How do know how long DM has left?

[Magnificentkitteh]

My DM has just been discharged from hospital back home. She has a diagnosis of heart failure and malnutrition. Without wanting to be very negative her symptoms are not promising. Severe underweight (38kh), difficulty swallowing, reflux, odaema, low blood pressure crises, low potassium, magnesium, cortisol, very limited confusion, vivid dreams, "deranged" thyroid, osteoporosis.

But she's not breathless or sleepy and she's mostly mentally bright and well - she just seems to have a blind spot about the other patients in the ward which has persisted even now she's home. She can make it to the toilet and back with difficulty and a walker.

No one has mentioned end of life, though she has DNR in place. But they have said things like they have ruled out obvious causes of the malnutrition. They have given her supplements and gaviscon.

I don't really know what to think. In many ways I think I'd prefer her to just pass away in her sleep or become sleepy and dreamy but she's still talking positively about getting her strength back, getting more mobile, traveling to France next month. None of these things have been explicitly ruled out by the doctors - indeed they suggested she would feel better following the diuretics and infusions and should be aiming to build strength back at home.

My instincts are she doesn't have long left but I have no real evidence to base this on other than Dr Google. I also don't really know what that means - months/weeks/days? I am not local and will visit regularly but should I be at her bedside or pace myself for the long haul? Any advice very gratefully received.

It sounds like she's very unwell but could tick along for a while yet. Typically if they are getting worse by the week then weeks left, by the day then days left, by the hour then hours left.

Thank you, it's helpful to have that yardstick. She's so up and down it's hard to say what her rate of decline is, and some things (weight) have got slightly better in hospital whereas other things (confusion) have got worse. I have come home for a break and because I have responsibilities here- sounds like that was the right call, thank you.

Unfortunately no one can give you an answer to that. My mum was similarly poorly with many complaints and seemed to go on for ages. She also often refused her medication, that went on for years. Sometimes I joked she’d outlive us all. She was in a care home for the last 18 months of her life which she increasingly hated but was unsafe at home and I could no longer cope (she had a tiny amount of care who weren’t that great and just me (several visits a day, I lived very close) with occasional help from my teens). The care home staff told me when they felt there was a decline but even when she moved to end of life care the palliative care team couldn’t give a timescale. It turned out to be 3 days. She was 95 when she died, a good 10 years older than her mother and both grandmothers. I can’t speak for her grandmothers but her mother, whilst increasingly frail at the end, was far more independent and died following a stroke, a couple of weeks later. At 85 my mum was similar. By 90, she had all manner of problems including cognitive and it was just terrible. It was only when she refused a final hospital admission (I think she had enough) that it became obvious that it would be weeks rather than much more. But in those last few months she talked endlessly about when she was well enough to go home. 3 days before she died she was well enough to be abusive as I wouldn't and couldn’t do as she asked. I wasn’t with her when she died, the care home was a long way from home. At the time I thought I’d made peace with the chances of that which were high but I find the thought hard now. I, too, finally wished she’d just fall asleep as she was so unhappy and there was no solution to it. I want to wish you well, it’s a horrible time for both your mum and you.

Sounds like a sudden, sharper drop on a background of slower decline. Does she have a package of care in place to enable her to be back at home? I would have thought a couple of years would be the maximum unless something changes rapidly. Did she have a comprehensive geriatric assessment prior to discharge?

In terms of the nutrition is it just that she doesn’t actually eat. Appetite drops with age and sensory changes mean sweeter things are often more appreciated than protein. Skin becomes more vulnerable to pressure changes with immobility and less padding does she have a pressure relieving cushion for a chair that is easy for her to get out of?

The food supplements are not like by many people and often go undrunk. Butter, cheese, full fat milk powder and cream can add calories to many normal foods and may be more palatable than the supplements.

My dad was put on 'end of life' at the end of April. He's lost all cognitive ability, has heart failure , lung disease, prostate cancer, placed on end of life following a fall and a hip fracture which sent him into delirium which he's never come back from. He's still alive now, he's 88

MIL was end of life for 6 weeks, she was 93.

Really is no telling, it sounds like she's lost the ability to remember how to eat, which is very common, the supplements will be to enable to have enough calories to sustain weight. As another poster said , look at calorific food and food she likes rather than nutritional value as we might see it.

Could be a few years yet, so I'd be making sure that you have power of attorney in case the care plan has to change quickly

Thank you all and I'm sorry for all the difficult experiences you have shared.

It sounds like my mum is a way off true "end of life" because cognitively she is well. @Hamserfan you sound quite knowledgeable and a lot of what you say resonates. I don't know about a full geriatric assessment. Do you mean medically or caring wise? Medically they seemed to be testing for anything and everything and did CT scans and blood tests and chest x-ray, plus there was talk of going back for an OGD and barium swallow as an outpatient though I am not personally sure how wise that is. Will be guided by her when the appointments come through.

She saw physio and they're coming to her house too. I do think social or nursing care is the missing bit of the jigsaw but she has capacity and sacked her previous carers insisting they weren't needed. She has a partner who is cooking, washing up and seeing to her meds and could sound the alarm if needed though I wouldn't want to overstate his caring abilities. I worry a bit about personal care but she insists she can manage. I think I just need to keep this under review and visit regularly.

I think you're right that she just doesn't want to eat. There's always an excuse about why the food isn't quite right but nothing ever seems to be, even when it's what she asked for. She prefers puddings and cereal bars but will eat yoghurt. She's always been a bit like this tbh but it has been getting gradually worse.

Ps I have financial power of attorney though I have not relied on it yet, but not the health one. It would be good to know what the difference would be practically as I think we are both content to follow medical advice rather than having strong views, though I wouldn't favour prolonging life at all costs.

Ps I have financial power of attorney though I have not relied on it yet, but not the health one. It would be good to know what the difference would be practically as I think we are both content to follow medical advice rather than having strong views, though I wouldn't favour prolonging life at all costs.

This must be so difficult for you...you mentioned travelling to France...I would imagine the travel insurance will be quite costly...however, its essential that its taken out have you had quotes?

The difference is that if she is admitted to hospital and from there has a change of care needs,.the hospital have to talk and listen to you rather than just telling you how things are going to be , it doesn't become active until she is deemed to have lost capacity over specific things like deciding where she wants to live. Particularly if she's not self funding for future care it also means that you would have an element of input into where she is placed rather than where they decide to place her. My dad unfortunately didn't come out of hospital and has to move straight into nursing care , he had flatly refused to do power of attorney so we were just told where he was going.

My mum moved into dementia care a year ago and it was only because the social worker made a massive mistake that we were listened to about which home would be better for her, we then faced 9 months of obtaining deputyship because she flatly refused to let anyone access 'her'' money

Thanks, she would be self funding any future live in care.

France is under review as well really but I will look into insurance.

Have the medics said which stage of heart failure?

My DM was diagnosed with end stage heart failure in August/September last year. Life expectancy at that point was 6 - 12 months. She had oedema that was managed with diuretics until they were no longer effective.

Definitely had vascular dementia, was getting very tired and slept a lot, lots of periods of confusion.

Finally got her into a care home for respite care in early December (she was living alone but refusing any help) and fortunately she decided she’d stay. Died mid January, after a series of strokes, but there had been increasing hospital admissions for falls, blood pressure etc.

We didn’t have LPOA for health (just the financial one), but we (the daughters) ensured we were added as next of kin at the GP and hospital so they could discuss things with us. GP was brilliant.

No they haven't talked in terms of stages. But it sounds a bit similar to your experience except without the dementia unless that is what we are at the start of with the confusion.

We are next of kin and doctors have been talking to us but generally want to be at her bedside and I don't know what they have said to her so it is hard to ask the difficult questions. The only thing I know is she has discussed and agreed DNR.

I think the vascular dementia and the heart failure were linked, and I suspect DM had had mini strokes in the past which would have contributed too.

Her long term memory was fine but short term she started forgetting things like how to operate the stairlift, and she had hallucinations that she was convinced were true events.

My DM filled out a RESPECT (DNR) form in the local English hospital, which we got a copy of - was also sent to the GP who produced a Welsh version for the care home (DM lived in Wales but nearest hospital was in England).

North Wales? If so it might be the same hospital

There is no way of knowing. My mum is in a care home and very poorly with various things. We have been told more than once they thought she was at the end and only had a couple of days left. She is currently still with us. This has been going on several months.
It is a hard time for everyone.
thinking of you

My FIL had heart failure for 5 years. His became resistant to treatment in march this year. He progressively got more and more oedematous and finally went into hospital for the last time in early July and died early August.

He had capacity right until the end so we never needed the welfare POA. The palliative care doctors were brilliant when they finally took over his care and had very frank discussions with us about his future care. I am a doctor so was able to advise my husband and his dad on why certain decisions were being made which helped. He was 97 and was still getting out on his own and looking after himself until early this year.

It's a difficult time @Magnificentkitteh. Wishing you well.

No, it was mid Wales area (Hereford hospital).

But worth being aware that depending on how the DNR drawn up it may not be applicable in a different county / country.

Thank you that is worth knowing if she ever moved nearer me or dsis, or over the border in Wales

Comprehensive geriatric assessment is done by the care of the elderly/medicine of the elderly/geriatrics team involves, physio, OT as well as doctors.Take a look at bgs.org.uk there is lots of info there. Basically looks at health, social, psychological factors in the round.
It can involve future planning, reducing unecessary prescriptions, trying to reduce likelyhood of falls.

A district nurse has just been to visit/take blood pressure etc. Am pleasantly surprised. Any idea if that will continue to happen regularly? They expressed some concern about low blood pressure again so am hoping they come back.

I wonder if you have specialist heart failure nurses where you are? I know they exist in our area, do home visits if needed, and are a great source of information.

I'm not sure actually. My cousin is a doctor in a neighbouring county and mentioned these bit he wasn't sure about our area. Sounds amazing if so though.

My mum died of heart failure but kept her marbles 100%. Well, the HF treatment kiboshed her kidneys and that polished her off. It can stabilise and then take a downturn again, it's not a smooth slope.

My current EPIC (+) has poor mobility so the DN does come out to see her (e.g. she's fighting leg ulcers ATM). But if the DNs are under pressure it can be tricky - there's only so many of them and if they're out caring for the dying... It's not ideal.
(+) Elderly Person I (help) Care for

Thought I'd update this thread as everyone was so helpful. We did manage the trip to France. We took her out in a wheelchair each day. I'm really glad we did, though it wasn't easy. I had to physically help with almost everything from loo trips to washing to shifting her position in bed so she could drink water. She was quite nauseous at points, and had constipation and diarrhoea alternately. She barely ate and rarely drank. But mentally she was fine - not at all confused - reasonably chatty most of the time, perhaps a bit irritable at times, and frequently sleepy.

I really don't know how she'll manage at home though. The day or two before we left she seemed stronger - could get herself out of bed and to the loo with a walker, but it's hard to imagine how she'd cope on a bad day - if she was sick for example, or had diarrhoea again.

I offered for her to come and stay with me but she point blank refused. She gets very cross if I interfere in her care or nag her re food, drink and meds. So she is at home with her partner and no other care at the moment. He can do some things but I don't think he's really signed up for intimate care and physically hauling her about may be beyond his capability.

Everything points towards end of life but all the advice for that stage presupposes someone is pretty compliant and not very conscious. DM is feisty and talking about eating more and getting stronger but her actions don't match her words. Still not really sure what to do or expect.