I care full time for my 97 year old mum, who has dementia, severe frailty and severe mobility difficulties. I gave up my career 5 years ago to care for mum and moved in with her.
Initially, I provided all care for mum. However, she spent seven weeks in hospital a while back and the consultant said he thought I shouldn’t be providing all care, as it would change the nature of our relationship.
Mum deteriorated a lot in hospital, due to being left in bed. When she came home we had two carers initially, which went down to one carer visit in the morning.
Mum’s needs increased and I now have in place, 4 double handed carer visits a day. This was difficult to get set up as social services were quite resistant, despite mum’s needs. They deemed that mum needed the 4 calls, but wanted me to act as one of the carers. This was puzzling, as when I was trying to get mum discharged from hospital, they refused to allow me to work with the paid carers! Their suggestion that I did this was all about saving money and not my mum’s care, or my welfare. I refused, as I already provide a lot of hands on care, and by doing this I would never be able to leave the house.
Since this time, mum’s needs have increased but I am still managing her care. The GP said that, in relation to her health, mum would never get better care than I provide if she was elsewhere. I also ensure all her other needs are supported.
Since the latest care package was put in place, my sister has reduced the support she gives me. Now, she comes for the afternoon three times per week. These are the only times I can leave the house. This has put a lot of strain on me.
On the advice of an Admiral nurse I requested a care reassessment for mum and a carer’s assessment for myself.
I had the carer’s assessment, which highlighted that I was at risk of breakdown. I have waited 6 months for a care reassessment, partly because the local authority cancelled my request in error.
I have had a struggle trying to actually have the care reassessment. A social worker has now called me and it is booked. I am concerned about the attitude of the social worker. Without discussing the situation, she said on the phone that mum is on an expensive care package and beyond this they tend to look at residential care.
Mum has always wished to remain at home and I am determined to facilitate that. There is no reason, as far as her receiving safe care is concerned, for her to leave home. The comments were purely financially based. I have LPA and am aware of their responsibility under the Care Act to support both mum’s needs and my needs as a carer. I am also aware of how Article 8 of the Human Rights Act supports mum’s right to remain at home, and I informed the social worker of this. I told the social worker, in no uncertain terms, that my mum would not be going into a home.
I asked the social worker where it is documented that what mum receives is the maximum care package, but she said that she didn’t know and had never been asked this. I told her that there must be a lawful policy in place regarding this and asked to be sent it. She has told me that she will try to find out. I have made it clear that I am not going to accept arbitrary comments about mum’s care, which she cannot justify.
Apologies if I have waffled, but I wanted to provide some background information.
My concern is the approach of SS. I am not necessarily asking for an increase to my mum’s care package, but would like some support myself. I told her on the phone that I am not asking for a lot. It would be nice to be able to go for a walk for an hour, as an example.
Does anyone have advice about how to approach this meeting? I am happy to stand my ground, as I have had to battle with every agency and department I have dealt with over the last few years. I would like to know what help I can realistically expect. I don’t want mum to go away into respite care, as she wouldn’t cope. I suppose what I am thinking of is a sitting service for a short period, to give me a breather. Is this realistic? Also, who would provide this, as mum tends to get very anxious when either me or my sister are not there?
Many thanks.