My father's life ending

The end at last

Tue, 26 Jul 2005 18:58:54 +0200

Tuesday July 26th 2005

I am going to write more but I wanted just say this for anyone who has been following my dad's blog.
He died peacefully at 1.20pm on Monday 25th July 2005.
I will write more in a few days time about how his death came about.

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Just a matter of time

Sat, 23 Jul 2005 08:51:10 +0200

Saturday July 23rd 2005.

It's been a while since I updated this blog, there's been nothing to add to it everything has just been the same until now.

I guess it started on Tuesday when dad refused food all day then in the evening he said he wanted some potato and gravy followed by homemade rice pudding not the tinned "muck" as he would say...lol
All day Wednesday he wasn't quite "with" us and refused food all day only had tea and lots of lemonade it seemed he couldn't get enough lemonade.
Even the nurse who came to give him his tummy injection decided not to give it to him as she thought it would upset him.
Then on Thursday morning he seemed a little worse very quiet even when we turned him to clean him which we thought was unusal as he'd been quite vocal upto then when we moved him.

Once again when the nurse came to give him his injection she decided not to give it to him as he was then getting quite upset if anyone touched him even just stroking his hand he moaned and said get off so she said it would be better for him to leave again after she had gone at 3.30pm we noticed a change in dad's breathing more deeper and he used to give 2 really big deep breaths then went so shallow you could hardly see his chest moving at the time we thought he'd gone into a deep sleep so of course left him but when my brother came to visit at just before 6pm and we went to talk to dad he didn't respond even stoking his hand or forehead he just lay there breathing like I mentioned above.

Of course this now got us worried so I called the doctor I was just too late to catch the surgery so had to talk to the emergency doctor which luckily it was one that had been to see dad a few weeks ago so he had a fair idea what was going on, when I explained what dad was like he said it sounded like he was unconcious and this looked like it was the end but he'd also known patients to be like this and then come the morning they had woke up and wondered what the fuss was all about.
He advised that all we could do was sit with him and talk to him to let him know we were there and he wasn't alone because as everyone knows the last thing to go is your hearing.

Dad had been like this since 3.30pm at 8pm we thought we would just wet his lips as they looked so dry we told him what we were going to do and as Claire gently stroked his lips with a damp sponge he got really irritated and agresive swinging his arms about and moaning to get off.

Thursday night I was expecting to be a bad one but surprisingly it was very good and passed quite uneventful until 4 am Friday morning.
He seemed like he was in more pain even though when you asked him and by now we couldn't really understand what he was saying but he made it quite clear that he didn't have pain but we weren't convinced. On Monday the doctor had prescribed dad some orimorph it's a kind of morphine in liquid form so that it can be swallowed easily not the injection type also it's the sort that you can't overdose on so she said that when he got pain if after an hour one 5ml didn't work to give him another and so on if nessarsary until the pain was under control.

This had worked great especially if we gave it to him about half an hour before moving him it seemed to take the edge off the pain.
Anyway at 4am Friday when he was in pain I tried to give him some orimorth and he totally refused he closed his lips and started swinging his arms about and wouldn't take it.

I felt so helpless knowing I couldn't do anything to help. So I called the emergency doctor it wasn't the same one that I had talked to earlier (I wish it had been) because when I explained the situation he wasn't helpful at all he just went on about having a pump fitted that administed morphine at regular intervals and to contact my own doctor in the morning about setting it up!!!
I don't know if I wasn't thinking straight but I just accepted what he said and put the phone down instead I should have asked why he wasn't coming out to ease dad's pain then and there and afterwards I thought what would have happened if that had been the point of dad dying and he'd died in pain!

So we tried to comfort dad as much as he would let us as he was very agresive again and wouldn't even let us touch his hand.

I called the surgery at 8am and asked if our doctor could call us before she started morning surgery just to advise us what to do, she said she'd get in touch with the district nurse and arrange for them to bring the pump out she didn't seem at all happy when I told her about the emergency doctor not coming out. She said that she'd try and get to visit but she was very busy with surgery in the morning, a meeting in the afternoon and then had to pick her kids up but she'd try and get sometime she also said that things wasn't looking too good and she thought that dad wouldn't last the weekend out.

Two nurses (Roland and Sarah) arrived just after mid day luckily just after I had spoken with Dr Driver at 8 I was able to get dad to take 10ml of orimorph so that helped a great deal until the nurses arrived.

When they arrived everyone thought it would be really simple and they'd get it all set up with no problems.. how wrong can you be!! No one had reckoned on my dad and taken him into account...lol.

Actually by the end I felt sorry for Roland he really did his best but there was no way dad was going to let him inject him first so that he'd be painfree and sedated until the pump with it's cocktail of drugs started to work. Eventually Roland gave up and said that is dad really didn't want it then he wasn't going to go against his wishes but he said that he'd need to make a phone call to the doctor to let her know what was happening he went through into the kitchen to do this when he came back he said that he'd just missed her and that she was already on her way to see us. While we waited dad was really upset and couldn't stop crying we all talked to him to try and calm him down and just when we thought he had he would start again.

When Dr Driver arrived Roland explained everything to her and she said right everybody out I want to have a word with your dad on my own. She didn't say it nastily as she explained when she had finished and came and told us we could go back in it was because she felt that with everyone being there it was making dad feel like he was being "got at" ganged up on if you like.

Anyway I don't know what was said but whatever it was she had got him to agree to have this injection and the pump to be fitted.
It would contain morphine for the pain and a seditive to calm him down and stop the aggresion against us.
He still shed a few tears while it was being set up but wasn't too bad.
Not long after the injection he settled down and actually fell into a gentle sleep.
Dr Driver stayed until 1.20pm until everything was in place even though she had a meeting at 1.30! She also gave us her cell phone and home number just in case we need her over the weekend even though she's not on call. She has been brilliant through all of this, she is one of these unsung heros that you hear about.

Later that afternoon Jackie the Macmillan nurse came to see how he was, both Roland and the Dr had contacted her to let her know how things were and after seeing him she also agreed with what Dr Driver had said about him not lasting the weekend.

During the evening dad started his weird breathing again where he did two deep breaths then some so shallow that if you couldn't see the pulse at the base of his throat you would have thought he'd stopped altogether. We timed one of these episodes and they lasted 20 seconds each time so in every minute he looked like he'd stopped breathing for 40 seconds.

Claire and myself worked out that she would take the early shift from 7.30pm til 1am while I went to bed then swop. I was a little early as I woke up at midnight so decided to get up, Claire said he'd been moaning a little like he was in pain and he also did the same with me every so often, that is one thing we will have mention to the nurse when she comes to refill the pump for the next 24 hr dose also another thing that we'll have to mention is that he is still slightly aggresive, at one point he opened his eyes so I started to talk to him and automatically stroked his forehead he moaned twisting and turning his head and not very nicely mumbled get off.

As I write this it's now 7.30am and although he's sleeping it seems like a troubled sleep as he's contorting his face every now and again, unless it's a sign of pain fighting through the drugs.
To us he seems like he is fighting death I just wish he would give in and let go.

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Tired (again)

Fri, 15 Jul 2005 05:55:53 +0200

Friday July 15th 2005. (4.30am even earlier then the other day)

Dad spent most of yesterday sleeping and when he was awake he was very down and sometimes confused he just couldn't get his head around where he was even though he remembered other things about the here and now, like the nurse visiting in the afternoon.
As well as dad being tired it also caught up with me and I felt like I could sleep for a week yet when I went to bed last night (thursday) and I went to check on dad at 2.30am I went back to bed and couldn't sleep. Either the mind or the body can be so cruel at times you would have thought they would have taken advantage of the quiet spell and got some sleep while they had the chance but no, I was tossing and turning and so's not to disturb hubby I got up at 3am.

Made a cup of coffee and watched a tv programme that I had taped from the night before then answered some emails, 2 in particular they were to the very nice people that made a comment in my last entry of my blog, thanks again Myriam and Mark your comments were much appreciated.

Even though I don't want to lose my dad I keep thinking when is all this going to end? So that he doesn't have to suffer anymore.
When he is alert and "with it" he's so frustrated that he can't get out of bed and it makes my heartache to see him this way and no matter what I say it doesn't help him the frustration is still there, to be honest I think when he is confused it's better for him as he doesn't think about being "trapped" in bed and he is off in a world of his own and at times that can be quite amusing to everyone including him, we don't laugh at him but with him.. I am going to be so lost when he goes!

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What is normal?

Wed, 13 Jul 2005 13:01:02 +0200

Wednesday July 13th 2005.(very early 5am)

Since I last wrote, over the last few days everything has just gone on as normal whatever normal is...smiles. Although, dad has complained a little more about some pain in his tummy and round about his left ribs, he's also been coughing more and sounds chesty. Dr Driver was due to visit sometime this week but with him having the pain and the cough we asked if she could call yesterday (tuesday).

She checked him over and couldn't find anything significantly wrong with his tummy or his ribs but she thought he might have a slight chest infection so prescribed some antibiotics also some stronger painkillers in case the ones he's taking stops working as good at some point she also gave him some morphine syrup but that is only to take when the stronger painkillers don't seem to be working after an hour.

He got an appointment through the other day to go to the hospital for a check up we don't know if it is for a follow up of the radiotherapy or a check up for the 2 weeks he stayed in hospital as it's the same doctor that he saw while in there and who also did the radiotherapy. I asked the dr while she was here if the appointment was nessersary she thought in her opinion it wasn't as it wouldn't be fair to pull and push dad around only to be told what we already know that there's nothing else they can do but she still asked dad if he wanted to go and he said "no, no more hospitals" and at that point he became tearful the dr was brilliant she calmly talked to him about his feelings about dying asking if he was afraid to die which he said he wasn't but she still went on to say that there's no need to be and generally talked about meeting other members of the family again and that there would be a great big party once he got there. Dad isn't religious and has never been to church other then for births, deaths or marriages but the dr said that if he thought it would help to talk then our local vicar/minister would visit and chat with him he said he would think about it.

About an hour after she had left dad broke down again personally I think after his chat with the dr it is now starting to sink in and that he's finally realising that this is the end I asked did he want to see a minister and he said he was still thinking about it, in a way I hope he does as I feel it would help but that could be because I do believe in an afterlife and there is something better when we die but he might not so I won't push the subject unless he wants to.

I checked on him a couple of times in the night and the last time at 2.20am he was awake I asked him if he was okay and he said he couldn't sleep so I said I would sit and chat with him for a while, I made him a hot milky drink and we sat chatting about this and that until about 3.45am when he seemed to drift off to sleep but I kept checking on him and at 5.20am I asked if he'd managed to sleep and he said not much just dozed.

I feel he's worrying about what the dr said yesterday yet when I ask he says he doesn't know why as all it is now is a waiting game.

Will ask him later about the minister again...

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Quiet night

Sat, 09 Jul 2005 08:42:48 +0200

Saturday July 9th 2005

It's 7.30am and it's been a quiet Friday night, I woke up at just gone 11pm so thought I would go and check on dad and he was sleeping peacfully.

(By the way I forgot to add on yesterday's blog when he woke during Thursday night he had complained of feeling dizzy when I mentioned it to the nurse he said it could be because he's anemic.)

I then woke again at just gone midnight and other then having kicked his bedclothes off he was still sleeping peacefully so I covered him back up without waking him and the next time I went to him was at 4am when I got up and he was still as I had left him earlier, I don't know why and I know I shouldn't complain as I also get some sleep but these sort of nights worry me I guess it's because now these aren't what we call normal nights and expect to be called or if we check on him he's awake of something but when he's actually just laying there quietly it worries me...Going to have another cup of coffee so more later!

Early afternoon 13.50.
The family said I could go out and have some time to myself for a while so I went and did a bit of shopping in Hull for a few hours on the way back I passed a strawberry field that is a "pick your own" so thought I would stop and pick some for tea and have strawberry flan and icecream.
When I got home they told me dad had been asleep all morning and when we went to see what he wanted for lunch he said he didn't want anything and would have something later. I've kept checking on him and he's been asleep ever since, told you earlier that he's seems to be sleeping way too much with last night and now today.
Below is a photo I took of dad after we had given him his wash and shave this morning if it look like he's asleep already he isn't as the photo I took after this he looked at the camera for me...

There might be an update later after the nurse has been.

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What a differance a day makes

Sat, 09 Jul 2005 07:54:05 +0200

Friday July 8th 2005.

After Wednesday you would not believe what dad was like on Thursday, he was sat up in bed laughing and joking the best we've seen in a long while.
After the nurse had been in the afternoon we tried the hoist out...lol.. oh boy.. that was funny..lol.
we managed to get the harness on dad okay and attached to the winch like thing ( will take a picture of it later and post it here so it gives you an idea of what it's like) then we highered him off the bed and moved him over his wheelchair and lowered him down into it. It went quite well except for the above mentioned funny bits, all the time dad was joking about zooming around while sat in the harness, believe me there is no zooming that can be done in it..lol.. then as we lowered him into his chair we accidently knocked his bunion he didn't complain just said.. "that's it knocking my toes off now"...lol.
Once in the wheelchair we wrapped him up well with a blanket and took him for a walk down the road, he quite enjoyed the fresh air and change of scenery.
The next bit of fun began when we returned, he said he wanted to sit in the living room for a bit so we attached him to the hoist and tried to move it into posistion over a chair but the chair was too big for the hoist to fit round so we had to give that idea up and put him back in the wheelchair all was going well until as we were lowering him he said: "I need to go to the toilet" and he wasn't meaning for a pee as he has a catherter bag fitted so you can guess what he needed to do..lol.. We told him to hold on if he could as we hurrying as fast as we could but just as we were lowering him into the wheelchair he said: "Too late" and laughed..lol.. we all started to laugh we couldn't stop lowering him as there wouldn't be any point now so just carried on.
Please use your imagination now, imagine someone being up in the air hovering then lowered down into a chair after stating that it was too late.. ohhhh yuck!...lol.. we were all in stitches laughing.
Once he was back in the chair we then had to take him back to his room to be put back into bed before we could clean him so we were all thinking the worst as you do when it came to taking a "look"!

Here comes the surprise ( hope no one is reading this while they are having a meal..lol) It was only a small amount and quite hard so the mess was minimal, so not quite the mess we were expecting.
Anyway the rest of the afternoon/evening passed relatively quietly thank goodness.

During the Thursday night though things weren't as good he pressed the bell twice the first time was about 1.30am he had woke up totally confused and didn't know where he was he was also asking if my brother had arrived yet to come and pick him up. We calmed him down and explained it was the middle of the night and that my brother would be all tucked up in bed fast asleep and would visit tomorrow but he was a little destressed as he thought my brother wouldn't know where he was we explained that everyone knew where he was and knew he was safe, he seemed to accept that and settled down again.
The next time he pressed the bell was around 2.45am this time was because he'd messed himeself although while we were cleaning him up he was still confused as to where he was. By the time we had finished both Claire and myself didn't see any point in going back to bed so we knew Friday was going to be a longgggg day!

Friday evening
I wasn't wrong it has been a long day, dad has had a so so day today. In the morning he had a visit from 3 of his friends from where he used to live and who he also used to go bowling with so that broke the morning up for him with a few fresh faces to see and chat with and also gave us a small break.
I have to say I wasn't happy with the district nursing today, dad is supposed to have his injection between 2pm and 3pm, certain injections are like that where they have to be given at a certain time everyday.
The nurse still hadn't arrived by 3.50pm so I called them and left a message on the answer machine saying I hoped he hadn't been forgotten.
Dad has a report book where the nurse adds a report each day saying what has been done, what dad is like that day etc, at 5.15pm I was saying to the family that if the nurse didn't turn up today then in the morning I was going to record the fact in the report book, luckily as we were talking about it he arrived.
He couldn't apolgise enough and said that he'd had people dropping like flies, now I can understand emergencies happening but a phone call wouldn't have been too much just to say he would be late.
What he also added was that he didn't know dad was on his list of visits until he got back to the office and the head nurse asked him if he'd been because of the call I had made earlier, he said no, because dad wasn't down on his list, the head nurse explained that he was and he had to come out right away and give him his injection. Then he was complaining to us that everyone had now gone home except him!

This is the hoist with a picture of the harness underneath...

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Feeling bad

Thu, 07 Jul 2005 07:44:50 +0200

Thursday July 7th 2005.

I feel really bad this morning, Once I'd turned off the laptop I settled down.
At 10.30pm dad started to get a little destressed I asked what was wrong and he told me he'd messed
himself I went to fetch hubby to give me a hand at cleaning him up and by 10.50pm he was all clean and snuggled down again but once I got back into bed I kept getting woke up by his matteress inflater every minute or so and also by the lamp that was close by even though it's a touch lamp and was on it's lowest setting I tried to ignore both but by 1.20am I thought this is no good because if I'm not getting any sleep I won't be any good to anyone come tomorrow.
So I gathered up my pillow and a couple of blankets and headed for the sitting room which is just across the hallway from dad's room.
I thought if I could fall asleep on the sofa with the tv switched on that is tuned in to dad's "camera" that way if he shouted out or made any noise at all I'd hear him and also if I did wake I'd be able to just glance across and see that all was well but at least I'd be able to get some sleep.

I wish now I hadn't done that.

Everything went well upto 4.10am when I was woken by hearing talking in dad's room, Claire was there talking to him, I heard her say where's mum? Then she came to the living room, she asked me if I'd rung the bell that is beside dad's bed I told her no and explained what had happened. It turns out dad had rang it because he needed a drink because he felt very thirsty and couldn't reach the cup himself I feel bad because I wasn't there for him when he needed me and also because Claire and hubby (there's an alarm in our room also) was woken up just because he was thirsty when I should have been able to see to that without disurbing the whole household.

Anyway while we were all there we were able to move him further up the bed and make him more comfortable and as I write this at 6.30am he is fast asleep again...
There might be more later depending on what might happen today.

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Funny old day

Thu, 07 Jul 2005 07:43:54 +0200

Wednesday July 6th 2005.

What a weird and funny day it’s been.
When we first went into see my dad this morning like yesterday he was really tired in fact he seemed more so because usually he’s chatty while we wash him but this morning he just seemed like he couldn’t be bothered and just sat there and let us get on with it.
For breakfast he did really well and ate all of his bran flakes whereas usually he leaves some but one thing that was different was that even though I have to feed him he can use a feeding mug to drink himself, today he asked me to do it.
After we had finished we went to do some housework but kept checking on him during the morning. His sleep seemed to be a lot deeper then normal and when it came to lunch time I knew that he wouldn’t be able to eat anything of substance so I gave him a fortisip that the doctor had prescribed and earlier in the morning I had made him a rice pudding and he quite enjoyed that, once again he had me doing everything and when we spoke to him it was an effort for him as soon as he’d finished eating he went to sleep, again into a very deep sleep that had me worried so I called my brother and said it might be a good idea for him to come and visit as I felt that this was the end.

When my brother arrived he went to say hi to dad but dad barely said hello before he drifted off again, so we went into the kitchen to chat we decided there wasn’t any point calling out the doctor as there wasn’t anything they could do and also the district nurse was due to give dad his daily injection and if she thought it was necessary then that was okay when my brother decided to leave he went to say bye to dad and dad didn’t acknowledge him, we were certain he wouldn’t last much longer.

An hour later at 2pm the district nurse arrived as we walked towards the bedroom I explained how he was and told her I thought this was it. When she talked to dad when she walked in he also wasn’t responsive and she thought it wasn’t worth giving him his injection and riving about but she had to call the head nurse to see if that was okay she said it was if we agreed which of course we did as we didn’t want to put him through being pulled around before she left his room she had another go at talking to him and this time he became quite upset like he was saying leave me alone.

When we went into the kitchen I asked what she thought and she said that if he’d been totally unresponsive he’d only have hours left but with him reacting a little it could be one or two days. She said that if he didn’t feel like eating or drinking then not to worry because as your organs start to shut down they don’t need food or drink and he won’t be thirsty and won’t be suffering in anyway all we could do is keep his lips moist with water.

She also explained the procedere for when he died about calling the doctor, first then the undertaker then of course the family. She stayed a little longer chatting and had a cup of tea.

I needed to do some shopping so I called hubby to see if he could come home a little sooner from work as I didn’t want to leave my daughter alone just in case anything did happen, I was away just over an hour and when I got back dad was just the same, it was about 4.40pm.

We made sure dad was comfortable and then we had our tea, when we had finished it was around 5.50pm, we went to check on him and he was awake, so I asked him if he fancied anything to eat he asked what was there so I reeled a few things off and he settled on some porridge which he really enjoyed but what really surprised us was that he was chatting and laughing and he also managed to give himself a drink. In fact he was back to what he’d been like a couple of days ago, We couldn't believe it. If like us you had seen him earlier in the day and what he’d been like or gone by what I have said above then seen him after he’d had his tea you would have thought I’d made it all up, I’m so pleased the nurse saw him that way because if he’s still like he is tonight then she will see how much he’s change because like us she also thought that the end was near.

I‘m not that stupid to not know that he could go back to how he was earlier so I‘m not taking any chances so sleeping in his room tonight so that I can keep an eye on him.
As I write this on my laptop it’s 9.20pm and he‘s sleeping peacefully at the moment. So I think I
will shut everything down and get some sleep while I can..…night all..More tomorrow.

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Dad is very tired

Wed, 06 Jul 2005 08:35:17 +0200

Wednesday July 6th 2005 (early morning)

On Monday our GP, Dr Driver came to see dad just to do a catch up from him leaving hospital and to see if he needed anything, seconds after she left Roland the district nurse came to give him his injection and to check his pressure sore dressing, then about an hour later my brother and sister in law came to visit they stayed about an hour. Since then he has been really tired, washing him, changing the bed clothes and turning him wears him out. He slept most of yesterday and when he was awake he was very confused.
The hoist also arrived yesterday morning, so while Roland was here in the afternoon he gave us a demonstration on how to use it. To be honest I don't feel my dad will be upto using it.
Jackie the MacMillan nurse came around lunchtime she was supposed to visit today (wednesday) but she said she was in the area so thought she'd pop in. She also was just doing a catch up to see if we needed anything. But we seem to be doing everything right as both doctor and nurses keep saying we are doing a grand job and that there doesn't seem to be any need for them...lol
Today we're not expecting anything unusual to happen only the visit from the nurse other then that it should be a normal day..( I only hope I haven't spoke to soon..smiles)

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First day home

Sat, 02 Jul 2005 10:10:35 +0200

Saturday July 2nd 2005

Dad arrived home yesterday around 4pm, it was a case of dump and run by the health crew that brought him home, they just lifted him onto the bed and said there you are we'll leave you to it and then left. I have to add it wasn't a "proper" ambulance that he came in it was a patient transport one but I was told at the hospital yesterday morning when we went that when they dropped him off they would make sure he was comfortable and sort out his catherter to make sure it wasn't twisted etc but they did nothing like that.
The reason me and Claire (daughter) went to the hospital yesterday morning was to get a bit of training from the nurses so that we'd know how to give him a bed bath and also how to turn him properly without hurting him or us.

I'm so pleased we did because when I went in at 5am this morning to see how he was and if he wanted a cup of tea the catherter had become blocked during the night and leaked, so he was sat in a sodden sheet of not just urine but blood as well from the tumour in his bladder that is causing him to bleed.

So me and Claire set to and gave him his morning wash and clean up, I know it was very early but there was no point in just cleaning the bottom half and not doing the full wash and shave only to come back a few hours later to do that.
Actually I'm quite pleased on how we got on considering it was our first morning and we'd never done it before, it only took us an hour to gather everything we needed together, to wash him from top to toe, roll him both ways so we could change the sheets and put clean ones on and give him a shave. Sorting the blocked catherter put another hour on top of that as we were trying all sorts of ways to clear it but nothing worked, so I called the ward where dad had been and explained the situation, the nurse said in a case like that it is easier to just change the bag for another one, I told her that we hadn't been taught how to do that so she went through it with me step by step but she did warn me that if we didn't hold it just right the urine that was still in the pipe would go all over... :-( Now after the sad face I can put a happier one :-) because we did as she told me but we must have done it extra specially good becuase we didn't spill a drop..lol..
So about 7am dad had his breakfast, I had to feed him as he's not capable now then settled him down before I went to start cleaning up ready for the district nurse later when she comes to give him his injection for the blood clot and as I write this I have just finished doing the hoovering and checked on dad and he's sleeping peacefully.

Later in the day.
The nurse was right on time she came around 2pm and was here about an hour, she wanted to be brought upto date on how he was feeling and asked if we had everything we needed. He was a little down and told her he'd like to get out of bed but she told him that his leg is very weak from the blood clot so wouldn't be able to stand and even with help from us it would be too much for him and us but she said she'd arrange for a hoist to be delivered sometime next week so at least he can be put in his wheelchair and be moved from his room for a change of scenery. She gave him his injection then checked his pressure dressing on his bottom, all in all she was very pleased and said that we were doing a really good job.
An hour later after she had gone my brother and his family came to visit dad but half way through dad became tired and just drifted off to sleep as we carried on talking..lol..they stayed an hour also then we got him his tea, he wasn't very hungry so had a small asda trifle followed by a banana flavoured fortisip drink the doctor prescribed them for when he didn't feel like eating they are full of all the vitimins and calories that he needs. We then left him watching a tv programme called "animals do the funniest things" while we went for our tea.

Here is one view dad can see from his bed...

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My father's life ending

Fri, 01 Jul 2005 07:19:45 +0200

All that is below was writen over the last few weeks until the end where it is upto date after I have submitted this entry I will try and keep adding to it each day.

I've heard of the near death experiance and before I've just thought that the people that told of going through this had maybe had a very vivid dream of some sort but after the other day and what my dad told us when we went to get him up that morning I've now changed my mind and think that there could be something in it.

About 2 years ago my dad developed bladder cancer, after a short course of chemo they said they had cured it and for a while afterwards he had to keep going for check ups with regular visits to the hospital for a camera into his bladder to make sure all was well.

At the end of November 2004 the doctor sent him for a CT scan, 10 days before Christmas we went for the results, which weren’t good. The scan had shown he’d developed cancer in his left lung and they wanted to take 20% of his lung away. The operation was arranged for 25th January 2005 but in between the results and his lung operation he started bleeding when going to the toilet. He said he’d wait until after Christmas.

On 2nd January 2005 he went to the doctor, who sent for an ambulance straight away and he was taken into hospital where he stayed for about a week. The doctors did a few tests but still didn’t know why he was bleeding so they took him down to theatre and had a look with the camera, they said that the lining of his bladder was bleeding so they cauterised it. This seemed to solve the problem and he came home until his lung operation.

He went in on the 24th January and had the operation on the 25th and was sent home on the 30th.(He came to stay with us until he was well enough to go home). At first he did really well and was going for longer walks down the road each day. Then he got a chest infection and was treated with antibiotics, that cured it but he never got his energy back to go for the walks and from then until now he’s got weaker and weaker so that he now has to have someone with him whenever he gets up out of his chair for any reason, he has to be helped get dressed and showered in a morning and also at bedtime.

When he got so he had to have help doing things we realised that even if he did improve we didn’t think it would be enough to be able to look after himself at his flat so after we had talked it over with him we agreed between us that he should come and live with us permanently.

A few weeks ago he started bleeding again from his bladder so the doctor arranged for his check up with the camera to be brought forward and he went for that on the 10th May 2005.

All the while his GP has been taking regular blood tests and the day after, on the 11th May 2005, she came to the house to tell him that she wasn’t happy with his latest ones and that she’d also got the results from his bladder exam from the day before.
The blood test seemed to indicate the cancer could have spread elsewhere but also the bladder exam had shown it had grown again and was now inoperable.
There is now no cure but she said they could arrange to give him a course of radiotherapy to shrink the tumour to make him more comfortable and hopefully at least stop the bleeding.

He started the treatment on Wednesday May 26th 2005 for 5 days with a bank holiday weekend break in between so finished on Thursday June 2nd 2005.

When he finished the radiotherapy one of the side effects was going to the toilet more often it seemed to be about every 15 minutes but that has now stopped, during the two weeks after he finished we noticed little things starting to happen that wasn't before nothing major just the odd thing,like him getting weaker and needed more assistance when walking, wetting himself even though he'd stopped going so often the district nurse thought it best if he started wearing a pad all the time just in case of "accidents".

Then one night we had real trouble getting him upstairs to bed so we decided it was time for him to have a bed downstairs, another little thing we noticed was it got so we couldn't get him to the downstairs toilet in time when he did actually tell us he wanted to go so we had to have a commode in the living room and now it's got to the point were he can't walk to his room because he's so weak so we have to take him in his wheelchair.

Mentally upto today he seems to have been fine.

Now I come to the point of what I said at the beginning... On the 15th June 2005 when we went to get him up for the day he wasn't in his usual
posistion of sitting up he was laid flat out which he's never been since he got home and he'd kicked all his covers off. We knew right away something was wrong so I just chatted to him in general asking if he was okay and if he had any pain when I got closer I saw that his eyes where wandering around the rooom as if he was trying to reconise where he was and he started mumbling something which I couldn't understand.

We immediately decided to call an ambulance and while that was on it's way we sat and chatted with him, at first he was saying stuff we couldn't understand but after gently asking him certain questions he began to tell us his story, before he began he was feeling around the bed as if trying to find something we asked him what was wrong and he said "I can't find that piece of wood" we asked what piece of wood? he said "the one that man gave
me" we asked him what man? and that's when he started his story.

He thought he was in hospital because a man dressed all in white had come to collect him and when this man came to the house my dad said I was stood at the door trying to stop him but didn't succeed, he took him down this long corridor that was briliant white he said he'd never seen anything so white and shiny and every door that they went through it opened automatically into another brilliant white corridor he said at times they would be walking
and at others they'd trot I asked him did he have his walking stick or was the man helping him as he can't walk without help, he said no he was walking all on his own he also said that on the doors were 3 little (about 3" tall) lions and as they walked through the doors the lions would jump down and run around thier feet and he said the man seemed to follow them and as the lions went trhough the doors the were slipping and sliding and when my dad and the man followed they were slipping and sliding also.

Eventually after a long while they came to the end of the corridor he said it seemed like they had walked miles and as the door opened he could see into the room which was also brlliant white and the man went through the door but wouldn't let my dad follow him and that was the end of his story he then focused about the room and said "is this where I'll be staying," we asked him where he thought he was and he said "in hospital of course" we told
him he was at home and had always been here.

By this time the ambulance arrived and they checked him over and thought with him not being in pain and seemed only very confused it might be best not to put him through taking him to A & E as he might be laid on a trolley for hours before they took him to a ward so they suggested calling our own doctor and if she thought he needed to be in hospital she'd be able to arrange it so he'd go straight to a ward.
We managed to get him washed and sat in a chair in the living room he was very confused at times during the morning yet others he was fine and "normal" at one point he was moving his hands around again as if looking for something we asked him if he'd lost something and he said " I've lost my shaving soap, it was here a moment ago" we told him it was upstairs so he said "ok I'll get it later" he also kept talking about his flat saying someone must have been in because he saw someone across the road on Thursday watching him and the light bulbs had been changed ( he hasn't been living in his flat since the middle of January!) he also kept reliving his walk down the corridor with the man.

We called the doctor as suggested by the ambulance crew and when she came she told us that his blood test results from the day before was really bad and thought that his anemia could be causing his confused state and how he was at the moment and thought that a blood transfusion could help so she called the oncoligist that had arranged dad's radiotherapy and between them they agreed it would be best for him to go into hospital that afternoon and begin the transfusion. 2 hours later an ambulance arrived to take him.

I called the hospital a couple of hours later to see if he'd settled in okay they told me he was fine and was sleeping, they hadn't started the transfusion yet as they were waiting for some blood results to come back but they were hoping to start either later or the next day, I didn't think there was any point in visiting that evening as he hadn't been in there that long and if he was sleeping there was no point in disturbing him, plus I still get very tired from the side effects of my radiotherapy so to be honest just couldn't do it.

I called the hospital the following morning (Thursday), he'd had a restful night and they'd began the transfusion, we went to visit him in the afternoon and he was still really confused he kept saying "have you seen the alterations they've done to the flat? We asked what alterations. He said " Well look, there's new windows and curtains, see how they've taken the carpet up and replaced it with tiles this is going to put the rent up, we went along with him and said they'd done a good job but I asked do you know where you are? he said; yes, I'm in hospital but I don't know how I got here and I was calling for you last night but you didn't come like you usually do. Even though he was in good spirits and the things he was saying made us giggle at times it was a sad thing to see him going through this.

On Friday an hour before we set off to go visit the hospital rang to say he'd been transferred to the A & E at Hull Royal Infirmary this is the main hospital in Hull they'd sent him there for an emergency assement as they thought he might have a blood clot in his leg ( dad is in the Princess Royal Hospital where they don't do emergencies) they told me to ring the A & E to see if there was any news and also to see if they were keeping him in there or transferring him back, I called them but they told me to call back later as the doctor hadn't seen him.. four hours later!! They told me that he did have a clot but theyhad just sent him back to Princess Royal as they are hoping it can be treated with blood thinning injections and that is something that Princess Royal can do.

Over the weekend his confusion seemed to lessen a little although at times he did go off into a world of his own.

This Monday morning (June 20th) I rang the hospital to see how he was and if there was any news as to when he was coming home they told me that doctor Dealey had seen my dad and he thought his leg looked a lot better then it did before the weekend and that when he came home they'd arrange for the district nurse to come everyday to give him his blood thinning injections I asked if there was any news about him coming home and they said it could be later this week, we went to see him in the afternoon and he seemed in good spirits but when my brother went in the evening he said he'd gone very confused again.

This morning (Tuesday) I went to see my dad's GP to keep her upto date with what is happening with him, while I was there I asked if it was possible that he'd had a slight stroke last wednesday when he was at his most confused and she said that it was very likely she also asked if we were going to look after him at home once he leaves hospital I said we
had talked it over between us and that we were going to try but if we found it too difficult then we would let her know so that she'd be able to arrange for him to go into Dove house hospice. She said that was a great idea and she'd back us all the way in whatever we decided to do as she knows how difficult it can be she also said that she didn't think my dad would be still with us by the end of the summer.

When we got to the hospital tonight he was very confused but kept us and some visitors of another patient amused with his stories. One of the nurses asked to speak to me and she said that they were hoping to get a physio to come and see dad tomorrow and then they hoped he'd be able to come home either Thursday or Friday she also asked if we thought we'd be able to manage with him at home as he is now bedbound and she said that even they have trouble seeing to him, I told her that we wanted to give it a go and explained what I'd said to our GP this morning, she thought that was a good idea because if he does have to go into a hospice then the arrangements are better coming from a GP then a hospital.

As I write this it's Wednesday the 22nd June about 20 minutes before I set off for the hospital. After yesterdays chat with the nurse and also after speaking with other people we know that have been through a similar experiance of looking after someone who is terminally ill and bedbound we as a family have discussed things as to whether dad might be better off in the hospice to begin with sooner then us trying to do our best to look after him. At the hospice there would always be someone there more qualified with him should anything happen suddenly and also be there immediately whereas it would take about 20 minutes for either a doctor or ambulance to get here. I just feel that we are abandoning him and that if he is at times mentally okay and not confused whether he'll feel that also.
Dad was really bad this afternoon in fact I don't think he mentioned the here and now at all he was so confused, after visiting time was over we went to see if we could talk to the nurse that I had seen last night to see if anything had been decided about him coming home.
It turned out to be a little more serious then just speaking with the nurse as the doctor said he wanted a word with us. It seems it's now turned into a catch 22 situation because the injections which are making his blood thinner are now making him bleed more from his bladder yet if they stop them it could make the clot worse again so that it could break up and travel elsewhere so he said the situation at the moment is to just to keep observing him but with this happening it has put the end a little closer and he has now told us it could be just a matter of days or possibly weeks but no longer and he said he was sorry but he had to ask that if a time came where they had to resuscitate had they got our permission not to do so because if they did it wouldn't change things because he's going to die from the cancer anyway.(That bit I've just wrote sounds like the doctor wasn't caring or compasionate but he was, he was wonderful and it's hard to remember the exact words when someone is telling you your dad is dying sooner then you thought so I've put it plainly).
It's very hard to make a decision like that because not only do you not want your parent to die you also don't want to put them through any unnesessary pain or suffering. We told them to do what they thought best for him and if not to resuscitate was the best thing, then don't.
They are also going to arranging for someone to come and have a talk with us to see if it is feesible for him to come home or send him straight to the hospice I told him we didn't think we'd be able to cope now he's got worse so he said they'd still have someone come and speak with us to see which is the best option.

Today (Thursday 23rd June) when we went the doctor said that his urine was looking much better so they are going to start the injections again but he's now dehydrated with not eating or drinking properly so while we were there they put him on a drip he also wasn't as chatty as yesterday in fact even though he was confused yesterday you couldn't shut him up..lol.. but today he's entirely opposite and slept most of the visiting time.

Friday 1st July dad is coming home this afternoon as things have improved a little and there's not much else they can do now, he's still very confused at times and he has good and bad days with that.
His bladder had stopped bleeding over the last couple of days but when we went yesterday it had started again but I don't think anything will stop that now seeing that the tumour is still there.

A hospital bed arrived for him yesterday, wow, it's amazing it's motorised so that the head tilts as much as you want for sitting up the middle bends up a little as far as you want so that his knees will be slightly bent if he feels like a change of posistion the bottom raises if needed and of course you can also higher or lower the height to save hurting our backs while seeing to him they also supplied an air matteress that plugs into the mains and it keeps inflating and deflating at differant parts so that it helps prevent pressure sores although he already has one on his bottom.
We've also set up a baby alarm so that he only has to speak if he needs us and we'll hear him, that is mainly for during the night or if we are busy elsewhere maybe hanging clothes on the line outside or just generally out of hearshot it clips onto our belts so it is with us all the time, there's two portable units so I have one and my daughter has one.

Later if needed when he gets worse I will sleep in the same room we have already set up a single bed in there so there will be no panic to get it done once it happens. I know this might sound a bit "Big Brotherish" and an invasion of privacy but we've also set up a cctv camera pointing just at the bed because while he's been in hospital he attempted to get out of bed several times even though he can't walk and it has cot sides. This bed also has cot
sides but it worries me that he'll try and do the same here and if he did fall out he could break a bone or something worse like knock himself out if he banged his head so the idea of the camera is that when we are in another room we can keep checking to make sure he's okay it also has sound so like the baby alarm if he needs us he only has to speak.

It's been arranged for the district nurse to come daily to give him his blood thinning injection for the blood clot, they say it's coming along fine but the injections are a six week course so he has another four weeks left.

Our GP Dr Driver has/is been fantastic if there was another word better I'd write it I can't give her enough praise while he has been in hospital she has rang here several times to see how he is doing and yesterday the nurse said she'd rang the ward to see how he was and she said she'd never known a GP to do that before.

Here is a picture of my dad taken a year ago...

Here is one of him taken on May 12th this year 2005

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