Mum drastically ill - COPD

[JuicyDrop]

This is going to be long so apologies in advance.
My mum is 63 and has been unwell and failing for the past 12-18 months. She’s an ex- smoker, asthmatic and has always been very slim in build. Over the past 12 months her general health has been getting worse- many more chest infections, breathless on walking and struggling to even do the smallest things such as eating, getting washed and dressed and even making a cup of tea. She had two hospital admissions in the latter part of last year, both times diagnosed with pneumonia. It was also discovered that she had an infection in her lungs called NTM which is like an off branch of TB, but not contagious. She’s steadily been getting more and more poorly over the last 6 months- chronic cough, struggling to breathe and losing weight drastically.
Fast forward to 27th December and she became unwell again- ambulance called and she was rushed in with very low blood pressure, low oxygen levels, high heart rate and was very poorly. She spent the day in resus and then was transferred to ICU where she spent 6 days. She was then transferred to a respiratory ward and remains there to this day, 8 weeks on from getting admitted.
I just can’t believe how she is now. She’s on oxygen 24/7 (they have been unable to get her off this despite trying several times) is unable to walk, has been fitted with a feeding tube, doubly incontinent and is incredibly frail. This is a lady who was still working full time up until her latest admission (despite not been well enough really) - the change is drastic. She weighs just 5 stone. Whilst in hospital she has finally got a diagnosis of end stage COPD and the doctor said he would be surprised if she is still here in 12 months. I just can’t comprehend how quick this has all happened and the state she has been in now.
We obviously want her home desperately but the doctor at the hospital are not been forthcoming with any help or information - we had to go through Pals 6 weeks ago just to find out her diagnosis and prognosis. They have mentioned today about her been discharged but we’ve had no OT assessments or anything- the house is not ready for her. She is unable to walk and the bedrooms and bathroom are upstairs In Her house. She will need a lot of care and my dad still works full time. We’ve never had any experience with oxygen or feeding tubes. She is a completely different woman now to who was sent in to hospital and I don’t think the doctors are grasping how much she has changed and how much more care she now needs. Has anyone got any experience of this? What should our next steps be?
My heart is breaking at how unwell my mum is and I can’t face the prospect of losing her, but at the same time this ‘stuck in limbo’ is soul destroying. We just want to do the best by her.

I’m very sorry to hear what an awful situation you’re in with your mum. It must be such a shock, it all happens so quickly. I don’t have any advice, but hopefully someone will.

I’m sorry to read this. I went through a very similar situation with my own Mum. Basically you will need to refuse to have her sent home on the grounds it is an unsafe discharge. Then you will need to get her assessed under NHS continuous care so she can get some fast funding and OT support to sort things at home for her (my Mum had them come in and put in a stair lift and a bath lift so she could get to the toilet etc and use the bath). She was also given funding for carers to come in several times a day. But - you will really need to push for this, the more you agree to do the less they will offer. (My Mum owned her own house outright, the funding was given due to her needs - copd, Crohn’s disease and some mental health issues- depression, she was still very “with it”).

https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

They may have mentioned her going home as in leaving hospital if they cant do anything else for her, but she would likely be sent to a discharge to assess setting. Certainly there will need to be a MDT meeting to discuss next steps - they wont just turf her out especially if she has a feeding tube and oxgen.

Can a hospital bed be putting in a room downstairs? Is using a bathroom again a realistic goal? Do your Mum and Dad want her to come home? Or would they prefer a nursing home?

I suspect the dr do grasp the difference but there is nothing they can do to make her better at this stage.

This maybe helpful

cks.nice.org.uk/topics/chronic-obstructive-pulmonary-disease/management/end-stage-copd/

So sorry to hear this. First thing is to have a meeting with the doctor and nurse to ask for a realistic prognosis, if it really is going to be weeks then they can refer her to the palliative team, especially ask what treatment she is currently on and is it working. Or is she not going to improve and they are looking at palliative care . She cannot go home with oxygen and a feeding tube unless she has been referred to their lung care nurse, dietician and District nurses. At home she would need carers, a hospital bed and mattress, all this is organised after she's had a full care needs assessment in hospital. If her prognosis is very limited they can apply for chc fast track funding. The doctors need to have an honest discussion with you all. Is her home suitable, would a bed fit downstairs. Do not agree to discharge until she's been properly assessed, everything is set up and the support is in place. Sending you best wishes.

Thank you for your messages so far.

we really do want her home and not in nursing care if we can help it. My mum and dad live in a council house, I’m not sure if this affects what adaptions can be made to the house to help her or not. There is definitely room to have a bed downstairs and that’s what we are looking at - we just need time to get all this in place. At one stage we weren’t hopeful she would make it and neither were the doctors so to be planning her coming home even if not for long is lovely but also a shock as to what will go into that. We will definitely need some training on her oxygen and feeding tube- the doctors have made no mention of anyone coming out to support us with this but obviously her discharge is in the early stages and it may come up in the next few days.

And yes the doctors haven’t really spoken to us in the whole time she’s been in. We had one conversation with him which is when he gave us the diagnosis and said that he would be surprised if she was here in 12 months, but that’s not very clear really in terms of what he’s feeling her actual prognosis is. She’s currently still receiving active treatment for a lung infection she’s picked up in hospital- this has been life threatening at times as it became resistant to antibiotics. They tried one last antibiotic last week and this is just starting to work slowly. She is still having this by IV but they have said she could have this at home with nurses coming in to do it. We want her home but we also want it to be safe.

You don't need to worry about arranging a bed. She needs a full mobility and pressure area risk assessment, then the district nurses or therapists arrange a bed and mattress plus any small bits of equipment that may help. They also arrange home oxygen and all the feeding equipment and liquid food. Doctors don't get involved with discharge planning except for medication and follow ups. There should be a discharge worker on the ward but you'll need input from doctor, ward nurse, therapists, dietician, palliative care, gp and District nurses.

If its a long term iv antibiotic the district nurses can do that at home.they should also discuss with you what happens if she doesn't improve. Is she for future hospital admissions.

Yes, it is a long term antibiotic. They said ordinarily she’d be expected to come to hospital every day to have it done but she’s obviously not well enough for that so they were going to see if district nurses would be able to do this in her home.

I’d personally be against any future hospital admissions for her as I do think we are at a stage now where it’s futile and it’s about keeping her comfortable. They haven’t outrightly said she is palliative care though. Mum also still has capacity so I presume that decision would be up to her.

In my experience nothing will start happening until she is medically fit for discharge so in your Mum’s case until the chest infections is clear.

It might be worth considering discusing what happens if it isn’t getting better. Would she rather die at home?

I’m sorry you’re going through this. My Mum died from COPD a year ago. The uncertainity isnawful.

The two infections she has now in her lungs take 18 months to clear up. That’s 18 months of antibiotics. This is where my confusion lies- they are actively treating these but have basically told us she won’t be here in 12 months.
We also aren’t sure how much mum knows- the conversation we had with the doctor about her diagnosis and prognosis was done in the family room away from her. We are unsure if she knows how poorly she is and that the doctor gave her around 12 months at best- she’s never made any mention of it to us. We’ve been wanting to have a conversation about her wishes but she’s been very very low and her mental health is shocking so we just don’t know how to approach this.

@JuicyDrop yes adaptations can be made to a council house, LA must approve. She needs OT ax asap.

@bluegreen89 I agree- it is fundamental we get the OT assessment ASAP. I actually work for the NHS in mental health of the elderly so I do have a bit of experience in how these things go and should be done.
There was a brief talk a couple of weeks ago about them sending an OT to her home but this was abandoned when they discovered she had another infection. She was also having physio a couple of weeks ago but this hasn’t happened since then- I’m guessing due to her picking up another infection and struggling again.

Sorry you're in this situation op.

My mum was a 20 a day smoker for nearly 50 years and the anger I felt towards her as her health declined so fast in her last couple of years was all-consuming. It eclipsed the sadness and desperation at her impending death.

I hope you can find the strength to care for her and yourselves over the next year.

When my Mum was in her last few days before they decided to offically withdraw treatment the decision was made to continue to give IV antibiotics past the time the cannula should have been removed because they knew they won’t be able to get another on in anywhere else. When I look back on it was madness.

If she cannot walk and is doubly incontinent then if she is to come home she will need the same level of care there that she's getting in hospital i.e. a hospital bed, visiting nurses/carers who can deal with her oxygen tanks, feeding tubes and related feeding equipment, personal care, hoist, etc. Do not agree to allow her home until the home has been adapted and a care package is in place. And if that isn't possible then she will need to go into either rehab to get her up and about again, or a nursing home.

Do not agree for her to come until everything is in place , and you are fully trained in all her needs
If the family arent able to be there 24/7, then tell them that!

She needs a Care Package in place before even talking about discharge
Ask about ‘continuous healthcare’
Due to her oxygen needs, you shouldnt have to pay

She needs to be discharged to a proper assessment facility for full assessment of her needs and perhaps some physiotherapy to aid as much as possible with her mobility. Despite what someone above has said, many hospitals don't automatically do this, and failed/unsafe discharges are the usual result.

This was all what was supposed to happen with my Dad (who also had COPD) four years ago but didn't. They just sent him home, dumped him in his chair, washed their hands of him and left us to flounder. And flounder we did. We ended up under the crisis team at Adult Social Services, my Dad got very distressed and became much worse very quickly so had to be readmitted to hospital. He never came home again and died about a week later.

Tempted though you are, do not simply agree to have her home. It will be an unsafe discharge, both for her and for you and your Dad. All assessments must be pro GTperly done first and a full care package will be needed and this could even mean 24 hour care at home, if they can even send her home.

It really is incredibly difficult to look after another adult, often having to move them around too, when they have become immobile and probably doubly incontinent. Difficult to the point of near impossible. It isn't even remotely like changing and bathing a young child. Believe me, I know. I was forced into trying to do it and couldn't. It was a total disaster and a very difficult time.

You MUST have a full package of adaptations and care in place and will have to push hard for that. Please do NOT underestimate what that will need to be. Don't be pushed into the impossible situation we were. Please.

I hope you are able to get your Mum home, but be realistic about it and about what help and care will be needed. It needs to be done safely too.