Hospital and NG Tube

[katykatems]

Hello

I'm perpetually shell shocked at the speed of this horrible, relentless dementia journey.

We moved Mum into a care home on 14th June, reluctantly to say the least. 10 days in she had a fall causing multiple fractures (she has osteoporosis) and has been in hospital for just over 2 weeks.

Mum is middle stage mixed dementia, and is often quite lucid, though since being in the hospital she's been a lot more confused as you would expect. Mum is incredibly particular and restrictive about her food and drink, always has been, and has a phobia of vomiting. Undiagnosed ARFIDS. I strongly suspect she is also neuro divergent.

She's barely eating or drinking since being admitted and the doctor has asked to call me tomorrow to discuss an NG feeding tube. I have questions to put forward to them and need to understand the risks and implications but my initial feelings are that it would be far too distressing for Mum and that she simply wouldn't tolerate it. If we're at that point though, not giving consent would be essentially be waiting for her to fade away wouldn't it...? It feels way too early to be at that point. I had a chat with my dad (they're divorced but close) and he says there's no choice, that she's not choosing not to eat to end her life, she's unsettled and weak and in pain. She has been battling with appetite for months before this, because of the dementia and her lifelong anxiety.


I don't know what to think..


Thanks in advance for any thoughts xx

 

[My Mum's Daughter]

It a really difficult one for us to answer as we all have our on views and I wouldn't be comfortable in influencing your decision however, before discussing a feeding tube, I'd be asking what your Mum will look like after these multiple fractures and a hospital stay? Will her mobility be affected? Will her confusion lift? That sort of thing.

Whatever decision you come to, members will support you. Wishing you much strength.

 

[Sarasa]

Welcome to Dementia Support Forum @katykatems. I'm so sorry to hear about your mum's decline.
I too would be very concerned that an NG tube would cause more distress than it would help. My mum certainly found drips difficult enough to cope with, specially when she was at the stage your mum is at, when she seemed fairly lucid at times. Later on she was more accepting. Also my brother was in hospital for nearly a year after a cancer op went wrong. NG tubes and later peg feeding needed a lot of input from him to make sure things were being administered correctly. I doubt that your mother could manage that.
It could be that your mum has got to the stage where she really can't manage food any more and that any intervention is just making her more distressed. I think have a very frank talk with the doctors tomorrow and see what they think.

 

[Violet Jane]

That's a very difficult decision for you. I think that you need to take advice from the doctors. If a NG feeding tube is what I think it is then I wonder whether your mother would pull it out or try to put it out. Would she need to be sedated for her to tolerate it? Then there's the question of how long she would have the tube in. Is the idea that it would be a temporary measure until she builds up her strength and can be discharged back to the care home? Personally, I don't think that she could be kept alive by a feeding tube long term.

You could try a feeding tube and see how your mother responds.

If it were not for the feeding problems could your mother be discharged, perhaps to a nursing home if she's currently in a care home without nurses? It could be that her eating will improve once she is out of hospital. Hospitals are not good places for people with dementia who usually decline when they are there.

 

[Grannie G]

My husband was offered one and I refused on the grounds he wouldn`t be able to understand what it was for and could be frightened.

The doctor was visibly relieved by my decision. He was duty bound to offer one but agreed I made the right decision.

 

[katykatems]

Thank you all for your input. You've brought up some useful questions for me to raise tomorrow.

Mum would definitely try to remove it. She's been pulling at the cast on her arm endlessly and pulled the catheter out several times I discovered today. The care home manager said they wouldn't be allowed to sedate her to insert it so I'll put forward these concerns.

We really want her to be discharged asap and had been hopeful for this week but her bloods showed an infection at the weekend. She's on antibiotics but that needs to clear before they'll consider her fit. The eating and drinking may be a factor too, I'm unsure, but I definitely think she'd eat more back in the home.

 

[Violet Jane]

I don't think that it's absolutely necessary for an infection to be cleared before someone is discharged from hospital. Oral antibiotics can be given, and there is provision for IV antibiotics to be given outside a hospital setting. Is her home a nursing home with staff who can administer IV antibiotics? If not, can a Hospital at Home service or district nurses administer them?

It may come down to balancing food intake against antibiotics. The hospital may take the view that it would be better to take the risk of discharging your mother with an infection rather than keeping her in hospital when she won't eat.

I feel for you. You have some difficult decisions to make. Please keep posting for support.

 

[katykatems]

I thought I had prepared myself for the conversation with the doctor today but in fact she told me that they don't want to tube feed because the medical opinion is that Mum is now End of Life, basically based on her not eating or drinking. Rather a bombshell even though it of course makes sense that if someone isn't eating or drinking they can't continue for long.. Aside from the emotional shock and processing, I'm just totally overwhelmed by the language and apparent procedures and timeframes.

The doctor said that from experience and observation in this situation things can happen very quickly so they will be pursuing a fast tracked discharge to get Mum into a home and be kept comfortable. She said this will likely be around 5 days, though the Dementia Support Nurse later told me it can be much longer as can be very involved.

The Care home said they need to reassess Mum before saying she can go back but also that they don't take CHC patients. She said we could continue to privately fund however.

The Care Company who cared for Mum at her home prior to moving and who I'm paying to provide care for her at the hospital suggested Mum could move back to her house for end of life as CHC would cover their care costs for a timeframe. But I just put the house on the market last week and accepted an offer 2 days ago because Mum ran out of money so surely that's not feasible without knowing how long we would need the care for...

I'm baffled by what to expect, what to do and how to approach the whole situation. Can someone please help me to understand what End of Life and CHC actually mean, and simplify what's forthcoming? Am I to expect the same dragging of heels, frustration and lack of support that we've experienced so frequently over the past months?

Any shared experiences would be most appreciated. I can't navigate the broken and nonsensical system carrying such worry.

 

[My Mum's Daughter]

I'm so sorry to read your latest update which must have come as horrible shock to you.

If I was in your shoes, I think I'd be looking for a nursing home so that there's a qualified nurse on duty 24/7. If your Mum had been in her current care home for a considerable amount of time, I might look at this differently as there would be strong carer/PWD bonds but she wasn't there for long enough for these to form.

Suggest that you take the weekend to process the conversation with the doctor and then on Monday, ask for an urgent appointment with a hospital social worker. They will be able to talk you through the options and help you to decide on the best plan for your Mum.

 

[Violet Jane]

What a shock for you but at least the doctors were clear about what should happen and you don't have to make a decision about a NG feeding tube.

CHC is funding for care. The money comes out of the NHS budget. It's very difficult to get for dementia but I understand that it should always be awarded when a person is end of life.

I hope that others will come here to contribute as I have heard that, whilst some people who are classed as EOL die very quickly, others can live for quite a while on very little food and perhaps nutritional drinks.

 

[katykatems]

Thanks for your continued support. This forum is such a lifeline.

Today another twist to the tale. We visited Mum expecting to be shocked at her decline but instead found her to be much brighter than the last visit. It took her a while to come to but then she was sitting up, smiling, making jokes and joining in conversation. Asked for a hot drink and water whilst we were there and had a good few mouthfuls of each, along with letting me feed her a few small forkfuls of cake. She looked and sounded much more like herself - and certainly not End of Life in my books.

The Dementia Support Nurse popped in to see me and agreed that Mum is nowhere near as poorly as other End of Life patients she visits, and she feels Mum won't meet the criteria of the Fast Track Discharge assessment that's happening in the next couple of days. She said if she doesn't, discharge will take a lot longer.

What to make of it all.....

 

[SherwoodSue]

My heart goes out to you all. What a rollercoaster. If only you knew the trajectory and its speed you could plan together with the medics and SW. Just when you start to adjust it all changes again.