How much longer will he suffer.

[Neg73]

I'm new to this support group and just was hoping someone could give me some advice as am at my wits end. It's 3.10 am and this is the second night my sister and I are with my dad who is in the final stages. He was diagnosed on the 23rd of December with PC and has spread into his liver. He had a stent put in on Wednesday and we were hoping for some borrowed time. However, he has deteriorated rapidly and we brought him home to die at his request. Support from hospital was excellent and he has had a driver for medication as he can't drink much and hasn't eaten for a week. As all of you who have gone through this witnessing of suffering of a parent, it's unbearable. He is mostly out of it, but when he comes round he either talks about strange things or says he wants to die. Feel so useless and he has lost all dignity. Can anyone tell me how long to expect as I can't bear to see him in such distress. Feel guilty for sounding selfish, would gladly nurse him for weeks if he wasn't so distressed. Any advice would be appreciated as I'm feeling very alone.

[Bee]

Hi and welcome to the forum ans so sorry you are in this position,

First of all there is nothing selfish in what you are saying and how you are feeling. It is an incredibly difficult thing you are doing for your dad but also I hope one day it will bring you comfort to know you are helping to fulfill his wishes.

Are you still getting plenty of support from palliative care/ hospice team? In answer to your question there is no clear answer, it very much depends on someone's age, physical fitness etc. when people stop eating and drinking they can pass away in just a few hours,days or longer. You said your dad is mainly asleep but distressed or confused at times. That may be the illness itself or possibly effects of the medication, which should be being reviewed regularly to keep him comfortable. He will still be able to hear you even when he is asleep so keep talking and tell him all the things you want to say to him because he will hear you.

Your dad will probably slip away when he decides, (although that seems strange), having lost my husband in December I absolutely believe this. I was also advised by the hospice when he was very poorly to give him 'permission to go'.

I am sorry I can't help any more than this but you are not alone although it feels like it.

Take care

Bee x

[Charney22]

Hi I am currently in the same position as you,nursing my husband

At home at the moment, out of it most of the time , is only eating porridge

But has been drinking water, it is extremely hard and to see a loved one go

Through this is horrendous and emotional. My kids and I have made heart

Wrenching decision to place him in a hospice, not an easy decision but

We feel that this will be better for him. He has his hospital bed in our lounge

And I have been sleeping on our sofa . He had a really nasty fall the other night

Ploughing into our tv and completely demolishing the stand , fortunately no serious

Damage to himself and for this reason we feel he will be safer in a hospice. I know

How hard this has been for us to care for him at home and I so admire

You.

Best wishes. Cheryl xx

[J_T]

Hello, so sorry to hear about your dad.

My husband's final weeks were pretty similar to what you are describing and I understand exactly how incredibly helpless you feel and how terrible it is to watch. Unfortunately it's impossible to give any time scales. My husband didn't eat for five weeks but was getting some fluid down, latterly in the form of crushed ice. During the week before he died on the Saturday, we had discussions with the Macmillan nurse, my husband included, and we increased his medazolam which effectively meant he just slept and therefore was no longer getting any fluid. The GP saw him and said it could be a couple of weeks, days or hours, so even they don't know. On the Saturday his breathing became laboured which then developed into the 'rattle' (I wouldn't call it a rattle myself) and he died later that night.

I was and am very angry that human beings have to suffer in this way, and as you say, there is no dignity in it. It's an over used cliche but you wouldn't let an animal linger in that way. Like your dad, my husband asked for release many times but nothing can be done, you just have to let nature take it's course. Again like your dad, my husband was at home and that is a huge comfort to me in what was a very, very difficult period in our lives.

I can only wish you the strength to see this through. Keep talking to your dad and let him know you're there. I'll be thinking of you.

Julia

[jules 2015]

Hi

I too lost my dad to PC on 1st Nov 2013, it is such a cruel disease and the final days were horrible knowing my dad would die and not being able to do anything to help. I told my dad time and time again that I loved him and we have him permission to die which is why I think it was so quick in the end. we took him into hospital on the Tuesday and by the Friday evening he was gone, on the Wednesday we thought he be coming home but his breathing deteriorated and he said he felt safer in the hospital even though his original wishes had been to die at home. I don't think anyone or anything can prepare you for losing your dad but just wanted to let you know that I am thinking of you and we are all here to help in the days, weeks and months ahead. Keeping talking to your dad and reassure him you are there. I still haven't come to terms with what has happened but am glad we were all there with my dad until the end.

Julie x

[EmmaR]

Hello I agree with everything the others have said my husband died in November the day before he had lost all his dignity but we got him a room in a lovely hospice and spent the night with him with the help of the syringe driver he was very peaceful but not aware of us but the nurse said he could hear what we were saying ,so we kept telling him everything we wanted him to know he said sometime before he became really poorly that he want to be in a hospice as he didn't think I could lift him and do other things for him which I thanked him for as Bee said you have to let them go ,ones we had said all the grand children's names and messages to him ( some were to young to be there ) he passed away quickly .

I am more spiritual than religious and said this little poem to him through the night .

No one knows where the Spirit World is ,

The ancient people said that it is beyond the pines

The pine trees are at the edge of the world ,and beyond them is the path of the winds,

The spirit way begins there at the edge of the world among the stars,

And the winds will tell the spirits of the people where to find it .

Hope it helps just keep telling him you love and stay strong .

EmmaR xx

[Cathy]

Hi there

I really can't add anything to what our friends have said but just wanted to post something in support.

I lost my beautiful man last month and completely empathise with how difficult it is to watch someone you love die. It sounds like you are getting support outside so he is comfortable as that is important. It is very hard, as a carer, to accept that, though you do your very best, there are some things that you just can't do and that nature will take its course.

I am sure you do feel alone. Just know that there are others who are treading or have tread your path before you and try take comfort, if you can, from that.

We are here for you.

Cathy xx

[Birchen]

Hello I to lost my husband in December and we felt we were very lucky to have been able to get him into our local hospice where over the 5 days he was there all sorts of friends and relatives visited and I was able to stay with him overnight as well. The support we have received from our hospice has been amazing and I also lost both my mother and father at the same hospice. The difference in care between the hospital and hospice cannot be put into words, although we appreciate that the hospital does its best but there are not enough staff. Nothing can prepare anyone for losing a loved one and the pain seems to be getting harder at the moment. Thinking of all the ladies of who lost a loved one recently. I am surprised at myself still logging onto this forum but I feel that it still gives support after losing your loved one. Take care Lyn xx

[Dollysdaughter]

It must be unbelievably distressing for you but the fact that you are there must be extremely comforting for your dad. Thinking of you and all the others suffering either directly or indirectly,

Sara x

[yorkypaul]

I lost my lovely wife to this vile thing just over a year ago. I was with her at the end. She began to breathe in a quite laboured way, ( I believe they refer to it as Cheyne-Stokes respiration) which lasted about 2 hours before she quietly slipped away. Fortunately, she was in no pain due to the medication that was provided. I don't want to sound cold or clinical, but I was so glad that my step son was there with me and he advised me of what was happening (he is an urgent care nurse). My thoughts and prayers are with you at this awful time.

Hugs, Paul x

[PCUK Nurse Jeni]

Hello All,

Just a quick note to say Thank you for your support to Neg73. It is really amazing how so many of you reach out to others after your own grief, and sharing experiences. All which are very individual, but also, things like the fact that the person will still hear you no matter what, and the fact that sometimes, giving them "permission" to go can be what they need to hear.

You are all suffering in your own grief, yet have given comfort to someone else on the journey. Thank you all from us.

Support Team.

[Neg73]

I can't believe the wonderful response and support you have given me and will treasure this for the rest of my life. My father passed away Monday morning with all the family present. An hour before he died, I told him he could let go and that we would care for my mother. I miss him so much already, but am proud to have brought him home so he could die where he wanted. The care we received from our local hospital was AMAZING! If anyone is ever in doubt of bringing a loved one home to die, please don't be scared. It wasn't easy but he was in control of the last few days of his life. Once again, thank you all so much and my thoughts are with anyone going through a similar situation.

[Cathy]

Hi there

I am so sorry to hear that you have lost your father. It's very very early days for you so I imagine you must feel quite numb still.

You did a fantastic job for him as what you did wasn't an easy thing to do. I am sure that in future you will take comfort and strength from that.

Take care

Cathy xx

[Jwilson]

Hi there. I have just discovered your posts about your dad this afternoon and then when I got to the bottom of the page I see that he has passed away. I'm so sorry but, like you, and everyone else on this forum, we want the suffering to be over for them. My husband died on November 19th at home where he wanted to be. It's very very hard to know what to do for the best. Even during Bills last few days I asked did he want to go to a hospice where there were professionals to care for him but he was adamant, no he wanted to be at home. I am pleased now to see the big drive towards early diagnosis. Posters in the tube in London, news items, fundraising efforts on Facebook. Until Bill was diagnosed I had never heard of PC nor had many of our friends. Raising awareness is so important and maybe not so many will have to go through that terrible suffering. Thinking of you.

June

[belgrade]

I am so sorry to hear about your Dad but hope you can draw comfort that he is no longer suffering and you did everything you possibly could for him.

Thinking of you and your family,

Hilary

[Neg73]

Thank you all. Just to inform you all that I've had excellent support from EUROPAC through the University of Liverpool who have taken my fears for hereditary/genetic PC serious. My grandmother (paternal), great uncle (paternal) and my dad all died from this terrible disease. None of my GP's have given us any advice on this and through my own research along with my dad's persistence to research familial PC, we have been registered with EUROPAC for screening. I didn't want to acknowledge this whilst my father was alive, but he made me promise that I would look into it as he didn't want me or my children to suffer. If anyone is concerned with this issue I strongly advise you to contact EUROPAC as they have been excellent. My dad's wish was that all donations from the funeral (rather than flowers) go to this research programme.

[EmmaR]

My thoughts are with you and sending condolences stay strong .

EmmaR x

[cestrian]

You have done everything your Dad needed and wanted and his peaceful death at home amongst his loved ones is a tribute to your care and compassion.

My sincere condolences on your loss.

Love and Peace

Mike

[J_T]

So sorry to hear about your dad, but pleased he was where he wanted to be with his family present.

You are to mention EUROPAC. We looked into this as my husbands father also died of cancer but unfortunately the primary site was unknown so my children are not eligible.

Wishing you strength for the coming days.

Julia x

[Janiebobs]

I was so sorry to hear about you Dad. My dad was diagnosed with inoperable PC at the beginning of January 2014.

Thinking about you and your family at this very sad time

Jane x

[sandraW]

Sorry to hear about your Dad, you can be sure in the knowledge that you did everything you could for him, and he was where he wished to be at the end. love and hugs to you and all your family sandra x

[jules 2015]

Hi

So sorry to hear about your dad, you must be devastated. Sending you hugs and strength at this sad time, try to take each day one day at a time. You did a brilliant job looking after your dad and making sure he was at home with his family, please try to take some comfort from this.

Julie x

[Bee]

Hi,

So sorry, take things one day at a time and use all the support available. Take car,

Bee x

[PCUK Nurse Jeni]

Hi there,

So sorry to hear about the passing of your dad so soon after you first wrote about him.

It is good to hear that he was able to be at home, and have his wish granted, and that you had excellent care from your hospital. This is so good to hear, as often, the opposite is true, so it is encouraging to others that you have had some good experiences.

Our deepest sympathies go out to you and your family at this sad time.

Also, great to hear of your positive feedback about Europac also. We do refer many people there and we know that the research they are conducting is very important for the future understanding of pancreatic cancer.

Kind regards,

Jeni, Support Team.

[Neg73]

Overwhelmed by your kindness. Thank you. I will use this site for years to come and hope sometime in the future I can repay the kindness to somebody in need. My deepest thoughts are with you who are suffering currently through personal PC or witnessing a loved one suffer. Xxxxxx