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Life-limiting illness

Mum stage 4 Non Hodgkin's lymphoma. 8 week in hospital that's been a mess. She wants to come home. We're getting no consistency in care or guidance. Surely it's basic despite staff crisis. Please add any wisdom to my ramblings x

13 replies

Knackeredhamster · 03/07/2023 08:05

Just need somewhere to vent.
It's not like on the TV where nurses doctors or counsellors give you any direction.
Most of the last two months have been about us her family trying to get to actually speak to someone about the smallest mundane things but things which are basic care needs.
She's a complicated case we understand that. Long term heart failure and weak kidneys on admission.
They tried for weeks to lower her calcium with fluid without affecting her heart.
Took forever to get a CT scan with contrast.
Non Hodgkin's lymphoma stage 4 but treatable in a relatively otherwise healthy person. She's had one round of chemo but doesn't want any more.

Now she's stuck in the same room, just getting over COVID again. We want her out, she wants to leave.

Noone is helping us with alternatives.
Not a peep from McMillan or st Luke's. We expected leaflets or a nurse to point us in the right direction.
Totally understand now we have to source all the information.
It's just the lack of anything in a situation where we are fighting for simple things like please give her water etc.

Most of the nurses are nice. Some don't 'see' her as a person.

God it's been horrendous.

Anyone here with any experience of end of life care.

We've found the McMillan office and someone is popping up today.

In our area, Devon we have St Luke's Hospice.
We also don't know who arranges care at home.

I'm so so exhausted and grieving. I have major health issues myself.

Would appreciate any comments.

I did contact Pals two weeks in but it's not really made a difference. She's on a haematology ward now where I thought care would be better.
But no.
There's fuck all staff. It's not the staff's fault.
But they're meant to be helping.

X

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cptartapp · 03/07/2023 08:22

FIL has just been diagnosed with stage 4 NHL and a malignant kidney tumour. Begins chemo this week. North West.
As an ex district nurse of many years I would say the care provision offered at home can often be as lacking and as fragmented as in hospital. No staff there either. I would never ever choose to die at home.
No advice but thinking of you and following.

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LadyGardenersQuestionTime · 03/07/2023 08:31

sorry this is so shit.

Is there a palliative or end of life care team at the hospital? Or a frailty team? There should be a discharge hub at the hospital too, can you track them down? Have you spoken to the hospice?

macmillan should be able to point you in the right direction. Are we talking months, weeks or days?

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Azaeleasinbloom · 03/07/2023 08:35

Sorry you and your DM are having to go through this.

Your mum may be very susceptible to illness if she’s had chemo, particularly for blood cancer, so the hospital will probably not be keen to let her go home until her blood counts are improved. Their concern would be sepsis. ( I am a former patient, not a Dr)

If your mum is certain she does not want further treatment for the cancer, the hospice would offer the best end of life care; MacMillan helped us when it was my mum, and they got her in very quickly, although she had been at home prior to this.

If she’s at home and needs nursing care, her GP should organise this - but they will want the hospital discharge letter which will give them instruction as to what care is needed.

Lean heavily on MacMillan to navigate this. I have had very mixed experiences with them, but they can come good in a crisis.

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kweeble · 03/07/2023 08:37

Can you raise via her GP and get the District Nurses to assess her needs? Care at home is patchy and would not fully cover round the clock care - can you fund that from her savings?
Home care can easily cost more than a nursing home. Even with a live in carer you’d need to give them breaks etc. and is really difficult.
The District Nurses should be able to recommend hospital bed and other support equipment. They can recommend fully paid care on NHS but it’s very limited now.
I think you may need to accept that home care is too difficult. I would look for an excellent nursing home and visit them yourself; hospice care may cover end of life care but isn’t for long term needs and is under resourced.

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Knackeredhamster · 03/07/2023 08:42

I agree dying at home won't be good.
I think.
We have to find out what's available.
I think we're talking weeks here.
Yes McMillan will hopefully point us in the right direction.

They tried to ring mum on her mobile 2 weeks ago but she can barely lift anything or speak.
When she didn't answer coherently that was that. I honestly thought they'd contact her next of kin as a matter of course.
At the time we didn't even know what she had properly so I didn't think to push it. Mum's so so emotionally fragile and I'm hopping carefully around any little convo about anything.

I guess we need to push now. Find out how to contact hospice advice.

Discharge hub, palliative care things that 2nd poster suggested never heard of them.

I probably sound thick or vagues but I swear even a bloody leaflet would have helped to put our motors in to gear here.

We'll have to step it up.

I think my overall op was my concern at the lack of any info or an actual person to approach.
Xxx

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Bluebells1970 · 03/07/2023 09:23

My Dad died from liver cancer in January after diagnosis last September. I had to fight the system every single step of the way - it was horrendous. The best support we had came from the specialist palliative support nurse - he was referred to her by Oncology. It did take nearly 2 months to get them on board though due to case load, by which stage Dad had become immobile and was seriously struggling at home. She was an absolute angel and really helped but she also only worked part time and most emergencies happened on her days off. In the end, we just weren't coping and through her, Dad was admitted to a hospice then given a place for his last 3 weeks of life in a nursing home.

I will be truthful, the care and support wasn't anything like I'd imagined it to be - even the hospice was short staffed and it was hard at times to get a decent level of commication going. Look after yourself as well as your Mum Flowers

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Knackeredhamster · 04/07/2023 07:56

Thankyou for your replies.
I'm grateful.
I'm sorry for the difficult experiences.

Trying to get mum moved out of hospital this week. To local hospital if they've got room.
X

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Knackeredhamster · 10/07/2023 21:52

She's in our local hospital for palliative care.

It's much better now to be able to see her swiftly.

I don't know how long this will take.
I can't even believe I'm writing these words.
She's devastated and doesn't want to leave us.

What do you say to that.

I'm just holding her and saying comforting things but I'm falling apart.

Sobbing in front of her on occasion when she cries.

It fucking hurts. It's not fair.

Edited to say mum now moved closer for palliative care, I need more words of wisdom in these end stages thankyou.

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Bluebells1970 · 10/07/2023 22:13

Just take each moment as it comes. I think I lived on milky coffee and Kalm tablets in those last few weeks. It's shit, and honestly, nothing you can do makes it less shit. You don't think you'll get through it but you do.

Flowers

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Knackeredhamster · 10/07/2023 22:43

Bluebells1970 · 10/07/2023 22:13

Just take each moment as it comes. I think I lived on milky coffee and Kalm tablets in those last few weeks. It's shit, and honestly, nothing you can do makes it less shit. You don't think you'll get through it but you do.

Flowers

Thankyou Bluebells.

I'm grateful for your reply as my op is totally different to what I've just posted.

I'm sorry for your loss.

I know I'll get through it. My DC graduates next week I'm scared I'll miss mum going.
I'm torn between a wonderful time versus the exact opposite.

I've been two separate versions of me for weeks. Trying to support my mum, trying to get my DC through finals etc.

Yep all pretty shit.
Xxxx
Thankyou again

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Rollinghill · 14/07/2023 07:27

I'm sorry you're going through this. Thinking of you and your family.

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Rocknrollstar · 14/07/2023 08:33

I’m sorry you are going through this. My mother died two weeks ago so I have very recent experience of this and although I don’t think our surgery is that good anymore, they certainly came up trumps when we needed them.

So,You need to speak to your GP and have him refer you to occupational health team. Your mum can’t be nursed at home without a hospital bed being delivered. My very elderly mother had a stroke and refused to go to hospital, we knew she was end of life, but the bed was already there as she had recently broken her hip.
Within hours the GP had put us in touch with the district nursing team and the local palliative care team. We had to collect an ‘End of Life’ package of drugs from the local pharmacy who were very upset. Her carers no longer had to be paid for but still only visited three times a day although they also provided one who stayed overnight so she wasn’t alone and who could call us/ district nurses if medication was needed. Towards the end, the palliative care team provided an overnight nurse. You only get a nurse overnight when the end is really near the end.

However, even with all that support - nurses on the end of the phone who would come and administer pain relief, visits from GP (for the first time in 6 months) - it was exhausting. My daughter and I were with her from 7.00 -22.00.

That said, we are both pleased that we did it and grateful that we argued with the paramedics who said she had to go to hospital. Mum had a peaceful last few days, with personal attention and surrounded by love.

Please talk to your GP and see if you can get your mother discharged to home but be aware that my daughter took two weeks compassionate leave in order to help nurse her grandmother.

I wish you and your family well.

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Knackeredhamster · 15/07/2023 08:49

Thankyou for your reply.

I'm so sorry you lost your mum.

As of a week ago my mum is in our local community hospital and once they discharged her from the large hospital we got our gp involved.

I did ask mn hq to edit the title so not sure it happened because I can't see an update.

I know now how immensely tiring and difficult it must have been to get things put in place at the home.

You never realise do you, it's so exhausting having to sort these practical things out in the midst of the grief and the emotions.

I'm hoping they will let her end her days where she is now 🙏

Xx

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