Brain Hemorrhage - how to convey wishes and navigate the health care system

For issues related to specific conditions and disabilities.
My Mum is in her 80's two and a half weeks ago mum had a haemorrhagic stroke, it's the second one she has had the first 2.5 years ago. mum is very poorly and it is very different than the first one, due to size of the bleed, from the back of the neck into the frontal lobes. Mum is not in pain and looks comfortable, however we are aware she has not been eating well, she is very weak, we have been told the nutritionist will look at diet and look at how to give her a boost with supplements, not aware that that has happened though. over the last few days mum has been awake more, and had a little conversation, but this is now confused talk, and does not make sense. Today my brother managed to speak with someone re mum, and was told the nutritionist would look at her diet and may consider a feeding tube, also that the physio team will assess her during this week to see about rehab unit, or a nursing home, this is the first we have been told this. Mum worked in the nursing profession, from her last stroke she made sure a do not resus form was filled out and that she would just want pain relief. mum was mobile pre this stroke and although slow she was happy and getting around to meet friends and family via bus. mum never wanted to be in a home, or for us to put her in one. How do we navigate through this and know what questions we should be asking? I'm really worried for mum and don't want to do something that is against her express wishes.
Maybe she would like a Hospice better?
If I thought mum could give me an answer I'd be asking her, but she shuts down if difficult questions are asked. mum was independent before this stroke, with me doing her housework and laundry and my brother shopping and gardening.

I've started putting some questions together for a joint visit to the hospital on Thurs, feeding tube and nursing home will be on the list to address, along with how the physio assessment has gone this week. Like many I'm new to knowing what 'choices' there are, and the sort of questions I should be asking.
If she doesn't need a feeding tube, and isn't on a drip, she could maybe be nursed at home? A syringe driver could administer pain relief. I believe if she is tube free, and drip free, then she doesn't need a nurse in attendance constantly, so home care might be possible - 'until the end comes' (IF that is what her prognosis is now, sadly?)

As a nurse herself she will 'know the drill' so that has to help her understand what options are, and are not, possible now.

My husband had hospice at home care, and it was wonderful, but it was most definitely for end-stage, which perhaps you mum is not yet at?
jenny lucas wrote:If she doesn't need a feeding tube, and isn't on a drip, she could maybe be nursed at home? A syringe driver could administer pain relief. I believe if she is tube free, and drip free, then she doesn't need a nurse in attendance constantly, so home care might be possible - 'until the end comes' (IF that is what her prognosis is now, sadly?)

As a nurse herself she will 'know the drill' so that has to help her understand what options are, and are not, possible now.

My husband had hospice at home care, and it was wonderful, but it was most definitely for end-stage, which perhaps you mum is not yet at?
Thank you Jenny, mum has been on a drip for over a week, she's gone from having her hands around a cup of water/tea and drinking quite well, to not raising her hands to help guide it, and now difficulty in swallowing when water is offered. I don't think mum is at the end-stage just yet. Mum's short term memory is non-existent now she cannot remember my brother or I visiting her every day for the last 18 days. I just have to work out what I need to ask in the hospital, so care at home also needs to be brought into the mix. From Thurs we may know a bit more what prognosis she may have.
Glad to hear she's not deemed end stage yet.

Re eating, I have to say that at my MIL's care home for dementia, at least one of the patients is actually 'fed' by one of the staff. It's sad to watch, like a tiny tot being fed off a spoon, but the lady opens her mouth happily, and munches up what is put in it.
I am not an expert at this, but it seems to me you need to ask a doctor, as you say, what your mother's prognosis is. You mention DNR yourself. Was it a doctor your brother talked to?
I imagine that a hospice can be involved in decision-making, even if she isn't in one (yet). I think it is possible to have an end-of-life plan, for example you say you want everything to be done to keep your mother free of pain but that she herself did not want life-prolonging measures. It does sound as if arranging a feeding tube and a care home is jumping the gun a bit - you need to talk about it first. As to her not wanting to be in a home, you need to discuss whether it would be better for her to be in a home and what her being at home would involve.

Just commenting from hearsay about similar situations - I hope you can make an informed decision.
Greta wrote:I am not an expert at this, but it seems to me you need to ask a doctor, as you say, what your mother's prognosis is. You mention DNR yourself. Was it a doctor your brother talked to?
I imagine that a hospice can be involved in decision-making, even if she isn't in one (yet). I think it is possible to have an end-of-life plan, for example you say you want everything to be done to keep your mother free of pain but that she herself did not want life-prolonging measures. It does sound as if arranging a feeding tube and a care home is jumping the gun a bit - you need to talk about it first. As to her not wanting to be in a home, you need to discuss whether it would be better for her to be in a home and what her being at home would involve.

Just commenting from hearsay about similar situations - I hope you can make an informed decision.
Thank you Greta, yes it was a Dr my brother talked to, but not one we had seen before. we were a bit taken aback by the feeding tube and the care home bit. We have had two meetings previously with a Dr, a jnr doctor, matron and nurse, we conveyed mums wishes re DNR and pain relief. nothing re homes has been mentioned in those meetings

I've started a list of questions this evening for our joint visit, things like giving us some idea about the quantities of food mum has been able to take in during the last 18 days, when I've asked during visits I've been told she is eating, how the physio assessment has gone, what can mum do if anything. Can mum make herself understood, how likely is it that mum will make any improvement from how she is now. Is a feeding tube likely to prolong a poor quality of life. I have a long A4 sheet full now.

And yes I do think the care home bit is jumping the gun, I know it may have to be thought about but it has to be based on what mum is or could be able to achieve, its early days yet.

My brother and I are good and talking things through which helps. I've got something to go in with now.
Hmm, being a little bit suspicious here, but I wonder if all the talk of care homes etc is simply because the hospital is eager to get her bed back.....

I don't mean to be cynical (because I know hospitals are genuinely desperate for beds), but it could be they are not really thinking through her actual care needs now, they just want to 'hustle her out'??

I would imagine, no, that the person you need to speak to mostly are the palliative care consultant (ie, if there is no more active treatment to be given) and a palliative care senior nurse (who has 'seen it all before')?

As for eating, I would again think, off hand, that what has to be discerned is whether she CANNOT eat - ie, can't swallow, and if so, why? or if she 'doesn't want' to eat, because she is cognitively impaired from the stroke and has no 'natural appetite' any more. I wonder too, you know, whetehr it might not simply be that she doesn't like hospital food!??

Many of us with elderly relatives are of the opinion that at this stage of life, our priority is to ensure they are getting sufficient calories, and enjoy the eating process. For many elderly folk this means having a diet based on 'nursery food' - ie, sweet starchy carbs (aka puddings!), and no longer fretting over things like vitamins, fibre, protein etc etc. I think by this stage of their lives they have earned the right not to have to eat greens!!! (Sorry if that sounds flippant, but so many middle aged carers seem to be worried that their elderly parents aren't getting 'proper nutrition', and fight against a 'nursery diet'.)
jenny lucas wrote:Hmm, being a little bit suspicious here, but I wonder if all the talk of care homes etc is simply because the hospital is eager to get her bed back.....

I don't mean to be cynical (because I know hospitals are genuinely desperate for beds), but it could be they are not really thinking through her actual care needs now, they just want to 'hustle her out'??

I would imagine, no, that the person you need to speak to mostly are the palliative care consultant (ie, if there is no more active treatment to be given) and a palliative care senior nurse (who has 'seen it all before')?

As for eating, I would again think, off hand, that what has to be discerned is whether she CANNOT eat - ie, can't swallow, and if so, why? or if she 'doesn't want' to eat, because she is cognitively impaired from the stroke and has no 'natural appetite' any more. I wonder too, you know, whetehr it might not simply be that she doesn't like hospital food!??

Many of us with elderly relatives are of the opinion that at this stage of life, our priority is to ensure they are getting sufficient calories, and enjoy the eating process. For many elderly folk this means having a diet based on 'nursery food' - ie, sweet starchy carbs (aka puddings!), and no longer fretting over things like vitamins, fibre, protein etc etc. I think by this stage of their lives they have earned the right not to have to eat greens!!! (Sorry if that sounds flippant, but so many middle aged carers seem to be worried that their elderly parents aren't getting 'proper nutrition', and fight against a 'nursery diet'.)
It's not cynical Jenny, the thought crossed my mind, the ward she is on is not full. two other ladies have been there for the same amount of time, one in a worse condition than mum and one ready to go home, but is waiting for social services input.

I suspect mum may be switching off to hospital food, and hospital in general, she's not got on with it before.

Going by what mum ate before stroke - lean meats, plenty of fruit and veg, everything a lean low fat diet and low sugar there may be a bit of turning off to her normal type of foods as it is not attractive to her. She is on a fork mashable diet, but the food she has been having is limited to three choices, so could be boring. She's happily eaten the puddings (tapioca and alike). I'm happy if she eats and enjoys what she is eating even if it is puddings.

My list of questions is now quite huge, so thank you all for the input it's helped me compile some useful points to ask.