With regard to the family, did they help? No? Then they’ve no right to say anything about what happens now. You were the carer, you are the one to decide if mum now comes home, or needs permanent residential care. This may be the only practical option left. She needs to get better before you can care for her, or even consider her future.
Agree with BB - if no help was offered by the family, then what rights do they have to dictate the amount of care you are able to provide?
Please DO NOT be bullied into moving in and losing your own home. You really do need to refuse to provide any care, unless there is a care package in place, when she comes home.
I honestly do not think you are selfish.
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Thought I’d give an update on how things are now.
Mum came home from hospital a few weeks ago. I was told that there was a care package in place that would start the next morning. That was a total lie. No carer turned up and when I phoned the council I was told that they were still ‘sourcing a package’.
To cut a long story short, Mum has now got one carer a day from a private company (funded by the council). They phoned me up and asked me when I would like the care to start - the day after she came out of hospital I said. That’s another joke though - sometimes the carer is only in for ten minutes.
I had hoped to be able to come on here more often but i just don’t have the time. Mum is not keeping well at all, she is in so much pain and she’s back to her usual ways of denying that there’s anything wrong. Doesn’t want to end up in hospital again but that’s exactly what is going to happen if she continues like this.
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@Soalone , hospitals and social care are so unscrupulous, all they are focused on is freeing up beds.
It sounds like one care visit a day isn’t enough to take the pressure off you. Two questions: have you had a carer’s assessment? and are your Mum’s care needs being met by one short visit a day?
The paid carer should be following the care plan, is it detailed enough so that you can ensure they are doing what they need to do?
Regarding your Mum’s pain, that doesn’t sound good and must make your caring role so much harder as it will weigh you down with worry. You could write to her GP and explain the situation as you have one here - her pain isn’t well managed but she won’t admit it as she is scared about going back in to hospital again …etc
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Does mum have a written care plan? How many hours was she supposed to have when discharged? You need to make it very clear that you cannot care for her anymore unless they arrange proper support for her, at home. Complain via the LA website, not the local office.
Can I ask where the pain is coming from?
How much care is she supposed to have, and what is the carer supposed to do? Does the carer tidy up after herself? Is she doing what you need her to do? Putting the washing machine on if she has changed mum? Emptied commode?
Well, things have changed since I was last on.
Mum is in hospital again - she went downhill very fast on Tuesday and we had to get an ambulance. They’ve had her on oxygen and antibiotics since then and she’s just phoned to tell me she can come home in two days. Not until they put a full care package in place! I can’t do this anymore, she needs more care than I can give her.
The care plan was being followed but very quickly by one carer, most of them have been great. It just wasn’t enough. Thirty minutes a day it was supposed to be.
Her pain is from her arthritis - she needs two new knees and two new hips but they can’t operate because of her lung problems. We’ve had phone consultations with the gp since she came out (Mum has told them to speak to me) and they say she’s at the maximum dose they can give her.
I’m going to speak to the hospital tomorrow and see what they say.
Poor mum. My knees were ruined in a car accident, I couldn’t walk for five years until I had replacements. The pain was awful, especially as I only have one kidney now and cannot take the best pain killers. I counted one night how many times the pain woke me up - thirteen!!! My mum also had bad arthritis, she had an artificial hip and three new knees, all the same leg (long story!) Given what you have said, mum is, very sadly, going to go steadily down hill. As you say, she needs more can than you can give her, the only practical option may be residential care, to avoid the yo yo trips to hospital and back again. This happened to mum many times, until we both decided it just wasn’t practical any more. If mum is needing oxygen I’d argue that she definitely isn’t fit to come home. They also need her to clear whatever infection she has, not just discharge her. I had to be VERY stubborn to stop them discharging mum home. This is the time to ask them to arrange an NHS Continuing Healthcare Checklist Assessment that involves you. Google this for more information. The physio, doctor, and OT should all do a written report, shared with you.
Have you told mum that she needs far more care than you can give?
What she WANTS is very different from what she NEEDS.
Does she now need the24 hour care that she is getting in hospital?
Try to think of the right words before you see her, which will make this easier.
Maybe talk about what can be done differently to avoid repeated admissions?
soalone - just quickly, GPs aren’t always experts in pain relief. Ask for her to be referred to the pain clinic.
When my mum was alive i had to make the decision for her to go into a nursing home. it was a very hard decision to make , but she lived there hapily until she died. she became very fond of her nurses. the knowledge that she was safe was such a relief for Dad and the rest of us.
The hospital should involve you in the decisions over where and when your mum is discharged .
But if she has capacity to decide then she is entitled to make an unwise decision.
You as you have said do need to take care of yourself
hope it goes well for you both
Whilst mum may be entitled to make an unwise decision, that does NOT mean that you have to provide ANY care if she comes home. Any discussions about mental capacity to make a wise decision have to include a proper discussion about the consequences of that decision and who she thinks is going to care for her, and how much care she needs.
My mum once told Social Services I didn’t want a Carers Assessment for her, although I was disabled, unable to walk properly, newly widowed, running a business and with a son with severe learning difficulties!!!