Elaine, my heart goes out to you and your sister, I am in almost exactly the same position, Mum 79 was diagnosed with treatable breast cancer 23rd August and then terminal lung cancer on the 30th. My Dad 81 has cancer too. Me, my sister and Dad were looking after Mum at home, we were being passed from pillar to post with no one taking responsibility, no nursing or equipment of any kind. My parents live across the road from their doctors but apparently in different healthcare areas to each other (the local council boundary is elsewhere) After numerous phone calls we were due a ‘needs’ assessment this Thursday where we would have to take mum to a palliative nurse 15 miles away somehow. Mum collapsed at home last Sunday and was taken to hospital, she can’t eat or drink, has a heart condition and diabetes also. She has been pumped full of fluids and morphine and is having excellent care in hospital, however, she is dying. She wanted to die at home with some dignity and this is not now possible. I think that everything has happened too quickly for the healthcare system to cope with. They probably have a warehouse somewhere with lots of equipment spare for people in our position but they don’t have one with nurses, I think there is very little capacity for adding people to the nursing roster. All I can suggest is hang in there, keep trying, keep on at everyone and hopefully you will be offered more help. 

Some chemists have a delivery option for repeat prescriptions, this may be an option?

Please know that you are not alone, sending hugs and much love x

Thank you yes i have flabbergasted at the hole in the system that leaves you floundering without adequate suppport and i was sure we could not be alone in our experience. When this is all over i feel like i want to feedback all our experiences ans improvement measures somewhere and will try to do so. 

Your experience sounds similar and i empathise completely also. I hope you have reached out to marie curie for respite we have found  them wonderful. As a charity they can only offer limited respite which is nowhere near enough but the nurses have been amazing so far.

The process in your case seems similar to ours inasmuch as it has not kept pace with need and that seems nuts as well as inefficient. Ive had calls thia week about personal alarms and things that were put on motion weeks ago and we are now past the need for.so while folk between the scenes have been working on them too much time has passed and everyone has wasted their time. I thought our mcmillan nurse was supposed to be a central coordinator but we have found her a jobsworth ans lacking the chip the other people have had who have all been so lovely.

I hope your situation improves. I think it helps a bit to know your frustrations are not unusual. It seems sad to me that a stressful enough time becomes worse be wading through treacle like this. The system quite rightly tries to keep people oit of hospitals in this situation but there is not adequate hospice care or community care and so people like us are left to it and spending time on emptying catheter bags running around to gps and pharmacies (yes we looked into delivery etc but meds keep changing and weve never been able to organise plus a few things weve needed immediately so couldnt wait for pharmacy delivery anyway) and monitoring fluid intake instead of just holding mums hand and supporting dad.

Im normally diplomatic and calm but i ranted at swveral folk yesterday so im hoping some people might come to our aid more we shall see. I think we have been too nice so far so again another recommendation of mine would be not to worry about kicking up a stink if need be.

All the best. Any other advice i can suggest if things alter for us i shall let you know incase its useful. 

Hi Elaine,

I really feel for you all as you & your mum are falling through the cracks and I'm sorry to say but I agree with you about the Macmillan nurse - we & others I know have had similar bad experiences with their lack of help.

I know your mum is on a waiting list for the hospice but have you enquired if they provide a 'Hospice at Home' service where a nurse comes to the home? A nurse came out from our local hospice to see my mum when she came home from hospital in her final weeks. At the time we didn't need any help but it was good to know we could call on them. Mum had all the equipment delivered, had carers coming 3 times a day (she was paralysed from the waist down due to the tumour causing spinal compression) and district nurses visited twice a day (lunchtime and early hours of morning) mainly because mum was also diabetic and the steroids they had given her were causing massive fluctuations in her insulin levels. Before she was ill enough for hospice care she was rushed into hospital as she started to go into a diabetic coma & sadly she passed away in hospital 10 days later.

So please enquire at your local hospice - also stop being too accommodating - put your foot down with the GP surgery & Macmillan nurse - those who shout loudest gets help. I hope you get the care that's desperately needed.

Angie x

Elaine, I cannot believe in this day and age that this happens, we are not alone but that doesn’t help at all, I know.

i have today had a meeting with the 2 palliative doctors at the hospital, I am informed that should Mum come home that she would receive 3 short morning visits for washing/dressing and some equipment, that would be it.....

However, it appears that if you have your loved one admitted to hospital they are fast tracked into hospice care in order to free up hospital beds, particularly if you have visited your doctor and received a ‘sicknote’ Stating that you are under considerable stress and/or anxiety and were struggling with the thought of not being able to adequately care for that person.

The palliative care Doctors were lovely and extremely helpful in explaining how the ‘system’ works and how to make it work for you.

I hope this helps

Wishing your Mum peace and the ability to die with dignity. Wishing you quality, stress free time with your mum x

Hi angie thanks for your reply and condolences on the loss of your mum it sounds like you went through a lot. I hope you are coping ok. 

Thanks for the suggestions. We have had a lovely lady visit us from the hospice a couple times but they dont offer any in home help other than complementary therapies. My mum did have one of those. We so have district nurses to call on for any pain relief or distress and we have had to call swveral tines a day in last few days as mum was sick in pain and just so exhausted. They have been great but the big gap is any real ongoing day to day support esp as this needs 24 hr observations which my sister and i arw splitting but we are knackered now. Last week we had marie curie sessions  for the first time - max three sessions - which was good but still leaves four nights and seven days. Everyone ive spoken to has conceded that we have fallen through cracks in support provision. Apparently such a lack of hospice space is unprecedented. Much sympathy but no solutions. At an already emotional time we have lacked a proper guide to hold our hands and absolutely no solutions other than hospital . If she had the medical need we would put her  there but i refuse to be forced down that route by an inept system!! 

Thanks karen i hope you are making good progress and that's good if you have had further help

Yes i had my suspicions about the hospital thing.... However its a risky strategy. Weve been told we could admit her there but i refuse to be backed into that corner. Ive been assured we are top of hospice list and the staff there have been great but obviously we dont know if we will get in in time and im kind of resigned now to accepting it very probably wont happen.

If i have the energy after all this i do intend to take this further in some way. To leave families unsupported like this seems unbelievable. My sister and i fully expected to be actively involved in mums care but  i feel like weve been left swimming im water too deep ans just nobody to come to the rescue. At an already stressful time it just adds to the distress. 

Thanks Elaine, yes we’ve made progress but not what we’d hoped for, Mum is too Ill to come home, she’s on medication for her heart, diabetes and the cancer. They’ve stopped giving her antibiotics for her infection and her one remaining kidney has packed in following chemo so they won’t let her home and I think she maybe has a few days left.  She may not be well enough to transfer to the hospice but the hospital are so lovely with her, everyone is so kind, it’s just she’s being disturbed every 30 minutes for some test or procedure and she just wants to sleep, we can visit anytime and stay all night as it’s a private room. I agree this ‘journey’ is very much like a merrygoround that you just can’t get off. Dying with dignity doesn’t seem to exist which I find inexplicable. My Mum told the consultant yesterday ‘if I were a horse you’d take me out and shoot me’  absolutely heartbreaking! I’d take her to Dignatas in Holland if she could travel. I’m sure there’s some reason why we don’t have something similar here but I wish there was. 

I hope the hospice comes through for your Mum soon, for all your sakes.

stay strong and sending best wishes x

Hi karen im glad your mum is in good hands and you're content with the scenario. I totally agree on euthanasia having experienced this and the pain and distress all round its a moral and ethical no brainer to me!

I think we're at a similar stage to you inasmuch as i think we are looking at days now. Every 24 hours now seems to bring further decline. My mum is exhausted with it all and i want this suffering to be over for her even it it means i lose her. 

I have spoken and ranted at several people these past two days and just cant believe nobody can help. We are exhausted and i would happily pay someone to get some sleep. Nobody can even refer me to a private nurse or carer or agency either. I googled and called one but it would take days for them to start the process so that isnt fit for purpose either. Our mcmillan nurse is now out the picture we agreed to part ways and her superior is coming to see me today at my request. We feel totally let down by her. Whist shea coordinated a few services there has been no emotional or family support. No signposting. No offer to sit down and chat or hand hold us through the process. We intend to go to our msp in due course to share our experience as so many things could easily be improved. A simple example occurred yesterday when i took a prescription for breakthrough pain relief and ampules for our juat incase box to a pharmacy. I stood in a queue only to be told that they didn't stock controlled drugs like that. They suggested another pharmacy but it had just shut so i couldn't get them. Surely someone could have advised me during this process that certain drugs are not carried by all pharmacies and provided me with a list of suggestions. Instead i end up driving round stressed like a headless chicken at a time i should be with my mum. Lots of examples of simple ways to rectify what end up becoming the straw that broke the camels back moments and i hope my feedback may be able to make things better for someone else following in our and your shoes if i can find someone who will listen.

Im sure loads of people like us have feedback and suggestions but aren't in the mindset or place to do so at a time of bereavement. So i am sure a lot of concern and negative experiences are never logged or actioned. 

May your mum and mine find peace soon and eternal life in our wonderful memories and endless love for them x

hello 

when my dad was on end of life care we had a massive help from sue ryder, we had night care nurses in 7 nights a week we had careres come in morning to wash dad and change his bedding and see to him needs then late afternoon they would come back ... dad refused to go into a hospice so we has a family did the day care up to 10pm until the night nurse team took over, there has got to be more help you can get !! fight for it