Do I have unreasonable expectations of what a carer should do?

[Ceasre]

My DM suffers from a multitude of illness. She has lupus, osteoporosis, ulcerative diverticulitis, heart attack years ago and just been diagnosed with a leaky valve and in March was diagnosed with alzheimers. She is on a lot of medication which is administered by district nurses morning and evening as in Feb she took an accidental overdose which culminated in her being admitted to hospital and as she lives on her own they put a care package in place. Meds are in a safe.

DM also eats very little and carers go in twice per day supposedly to encourage eat. In reality they do nothing partly because my DM refuses to let them and partly because they constantly change them so no sort of relationship is built up. It does however mean I have some comfort in the knowledge that she is seeing people plus they write how she is in the care diary so I have some idea of what is happening.

I live an hour away but phone at least 3 times per day and pop in one evening during the week after work and 1 day at weekends. I do all the shopping and pay all bills etc. Plus deal with all appointments and go to most routine hospital visits roughly two per month. Sorry but I am trying not to drip feed.

I appreciate I need to go to appointments when information needs to be retained. But for very routine ones such as mammogram etc I was led to believe by the Doctor from memory services that social services could just book a carer for a couple of hours to go with my DM. Hospital will provide transport so it should be so simple.

DM has to have an infusion on Wednesday and I cannot go due to work. SS are refusing to provide a carer to go with her. I said if it is a case of money to cancel mornings for a week as they don't do anything anyway and District Nurse is there but point blank no. Am I expecting too much? I feel ground down by the whole lack of support that has been ongoing.

Op, its great that your son can go with your dm, but do check the rules about hospital transport. In our area, hospital transport is only for the patient, any carer or partner etc has to make their own way to the hospital and meet the patient there.

Direct Payments would be a good way forward. In our LA you can choose to manage it through an agency which sorts out the payroll, tax etc. Do talk to your mum's social worker about it. And apply for Attendance Allowance. Your mum is likely to be eligible.

You should apply for the attendance allowance - from what you've said your mum would be entitled to it. Some of the questions they ask you can request that they contact her doctor and get the information that way. It's really not that difficult and is not means tested. While your mum may not need it financially, if she is entitled why not?

Op have you had a carers assessment? As a carer for your dm you would be entitled to one as well as support and advice from your local carers support group. They are often able to organise a benefits check for you and dm which would help you to know what dm is entitled to. Attendance allowance sounds likely- dm could use that to fund private care when she needs some thing that ss can't fund e.g support to attend appointments.

Continuing health care funding is funding from nhs instead of ss for care when someone is assessed as needing health related care. The care packages are better but that's because people reviewing the funding tend to need more care.

Ok, so I'm a social worker. My best advice is getting support from local carers group, age uk or alzeimers assoc as what you need is someone who knows the system. I'm currently supporting my dm and am utterly amazed at how terrifyingly useless health and social care services can be unless you know what to ask for from who. I no longer work for an la as I just couldn't live with the rules.

Good luck op!

Ceasre, when I had a direct payment I used it to employ an agency. It meant rather than the x number of minutes Y times a day social services wanted me to have I could choose to have longer visits less often which I found more productive. Plus whenever they started refusing to do stuff because "social services require us to do blah blah blah" (usually paperwork crap) I coudl point out that I was their customer not social services and make a fuss. It could be an option.