Terri75's blog

Dad passed this morning

2009-12-21T19:04:38Z

It is with much sadness to say that my dad passed away at 6.40am today. He was pretty unresponsive at the end of last week. I found out from one of the nurses on Thursday night that this was the end, I attended a appointment with mum and dads doctor on Friday so mum could be told this news. From Friday I basically never left his side from then, it was the ongoing joke that I had moved into the hospice as I was only at home for a couple of hours on Saturday for clothes. Me and mum stayed at nights taking it in shifts to be with dad during the night so he was not alone. The hospice staff was brilliant with us and dad they always spoke to him in the nicest manner. Yesterday morning me and mum was talking to dad which we done most of the time but he was responding to our touch on his head or face he was lifting his eyebrows. We think that he was putting up a protest last night because me and mum was watching dirty dancing in his room there was some colourful noises coming from dad, we managed to keep spirits high as dad would not want us to be upset. This morning I was coming back to dads room from the relatives room I was having a sleep, I got along to the room and they had just realised he had passed, it was so peaceful, mum was talking with nurses and mum realised that he wasnt breathing he had went that peacefully and for that I am so glad. We spent some time with him then I went to phone my husband and my uncle to come to us. The hardest part was leaving him at the hospice I had managed to stay so strong till that part then I just lost it. I then spent the rest of the day calling family and going to see family to tell them and then I went to the funeral directors to get that ball rolling, I am now just done in everything has caught up with me now and I think it is now starting to sink in that I wont have another conversation with him. His funeral is going to be next Wednesday morning. We have my grandson coming up for christmas day and I have manged to get mum to come to be with us on christmas day as I know the little one will take her mind off things for a while, especially with it being white up here we can play in the back garden.

On a lighter note

2009-12-17T12:35:27Z

I just nipped across to see dad on my lunch break, he was sleeping when I went in so I gently rubbed his arm and said Dad. He wakened up he wasnt able to say much but he could shake his head yes or no or puff his cheeks out to indicate how tired he is, I managed to get him to take a sip of water, he asked where my Mum was and explained to him I could come over now on my lunchbreak because he is in a room by himself. His eyes started to roll again so I left him to slepp and have enough energy for when mum goes in this afternoon, he managed to pucker up for a kiss and winked at me when I left. So a bit better today.

Update 16/12/09

2009-12-16T18:18:10Z

Theres not been much change today dad is still pretty unresponsive today, they have moved him into a room by himself which means I can pop over on my lunch break to see him now instead of waiting till half 5. He opened his eyes a couple of times and slightly acknowledged we was there he was mumbling but nothing coherent. Today is another day we will see what happens.

Trying times

2009-12-15T18:58:38Z

Dad seems to have taken a turn for the worst, he took ill on Sunday and went to his bed early and didnt want visitors that night. Yesterday he was sleeping again when I was in, he just wasnt himself and we left early to let him settle in bed and sleep. I called the hospice this morning as usual and they said he was worse he was now hooked up to a drip and on antibiotics for a infection he also said that the doctor needed to see me and mum today which I found unusual because we had a appointment with her tomorrow afternoon. I knew it wasnt going to be good news, when we got there the doctor told us that she thought dad had had a stroke as his mouth was drooping slightly also that he has went down hill in the past day we just have to give the antibiotics a chance to work and take it from there so the next 48 hours are critical. We went to see dad after we had talked with the doctor and they had given him a injection because he was feeling sick, well this has just knocked the stuffing out of him he was lying there eyes open but sleeping he looked awful I only saw him yesterday and he didnt look bad but today was the 1st day that I had to choke back the tears regarding his appearance me and mum have been very good at that we dont dad to see us upset but today was tough. I just hope we have the strength to get through the next couple of days.

Apologies

2009-12-11T00:14:57Z

My apologies to people who have been following my blog.

Dad is still bumbling along in the hospice slowly getting worse, there is a chance he may get home for christmas. He is basically stopping eating just now, he is like my 3 year old grandson when I ask him why he didnt eat his veg. Its the highlight of my day asking dad what he had for tea that evening and what it was like, I have had "how they expect anyone to survive on that", "it was shocking even the nurses said it didnt look nice" my favourite by far was when he had a salad I asked how it was and was told the salad was "chewy" I repeated "the salad was chewy" just to check he was saying the right thing and he said yea, I have to say that is one of the moments I think will stay with me when he is gone. He falls asleep a lot just now which is normal I am told we learn not to take is personally but frustrating when he falls asleep in the middle of a profound conversation.

Sorry I am away to have a feel sorry for myself moment - all this has caught up with me I had the doctor on Tuesday lunchtime and found out I have a major bladder and kidney infection apparently I have had it a couple of week and just never put 2 and 2 together and I am suffering for it, when I left the doctors and thought about it it clicked into place when I looked back over the weeks. Now I am in total agony with it my stomach is so sore, I have a extra tube in my kidney which makes getting rid of infections harder so I havent been to see dad in a couple of days as no one in my family drives so I have been feeling very guilty about not seeing him, he says he understands more than anyone about bladder pain and can sympathise with me but I still feel guilty. I feel guilty because I have no christmas spirit this year I am finding it so hard to find my ho ho hos this year which is not me you would normally have to pluck me off the ceiling by now but not this year, I know I will have to find the spirit for my grandson on christmas day but it is so hard this year.

Sorry self pity over and done with.

T xx

Distressed

2009-11-30T21:57:22Z

Sorry I havent blogged for a while things have been hectic with Dad being in the hospice, mum does the afternoon visiting and I stay at work til 6pm to go and visit him when I am finished. He has been up and down and round about he has a good week then a awful week. Dad still has the lymphodoema in his leg, the physio is coming to look at that tomorrow. He has been fine a good patient better than he was before at the last place. Tonight worried me, he was very drowsy and couldnt keep his eyes open and I looked for all the answers to why this was happening and I could not find a reason for it. He hadnt had his breakthrough medication which makes him drowsy, he had slept during the day today, he hadnt been active during the day etc. I just dont know his breathing was not so good.

When I was sitting with Dad the nurses were changing a man in the bed across from dad into fresh pyjamas and giving him a wash, nothing out of the ordinary then this poor man just shouted 'please just let me die' I was devastated, I still dont know how I managed to keep the tears back in front of dad as I wanted to burst into floods, I then started to think that if dads like that it will break my heart. Dad fell asleep again, so I sorted his bed for him and left him to it as he was in no humour for company tonight. All the way home I cried thinking about that one line from a stranger luckily it is really frosty in Aberdeen tonight so everyone that seen the tears streaming down my face will have just thought it was because of the cold frosty air.

I couldnt see a nurse to tell her my worried about dads breathing so I called them when I got home to tell them, I am so afraid I miss something that may be important.

Dont know how much sleep I am going to get tonight.

Hospice = free 5* hotel

2009-11-21T16:55:32Z

Well dad is all settled in the hospice. The ambulance came to pick him up yesterday and they wouldnt let mum go with him so mum was really upset called me and I was upset, I think it might have dawned on her that he wont be home now as she was telling me before he was picked up that he might be in for a week and then home, I tried to gently tell her then felt awful when she called me in tears. I left work and met her to go in and see him, when we got there he was sitting in a really comfortable electric reclining chair. The hospice is beautiful, really peaceful, they have gardens in it and there is like french doors out from the room that dad is in and there is squirrels everywhere they have set up bird tables with food for them to climb up to get. We was getting his stuff put away and he has one of that patientline tvs over his bed, I went to get a card and they told me it was free there so I got it set up for him and some puddings in his fridge at the side of the bed then he said to us you can go now!! So we knew he was settled.

Finally

2009-11-19T12:32:25Z

Finally today we have heard that there is a bed for dad in the hospice, he is to go in tomorrow. He is in a lot of pain today, the doctors have been out twice this morning, they have given him a injection which I presume is painkillers so he is sound asleep just now. The skin on his legs is starting to crack and they think there might be a bit of a infection there so they have started him on antibiotics, if he is still in pain when he wakens up mum just has to call the GP out again and they may call to see if that bed is ready today. I just feel relief for all of us, mum cant see the relief yet because her heart knows that this is it. I definately feel a lot better about it because the hospice is right across the road from my work so I can be there in 30 seconds if I need to.

Back downhill

2009-11-17T21:24:48Z

Further to dad being discharged on Sunday he has not been right since but I thought it was good for mum and dad to spend some time again in each others company so I kind off let it slide, knowing full well it would only be days before we are back to square one. The district nurse came in this morning took one look at dad and told mum to call to get the GP out, the district nurse sat with dad the whole time she was there just cuddling him, she could see the decline in him. She was also disgusted at the treatment we received over his discharge from hospital. She had read his discharge letter and was expecting someone a lot healthier than she saw today. The doctor came out and looked at dads legs told mum to up his water tablets to 2 a day instead of 1 and gave dad some temazepam. The district nurse came back in this afternoon and was not happy about what the GP gave dad. The nurses are now coming in every morning to wash dad and hopefully they can get a catheter in so they will come in at night as well. Dads actual GP who has been dealing with him the whole time is coming into see him tomorrow morning and the district nurse will be there at the same time so hopefully we can get him into or to the top of the waiting list for the hospice. Its so hard for mum to watch now he is sitting in his chair with 4 layers of clothes, 2 blankets around his shoulder, 1 blanket over his legs and a 13.5 tog duvet over him and he is still shivering. I know mum feels she is failing dad in some way but all I can d is re-assure her. It is all so hard for me to watch and think about I seem to have a constant sore head just now, I just worry for them both and want the best for them both. Really feeling low tonight think its all just getting on top of me.

Sheer frustration - update

2009-11-14T17:54:21Z

I was along visiting Dad today and I went and spoke to the nurse, she said that because dad was managing to receive his medication orally he could do this at home, they know he wants to get home and they say they are doing the same things that could be done at home and he would be comfier. I agree with all that and can see it now I have calmed a little. What gets me is that since they took him off his IV fluids at the start of the week he has steadily went downhill again, he is sleeping all the time his appetite is non existant and he is barely drinking again, I know he will be back again within the next week fortnight due to severe dehydration again thats what bugs me, if we can see the change in him this week surely they can. So he is being discharged tomorrow afternoon, I have no idea how he is going to get up the stairs to mum and dads flat as his legs are so swollen, I asked them if they realised that they live in a 2nd storey flat and they said he would be fine, he can hardly get about the ward. We have to call the GP surgery on Monday to arrange a care manager.

Sheer frustration

2009-11-13T17:55:45Z

I have lost complete faith in the NHS. They was debating whether to send dad home or whether to wait for a bed to become available at the hospice. They took him off IV fluids the other night and they was to see how he was managing with drinking fluids. Both his legs have swollen up because the tumour is blocking both lymph nodes now so his legs are massive. I go in today and speak to the nurse and she tells me he has been taken off the waiting list for the hospice, they wouldnt have told us if I hadnt asked. I am absolutely fuming, he is already started the not drinking or eating he has a little food which the hospital has deemed enough. I know they are going to send him home and we will be back where we was a couple of weeks ago. Words cannot decribe how mad I am, its also a Friday which means there is nothing I can do till Monday when he is being released on Sunday.

The ups

2009-11-09T20:00:23Z

Well I had another nerve wracking day away from Aberdeen, I went so see dad as soon as I go in from Livingston and wow what a difference. He was sitting up making conversation, managing to drink a cup of tea, devoured a mars bar that I took in for him he is looking the best he has in a couple of weeks since we hit the low. His lymphodeomia is back so they are going to put on his bandage again. His veins are collapsing around him he has his drip in a different place every time I see him but all in all he is very good and very lucid now. I realise now I have to enjoy these times we have so I am going to and I am going to spend my birthday with him on Friday hopefully get him to eat a bit of cake.

Ups and downs

2009-11-06T21:14:58Z

Wow this rollercoaster we are on is bumpy. I was saying to my husband that dad is like that Forrest Gump saying 'like a box of chocolates you never know what you are going to get next'. From the sheer frustration and rage he was feeling the other night to last night when he was feeling a great deal of pain and not good at all to tonight, well what can I say about tonight. He was sleeping when we first went in so I figured he was quite sore again he woke up and we said hi then he fell asleep again so I gave his shoulder a rub and told him that we was going to leave him in peace if he was sleepy he said no dont go keep me awake. He was very lucid but then he started to tell us stories apparently the ward the other night had turned into a house of horrors and was all dark and had scary things on the walls and very morose, the next night there was a disco and a live band in the ward and there was drinks machines all around him and there was a bar, he said he seen all the drinks on top of something and when he closed his eyes for only 5 minutes he opened them again and everything was gone. Next he told me that they shifted him to the cellar and kept him there all day in the cellar. I have no idea what my face must have been like during that conversation he was insistant it happened so I had to appear to believe him. He went to the bathroom and I just looked at my husband who was in disbelief at what he heard. I presume this is just the cancer working its way through him that is the only reason I can figure for this. When I came back and phoned family to tell them I could do nothing but laugh as now I find it hilarious, maybe insanity has hit me, I also think it is good to still have a sense of humour about it all than being morbid and depressed that he is like this. So heres to tomorrows adventure................... what ever it may be.

Rollercoaster time

2009-11-04T21:22:40Z

Well I managed to go and conduct my training session, I called the hospital when I left Aberdeen and then again when I got to Elgin to check he was ok, the nurse told me he had quite a night they had to get someone to sit with him as he was so agitated he managed to take his iv line out so it is now bandaged up so he cant get to it. He was a lot brighter when I went in tonight, I made myself ill worrying that he would be in the same state again but he was sitting up in the bed he doesnt have the catheter in anymore and they are letting him eat slowly, he was babbling away and saying stuff that we had no clue what he was saying we just had to humour him. He seems now to think that because I work for the NHS I can magic a bed in the hospice for him, I have manged to get him to the top of the waiting list we just need to wait for a bed. He was saying to me 'you go to work tomorrow morning love and you call them and then call me and tell me when to be ready for.' I had to explain to him several times that it might take a few day for the bed to be there for him. My husband said me and dad was having to different conversations tonight. Its hard to see him like this he was never like this. I feel so guilty when I have to leave, like tonight I stayed for just under a hour but we was just going round and round in circles and he started showing signs that he was sleepy, I just hate leaving I know I should be getting all the time in I can with him so I am just constantly guilty that I am not there all the time spending what time I have left with him and scared that the regret burns in me after he goes. Just one vicious circle. Mum says I should take the day off on Sunday and just spend time at home before I have to go to Livingston on Monday but I feel awful for even contemplating not going in on Sunday. Mum is now asking if the hospital know what is making him so confused I try to explain it is just the cancer, she thinks that now he has rallied a bit that he is not in the final stage, I try to explain that he is still in the final stage it just was not as bad as it was at the weekend but that something had changed because he is now on the same medication he was on this time last week I just keep on saying we are on a roller coaster and its going to be full of ups and downs.

Front line definately good analogy

2009-11-03T22:26:26Z

After using the front line title in my last blog was maybe a bit psychic of me. Today I went back to work, I called the hospital this morning before I left to check dad was ok, his blood pressure had come up a little and he had a comfy night which was good news. Mum went to see him this afternoon and she said he was drowsy so there wasnt much conversation, I expected him to be pretty much the same when I got there tonight, man was I wrong. I have never seen him so worked up and angry and frustrated in my whole life. He was complaining when me and my uncle went in, he couldnt fine his glasses we found them but he wanted his other pair and was cracking up because I could not find them, in the end I said I would call my mum and ask her where they was. They was at home he never had them there, so I gave him the glasses he had there he put them down then 5 seconds later he was looking for them again we put them in his pyjama pocket, a minute later he couldnt find them. I went to talk to one of the nurses as they have him on nil by mouth so he is only getting sips of water, he has had no food since Saturday so he is starving they keep saying there is a blockage in his bowel and to my knowledge his bowels are working fine. She told me that he had go up to the toilet himself and he pulled his IV out luckily not the needle part so he wasnt hooked up to IV fluids when I was in, he has a catheter and he started fiddling about with it I had to turn as he didnt seem to realise I shouldnt see that but then I started getting anxious that he was going to rip it out, he keeps telling us storys that we have no idea what he is going on about so we just humour him because he gets frustrated when we dont know what he is talking about. He was managing to laugh a little at times, it was like looking after my 3 year old grandson, phew I hate to say it I had to get out of there I was not prepared for that at all. His blood pressure has stabilised now so I am away to email his doctor at the hospice and see if we can get him a place in there as he is on the waiting list but they needed his blood pressure to stabilise so hopefully now it has we can get him moved to a place more specialised in this. Well I better get on I have a ton of work to get through. I'll be back tomorrow with my next report.