interested in.
Barb - I am sorry that your mum wasn't offered treatment. I know how it feels when that last glimmer of hope is taken away from your parent. When my dad was told his cancer was inoperable, he was not interested in any life prolonging therapy - he doesn't want to linger now as his quality of life is severely impaired due to immobility and weakness.
I also understand what you mean when you say you fear what we all have ahead. My fears are slightly lessened the more I speak to people about things like pain and symptom relief.... but then we aren't really that far along the path with my dad (I don't think).
Another post:
We were a bit silly in that we bought dad a brand new double bed just before he came out of hospital. A week later, the care team (carers and District Nurse) decided that he would need a proper hospital bed and we were left with the dilemma of where to store a double. Ah well, you live and learn. :)
And another:
For those of us still going through our journey with loved ones who are ill, it doesn't make us give up hope - I guess we just learn to revise what we hope for. Early on in my dad's illness I hoped for a diagnosis of pancreatitis or IBS.
Then when we knew he had pancreas cancer I hoped for some form of treatment.
Then when they couldn't offer any treatment I hoped for my dad to be comfortable and in peace.
It's often hard to find any positives in this awful disease and dying process.
And another:
Melanie - yes I agree with you there. (She has suggested supporting improvements of diagnostic techniques for PC). Later on (after my dad has passed) I want to look into that in more detail. I am also concerned in that pancreas cancer has affected my paternal grandmother, father and maternal grandfather. So I want to look at the Europac info and what they're doing to investigate genetics. And another positive I can see (if I look hard enough ;)) is that I can always think about fundraising for research and diagnostic techniques.
Monday 16 April 2007
Monday 16th April
Posted on Pancreatic Cancer UK Forum:
Nia - my dad was also diagnosed in early March (the 8th I think) and not offered any treatment. The thing I am finding is that each case is very different - the consultants told us my dad has "months" left, but at the moment he isn't in pain at all and has no jaundice. His cancer has spread to the omentum (a membrane in the stomach area and around the colon I think).
Another post on PCUK:
I'm new to this forum... my name is Jan and my dad was diagnosed on 8th March with metastatic pancreatic cancer. It has spread to his omentum. It took 6 weeks to get to the diagnosis and dad was in hospital all that time. During those weeks he deteriorated rapidly (lost 4 stone in weight, got very weak etc). He has no pain (apart from his pressure sores but that's another story) and is not jaundiced. His consultant said he probably had "months" and did not offer any treatment. My dad doesn't want any treatment (palliative chemo was mentioned) and wants to die quickly rather than linger.
My sister and I make up part of his care team as mum is disabled (she can do most stuff but nothing too heavy) and we have great support from Carers and District Nurses. When he came home from hospital (13th March) we did talk with him about certain things - mainly financial - and my sis and I have reassured Dad that mum will be ok and we'll make sure everything is taken care of. In the last few weeks, our conversations with dad have become rather mundane. Relating to his care needs, or to just day to day stuff that's going on.
We don't really discuss how he is feeling. He specifically said that he doesn't want to talk about his illness or what is ahead... although we have cried with him in the hospital when he first was told his diagnosis. I am starting to feel that we maybe should all be a bit more open and honest about our feelings. There are a few personal things I want to say to my dad but every time I think I have an opportunity I bottle out. It's nothing bad - I just want to say some loving things to him.
A few people have said that dad won't open up to us (we're too close) as he won't want to see our pain, or let us know how awful he's really feeling about the whole thing. His only comments about the cancer have been that he's just one of many, why shouldn't it be him, and that he's had a great and happy life with mum and family. He's only 68 but seems reconciled that his time is up. He seems to be being too brave about it all...
Dad's mobility is zero. He can't walk or get up out of bed. I was hoping we could take him in the car for a drive etc. but since leaving hospital he has gone downhill with regards to getting about. His spirit has been good but lately he is getting very fed up with it all (how awful to just be in bed 24/7).
So, I am wondering if anybody else would share their thoughts or experiences on how to talk with a terminally ill relative. I know everybody is different but I would appreciate your views.
Comment added in May:
I don't remember exactly when this happened, but it's a story I wanted to tell. Emily (my niece) came up with this wonderful theory that my Dad is a Buddha! She said that Grandad has long ears - as does Buddha - and that he is very wise. And therefore, he must be a Buddha. My dad was very pleased when I told him this - he laughed, and agreed that he is wise....
I told Emily that Grandad was wise and she should take note of everything that he tells her. At the moment he's trying to make her see sense over this constant falling out with "friends" and being materialistic. Oh - and he's also decided that he's "training" her to have proper conversations :-)
Nia - my dad was also diagnosed in early March (the 8th I think) and not offered any treatment. The thing I am finding is that each case is very different - the consultants told us my dad has "months" left, but at the moment he isn't in pain at all and has no jaundice. His cancer has spread to the omentum (a membrane in the stomach area and around the colon I think).
Another post on PCUK:
I'm new to this forum... my name is Jan and my dad was diagnosed on 8th March with metastatic pancreatic cancer. It has spread to his omentum. It took 6 weeks to get to the diagnosis and dad was in hospital all that time. During those weeks he deteriorated rapidly (lost 4 stone in weight, got very weak etc). He has no pain (apart from his pressure sores but that's another story) and is not jaundiced. His consultant said he probably had "months" and did not offer any treatment. My dad doesn't want any treatment (palliative chemo was mentioned) and wants to die quickly rather than linger.
My sister and I make up part of his care team as mum is disabled (she can do most stuff but nothing too heavy) and we have great support from Carers and District Nurses. When he came home from hospital (13th March) we did talk with him about certain things - mainly financial - and my sis and I have reassured Dad that mum will be ok and we'll make sure everything is taken care of. In the last few weeks, our conversations with dad have become rather mundane. Relating to his care needs, or to just day to day stuff that's going on.
We don't really discuss how he is feeling. He specifically said that he doesn't want to talk about his illness or what is ahead... although we have cried with him in the hospital when he first was told his diagnosis. I am starting to feel that we maybe should all be a bit more open and honest about our feelings. There are a few personal things I want to say to my dad but every time I think I have an opportunity I bottle out. It's nothing bad - I just want to say some loving things to him.
A few people have said that dad won't open up to us (we're too close) as he won't want to see our pain, or let us know how awful he's really feeling about the whole thing. His only comments about the cancer have been that he's just one of many, why shouldn't it be him, and that he's had a great and happy life with mum and family. He's only 68 but seems reconciled that his time is up. He seems to be being too brave about it all...
Dad's mobility is zero. He can't walk or get up out of bed. I was hoping we could take him in the car for a drive etc. but since leaving hospital he has gone downhill with regards to getting about. His spirit has been good but lately he is getting very fed up with it all (how awful to just be in bed 24/7).
So, I am wondering if anybody else would share their thoughts or experiences on how to talk with a terminally ill relative. I know everybody is different but I would appreciate your views.
Comment added in May:
I don't remember exactly when this happened, but it's a story I wanted to tell. Emily (my niece) came up with this wonderful theory that my Dad is a Buddha! She said that Grandad has long ears - as does Buddha - and that he is very wise. And therefore, he must be a Buddha. My dad was very pleased when I told him this - he laughed, and agreed that he is wise....
I told Emily that Grandad was wise and she should take note of everything that he tells her. At the moment he's trying to make her see sense over this constant falling out with "friends" and being materialistic. Oh - and he's also decided that he's "training" her to have proper conversations :-)
Sunday 15 April 2007
Sunday 15th April
Roy had a marvellous idea yesterday (at about 12 noon). "Let's have a Grand National Barbecue later on" he says. "Oh great" I said. "Will you have time to shop for the food, prep it all and set the garden up?". All of a sudden the BBQ didn't seem like such a good idea and he decided we should stick with Plan A (going for a curry).
Much as I'd have loved to have people round for BBQ (the weather is superb here just now) I couldn't be bothered cleaning the house etc etc etc. I know you should seize the moment and all that, but.....
Today we were up early (before 8) and went for a nice walk to our local Stately Home gardens at 9.30. Then we did the food shop (which is incredibly easy when we shop just for Roy!) and came home to read the papers in the Conservatory. Then we popped to Costco for a (costly) mooch.
Now I'm back and thinking about what time to do dinner. Am being lazy and heating up a shop bought quiche to have with salad.
Much as I'd have loved to have people round for BBQ (the weather is superb here just now) I couldn't be bothered cleaning the house etc etc etc. I know you should seize the moment and all that, but.....
Today we were up early (before 8) and went for a nice walk to our local Stately Home gardens at 9.30. Then we did the food shop (which is incredibly easy when we shop just for Roy!) and came home to read the papers in the Conservatory. Then we popped to Costco for a (costly) mooch.
Now I'm back and thinking about what time to do dinner. Am being lazy and heating up a shop bought quiche to have with salad.
Saturday 14 April 2007
Saturday 14th April
Well I'm home. It is a beautiful day here and I'm heading out to the shop soon, and then to Roy's parents house to watch the Grand National.
Posted on Pancreatic Cancer UK (PCUK) Forum:
Hello.. I'm new to this forum. My dad was diagnosed with inoperable pancreatic cancer on 8th March and he came home on 13th March. He hasn't been offered any treatment (and doesn't want any). He is 68. When we saw the story about Gareth Hunt in the papers, we decided not to give him the newspaper that day. He is bed bound and isn't mobile - so relies on us to take his paper in to him. We made up some story about throwing the paper out by accident.
My sister did tell him that Gareth Hunt had died, and when he asked how, said it was the same as he had. The problem was, my dad wants to die quickly (he has this "thing" about the cancer not dragging on) and we didn't want him to see the bit about a "2 year battle" as we felt that might make him very anxious that his illness would go on for years.
So, AFC, I guess we were holding the story back for different reasons.... but I do understand your point. Thing is, every case is so different.... as I am finding the more I read into Pancreatic cancer. We have no idea how long dad has, (the Registrar who told us his diagnosis said that because the cancer had spread it would be "months") and the weird thing is that my dad has no pain at all. Which makes me wonder if the cancer is as advanced as the hospital made out?
Posted on Pancreatic Cancer UK (PCUK) Forum:
Hello.. I'm new to this forum. My dad was diagnosed with inoperable pancreatic cancer on 8th March and he came home on 13th March. He hasn't been offered any treatment (and doesn't want any). He is 68. When we saw the story about Gareth Hunt in the papers, we decided not to give him the newspaper that day. He is bed bound and isn't mobile - so relies on us to take his paper in to him. We made up some story about throwing the paper out by accident.
My sister did tell him that Gareth Hunt had died, and when he asked how, said it was the same as he had. The problem was, my dad wants to die quickly (he has this "thing" about the cancer not dragging on) and we didn't want him to see the bit about a "2 year battle" as we felt that might make him very anxious that his illness would go on for years.
So, AFC, I guess we were holding the story back for different reasons.... but I do understand your point. Thing is, every case is so different.... as I am finding the more I read into Pancreatic cancer. We have no idea how long dad has, (the Registrar who told us his diagnosis said that because the cancer had spread it would be "months") and the weird thing is that my dad has no pain at all. Which makes me wonder if the cancer is as advanced as the hospital made out?
Friday 13 April 2007
Friday 13th April
It's Friday 13th today!
Already my mum has had her bit of bad luck. She has a raised vein on her foot which "pops" occasionally. Not very nice when it does... it spurts lots of blood and has to have a tourniquet applied. So I was on the bathroom floor trying to do that for her for about 30 minutes.. eventually the bleeding stopped and we got her onto a chair with her feet up for a couple of hours.
See - another new nursing skill I learned... tourniquets.
All is well now. Dad is not so good - fed up and frustrated - but I guess we can't expect him to be bright all the time.So I'll be heading home in the next hour, all being well.
Already my mum has had her bit of bad luck. She has a raised vein on her foot which "pops" occasionally. Not very nice when it does... it spurts lots of blood and has to have a tourniquet applied. So I was on the bathroom floor trying to do that for her for about 30 minutes.. eventually the bleeding stopped and we got her onto a chair with her feet up for a couple of hours.
See - another new nursing skill I learned... tourniquets.
All is well now. Dad is not so good - fed up and frustrated - but I guess we can't expect him to be bright all the time.So I'll be heading home in the next hour, all being well.
Tuesday 10 April 2007
Tuesday 10th April
My sister's friend had twins at the weekend... they're gorgeous (have seen online video). Identical twins - James and Daniel.
Back to Mum's at lunchtime. Dad is not in good humour today apparently, and neither is my mum. She said it "all got to her" last night. So now my sis and I are feeling guilty for leaving her on her own yesterday afternoon and evening.
I have been faffing around with my laptop since 8.30... installing various stuff that came with my new BT Broadband. It all seems to be working ok for now... fingers crossed
Comment added in May:
I can't remember exactly when this happened, but shortly after we'd given up on getting Dad out of bed using the hoist (it just hurt him too much because of his pressure sores) the Nurses decided that he'd be better staying in bed and going to the toilet on pads. Then, three times a day the Carers and Nurses sort him out (clean him up etc). In the event of accidents in between times, then my sister or I can do it.
One day, he'd had an accident and wanted cleaning up. He asked my mum to do it! Well, what you have to realise is, that despite having had 3 kids, mum is totally rubbish with poo. She could never even change the nappy of any child other than her own. So was absolutely horrified when Dad asked her to clean him up. She was delaying things - "oh the girls will be here to do it soon" - and he was shouting at her "Come on Teresa, in sickness and in health, remember?".
Comical. And yet not! I wish I'd been a fly on the wall though.......
Back to Mum's at lunchtime. Dad is not in good humour today apparently, and neither is my mum. She said it "all got to her" last night. So now my sis and I are feeling guilty for leaving her on her own yesterday afternoon and evening.
I have been faffing around with my laptop since 8.30... installing various stuff that came with my new BT Broadband. It all seems to be working ok for now... fingers crossed
Comment added in May:
I can't remember exactly when this happened, but shortly after we'd given up on getting Dad out of bed using the hoist (it just hurt him too much because of his pressure sores) the Nurses decided that he'd be better staying in bed and going to the toilet on pads. Then, three times a day the Carers and Nurses sort him out (clean him up etc). In the event of accidents in between times, then my sister or I can do it.
One day, he'd had an accident and wanted cleaning up. He asked my mum to do it! Well, what you have to realise is, that despite having had 3 kids, mum is totally rubbish with poo. She could never even change the nappy of any child other than her own. So was absolutely horrified when Dad asked her to clean him up. She was delaying things - "oh the girls will be here to do it soon" - and he was shouting at her "Come on Teresa, in sickness and in health, remember?".
Comical. And yet not! I wish I'd been a fly on the wall though.......
Monday 9 April 2007
Monday 9th April
The nurses are using this Manuka Honey cream, which seems to be helping. Dad is still on good form, even had some sausage, egg and beans this morning! (Mind you if you could see the amount of food he eats, it's pitiful - but I am just glad he is enjoying a little taste of some things).
I'm back home now... getting sick of seeing the Pennines and the M62, LOL! I'll go back over tomorrow lunchtime.
I think I made my dad's meal sound like a full english breakfast, when in fact it was one spoonful of beans, the yolk from a poached egg and half a sausage (skinned and chopped up small). Also today he's had 2 of his high calorie drinks, four spoonfuls of custard and about 100mls of soup.
When I think of how he used to eat, it's scary. Mind you, the high cal drinks are 610 cals each so he's probably getting about 1500 cals per day.... and given that he is inactive he won't be burning any through activity. He doesn't seem to have lost more weight in the last week or so. I guess that's all good.
Dad not eating or enjoying food used to bother me a lot. It used to upset me, to see this big fine man who LOVED good food just totally not interested. I felt that it was a cruel blow. However, in time, priorities change and now that doesn't bother me at all.... my main concern is for his comfort on a day to day basis. Funny that.
I'm back home now... getting sick of seeing the Pennines and the M62, LOL! I'll go back over tomorrow lunchtime.
I think I made my dad's meal sound like a full english breakfast, when in fact it was one spoonful of beans, the yolk from a poached egg and half a sausage (skinned and chopped up small). Also today he's had 2 of his high calorie drinks, four spoonfuls of custard and about 100mls of soup.
When I think of how he used to eat, it's scary. Mind you, the high cal drinks are 610 cals each so he's probably getting about 1500 cals per day.... and given that he is inactive he won't be burning any through activity. He doesn't seem to have lost more weight in the last week or so. I guess that's all good.
Dad not eating or enjoying food used to bother me a lot. It used to upset me, to see this big fine man who LOVED good food just totally not interested. I felt that it was a cruel blow. However, in time, priorities change and now that doesn't bother me at all.... my main concern is for his comfort on a day to day basis. Funny that.
Sunday 8 April 2007
Sunday 8th April
You're absolutely right about prevention being better than cure for bedsores - but unfortunately the hospital let things go beyond that point and we are dealing with the consequences. The good news is that the sores are less sore at the moment.
Dad does have a special mattress but it's not the "blister" type... it's like a memory foam. Has so far prevented any new sores forming. He got a special air mattress in hospital but couldn't sleep on it - said it was like lying on a cattle grid, LOL!
Well, I'm at mums now and heading to my B&B soon. The lady I stay with is away so Roy and I are going to watch the golf (Masters) on her HUGE plasma screen telly.
My dad is settled and watching a western movie on tv. Just had a lovely lamb dinner. Dad had a tiny portion too (I am talking a saucer-sized plate) and really enjoyed it. And we've been for another walk today! I took a walk down memory lane to an old quarry (Pex Hill) that we used to play in when I was a kid. Very nostalgic. So all is good with the world.
Dad does have a special mattress but it's not the "blister" type... it's like a memory foam. Has so far prevented any new sores forming. He got a special air mattress in hospital but couldn't sleep on it - said it was like lying on a cattle grid, LOL!
Well, I'm at mums now and heading to my B&B soon. The lady I stay with is away so Roy and I are going to watch the golf (Masters) on her HUGE plasma screen telly.
My dad is settled and watching a western movie on tv. Just had a lovely lamb dinner. Dad had a tiny portion too (I am talking a saucer-sized plate) and really enjoyed it. And we've been for another walk today! I took a walk down memory lane to an old quarry (Pex Hill) that we used to play in when I was a kid. Very nostalgic. So all is good with the world.
Saturday 7 April 2007
Saturday 7th April
To be honest I am starting to wonder what the purpose of the Macmillan Nurse is. I think I am being harsh - I believe that they get more involved in the later stages. So far, Helen has visited twice and she just asks my dad if he's got any concerns at all.
The District Nurse seems to get lumbered with organising all the other care/equipment etc.
My dad is doing ok. I'm going to be really blunt here and I hope it doesn't bother anybody. After his diagnosis, I think my dad was under the impression that he'd come home from hospital and then pass away very quickly. He had a little phase over the last fortnight where he wasn't very happy because he realised that wasn't looking likely to happen. (Whilst he's very ill, I feel he is a little way off the "end" just at the moment.) And so, the last 3 days, he seems to have realised that he still has a wee while longer on this earth and has actually picked up a bit. He's asking to see people now (he banned all visitors except family and one close friend 2 weeks ago) and is trying to eat a bit more. I know he struggles with food, but it is nice to see him try some more things.
I just wanted to give you a feel for where things were at currently. I guess we have a number of phases to go through.I know it is a tough existence for Dad to be bed bound and he is struggling with that. But the Nurse has ordered him a new device for getting out of bed (the first one wasn't suitable) and I have promised him that if he is comfy, I'll try to get him out of bed and in his wheelchair for a short trip outside of the house. He seemed up for that.... I hope this new kit arrives quickly.
The pressure sores are quite a nuisance... we are now trying Manuka Honey ointment, which I asked his Nurse about a few days ago... I'd reading something on line about it. The Nurse said he'd had some success with it, and had some ointment in his office to try. Why he didn't try it sooner is a mystery to me.
The weather is absolutely glorious here. We had a lovely walk yesterday, round Scar House reservoir. It's a nice walk and mainly flat, which suits me fine. It's about 4 miles from where we had our wedding reception... I just love that part of the Dales.
Then we came home and went for dinner in a pub about 15 minutes drive from here, which has been totally refurbished. It was lovely and very good value - three courses plus a good bottle of wine for £15 each!
Just getting ready to drive over to mums. Am calling in to see Roy's parents first.
The District Nurse seems to get lumbered with organising all the other care/equipment etc.
My dad is doing ok. I'm going to be really blunt here and I hope it doesn't bother anybody. After his diagnosis, I think my dad was under the impression that he'd come home from hospital and then pass away very quickly. He had a little phase over the last fortnight where he wasn't very happy because he realised that wasn't looking likely to happen. (Whilst he's very ill, I feel he is a little way off the "end" just at the moment.) And so, the last 3 days, he seems to have realised that he still has a wee while longer on this earth and has actually picked up a bit. He's asking to see people now (he banned all visitors except family and one close friend 2 weeks ago) and is trying to eat a bit more. I know he struggles with food, but it is nice to see him try some more things.
I just wanted to give you a feel for where things were at currently. I guess we have a number of phases to go through.I know it is a tough existence for Dad to be bed bound and he is struggling with that. But the Nurse has ordered him a new device for getting out of bed (the first one wasn't suitable) and I have promised him that if he is comfy, I'll try to get him out of bed and in his wheelchair for a short trip outside of the house. He seemed up for that.... I hope this new kit arrives quickly.
The pressure sores are quite a nuisance... we are now trying Manuka Honey ointment, which I asked his Nurse about a few days ago... I'd reading something on line about it. The Nurse said he'd had some success with it, and had some ointment in his office to try. Why he didn't try it sooner is a mystery to me.
The weather is absolutely glorious here. We had a lovely walk yesterday, round Scar House reservoir. It's a nice walk and mainly flat, which suits me fine. It's about 4 miles from where we had our wedding reception... I just love that part of the Dales.
Then we came home and went for dinner in a pub about 15 minutes drive from here, which has been totally refurbished. It was lovely and very good value - three courses plus a good bottle of wine for £15 each!
Just getting ready to drive over to mums. Am calling in to see Roy's parents first.
Friday 6 April 2007
Friday 6th April
I don't think I've posted for a few days - just been busy.
I drove home last night and am spending today walking in the Dales with Roy. Tonight we're going for a meal - just the two of us.
Tomorrow night, my sis has invited us to dinner at her house, so we'll drive over at teatime, see Mum and Dad and then head to my sisters. She lives about a 5 minute walk from my parents house, which is handy.
Sunday/Monday I'm back on care duty, to give my sister a couple of days off with her family.
Monday night I'll drive back home as Roy is back at work on Tuesday.
I have adapted to not working VERY easily
I drove home last night and am spending today walking in the Dales with Roy. Tonight we're going for a meal - just the two of us.
Tomorrow night, my sis has invited us to dinner at her house, so we'll drive over at teatime, see Mum and Dad and then head to my sisters. She lives about a 5 minute walk from my parents house, which is handy.
Sunday/Monday I'm back on care duty, to give my sister a couple of days off with her family.
Monday night I'll drive back home as Roy is back at work on Tuesday.
I have adapted to not working VERY easily
Tuesday 3 April 2007
Tuesday 3rd April
My poor dad is very uncomfortable with pressure sores... I don't know what to do about them - if anybody knows a miracle cure please post it here.
When the nurse comes to dress his wound, the smell of it is horrendous. Much worse than when he's soiled his pad. The amount of gunge and blood on the dressing is awful... we always "help" the nurse with this, which basically involves just holding dad over and reassuring him as he can get quite distressed and uncomfortable when this is going on. It hurts him when the old dressing is peeled off - this sticks on with adhesive, onto already sore skin.
I did my blood sugar today! I found my Dad's testing kit (he isn't bothering to check his BS now as in the grand scheme of things it isn't worth it - his BS had been well under control anyway). So I asked him if I could check my BS and he said yes. It was 4.9 - that was about 2.5 hours after breakfast. I did my sisters this afternoon and it was 7 - but she did confess to having eaten two Hob Nob biscuits half an hour earlier. My mum was chicken and wouldn't have hers checked.
We have to put a concrete base down before we can buy the shed. I am leaving Roy to organise it all, so it should be done sometime in Summer (2009!).
I have no plans for Easter. I'll go home on Thursday night (all being well) and come back on Saturday - my sister has invited Roy and I to dinner at her house. Sunday/Monday we'll be around to help at mums (give my sis a bit of free time with her family) and then we'll go home Monday night.
I'm going to see a very old workmate of mine tomorrow night - she lives about a 20 minute drive from my parents and I haven't seen her for ages. She and I started work (our first jobs) on the same day and we've been good friends ever since. I'm looking forward to a good natter.
I stay at my sister's mother in law's house! It's about a mile from my parents... and takes under 5 mins in the car. I usually get there about 10.30-11pm, have a quick chat with my sis's MIL (who is a lovely lady who was a Nursing Sister up until 5 years ago) and then go to bed. She insists on me having breakfast after my shower every morning and then I get to my parents house about 8.- 8.30am. It's working quite well (but I miss being in my own bed!!!). However, not so much that I'll drive the 140 mile round trip every day.
Email to Mark:
Hi.. sorry about this afternoon - after me saying that things were "steady" with my dad it all got a bit hectic and my mum and sister were running in and out while we were speaking so I thought I should go and do my bit!! We'll try again next week!
Anyway - saw this and thought of you! Actually I rolled my eyes and thought - "here we go again".
http://www.mortgagesolutions-online.com/public/showPage.html?page=439997
The Reiki man who came today said he used to run his own business turning over £60m pa and now he is part time Reiki man/medium, and part time Children's care home worker - quite a career change. It's got me thinking - I could do something totally different.... not sure about being a full time carer though - they are paid just above the minimum wage, it's disgraceful!!
Comment added in May:
This morning, when I was in with Dad doing tablets etc, he said to me "I nearly got away last night". I asked him what happened. "Somebody came for me. Joan Fearon came". I asked what had happened. "She took hold of my hand and said 'come on Keith, lets get out of here'". But you didn't go, I said. "No". He sounded disappointed. Never mind Dad, must have been nice to see Joan, anyway? "Oh yes - I can't think of anybody better to take me when the time comes". I had to agree... I told him that it must have just been like a dummy run!
So later that day, Richard the Reiki man came. He's a volunteer who we got in touch with via Macmillan. He also is a medium and offered dad Reiki plus medium service. Dad said he'd give it a go (which I found odd as he's never been remotely interested in that sort of thing). Anyway, Richard said he had Dad's mum and brother with him. And gave some "proof" that it was his brother. He said they were with him a lot, and would be there for him when he passed, to ensure a smooth crossing. He explained to Dad what happened when you pass over. He then said that Dad's mum wanted to know why he couldn't swallow his cereals... even though they were mushy. She told him to try manuka honey (BINGO - this got me trawling the net for manuka honey as a treatment for bed sores!) as it might help the porridge go down better. He also told mum that her mother was with her and said she wasn't to be so hard on herself about Dad's care, as she was doing a great job, and all that she could. This was a bit spooky as mum had been upset earlier in the day for not hearing dad call her in the night (another funny tale - when she finally woke up and went into him, he said indignantly "It's a good job I wasn't really ill then, or I'd have been dead by the time you came in"!!).
After Richard had gone I had a chat to dad about him. He'd been a bit poorly today and didn't seem fully aware of what was going on (with the medium stuff) but he did say that Richard told him his mum and Uncle Bob would be there to take him. "Hmmf, they're a bit late - Joan Fearon's already been". He is so funny... I'm not sure that he always means to be! I did say that I told him Joan's visit was probably a dress rehearsal.
Joan was my mum's dearest friend - she lived in LA and died 2 years ago. Mum and Dad spent 6 weeks with her in LA about 7 years ago, and Dad was very fond of Joan.
When the nurse comes to dress his wound, the smell of it is horrendous. Much worse than when he's soiled his pad. The amount of gunge and blood on the dressing is awful... we always "help" the nurse with this, which basically involves just holding dad over and reassuring him as he can get quite distressed and uncomfortable when this is going on. It hurts him when the old dressing is peeled off - this sticks on with adhesive, onto already sore skin.
I did my blood sugar today! I found my Dad's testing kit (he isn't bothering to check his BS now as in the grand scheme of things it isn't worth it - his BS had been well under control anyway). So I asked him if I could check my BS and he said yes. It was 4.9 - that was about 2.5 hours after breakfast. I did my sisters this afternoon and it was 7 - but she did confess to having eaten two Hob Nob biscuits half an hour earlier. My mum was chicken and wouldn't have hers checked.
We have to put a concrete base down before we can buy the shed. I am leaving Roy to organise it all, so it should be done sometime in Summer (2009!).
I have no plans for Easter. I'll go home on Thursday night (all being well) and come back on Saturday - my sister has invited Roy and I to dinner at her house. Sunday/Monday we'll be around to help at mums (give my sis a bit of free time with her family) and then we'll go home Monday night.
I'm going to see a very old workmate of mine tomorrow night - she lives about a 20 minute drive from my parents and I haven't seen her for ages. She and I started work (our first jobs) on the same day and we've been good friends ever since. I'm looking forward to a good natter.
I stay at my sister's mother in law's house! It's about a mile from my parents... and takes under 5 mins in the car. I usually get there about 10.30-11pm, have a quick chat with my sis's MIL (who is a lovely lady who was a Nursing Sister up until 5 years ago) and then go to bed. She insists on me having breakfast after my shower every morning and then I get to my parents house about 8.- 8.30am. It's working quite well (but I miss being in my own bed!!!). However, not so much that I'll drive the 140 mile round trip every day.
Email to Mark:
Hi.. sorry about this afternoon - after me saying that things were "steady" with my dad it all got a bit hectic and my mum and sister were running in and out while we were speaking so I thought I should go and do my bit!! We'll try again next week!
Anyway - saw this and thought of you! Actually I rolled my eyes and thought - "here we go again".
http://www.mortgagesolutions-online.com/public/showPage.html?page=439997
The Reiki man who came today said he used to run his own business turning over £60m pa and now he is part time Reiki man/medium, and part time Children's care home worker - quite a career change. It's got me thinking - I could do something totally different.... not sure about being a full time carer though - they are paid just above the minimum wage, it's disgraceful!!
Comment added in May:
This morning, when I was in with Dad doing tablets etc, he said to me "I nearly got away last night". I asked him what happened. "Somebody came for me. Joan Fearon came". I asked what had happened. "She took hold of my hand and said 'come on Keith, lets get out of here'". But you didn't go, I said. "No". He sounded disappointed. Never mind Dad, must have been nice to see Joan, anyway? "Oh yes - I can't think of anybody better to take me when the time comes". I had to agree... I told him that it must have just been like a dummy run!
So later that day, Richard the Reiki man came. He's a volunteer who we got in touch with via Macmillan. He also is a medium and offered dad Reiki plus medium service. Dad said he'd give it a go (which I found odd as he's never been remotely interested in that sort of thing). Anyway, Richard said he had Dad's mum and brother with him. And gave some "proof" that it was his brother. He said they were with him a lot, and would be there for him when he passed, to ensure a smooth crossing. He explained to Dad what happened when you pass over. He then said that Dad's mum wanted to know why he couldn't swallow his cereals... even though they were mushy. She told him to try manuka honey (BINGO - this got me trawling the net for manuka honey as a treatment for bed sores!) as it might help the porridge go down better. He also told mum that her mother was with her and said she wasn't to be so hard on herself about Dad's care, as she was doing a great job, and all that she could. This was a bit spooky as mum had been upset earlier in the day for not hearing dad call her in the night (another funny tale - when she finally woke up and went into him, he said indignantly "It's a good job I wasn't really ill then, or I'd have been dead by the time you came in"!!).
After Richard had gone I had a chat to dad about him. He'd been a bit poorly today and didn't seem fully aware of what was going on (with the medium stuff) but he did say that Richard told him his mum and Uncle Bob would be there to take him. "Hmmf, they're a bit late - Joan Fearon's already been". He is so funny... I'm not sure that he always means to be! I did say that I told him Joan's visit was probably a dress rehearsal.
Joan was my mum's dearest friend - she lived in LA and died 2 years ago. Mum and Dad spent 6 weeks with her in LA about 7 years ago, and Dad was very fond of Joan.
Monday 2 April 2007
Monday 2nd April
Morning all... I've had a strange morning. My Windows XP crashed and the Sony helpdesk told me I had to recover my laptop back to factory settings and start all over again. I wasn't too happy... I have all my data/photos etc on an external hard drive, but the thought of starting all over again was just.... ugh....Soooo, I gave it a while and pressed all the options Windows was giving me to try to load. It failed about a dozen times and then bingo! Right on my last attempt it worked.
I was also switching ISP today - I had been using my Company broadband and router but I ordered British Telecom's new "Home Hub" system and today was the day it went live. That was a doddle... plugged in, waited an hour, popped a Disc in and pressed "Next" several times And here I am - all up and running again. Phew!
Just about to pop to the bank and then I'll head over to mums. Dad had a steady weekend.
No other news really... we watched Deja Vu on DVD last night but I got bored and ended up doing "to do" lists. Then about 20 minutes before the end the DVD stuck and we couldn't get it working. Cue unhappy Roy! My sister lent me the DVD and she did mention that it was a pirate copy
I was also switching ISP today - I had been using my Company broadband and router but I ordered British Telecom's new "Home Hub" system and today was the day it went live. That was a doddle... plugged in, waited an hour, popped a Disc in and pressed "Next" several times And here I am - all up and running again. Phew!
Just about to pop to the bank and then I'll head over to mums. Dad had a steady weekend.
No other news really... we watched Deja Vu on DVD last night but I got bored and ended up doing "to do" lists. Then about 20 minutes before the end the DVD stuck and we couldn't get it working. Cue unhappy Roy! My sister lent me the DVD and she did mention that it was a pirate copy
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