After 31 days in hospital Mum is home

Discharged to home, with enablement care for 6 weeks, then we start paying £100 a week… That’s ok, less than private carers.

I had rushed out and bought an adjustable bed, but carers said as it only went up head and knee brace, it was not good enough. Wasted £800 there
So we have a nice team of carers, 45 min in morning and 30 min at 6 pm. Me and my sister are sharing the rest of the load. Can’t not say, it’s been so so hard.
We now have a hospital bed, a commode on wheels and hygiene pads for mum, who is mostly bed bound. Should we have need for an air flow mattress District nurses will sort that.
But by golly, I had to fight for getting her home. Age 87, Altzheimers, kidney disease, thyroid disease, lymphodema. I had to take to social media, local newspaper and formal complaints to hospital management. As mums care was less than good in hospital, and care package took 2 weeks longer to arrange than should have . All this is because we live in Wales , few miles from nearest A&E in England, which is where we spent 18 hours waiting on a. 999 ambulance on 2nd Jan, then 10 hours in the car park at Chester then 3 days on a trolley in a corridor till a bed was found.
I never knew it would be that bad, but it was awful, for mum more than us, as we had to do shifts Caring for mum, as her dementia meant she couldn’t ask for help if she needs it.
48 hours on a plastic chair in corridor nearly did it for me.
Anyway she is home. We sold the hastily purchased bed at a third of what we paid for it, and things are falling into place now. I want to make her time left a happy time. If that’s at all possible.
Mums not eating much. But GP said she won’t be using much energy in bed most of the time, so don’t expect too much off her. So onwards and forwards, I and my sister are shattered, as mum lives with me, I got a nanny cam to watch in the night , but I am not sleeping much. And I found out today, when my pension starts in September, I loose the carers allowance, I can’t understand that , as I will still be Caring won’t I. My pension forecast is £220 a week, Heating bill is through roof, because of mum being in a bed in downstairs sitting room, she lives with me.
Newcis have been a great help, told me about some things I can claim, but the physio people have said they won’t force her to try to get up. As it’s all her strength used just to get off the bed onto a commode.
So let’s hope mum can have a nice spring and hopefully summer… who knows what’s to come, but it’s palliative care now we realise.

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Do you have NHS Continuing Healthcare for mum?
Is she getting highest Attendance Allowance?
Have you had a Carers Assessment?

Yes to all that. I think

CHC can be up to 24 hours a day, either at home or in residential care, so it sounds like you are being short changed? There is an organisation called Care to be Different, all about CHC. Maybe look at their website?

I suppose the care will get more as mum gets towards end. But at the moment AM and PM with me and sister sorting her meds and food and drink is working. Now we got a social worker and single point of access contacts. When my husband was home to have his end of life at home , in 2010, it was all different. I had macmillan nurses there 4 times a day. But that help is not available now. I’ve found the carers are well informed. They tell me to apply for stuff

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