End of life without cognitive decline?

[Magnificentkitteh]

My DM seems to have a lot of signs that she is approaching end of life from decompensated heart failure - lack of appetite, sleeping a lot, reduced body temperature, v low blood pressure, incontinence, dry mouth, milky eyes, I could go on. She is currently in hospital with flu and pneumonia but she also has acute kidney injury, anaemia, low minerals of various kinds a broken arm, osteoporosis. In short she's in a bad way. But mentally she is still pretty well when not asleep, and getting really fed up with them keeping finding new things wrong and treating one thing that makes another thing worse. My head is all over the place. I feel like she's in the final days of life if I'm honest, but no doctors have said this, they're treating her with antibiotics, infusions of various kinds, a bear hug blanket thing filled with air, and talking about intensive physio at a rehab hospital.

Can someone help me understand what to expect? I'm currently with her but don't know whether to go home to London (2 hours away on train) and come back next weekend, or if we really are at the end stage. I've posted similar threads before and got helpful advice but things have moved on a bit so thought I'd start a new one.

Can you speak to the doctors or nursing staff?

How old is she? Have you talked EoL stuff with her / medical team at all? My mum has a DNR and we are under strict instructions to let her go and not prolong. She is currently well ish but suffers pain and breathing issues. Speak to the doctors caring for her and make sure she has o her notes that she gives them permission to talk to you (assuming she does).

Stay where you are OP, the end is near and you'll never forgive yourself for leaving.

Oh op. Sending hugs.
Have they got her on palliative care?

Can you talk to a hospice nurse? Ask to be referred to one, they were brilliant when we faced similar, with explaining what to expect.

Poor woman and poor you. I would insist on talking to a doctor or nurse. You have a right to know your mother’s prognosis. I hope you find someone to help. Terrible position to be in.

So sorry you are going through this. It’s so hard to watch parents deteriorate. Please ask the medical staff, but as it’s a weekend you may need to wait until Monday. My mum was in hospital for 23 days before she passed away. Doctors were not talking about EOL care, and were treating her for a lung infection. She has lots of other issues as well. Sending you strength.

Sending love

My mother died of heart failure and had no cognitive failure at all.
There had been a few months of crises and in the end she was in hospital. She begged to be allowed to go to the hospice where she and my dad had volunteered for years and dad had died there. It never happened. He breathing was very distressing and she was begging us to let her die. She spoke to a senior nurse and made it clear she had had enough. The nurse managed to find a palliative care consultant who came to see mum. He had a long conversation with her (we were in another room so didn't hear it).

He then came and spoke to me and my sister and explained that with heart failure many doctors don't recognise end of life and continue to strive to heal. He said he was completely satisfied that mum was of sound mind and knew her wishes. he then made things happen. She was on a horrible admissions ward and he got her moved to a private room, withdrew all treatment apart from pain relief and she died 12 hours later.

I never knew there was such a thing as a palliative care consultant and was hugely impressed with him. This was only a small district hospital, not one of NHSs finest.
Hope this is useful.

Similar happened with my DF when he was approaching end of life. Similar situation to your DM - lots of medical issues but no cognitive decline at all. We got the palliative care team involved who were helpful to a degree but it's such an incredibly difficult time with peaks and troughs and absolutely no way of knowing how long you have until the end.

From my experience, my DF was in hospital and there was talk of getting him out and into some kind of rehab before going home again. Although he had lots of medical issues, none of them were immediately life threatening at the time so he was still considered for possible options for recovery.

It's tough and there are no clear answers or predictions with such complicated medical issues. Expect the unexpected! You just never know OP, which isn't helpful I know. I just made sure that I'd said everything I wanted to say and just kept chatting to him as normal each time I saw him. I couldn't be there with him 24/7 and he wouldn't have wanted that anyway. I was led my the professionals and the palliative care team and just made decisions with my DF on a day to day basis - there's not much else you can do. He was DNR but accepted antibiotics and scans etc to check what was going on. He weakened in the end after a few weeks and succumbed to a complication that we didn't expect but he was definitely done by then.

Sending hugs and strength to you.

This isn't massively helpful tbh as I was in this position 2 months + ago and we are still here. I can't stay put for 2 months at a time. My kids are in London, as is my job. I need to work out how best to pace myself.

This sounds obvious doesn't it but I don't seem to get clear answers. It's all "we are just treating this and then we will do that". I don't think she's given full consent for things to be shared so conversations tend to be at her bedside, which is obviously sensitive, as she hasn't said she wants to die, just that she's fed up and wants to go home

This sounds painfully familiar. I'm sorry if I've dragged up memories of a difficult time. At the moment I'm making decisions on a one day at a time basis, focussed on making sure she has someone visiting each day and being prepared to make an emergency dash if needed. I've been back and forth 3 times in the past week which is costing a fortune but allowing me to balance things as best I can. Some things have got better and other things worse each time I've visited

@Magnificentkitteh such a hard time. I'm sorry you're going through this. I had to get the doctors to stop trying to treat my 97 year old fil when his heart failure became so bad. The doctor said that he wanted treatment when they asked him but hadn't explained that it hadn't been working before so probably wouldn't now.
I gently told the doctor that as medical professionals we(I was a GP )had a duty to tell our patients when treatment was futile. It wasn't working, he was 97, he couldn't do anything for himself and he had lived by himself until this particular admission and it was clear he wouldn't improve.

Be with your mum today/tomorrow or even Monday to see if she can be referred to the palliative care team. Go home and see your family. Come back if she worsens before next weekend. She's safe and she's being looked after. My FIL was too exhausted for visitors so sent us away after half an hour and we were only an hour away. Say what you need to say.

My FIL rallyed for 3 weeks and we went to Jersey on holiday...needed it! He died the day after we returned.

You're doing what you can. Don't feel guilty. Hugs all round

PS she's 81. And no we haven't really discussed EoL other than DNAR. The doctors seem to put a cheery spin on things as far as I can see, but then they are the professionals and I'm not so perhaps she isn't as close to the end as I think. She doesn't have significant breathing difficulties and did look a bit better after the latest antibiotics so maybe she will rally, but it's in the overall context of significant medical decline so hard to know what to hope for. .

@Magnificentkitteh I have found you need to be really direct with the doctors. I found the approach of “I know my parent may die very soon but no one can predict when.” Then ask questions.

I found medical staff visibly relaxed when I said that as they didn’t have to break bad news so to speak.

i am sorry you are going through this and I know the lack of information doesn’t help. 💐

Thanks. I think you're right that I probably won't get clarity until Monday. The nurses are doing a good job but are reacting to symptoms rather than the overall picture, and the doctors are a bit elusive at the weekend. They have put her back on water tablets which she had come off due to kidneys, so it feels like whackamole.

My neighbour was clear of mind. Insisted that she wanted to go home and was discharging herself. She did have a carer of ten years standing.

A hospital bed was put in downstairs and home she came. There were nurses/carers calling in. She was happy and alert. She did pass away within the fortnight, but on her terms

I think this might be better but I don't think the nurses etc will pop in if you self-discharge. And she needs a lot of personal care at the moment with sickness and diarrhoea

I think this might be better but I don't think the nurses etc will pop in if you self-discharge. And she needs a lot of personal care at the moment with sickness and diarrhoea

Also she's not said she wants to die and as far as everyone has told her that's a way off. It's a hard conversation for me to initiate and I'm not sure the doctors will talk to me without her

This is such a personal thing of course op. My parents have both had lots of serious health issues this year, both new and old. They are 89 & 90.

It's maybe easy for me to say as they are not currently right at this moment going through crises but I've had the dnr conversation with a hospital dr this year and it made me ask point blank about likelihood of dad coming out of hospital and the dr was honest with me (I also needed to pass this on to mum).

The only thing I have been able to do (again this just me saying what I have tried to do) to give me some solace is to try to make peace with myself that I might not be there at the right time for them.

OH that's a different kind of poorly. It seems like the hospital haven't given up on her. You should ask on Monday if a hospice wouldn't be a better place for her. Their response might clarify things for you.

Thanks that is a good way of asking the question. I think there is something called hospice at home. She might choose that if given all the info. But it's quite an about turn from intensive physio in a rehab hospital which has been their recommendation to date.

I'm curious. How would intense physio benefit a patient with D&V.