Home nursing options & costs?

Daniel987

Hi all,

This seemed like a suitable place for this thread given the title, maybe someone has some experience.

My mum was diagnosed with terminal cancer some months ago. She would love to stay at home for the following months as it's where she is happiest.

The family is having trouble looking after her (she lives alone in her flat) so we'd like to hire a nurse or two (one for mornings, the other for night).

We are happy to help shoulder the responsibilities like looking after her during the day but she needs help with things such as the toilet in the night, meals, etc.

Appreciate any input into costs for such care, we really can't find anything online but we would like her to have proper care.

Also, are there any recommended places to find such nurses?

Thanks

nannytone_2

contact macmillam and ask your local social services fior an adult care assessment.

Tiddlywinks

I'm sorry to hear that your mum is so ill - my thoughts are with you.

I went through something similar with my mum and a close relative - both at the end of last year and our experiences were mixed.

I'm sorry to ask but... when you say that your mum has terminal cancer, have the doctors given any time frame? I found this knowledge was crucial when securing funding from the health authority.

Also, is your mum claiming DLA? There is a fast track service for someone diagnosed with a terminal illness.

I brought my mum home from hospital; knowing that she was coming home to die. Unfortunately, due to red tape, she only managed to be 'released' home for the last two weeks of her life.

As she was eventually categorised as having less than 6 weeks to live, the health authority paid and the GP arranged home visits from carers 3 times a day with no payment required. We could also have accessed overnight sittings from Marie Curie via the district nurse service as well but we didn't take advantage of that service.

Speak to your mum's MacMillan nurse and speak with the district nursing team attached to your mum's GP.

Sadly, what is available will be dictated by her prognosis.

As to paying for a service... there are lots of agencies that will provide a live-in, sit-in or pop-in service - fees do vary greatly and they are only as good as the member of staff allocated to you.

Also, it will depend on her level of care needs - if she needs to be lifted then an agency will probably want two staff involved for H&S matters.

Plus, you will need to arrange a loan hospital bed - again, for H&S reasons the carers cannot bend to the height of a domestic bed. Your mum's GP, palliative care team should be able to assist with arranging this loan.

Please PM me if you want to talk more specifically as I lived and breathed this stuff for 6 weeks and the red tape was incredible and unhelpful at a time when you don't really need the extra stress.

Best wishes

Tiddly

Daniel987

Thanks very much for the info! Especially all you wrote Tiddlywinks.

That info is gold, i'll get in touch with her allocated macmillan nurse.

She was diagnosed with Lung cancer September 2011. In April 2012 they found out that it had spread to the brain and she was given 3-6 months.

She is claiming DLA yes.

My mum is staying at home as much as possible but will eventually go into the hospice when the time is right.

Tiddlywinks

I know how sad and stressful this situation was for me so I do feel for you.

How is your mum managing her medications? Is she on any steroids or anti-seizure drugs? You can ask for a district nurse to come in and help with this as some agencies refuse to give meds (especially if they contain controlled drugs) whilst others need a formal care plan and a 'nomad' box which is something like this:

http://www.surgichem.co.uk/clear.php

I found that getting the bed was key to a lot of other stuff as it is necessary to have the right equipment in order to give a safe working environment for the carers.

The beds are big though so it will take a bit of planning - you need a lot of clear space around it as well to allow the staff to move freely.

We ended up moving most of the furniture out of the living room and putting the bed in there - it also meant that people could sit on the sofa and watch TV etc with mum rather than her feeling shut away from everything.

nannytone_2

i havent been in the exact situation, but i had a seriously ill grandchild ( sadly he died 2 years ago when he was almost 4)

i know first hand how stressful it can be to access care.

i hope any imformation that is passed on can be of some help to make the situation as stress free as possible.

all my empathy and best wishes go with you.

Daniel987

Tiddlywinks wrote: »

I know how sad and stressful this situation was for me so I do feel for you.

How is your mum managing her medications? Is she on any steroids or anti-seizure drugs? You can ask for a district nurse to come in and help with this as some agencies refuse to give meds (especially if they contain controlled drugs) whilst others need a formal care plan and a 'nomad' box which is something like this:

I found that getting the bed was key to a lot of other stuff as it is necessary to have the right equipment in order to give a safe working environment for the carers.

The beds are big though so it will take a bit of planning - you need a lot of clear space around it as well to allow the staff to move freely.

We ended up moving most of the furniture out of the living room and putting the bed in there - it also meant that people could sit on the sofa and watch TV etc with mum rather than her feeling shut away from everything.

She has been taking the steroids since it was diagnosed in her brain. I find they help a lot and she is slowly upping the amount as needed.

She still wakes up with a headache sometimes but this sort of thing is to be expected.

She was been prescribed anti-seizure drugs last week but has not started them yet. She upped her steroids and felt this made her a bit better.

We are not sure if she suffers seizures. She has had two problems.

1.) Blackouts. Had about 4 of these which has resulted in her just falling flat on her face and a bit of injury each time. She falls, pupils dilate and she slowly starts to regain consciousness. She's not had one of these for many weeks as we upped the steroids but we have always been with her since the last fall where she hurt herself so we keep her up.

2.) 'Wobbles'. These are the most common thing and happen many times a day. If she has been seated for too long and tries to walk somewhere she will have to stop and hold onto something. Sometimes she just needs to stop and rest. Other times her legs will go to jelly and we have to support her. Every so often she has a bad wobble and we have to lower her to the ground for a few minutes until it passes. I walk her everywhere inside (have a wheelchair for outside).

Macmillan nurse seemed to think these were seizures so we will give the drugs a go soon, a bit hesitant as we hear they can be a bit nasty if the dose isn't correct.

I like your idea about a bed in living room. Things are a bit reversed though, mine accepts she will have to go into the hospice when things get too bad rather than stay at home but we may still need a bed if that's a pre-req for some outside assistance.

PasturesNew

With a terminal diagnosis, if it's less than 6 months' prognosis she can be fast-tracked to get full Attendance Allowance (£75/week). Macmillan should be able to do this, you'll need her NI number and the rest of the information the Macmillan nurse can do.... having said that, ours was useless and never did fill in the forms/send them off, so we never received it before the end.

End of life (palliative) care is usually fully funded automatically. You just need to get onto everybody and his dog to find out how to access it. There will be rules/conditions etc (e.g. "how long....") but once it's needed it's funded.