How long and what to expect.....

[Helenleeson]

Hi everyone, my original post was written 2 months ago. I spoke of my dads 8 year journey with an unknown bile duct/ liver problem. I was reaching out for support following a consultant review that confirmed end stage liver failure and a fibroscan score of 75.

Things have deteriorated very quickly and I know that my dad only has days left. The last few weeks has involved 2 ambulance journeys into hospital. Once to drain the ascites again and last time to fit an indwelling drain so that he can stay at home with me and my sister for his final days.

It's been an emotional rollercoaster, but we have all come to terms with the situation now. Dad is pretty peaceful now apart from when he has to get out of bed for the commode (he refused a catheter) his blood pressure is so low that he usually faints. My sister and I are his carers but we have support from district nurses, palliative care and now Marie Curie nurses help us with some night care. I cannot praise them all enough, they are fantastic.

They say we are doing a great job but we are just trying to ensure that dads transition is as gentle and full of love as possible. Isn't that how all of us would want to go?

I'm happy to answer any questions if I can be of help to anyone on here. There are so many aspects to all of this and of course there will be differences with each person but I'm sure there will also be similarities so please ask.

I also made a public Facebook post if anyone is interested. Just search Helen Strong.

Love to you all

Helen

[Millie09]

Hello Helen , I have just read your post .. I am so very sorry to hear about your dad .. He is having the best ever care he could wish for and that is his family . I too have been through exactly the same but my dads was secondary cancer to the brain .. Only 5 months after having his left lung removed . We cared for him when in pallative care .. Unfortunately not so with McMillan. They only came in to check his feeder that was continually administering medazolam so he was sort of not with it much untill 2 days before he passed he Seemed Alert . Was and is one of the most heartbreaking things I have ever been through and I praise you for what you are doing as believe me this helps when the time comes . I have Cirrosis . Since 2008 . Seem to be doing ok but I do worry about how long I have left etc .. Thank you for the link to your fb post , I will look you up ...... Sending my thoughts and prayers to you Helen . ❤️ Best wishes Linda

[Helenleeson in reply to Millie09]

Hi Linda, thanks for replying. I'm so sorry to hear about your experience. Your poor dad. It is so hard isn't it? But there is comfort to be found in knowing that they are being cared for by those who love them the most. There is no way we would have it any other way. Xx

[Millie09 in reply to Helenleeson]

Your so welcome Helen , your post touched my heart so much that I could so relate to the same situation but different illness of corse . That is how we wanted It , we were there like your family to ensure he was as comfortable as he could be .. Bless you all .. Xx

[Rachel299]

Hi Helen, my dad suffered pancreatis a couple of years ago and we nearly lost him then but he pulled through and has since suffered from a bilary blockage and a portal vein clot to his liver. His condition is of unknown cause as well. I hope I can cope as well as you and your sister, I'm not sure what stage my dad is at, I know he can't have a liver transplant and it will gradually fail so he isn't going to get better, im not entirely sure what to expect or at what rate things will progress. I know it must be tremendously hard for all of you, I'm glad you are being helped and supported and thank you for sharing and trying to help others, I personally have found it hard to get any answers on what to expect, it helps to know that there will be support out there. x

[Helenleeson in reply to Rachel299]

Hi, sorry to hear about your dad..as if pancreatitis wasn't enough...to now have to cope with liver problems too must be so awful. We found it hard to get answers too. I think you need to ask the difficult questions. I was palmed off by a few consultants and wish I had been firmer. When dad has passed I am going to write to the hospital to let them know that this is an area that needs more attention and training. The trouble with the system seems to be that nothing can really be discussed without the patient....some things need to be discussed by the family so that they can better support the patient. We found that no one wanted to say how long dad would have....who wants to risk being wrong?! In the end the GP broached the subject with my dad while he was on his own and it while it was done with the best intention, it was harsh. He just went on about DNR procedures. My dad hadn't even accepted that his life was nearing the end at that point. We have learnt an awful lot throughout this process and have been increasingly protective of dad as his condition has worsened. I would urge you to have the difficult conversations so that you can be an advocate for your Dad and ensure he is treated as he wishes. It has been approx 8 weeks from being told that there was nothing further that could be done to the stage we are at now. The last month has seen dad lose his independence completely and that was the hardest part for him. He was always so strong and capable. I wish you luck and strength. Get your dad to to as much as he can while he can. Xx

[dooley1 in reply to Helenleeson]

Hi I'm so sorry that you're going through this tremendously stressful and sad time, I agree with you about information given by the health professionals as you said they're all too scared of being wrong! I lost my dad recently too and found exactly the same as you. We all know what path they're on but we need to know exactly where they are on that path. I applaud you for giving your dad the best most loving support till the end, although it's heartbreaking to watch. My heartfelt thought and wishes are with you.

Helen xx

[Brummi]

Hi, It's always sad to hear how an illness can affect folk in different ways, but how wonderful for you to want to talk about helping others. All our hearts and prayers are with you... Take care.

[Geffy22]

Helenleeson i am so pleased to hear your great experience, but more sad you are going through this. Bless you and your suster, it is hard to watch a loved one pass away but also the most important thing we can do for a loved one at this part of their life journey.

I watched my husband die, he was discharged with no palliative care in place and i am sure he suffered until he was admitted onto a palliative care ward 3 days later and sunsquently peacefully passed away.

I visited him in the chapel of rest which took away the memories i had from being with him at the end.

I wish you and sister strength xxx

[Helenleeson in reply to Geffy22]

Thanks Geffy22, I'm so sorry to hear about your experience. I guess we feel lucky that we have had the time and opportunity to get as much support as possible. There is a fine line between available services getting it sorted or missing the chance. We feel that the hospital support was too little too late but the home support we are receiving now is excellent.xxx

[Geffy22 in reply to Helenleeson]

Helenleeson bless you, the only info i can share is my Hubby got into a very confused state before i knew he was going to leave us. I do not mean forgetful which comes much earlier. I mean he went to the loo and couldnt work out if he pulled his pants up or down. He spotted a quilt i wash ready to wash on the kitchen floor and laid down on it thinking it was his bed. If anything like this happens and the palliative care team are not with you please get him into hospital because he will need pain relief.

As i said my hubby went peacefully he asked us for a kiss - lord knows how but he did - and then left us a few hours later. I think our dads came for him because i felt my dads presence.

Please also think about arranging some counselling, services are stretched but i have found it very helpful. It may be useful to join a waiting list sooner - we had to wait 5/6 months.

We are now in our 8th month. We miss him everyday but he has been back and i know he has left a fab legacy in his children and future generations.

Be proud of your dad sweetheart xxx

[Urbanblanks]

So sorry to hear about you dad and I think you are doing a fantastic thing with all the help and I hope he's in a peaceful state of mind as much as one can be .I agree about the consultant's sanas they can be very dismissive as if your dad and your self's are just numbers .I my self have end stage and every thing that comes with it I also have pancreatitus chronic only found out by asking for my consults letters but to me it seems the hardest things are that consultants will never ever tell you how long you have before it all gets to much. The last year I've noticed a downward spiral in my health more so than the last ten ,but it's very hard to tell your family how you feel from one day to the next ,I'm 59 so not old and I have two wonderful daughters who try there best I know they are always asking the consultant questions but they won't answer unless I'm there like you say, and also if I myself want an answer on my own 9 times out of 10 I will forget what the questions were I was in denial for many many years I was never a drinker and caught hepc from tattoos I think but that would of been in my teens then years later you get I'll as I did and then that's when all the hospitals start so I can completely see where your coming from .I hope everything is peaceful and as good as it can possibly be and all my love and thoughts go to you your sister and your dad God bless you all sorry to bend your ear about myself but it's easier to do this than try and explain things to your friends and family face to face all the love bri

[Helenleeson in reply to Urbanblanks]

Hi Bri, sorry it's taken me a while to respond...I keep starting to and then get called away. Thank you for sharing your story, I'm glad you did because lots of what you said is similar to our experience. If more people talk about the issues surrounding communication and sharing of information then hopefully these issues can be addressed. We found that it was often difficult to ask the right questions. I was shut down quite a few times by drs for asking too many medical questions...it's a frustrating situation often compounded by being under multiple teams within a very pressured NHS and that's without the pumped up egos of some of the consultants you have to meet! Don't let me get me started about that...I hope you are with a good hospital and that you make the most of every day with your lovely family. Oh and thanks for checking out my fb post. X

[Urbanblanks in reply to Helenleeson]

No problem helen and thanks for replying I do hope everything is OK with you and your family I hope your dad hasn't got any worse and hopefully like you say when it's all said and done you will get the answers you deserve I my self have alot of questions for my consultant when we see him in a few weeks I'm at the royal surrey so just have to see . Love to you all love from myself and family xx

[soooze50]

Thank you for sharing, only those walking in the same shoes really know how things will progress. The Medics are trained to 'fudge over' the real and honest truth, which is not helpful for many of us who prefer the 'full disclosure' details. This is confronting but we can be better prepared to care for our loved ones, and really, all that matters is love. X Soooze

[Catfishjumpin]

I am interested in your FB post. It sounds like things are as organized and comfortable as can be expected but it still must be so hard and so sad. Its really nice he has his girls around him and he knows that you are both there for him until his ending. My heart goes out to you. Aloha Catfishjumpin

[Hidden]

Hi Helen,

It sounds like you are doing an amazing job caring for your Dad,

Sending very best wishes,

Rebecca