Hello, I am so sorry that you are having to experience this as it is such a painful set of circumstances.  I went through this in 2003.  My Dad passed with lung cancer.  There was no more they could do for him and he knew that.  He told us he had a 'wee bit of cancer'.  He had complained of pain in his side for a long time but the Doctors were dismissing it as muscular.   He developed what seemed to be COPD but of course it was the cancer.  I really did not think a patient would be discharged to the community without a support package being organised.  My Dad wanted to die at home but my Mum was blocking that.  She said she could not cope.  I was upset by this.   Anyway he was transferred to our town's tiny little hospital.  The plan was for him to go from hospital to home on a day basis.  Asit happened he went to the community hospital on the Friday night.  He died on the Sunday night and died.  I guess it was a stroke or a heart attack.  I hope that you can get some support to organise something responsive to your Dad's needs.  My thoughts are with you.

Celticlass. Sorry for your loss, it's a sad story . 

My mum is caring for my Dad round the clock. It's exhausting. I'm doing as much as I can, it just feels like a very lonely job. Of course I'd give anything for this not to be happening. 

Hi

The loss of my Dad was a long time ago and I do accept it.  It is a journey we all.have to take.  I am.thankful he went quickly in the end.

I hope you and your Mum can continue to care for him but surely additional nursing support will come.

I wish I had been able to freely tell my parents I loved them.

I wish you strength and peace xx

Dear Enough 001

My dear Dad passed away peacefully at home on 3rd April. He had overcome bladder cancer over 20 years ago, & had successful treatment of lung cysts 2 years ago. 8 yrs ago he had an excellent recovery after a stroke.  We all self isolated for 2 weeks so that we  could spend xmas together & now I'm so glad we did this. I felt that my Dad was invincible, he was a  very very strong minded & intelligent man. He loved with all his heart. Suddenly in Feb 2021 he was diagnosed with gastric cancer, the dr said was worst case he'd seen in 20 years & no treatment could be offered.  I was distraught. I'm a registered nurse & every time my Dad had been ill, he'd looked to me for security,  knowing that I would do my best to help. When he was admitted X2 to hospital & I saw the lack of care & empathy, I fought, with my mum for rapid discharge home, as he wanted to die at home. 

We were very much alone, fought for timely  prescriptions for  the morphine syringe driver, & even the artificial saliva spray was prescribed 1 day before he died. 

I am sure professionals felt we were a nuisance because we undertook all care for my Dad.

Even then no one would give a prognosis yet all were surprised that Dad lived for nearly 6 weeks at home. I moved back home & was with him & mum night & day. It was an emotional roller coaster & I'm still trying to process it all.

At the end he passed peacefully holding both our hands & we told him how much we loved him & that we would look after each other. 

I have a lot of sadness & anger at the fact that sometimes we couldn't get through to the gp on the phone & the lack of empathy from professionals. 

However until the end of my days I have absolutely no regrets about taking him home to die. He kept his dignity , was clean and at peace & I cherished every second I spent with him.

It has given me a lot of peace to know that we respected his wishes & were able to care for him. I completely understand this is not easy for everyone. 

If this is your wish & your Dad's wish,  fight for him & you will never regret it. 

I miss my Dad with all my heart, he & I were like two peas in a pod, he was my best friend & a wonderful Father. Some days I feel completely numb & others I just cry & find it unbearable that I will never see him again. But he knew how much I loved him & that does help a little.  So sorry to waffle. 

Sending you love, hope & strength. Xx

Sounds like a similar situation with my Mum - the medical staff just wrote her off and were really not interested in helping.  We had to fight every step of the way.  The worst part is the hostility from doctors and nurses when we tried to get her help - they were like why are you bothering.  We were bothering because we loved our beautiful Mum and wanted the best for her.  They just did not get it - they must become immune to seeing people with terminal cancer

Dear everyone in this thread

I've just been through this with my Mum who was discharged with advanced pancreatic cancer on 24th March and offerred palliative care in the community (with a full package of support....you won't be on your own .... I was told) and has just died at home on 29th April. Her last 5 days were a rapid decline with the full end of life care plan put in place just 72 hours before she passed.

I was the sole carer for 6 weeks on my own all this time and throughout the last (worse) days and had a deeply traumatic and isolating experience. This has been the worse thing that has ever happened to me or that I have ever witnessed and I don't think I will ever get over it. I've been in a war zone and I'm now suffering flashbacks and panic attacks. 

I won't go into detail about the grim realities of multiple call outs to the out of hours District Nurses team for emergency injections for all the symptoms and the anxious wait times for additional interventions on top of the oral drugs regime to deal with; sickness, pain, agitation, breathlessness and the hours spent waiting for people to come and provide some relief for my Mum and reassurance to me. I only had paracetamol and oromorph at my disposal.

It was only when the MacMillan Nurse got involved and the syringe driver was fitted that things calmed down for a brief 4 hours until the battery ran out and the alarm went off and another emergency call was made. Then we had a top up diamorphine injection and the I was left alone again. 16 hours later she was gone but at least I was there with her at the end. Of course this was in the early hours of the morning and no one answered at the GPs so Mum's body was not taken to the funeral home for another 8 hours. Another bleak and depressing period for me.........completely on my own.

For the last 5 nights I "slept" on the couch next to her bed to provide comfort and to be alert to any new complications. So, by the time I was really needed as the loving daughter holding her hand and helping her pass away, I was sleep deprived, weak and an emotional wreck. Should've got the overnight sitters in before we needed them. In the end we never had any night time respite.

All I can advise others in the same situation helping their loved ones to die at home is fight for everything you are going to need and before you need it. Get MacMillan involved as they can prescribe and you can't always get hold of your GP.  Get the care package in place especially as things can deteriorate very quickly. I was doing all the personal hygiene stuff myself until the first night of 6 hours of sickness and diarrhea and I could've done with the carers coming in their usual 4 times a day. It took another 2 days to set this up.

Try to anticipate what you will need and get the just in case medicine in as soon as possible and ask the nurses to stock check. When they came to set up syringe driver there was no water!! I had to phone round chemists and go and get 10 ampoules myself!

If any symptoms or breakthrough pain starts phone the District Nurse Team number immediately don't wait until it escalates. It will. And it can take an hour and a half before anyone can get to you.

Your home is not a replica hospital or a hospice and whilst it could be your loved one's wishes to die in the comfort of their own home, this comfort needs to be meticulously anticipated and planned for and there will be errors and delays. I'm not trying to put people off. I'm still glad Mum's wishes were met......I just want to share what I learnt and would've done differently.

Take care.......hope this helps someone

HotPot123

Dear Hot Pot123

I am very sorry for your loss & the traumatic experience that you experienced. I hope that in time you may be able to remember more peaceful & happy times you spent with your mum.

I have posted previously about my experience caring for my dear Dad , before he passed away with gastric cancer on 3rd April 2021. There are huge similarities between your experience & mine.  I also did a stock take of the drugs every day, as I  trusted no one to do this, after a couple of Friday mornings begging the GP for a morphine prescription, as the nurses hadn't ordered in time.

I have never felt so distraught in my life, during the 5 weeks my mum & myself nursed my Dad at home.  I am a registered nurse, but I specialise in  paediatrics & didn't have up to date palliative care experience,  yet I was appalled that questions went unanswered, we were told to call the local hospice, then they'd return the call & say that we needed to call the GP. 

When we did this we were often either 23rd in line on the phone,  or the message would state that we couldn't be given a place in the queue, & abruptly end the call.

When Dad had a bowel blockage & was crying in pain, I found this absolutely traumatic & frustrating. The poor poor thing ended up being trussed up , manhandled down the stairs on 2 separate occasions & spent the night in the local A&E. A decision was made to pass a nasogastric tube to drain faecal matter from Dad's stomach.  The dr then wanted to admit Dad, "to keep an eye on him", after saying  nothing more could be done. 

So we decided, as a family,  that we'd rather take him home. The dr said, in that case, we have to remove the tube as the district nurses don't take responsibility for NG tubes in the community! 

So I  begged them to leave it in & I  accepted responsibility for it. Draining it for 2 days until it blocked again & Dad ended up in A&E for the 3rd time wasting another  day again, as I  couldn't get through to the gp.

One afternoon a gp trainee called to finally enquire about my Dad....I politely let him have the full brunt of my utter disgust at the sub human way my dear Dad was being treated.

Credit to him, he spoke with Dad's named gp, who arranged for the hospice clinical nurse to visit. Too little too late,  Dad died a few days later. No mouth care was ever provided, I sorted this out myself. Yet on Dad's care plan it stated he should have been discharged 5 weeks previously with salivex spray....yet this was only prescribed the evening before he died.

Since then I've spoken to the named gp, told him exactly how we felt ,,abandoned,  distraught,  exhausted & desolate . The fact that a dying man had to have x3 paramedics out & x3 ambulances & trips to A&E whilst dying ,  utterly appalled & traumatised me & mum. 

Palliative care at home needs a complete revamp. The consequences emotionally to the patients & families is unacceptable.  I've told my Dad's gp they need a dedicated phone line for end of life patients being cared for at home.

The gp has called my mum nearly every week since Dad died,  yet didn't have the courtesy to do this once during nearly 6 weeks of care at home. 

The only professionals who treated Dad with dignity, empathy, & gentleness & always tried to give a little hope that the situation could be eased for Dad,  were the East of England Ambulance Service. 

One paramedic stayed with Dad & us for 3 hours to ensure Dad was comfortable before he left.

I'm so sorry I waffle, I have a lot to process.

Thinking of you & everyone during difficult times.x

Dear Elly39

Thank you so much for replying and I am deeply sorry for all you have experienced. 

An EOL dedicated line is a brilliant idea. Alongside a revamp of the whole system. I would happily be part of a select committee evidence panel. Also the pharmacy need to be integrated into the hospice at home hub.

Just to add to the list of failings. We never received our salivex. The correct barrier cream for the carers arrived 3 weeks late and 2 days after mum had died. Along with 3 months supply of incontinence pads.

I'm still getting drugs through the Echo system that took too long to arrive in the first place although orders were placed in time but then reordered for pharmacy collection as it was quicker. The pharmacy were emailing and texting my Mum while she was actively dying even though I had changed all the contact details. And I am still getting boxes of Forticreme! All these slip ups just add to the chaos.

There was on superb emergency DN. Who came late one night to give an injection and stayed to help me with soiled sheets even though this wasn't her job and then she phoned the office and went totally ballistic saying "this is ridiculous. Xxxx needs more support here. She's totally on her own dealing with everything"

She then went to her care and came back with what she could spare in terms of gloves, aprons etc etc.

Another tip. When the team and the GP seemed to be in disagreement about whether Mum should still be taking all her drugs as pills, liquid versions or injections (she'd had 5 emergency injections already and swallowing function was poor) I phoned the Consultant oncologist at the hospital asking for her to intervene with some specialist advice on this particular pancreatic cancer. She basically told the team  ...it's an aggressive malignant form,  there is a lot of internal disease, Mum is 88, give her everything she needs to make her comfortable.

Thinking of you and of everyone caring for loved ones at home.

HotPot123 xxx

Dear Enough 001,

I am deeply sorry for the pain you are going through. 

You are so right in stating that EOL appears to be run of the mill care to many professionals. Sadly myself & mum experienced this when caring for my dear Dad, who passed from gastric  cancer  on 3rd April. 

My advice would be to continue to fight for the appropriate care & pain relief for your Dad. Keep an eye on the stock of vital drugs , as often we found they weren't ordered in time,  or ordered  late,  causing huge distress.

We also made sure that one of us stayed with my Dad whenever any nurses came.

This & checking Dad's care plan was the only way to understand what was going on.  Unbeknown to any of us , the day after Dad came home, the district nurse commenced adding Medazolam to the syringe driver. When we realised this, I explained to my Dad that was possibly why he couldn't keep his eyes open & that this drug was used mainly for agitation.  My Dad said that he didnt want this & the morphine was helping the pain, that he also felt calm.  Thankfully he was calm until his passing.

So next day we asked that Medazolam was no longer used unless necessary. 

Dad perked up , & lived for a further 5 weeks,  with full intellect intact until the moment he passed. He never required Medazolam & during his wakefulness we had wonderful conversations that I now cherish.

I often ask myself why the nurses commenced the Medazolam without any discussion. 

Ask lots of questions & try to familiarise yourself with the drugs. Ask for mouth care,  or salivex spray even before its necessary. Also barrier cream & lypsil or vaseline  is vital.

Spend as much time as you can with your Dad, it is exhausting , but will give you some peace in the future.

My Dad also gained a lot of comfort from gentle head massages, & having his legs , calf muscles & feet massaged as everything was tense from being confined to bed.

Even the morning that he passed , mum & I had given him a bed bath & managed to sit him on the commode. 

The carers refused to do this due to health & safety. But we refused to let Dad soil or wet himself when he was fully aware of his bodily functions. 

Again I am fully aware that we were lucky to be two of us, & even towards the end this was quite hard to manage.

Staying in control & knowing what your Dad's wishes are,  & ensuring that they are respected   will help you have  some peace in the future. 

I miss my Dad every day, he was my best friend. 

I send you love & strength & I am thinking of you. 

Xx

Dear Hot Pot 123,

Thank you so much for your reply. It is nice not to feel so alone in trying to process everything that has happened. 

But also sad to hear that you also felt & were very alone in your journey. 

I  know that so  many people are out there suffering.  This suffering could be eased with a national  standardised  EOL  homecare  pathway , it is currently all so confusing & so many different organisations involved with their own protocols, managers, funds etc...

Yet does anyone look at the true cost of this,  especially when it has all gone wrong?

 The cost of unnecessary  ambulance & paramedics call outs, trips to A&E, wasted controlled & other drugs that eventually were over ordered ,& I'm advised once returned to the pharmacy, are destroyed. 

Many of the EOL concerns & obstacles could be managed with an oncologist managing the EOL patient at home , weekly reviews etc....but no one seemed to  care. We appeared to have been left completely to our own devices & only after stating this to Dad's named GP, he arrange for the clinical nurse specialist from the local hospice to visit. Too little too late. She couldn't even advise about or sort out mouth care,  & sadly Dad passed 3 days after her visit. 

Also does anyone look at the toll on the mental & physical health of the carers. 

I haven't been able to return to work yet as I feel overwhelmed emotionally.

When ready I will sit down & write a letter to the government highlighting my concerns. I really feel that something has to change.

Again I truly am saddened that you had to experience this. 

Sending you a virtual hug & also everyone out there caring for friends & relatives. Xx