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Where do we go from here - Carers UK Forum

Where do we go from here

Share information, support and advice on all aspects of caring.
I need some advice, bear with me it's a long story. I'm a carer for my mother who is 96. I myself have a terminal lung disease idiopathic pulmonary fibrosis, which makes caring difficult. Mum was hospitalised last week as she was vomiting blood. They discharged her on Friday as she had stopped vomiting and there was nothing else they could do apart from referring her to haematology outpatients as she has CLL Chronic Lymphocytic Leukemia, she was under them before but said she didn't want any treatment for her condition at her age. Upon discharge they checked if she was able to wash/dress and use the toilet facilities, she could in the hospital given the space and motobility aids. Now she is at home things are different she won't use the commode we have placed near her bed yesterday I had to change her every 2-3 hours during the day and last night as she prefers just to wet herself and then get changed!!! I have approached social services for help before and was told it would take too much time as I wanted immediate help, she would need an assessment then they would have to have a meeting to decide what to offer and as she would be paying herself it would be easier if we organised things ourselves, but what do I organise, I am finding it extremely difficult to lift and change her because of my limited lung function. My hope is that she will soon start using the toilet facilities once she gets stronger. Sorry of this rambling doesn't make sense, but I have no idea who to contact for help, if you need to have any more information on the situation just ask, Thanks for listening, Kate
Hi Kate
I am new to all this but my mum was taken in to hospital and was not allowed to come home till there was a "package of care" in place. this should have been organised by the hospital and local authority. My mum has 2 carers 4 times a day, she has a hospital bed with air mattress, a stand aid and commode. also as she is double incontinent pads are supplied by the NHS.
I would go back to adult social services or try AGE UK https://www.ageuk.org.uk/information-advice/
good luck x
My husband was self-funding but Social Services/hospital discharge team did organise his care as I kept saying (broken record technique) that he was not capable of doing it himself and I could not do it for him (insert reason here - too ill yourself, too busy doing everything else for caree etc). Also, despite being self-funding, he did get free reablement care for the first six weeks to help him get stronger/improve as far as possible. I got all my advice from others on the forum; I am sure they will be along shortly to help.
Hi Katharine, if Mum really would be self funding, I.e has over £23000 in savings (not including the values of her home while she lives there) than it is simple and quick for you to contact any local care agnecy direct and agree with them to provide care for Mum.

If however you feel she should be receiving the free NHS paid for care because she has medical conditions, or that you do want Social services to do the arranging for you (maybe because she has low savings and may be needing them soon anyway) then you can keep pushing and pushing them to help

No easy answers, only you know which will be best for you and Mum.

At least having savings means you/she has a choice



Mum was self funding but care was arranged through local council. It was cheaper that way.