Newly diagnosed with cancer - what help can I expect

kazzah

please remember that your Mum isentitled to Attendance allowance which is automatic for those diagnosed with a terminal illness
i know you want PRACTICAL rather than monetary help - but this allowance could help you PAY for a night time carer etc- i think it is about £60-65 per week
do ask the McMillan nurses or your local DWP

kitty123

I was most interested to read this post - but my reply may well be irrelevant now as you may have arranged things/the situation may have changed. But anyway.... I am a District Nurse myself and understand the way care is organised for people at the end of life. The District Nurses in my area are responsible for organising care packages for people at home. This is usually funded by NHS Continuing Health Care, when someone is seen as deterioraing rapidly and they have intense, unpredictable needs, usually at the end of life. There is an NHS pot of money to fund this terminal care. Usually a care agency then become involved in helping with personal hygiene needs, meals and general hands-on care. However, there is normally a limit of up to 4 visits per day and sometimes an overnight carer for some nights of the week. Our local hospice at home (carer service) also help out 2 nights a week - or more if it is the last few days of life. The District Nurses visit as often is required depending on need, but this varies enormously between areas and we do not provide routine social care such as personal hygiene assistance . What people quite often seem to be promised is either 24 hour care at home or a bed in a hospice. 24 hour continuous care is not available in the community in my area (and possibly not in most others). The hospice also only takes inpatients with extremely specialised/uncontrollable symptoms, which makes it a bit of a myth that people can choose to go to a hospice to die or if they feel they are not managing at home. The Macmillan Nurses are there for support and advice (often by telephone) but are not hands on or responsible for coordinating care in my area. I find it incredibly frustrating, as I am often the person who "gets it in the neck" for not being able to provide more care, but our hands are tied when it comes to rules/regulations/budgets etc. I try to do my best for all my patients, in an incredibly streesful and varied job which tests us to the absolute limit a lot of the time. Often, we do succeed in keeping people and home and families are supported really well. I really hope things got sorted out and that the appropriate services were put in place.

Happychappy

Kitty,
Thanks for your insight, unfortunately Mum passed away during the first week in May and we only had a single night where a lovely lady who was a qualified Marie Curie nurse stayed the night. Every other day and night was down to my wife and I, we had absolutley no other person sit and care for mum which would allow us some sleep. I was off work for three months but dont regret that.

We had two care assistants from the surgery who came for the final week to help wash and deal with personal care, but up till then I was lifting and putting mum onto a commode which was so degrading for my mother having her son lifting her on and off the toilet.

We were promised care during mums final weeks, but the promises turned to nothing, just a smiley Macmillan person who turned up twice in six weeks asking what we needed etc,etc and then the district nurse trying to get the care but not succeeding.

I was so angry after mum died and am amazed at all the stories one hears of the Macmillan organisation, I did not have this experience. We had a single night of care where we could sleep, the rest of the time was truly awful. We heard all abouts budgets and how much cancer there was about? and how little resources were availble and how this or that organisation would prioritise Mum as she became more and more ill, but this never happened.

During the final two weeks the district nurse came three times a day to administer drugs etc, but even she had it down to a fine art of in and out in 5 to 7 minutes.

Anyway, all water under the bridge. But thanks for your time in replying. HC

Anixi

I just wanted to say what a wonderful guy I think you are, caring for your mum, and I am sure that your mum was very proud of you.