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Newbie - Carers UK Forum


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Hi so glad i found this forum. At the moment i am helping care for my elderly mum along with my dad.
Mum has severe heart failure and is now down to 35kg(about 5 half stone). She has no appetite but does eat a couple of spoonfuls of whatever throughout the day but not enough.
There is a hospital bed being delivered tomorrow and a plan is in place that she will not be taken into hospital again a dnr is in place.
We are struggling at the moment as mum is so restless she wants out the house all day every day but this is so exhausting for my dad. I work through the week and do what i can at might and the weekend but dad has the most of it. Both my parents are 82 this year.
I feel bad asking but if anyone else has been in this situation do you know how long this lasts this is not a life for mum she doesn't really want to talk to anyone and has had a few falls in the last few weeks. Please don't suggest a home or respite care as she really doesn't want this.
All we get from docs is she is very frail. :(
Hello and welcome,
Hard times ahead I think. It will be heart breaking for you to witness your mum so frail and restless, for your dad too.
If you are getting a hospital bed then you do have some support in place but do you have a care package for them?
This is hard, but as BB often advocates, google ‘signs of dying’ on the internet. It helped me a great deal as my Mum reached the end of her life. If the doctors are saying that, I would personally, and as no expert, translate it as ‘she’s nearing the end of her life but we can’t tell you how long.’
I, personally, can’t tell you how to cope with the ‘out all day’ thing but maybe it’s ‘just a phase’ as they say.
However we can’t make any suggestions really, until we know what is already in place for Mum and Dad. Are you the only help they currently get for example? Needs assessments up to date? Social Services involved?
AS others on here will reinforce no doubt, it is no longer a case of what Mum and Dad want, it’s a case of what help they NEED, and that applies to you too. Have you had a carer’s assessment?
There’s no magic wand. There never is. However if you explain a little more and keep posting, the very experienced and knowledgeable members on here will willingly help as much as possible and with sympathy and understanding about what you are facing.
Have a think about contacting a local care agencies. To help throughout the day or part of. Staying with mum or taking her out. It would give dad a rest and some peace of mind. She needs to be occupied. Someone totally focus on her. This will take pressure of your dad.
Mum should be getting NHS Continuing Healthcare, free care at home. Ask the GP to make a Fast Track Application.

I have to agree, you need to also think of your fathers health as the added mental/physical stress can act as a catalyst (trigger health problems) in even fit/healthy people let alone the elderly who really should not be providing that sort of care to begin with. You want some younger hands dealing with that so your mother and father can just focus on spending time together.

She may not like it but she must at least accept some sort of assistance at home

Going back to your question regarding the heart failure it honestly depends on your mothers overall health and extent of the damage as it varies from person to person. Its the combined complications which pose the risk factors, as loved ones tend to have multiple health problems wrong with them by this point. Unless she is displaying certain signs (see ; signs of dying) you'll have a hard time getting medical professions to actually indicate anything.

One of my household has heart failure and manages it with medication and honestly aside from their other health issues (which are numerous) are going pretty strong still, but then they are younger than your mother, it was identified early and they are very careful about over-stressing their body/knowing their limits.

Really she should probably be under the community palliative team as well (the doctor will know of this)
Don't be scared by the name, they do work with some patients that are end of life, but by large the team is about long term management of chronic health conditions and their all about avoiding preventable hospital admissions and providing care within a community setting.

Best wishes
I am sorry for you all, that you are in this position.

Outside help can help achieve all kinds of things, including making it easier to go out, or keep the house clean and get the washing done. It doesn’t have to be personal care and it doesn’t have to replace family, it can be an add-on.