Mum refusing food, what will the hospital do?

[minipoodlemum]

My mum is 78 and has stage 4 lung cancer and a lot of other complications such as a swollen ankle and a portal vein thrombosis. She had surgery in January and was noticeably younger and stronger than the other ladies in the ward. She was bright and talkative once she had recovered from her surgery. She was discharged and was very mobile and independent at home. The plan was to have chemotherapy and it all seemed optimistic, even though ultimately she won’t be cured, we had hoped for more time with a decent quality of life.

In the last 6 weeks she has been admitted to hospital 3 times for infections in her ankle. She has honestly aged about 15 years in 6 weeks, and has now been diagnosed with severe frailty. The doctors want to drain the bacteria from her ankle but they say she’s too frail as she barely eats. I was shocked at the difference since January - she has 2-3 glasses of milk and a couple of yoghurts a day. A few weeks ago she was at least choosing something from the menu even if she barely touched it. Now she refuses to listen to the menu options. She doesn’t read much, won’t use her phone. I have no way of communicating with her if I don’t go to see her in hospital, and she doesn’t want conversation - she is miserable and snappy. I brought her magazines and she gave them away, she won’t watch TV or anything. She seems so depressed and bored, she tells me she cries in the night with the pain from her leg. The doctor had a stern word with her yesterday and told her they can’t drain the bacteria from her leg without her becoming stronger.

has anyone been through this? It feels like she has given up way before she needs to. My dad spends every afternoon at her bedside and brings her things. I am 400 miles away so I go up every few weeks and take in extra yoghurts, biscuits, fruit etc. She has no interest in foods that she enjoyed as recently as January. She gets acid reflux so I know it’s unpleasant sometimes. I am wondering what the hospital will do if she is too poorly to go through treatment. Please tell me if there’s anything else I could try.

@Contrarymary30I am sorry to hear that you’re suffering from stage 4 lung cancer too. Oddly, the cancer itself is not the most pressing issue we have, or causing any pain. The pain is from her ankle which is very swollen. She also has an infection which needs surgery but she is too frail for the procedure.

We have seen some good progress this week - she is on tablet ABs instead of IV and she is brighter and more comfortable. She has been walking using her walker and she is able to move between her chair and bed without struggling. She has also been eating more. This is all good progress towards reducing her frailty, which is currently level 6, so she can have her surgery. It looks like she may be discharged today so I need to put a package of goodies in the post for her.

@minipoodlemum The swelling and pain are likely connected to the cancer. The swelling can be due to fluid retention, as the body is not functioning as it normally would.

The body works as a whole, so symptoms like this are not separate issues. Fluid retention is quite common in advanced cancer and with organ function being affected.

I'm glad your mom is eating a little more

Oh, that is interesting as her ankle is listed as a comorbidity on her diagnosis so we thought it was a separate issue.

@minipoodlemumThe “co” is the key part there. It just means it’s listed alongside the main diagnosis, not that it’s separate need.

Your mum would be classed as having complex medical needs, so they list all the related conditions together, even when they’re linked

I've been through all this with my late mom and my late husband, with a consultant friend to help me navigate it all hence the additional knowledge

Mums death cert was hospital acquired pnumonia , that was the least of her problems

The swelling is definately part and parcel of advanced cancer

I refused to accept my mum coming home, Im ex NHS staff - a bed manager - so I know the speil

Mum was dyeing, there was no treatment, they wanted the bed and I totally understood and I worked with them getting mum to accept a DNR, but to bring her home - nope.

I would have if she could have made it to a bidet beside the bed. I had a room cleared for the hospital bed , the pressure mattress , the gas bottles and bidet, but they couldn't get the carers and as I said, how could I, half the size and weight of mother, be able to get her on the bidet ? She couldn't get off the bed without 2 nurses and a hoist in the hospital and yet they were wanting to send her home

@keffie12 I am so sorry that you’ve been through this and I am very grateful for your advice, it’s been a steep learning curve that’s for sure

@suki1964that’s so hard - and scary that they were prepared to send her home without carers. My mum gets district nurses coming round for now. I work in hospitals so totally get the bed management side of things. Ironically my mum’s pre-chemo appointment has come through but she can’t take it unless she gains some strength. She hates her walking aid, hates being dependent on my dad and hates not being able to make her own food.

Its an even harder transition for them then us

The Friday before we had the chat about the DNR mum said it had been mentioned and to think on it, her words to me were "how can I allow them to let me die when Im not ready? "

It broke me

It's a real tightrope walk at this stage. . We dont want to wish someone dead or hasten it, we also dont want them to suffer , nor can we bare seeing it

I hope you have Macmillan in to administer pain relief. I dont want to scare you but community nurses cant make adjustments and need GPs to sign off, waiting on a GP can be hours. I sat with MIL and a BIL, both being cared for in the community and neither death was what we would wish for

I wish you everything strength going through this I truly do

@suki1964 you’ve been so helpful. My mum today asked me to go with her to a GP appointment to advocate for her. She has decided she doesn’t want the chemo, she only wants to be pain free. She has MST tablets and liquid morphine but she is still in pain. She picked some foods she’d like and she would prefer to stay at home for however long she has left. She was calmer than I have seen her for a long time, she is not afraid of dying. Getting her effective pain relief is my job this week.

Getting the pain relief is utmost, and whilst you can have the best GP in the world , they cant be there at 3am and the chemist is closed . She needs a driver fitted and a McMillan team in twice a day

Get a Macmillan team on board . Advocate for pain relief and dignity over everything And if your mum like mine, was so totally independent until this diagnosis , speak openly with her,

Its daft things to us, but mum had a fear of being sent to a side room, so when the hospital were planning it, I stopped it unless it was for clinical need , when she was in so much pain, I told them they were not to wash or dress her, it was too much for her .

Im so grateful that mums passing was less then a month, and Im grateful that I knew her so well and I managed to get her a good death . I fed her "forbidden foods" sent her racey clips and retold some really naughty stories and wound her up terribly

But I was there till the end . She wasnt alone

My mum always treated me as the daughter, the one who needed to be told how to put a wash on, how to hang the washing - etc etc etc - even in my 60's I could never do anything right But under all that , I knew her so well , as Im sure you know your mum, She's trusting you . Talk openly and honestly and let her have a good death xxxxx