Horrendous night - biliary duct

[Thriae]

Hi all

I'm posting from mum and dad's house as dad was admitted to hospital last night via ambulance.

I was due to post really positive news as dad had been having a very positive week of eating small amounts without being sick and was feeling all the better for it. So much so, in fact, that on Thursday, he actually had his first chemo. This was something we thought would never happen.

However, his meds became a bit mixed up yesterday and he missed his anti emetic, followed by being violently sick. Following this dad became rapidly confused and ending up so delirious that the GP came out to him. At this point he was admitted to hospital as he scored zero on understanding - so full delirium.

Consciousness seemingly okay but frequently 'out of it'. It goes without saying this was highly distressing for all.

Dad is now in hospital which is contrary to his end of life wishes. Poor mum hadn't fully secured his hospice care options so we are not registered with a hospice as we should have been a,though we were due a visit.

They think electrolyte imbalance or (more likely) bile duct blocked, or UTI. We are awaiting scan of head, more bloods, etc.

My questions are: what can we expect if bile duct and any ideas for swift actioning of hospice at home care as this may be needed imminently.

We do not want him to die in AAU.

Thanks all x

[J_T]

Hi Aimee, sorry to hear of your dad's latest set back.

I can't offer any advice about bile duct sorry. What I will say re not dying in hospital, is that if Ray had a temperature during the last couple of months of his life we called out the on call doctor only once. She agreed with us there was nothing to be gained by sending him to hospital where he HATED being, only to be given IV anti biotics and fluids and then sent home again. Rays wish was to die at home and we were determined that would happen so we managed other high temperatures ourselves, quite successfully and Ray got his wish and passed away in his own bed. Obviously I am not advocating that carers should be a law unto themselves and if Ray had been in distress at any time then of course we would have called for help. Everyone is different but we agreed as a family this was how we wanted it to be. I am content with those decisions.

Much love

Julia x

[Carole McGregor]

Oh I'm so sorry about your poor Dad and I know only too well how distressing this must be for all of you. I'm afraid I have no answers. When this happened to my husband Clive, I could find NO ONE to help. I left frantic messages on various voicemails - hospice, cancer hospital, Macmillan etc but got no response. I have since found out that certainly here in Scotland, hospices do not admit at weekends !!!!!!!

Best advice I can give you is to insist on immediate discussion with whoever is currently responsible for your Dad and DEMAND that a palliative care specialist is contacted. Again, here in Scotland, there are none on duty at weekends but there may well be someone on call. In Clive's case, he was admitted to A&E on Friday. A palliative care specialist eventually turned up to see him a couple of hours after I had taken Clive home by private ambulance on the Monday afternoon.

Be strong my love and remember that there are many people here rooting for you and your family.

Carole

[EmmaR]

Aimee what can we say only to be as brave as you can the fight against this true awful disease is just so soul destroying we feel we will never recover but we will we have to just to get something done about finding a cure .

EmmaR xx

[Thriae]

Hello

I'm with dad, he has a syringe driver and is peaceful.

We've had some lovely moments even though he is unable to speak.

He caught me having a sniffle next to his bed last night and squeezed my hand. This was so poignant as he wasn't responding to speech at the time.

Mum has decided she can't leave the hospital so we are trying to help her rest next to dad's hospital bed.

I will post again when our journey is over but in the meantime thank you for your donations for my marathon and love and best wishes to all of you going through this.

Aimie

[Cathy]

Hi Aimie

I am so sorry that things have gone so downhill aftter it all seemed so hopeful.

So glad your Dad sounds comfortable and how lovely he responded and squeezed your hand.

We're thinking of you and your family.

Cathy xx

[cestrian]

Hi Aimie

Must have been very moving for you and although your Dad is not at home you are all together and home is where the heart is. All my virtual hugs and support.

Love and Peace

Mike

[Carole McGregor]

Hi Aimie

I'm so sorry - one of the many awful things about this disease is how quickly things can change. I'm sure you know this but I was told by the District Nurses that hearing is thought to be the last sense to go so I talked to Clive all night, reminiscing about our wonderful life together. Even if he wasn't able to hear, it helped me to hold on to all that was precious to us and that gives me comfort even now.

Much love

Carole

[Thriae]

Just posting a little update...

Dad had his chemo on Thursday 7th November. He was really bright and had cheeky fun being whizzed down the hospital corridors at lightning speed by a fun loving hospital porter. (Small moments of amusement count.)

All was well on Thursday night but on Friday afternoon my sister and I received a call at work. It was mum - dad was very agitated and talking in an utterly non sensical way and his leg had ballooned to more than double the size of the opposite leg.

Mum had the doctor out whilst we rushed to the house. When we got there dad was repeating the same sentence over and over again. It made no sense but dad was adamant that we needed to action whatever it was he was talking about. The doctor had left mum with either the option of a community ambulance within a few hours to get dad to hospital or to take him there herself.

It was clear that neither was an option as dad was deteriorating fast so I dialled 999. Huge guilt, as taking dad back in and in an ambulance was everything dad dreaded.

Once on the ward dad was diagnosed with sepsis, liver deterioration and delirium caused by either of the above. He also had a DVT that was out of control - alongside existing pulmonary emboli.

Dad was hooked up to IV fluids and antibiotics along with all his other meds. (To think that he avoided even paracetamol weeks ago is almost funny).

We stayed like this for 48 hrs or so, and dad gradually lost the ability to speak or move or control his bladder. Sunday we continued to stay by dad's side, helping him move in his bed, cleaning his lips and nose and eyes. We stopped trying to feed him teaspoons of food too and just relied on the saline drip. We tried to comfort him and help him. Sometimes he would whisper a mumbled word or two to us but we struggled to understand. We did hit success on the instruction to shut the curtains and a couple of other things, but many things dad tried to say remain unclear which is deeply upsetting. Not least because dad seemed to be trying to let us know who he wanted with him.

We finally took the decision on Tuesday to discontinue fluids and antibiotic treatment.

Yesterday, I took the opportunity of a more alert moment (dad began sedation on Sunday which was increased bit by bit as he became more distressed) to say goodbye to dad. I couldn't help sobbing as I told him I was going home. He gazed at me and shook his head in despairing fashion - something we'd seen him do a number of times over the last few days.

I told him I would give a kiss to each of his grandchildren on his behalf.

I stroked his hand and told him we would all be okay. And then I left.

I don't intend to go back to see dad, I wanted him to know I was saying my final goodbye and I think he knew I was. I wanted him to have the opportunity to die with just my mum with him or alone if that was what he wanted.

My mum is terrified of him dying next to her whereas I was not as afraid. It I have a string sense that dad wanted me to go. He hated being a bother to anyone and his always been a private sort of man.

As each day passed there was less and less we could do for dad. I'd had the most success I guess - a belief held by my mum and sister - and I attribute this to having had babies to contend with! I sort of understood some of the gobbledygook, had perfected my spoon feeding and so on. I don't mean to detract from dad's dignity in saying that, but it's true.

The last thing I did for dad was to apply his lip balm.

I will go back if in his dying moments he asks for me, but for now it is goodbye and I'm just waiting for 'the call'.

Thank you all here for your continued support.

[nikkis]

Hi Aimie,

I know when my Dad died I just instinctively new what I wanted to do and what he wanted, and have never had any regrets about the choices I made. There is no doubt your Dad will know how much you love him and will be very proud of you.

Thinking of you, your Mum and the rest of your family,

Nikki

[InfoForMum]

Hi there, I have a small window into what you might be going through as my Dad went though a similar sequence of events just before he died 11 years ago. I completely understand your choices. Your Dad knows you and you know your dad so as Nikki said trust your instincts and I send hugs and wish peace to your Dad, you, your sister and the rest of the family.

Sarah

XXX

[Cathy]

Hi Aimie

Thinking of you and all of your family.

Again, so sorry to hear of your Dad's rapid decline in health.

Cathy xx

[jules 2015]

Hi Aimie

Sorry to hear that your dad has gone downhill so quickly, this often seems to be the case with this horrible disease. My dad too ended up in hospital at the end, and although he originally said he didn't wantvto die in hospital, said he felt safest there in his last few days. Thinking of you and your family at this difficult time.

Julie x