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yanina
Posts: 17
Joined: Thu Dec 15, 2016 9:28 pm

Re: Nina's Dad

Postby yanina » Thu Dec 29, 2016 1:55 pm

hi all xxx .. finally things are looking posative , dads having a bed delivered tomorrow and a comode as hes not safe to be going up and down stairs.

some one from pallative care have been to see mum and dad, dad spoke to her about how he was feeling but mum couldnt be there while he spoke about things (too upsetting for her )

my self and my hubby ave been today (29th dec) to sort the living room out so the bed can be put up tomorrow.
when we got there mum had been crying, but didnt know what for. she went up to see dad in bed early this morning and he was crying and he asked her to lay on the bed with him, mum thought he was going to pass that very moment. he told mum he would hold on as long as he could for her.

after a while i went to see dad as he was still in bed, asked if he was ok, i knew something was wrong, this is wen he had a total melt down, we say and cried together and he asked me to look after mum.

im promissed and assured him i would and she would never be along. this was heart breaking as my dad clung onto me like a child who was scared to let go. i said dad lifes a bast***.
things are only going to get harder and i can only hope i can stay strong.

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Nina's Dad

Postby Veema » Thu Dec 29, 2016 3:27 pm

Life really is crap sometimes. Nina, it's good that he's got all that done and out of his system, you may find he'll rally a bit now. Good too that the palliative care team have been out...have they offered your mum any support?

Keep posting lovely, I pop on many times during the day...it does you good to get your feelings written down, and there are lots of us who have been where you are now.

Vx

yanina
Posts: 17
Joined: Thu Dec 15, 2016 9:28 pm

Re: Nina's Dad

Postby yanina » Thu Dec 29, 2016 5:12 pm

Hi V xxx

Trying to stay strong for me and stay strong for mum is proving hard at the moment.

I have 2 brothers but I feel everything is being put onto my shoulders! I don't work due to health issues, so I am doing more but its taking its toll on me.

I'm encouraging mum to eat every day as she's not been doing so.
I'm trying to carry on with normal day to day living, this is my way of coping, and also for the sake of my boys.

I'm taking mum shopping tomorrow and to get out the house 1st time since Xmas eve, my oldest son will be minding dad while were out.

Take care
Nina xxx

yanina
Posts: 17
Joined: Thu Dec 15, 2016 9:28 pm

Re: Nina's Dad

Postby yanina » Thu Dec 29, 2016 7:01 pm

hi all xxx .. finally things are looking posative , dads having a bed delivered tomorrow and a comode as hes not safe to be going up and down stairs.

some one from pallative care have been to see mum and dad, dad spoke to her about how he was feeling but mum couldnt be there while he spoke about things (too upsetting for her )

my self and my hubby ave been today (29th dec) to sort the living room out so the bed can be put up tomorrow.
when we got there mum had been crying, but didnt know what for. she went up to see dad in bed early this morning and he was crying and he asked her to lay on the bed with him, mum thought he was going to pass that very moment. he told mum he would hold on as long as he could for her.

after a while i went to see dad as he was still in bed, asked if he was ok, i knew something was wrong, this is wen he had a total melt down, we say and cried together and he asked me to look after mum.

im promissed and assured him i would and she would never be along. this was heart breaking as my dad clung onto me like a child who was scared to let go. i said dad lifes a bast***.
things are only going to get harder and i can only hope i can stay strong.

yanina
Posts: 17
Joined: Thu Dec 15, 2016 9:28 pm

Re: Nina's Dad

Postby yanina » Tue Jan 03, 2017 8:45 pm

It's been a while but been helping mum with dad. I'm there every day from 9am till 2/3pm .

District nurses have been amazing and got mum and dad the help the need. Mum now has carers going in so mum can get the well deserved rest she needs at night.

Dads become very irritable and very nasty more towards mum. I had to raise my voice to him other day and tell him not to speak to mum in that way, I know he doesn't meant it and mum does to.

Mums finding it hard to look after dad, all the lifting has taken its toll and she injured herself.
Dads stopped eating and is just living on water. We're encouraging him to eat but he's always asleep.

Today he swore blind some one one was drugging him up (his words). Mum as spoke to district nurse this evening and told her shes struggling, and mentioned about him going into the hospice.

So the doctors are coming to asses him tomorrow and see whats what. I told mum not to feel guilty as she as done her best.

Take care all speak soon xxxxx

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: Nina's Dad

Postby Dandygal76 » Tue Jan 03, 2017 8:55 pm

I am so sorry Yanina. I am afraid the aggression is common and of course he is fed up (who wouldn't be in his shoes) and we always take that out on our nearest and dearest. Then combine that with drug side effects, increased toxins and cancer in the blood etc etc and it is just pants. But please trust me that this aggression is common and it is not because your dad is cross with your mum (or you), it is just part of the course. If your dad is amenable to it, and difficult to manage at home, then perhaps a hospice is your route. People seem to really fear it but I have never heard anyone regret it. If your dad is to pass then they will help it be peaceful and calm. What you are describing is horrible on you all right now (including your dad). Be strong lovely and make the practical choice... not the emotional one (I know that is easier said than done). x

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Nina's Dad

Postby Veema » Tue Jan 03, 2017 10:26 pm

I really think the hospice is the best place...if I'd have thought Nige was going to die so quickly I'd have got him in our local hospice as the last 24 hours were truly awful and it was all witnessed by my daughter, who is 10, and she often now mentions it and says it stops her going to sleep. In the end he died peacefully in the hospital A&E resus area, which was nice and calm, but the hospice would have been nicer. I'm just thankful that we managed to get him to come round after he collapsed because that would have been a horrible, horrible way to die.

Obviously, it doesn't always happen like that. Marmalade's Louis died peacefully at home and if you read her thread, you'll see it can be a calm and peaceful time. You've just got to decide what's best for you, best for your mum and best for him.

loads of love and strength

Vx

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: Nina's Dad

Postby Dandygal76 » Tue Jan 03, 2017 10:45 pm

Good advice V but Marmalade did have her wonderful doctor daughter in tow and I do not remember postings on aggression. I can imagine it is very scary doing it at home. Marmalade is also not new to cancer. She also had strength I would never find in myself. I would go for hospice route, it is clear from your post you guys are not coping (especially mum).. and who would. Find the path of least resistance and peace. x
Last edited by Dandygal76 on Wed Jan 04, 2017 6:22 am, edited 1 time in total.

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Nina's Dad

Postby Veema » Tue Jan 03, 2017 11:08 pm

I don't think you're not coping...its not about whether you are coping or not...I just think that you've got to think of all of you...not just your dad. I coped...in the end I managed to get him out of the bath...it just made it horrible and undignified for Nige to be naked, sat in his own crap, not breathing, with my dad, Phoebe and the paramedics there...if he hadnt come round and died there and then, which we thouht he had at one point, it would gave been awful for us.

You need to make his remaining time the best it can be for all of you...and the same goes for his death.

Vx

yanina
Posts: 17
Joined: Thu Dec 15, 2016 9:28 pm

Re: Nina's Dad

Postby yanina » Wed Jan 04, 2017 2:26 pm

Hi,

Thanks for all your lovely and caring comments - you don't know how much they mean to myself and mum.

District nurse has been today and assessed dad again spoke to mum and my self , and spoke to dad about the hospice. Dad has said he doesn't want to go his words were "he knows he wont come out".

District nurse has been onto the hospice and explained the situation, and its a case of waiting for a bed for dad to go in.

Hes stopped eating (not eaten for 3 days) and just taking sips of water.
Myself and DN managed to give him a wash and settle him back down.

Mum is physically and mentally drained, shes not eating/sleeping and shes not left the house since Christmas eve. She says, she feels guilty for putting him in the hospice, but the DN also explained its also not just about dads well being but mums as well. I've reassured her NOT to feel guilty you have done your best for him and that in the hospice he will get the care he needs from the nurses, and then she can then be his wife again and be there for him as his wife.

I just want to say thanks for all your words of kindness support and encouragement.
Take care hugs to you all xxxx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Nina's Dad

Postby Veema » Wed Jan 04, 2017 3:00 pm

That was one of my main worries about Nige going into the hospice...if he'd have gone in, he would have known he wouldn't have come out...he'd have known he was leaving his home for the last time and that would have been a lot to bear I think. It really is a tough call...do they not do hospice at home? Our hospice do and they basically send nurses out to look after the patient in their own home...maybe that could be a compromise?

You need to get your mum out and about for an hour or so...is there someone who can sit with your dad? Even if she goes for a walk in the park or round asda or something...and she does need to eat.

In the end, you'll manage with whatever you decide...honestly, you will...and the decision may well be taken out of your hands if the hospice don't have a bed and he goes quite quickly.

Lots of love and thoughts...will keep checking back.

Vx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Nina's Dad

Postby Veema » Wed Jan 04, 2017 3:04 pm

And...I don't know if these have been mentioned, but have you got the 'just in case' crisis pack (injectable meds for sickness, pain, agitation) that the district nurses can administer immediately when they are required? And have you got a DNAR in place? It would be awful if your dad was to suffer an unnecessary resuscitation.

Vx

Marmalade

Re: Nina's Dad

Postby Marmalade » Wed Jan 04, 2017 8:08 pm

Hi Yanina,

I am so sorry you and your family are in this terrible position. The aggression is a symptom of the disease but can be managed with the right mix of medication so I think it well worthwhile speaking to the nurses on here or get your GP to speak to the local hospice about tweaking his medication. Believe it or not the GP's do speak to hospice doctors for advice! They can also help with your Dad's depression and you should make sure his GP is attending regularly and reviewing his drugs as they sometimes need changing every day.

I am glad the district nurses are coming in but wonder if your Mum could have some additional carers to take the pressure off her a bit more or if the local hospice have night sitters, volunteers who come and sit up overnight with the patient so the main carer, your Mum, can have a proper rest overnight.

It sounds like your Dad's body is beginning to close down if he is only taking water. I know it's hard but it is now just a matter of time. Trying to make sure Dad is comfortable (mental as well as physical) and that you and your Mum don't have regrets is the most important thing.

It's very easy to torture yourself with thoughts of what more you could have done afterwards so it is vital to understand that although your Dad may not think he wants to go to a hospice, he would probably be more comfortable there with trained medical staff on hand at all times who are able to change his drugs and help him in ways that you can't. Don't be afraid of talking to Dad about it or of asking for help. We have to accept when we don't have the skills or energy to cope alone, there is no advantage to Dad to have you all ill too.

If you would like him to spend his last days at home and can face it, then dry the tears and put your efforts into getting the GP and palliative care team including sitters, carers and DN's to get Dad comfortable and as much help as your Mum needs. Stay on top of them until he is comfy and you and your Mum able to sit and hold his hand or lie with him peacefully. You are doing the right things and whatever decision you make will be the right one, don't allow regrets to creep in, you do your best for Dad and for Mum and no one can do more than their best,

I will be thinking of you xxxx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Nina's Dad

Postby Elaine123 » Thu Jan 05, 2017 12:26 pm

Hi Nina thinking of you and I hope your Dad is having a better day today.
Elaine
X

yanina
Posts: 17
Joined: Thu Dec 15, 2016 9:28 pm

Re: Nina's Dad

Postby yanina » Thu Jan 05, 2017 7:07 pm

evening all , hope every one is as well as can be expectd.

dads been taken into hospital today as he had a turn for the worse mum rung 999 and ambulance took him. lady from hospice came to see him and toldus still no bed for him but they will be keeping in hospital, and that is only a matter of days for dad.

the ward dads on are putting him a driver in so he as meds constant as hes in loads more pain.

they hve said they will make his last few days as pain free and comfy as can be for him. they have been amazing with us today in the ER,and on the ward.

my dad is dieing and there aint nothing i can do. im hating life right now and im taking things out on my poor hubby.
ive had to take m self off to docs my self today as im having some probs with my chest blood pressure is low, she as said its all stress related, have to go for a ecg tomorrow.

really dont know how im going to cope