To ask for your help - terminal illness and where to go

[Flossyfloof]

Please may I ask for your advice? My friends wife is very ill, has just been taken into a hospice for a procedure to make her more comfortable. I am on my way there now so I won't be able to return for a while.
Please do you have advice about how to access Macmillan, Marie Curie - any support? They don't seem to have any support in place at the moment, aside from the hospice. It's her first visit.
I think he needs help looking after her physical needs - she wants to stay at home if possible but he can't do this alone and I am a long way away. Thank you

We accessed Macmillan support for my DM via the hospital while she having chemo, the Macmillan Nurse based on site gave us details of our local nurse.

DM's GP was incredibly helpful too & helped us access a 'Hospice at Home' charity in our local town, who were amazing and ultimately allowed Mum to die at home as she wished.

Both local hospice at home charity & macmillan helped with care and equipment.

He might be able to access help through the Hospice, our local one has it's own nurses that go out to patient's homes. DH's Mum had Hospice at Home enabling her to stay at home re her wishes. They arranged all of the equipment.

The Hospice also do complementary therapies and offer free counselling for the carer and the patient, followed by counselling and groups after bereavement.

Still here - thanks so much. I'm going to the hospice I think so I'll try to find out.

YY see if you can have a chat at Reception and check if they have any leaflets etc. Or have a look at their website. It's brilliant what Hospices can offer and not widely known.

Also ask about fast track funding if she is very unwell and is expected to pay for care at home. The hospice should have all the information you need, her gp and community nurses will probably also get involved in her care. Hope she is comfortable.

Ask the hospital or GP about fast track funding, they will put a care plan in place, provide equipment such as bed, wheelchairs etc.

Speak to the hospice they will be able to help.
If she wants to stay at home and needs care at home then speak to them about hospice at home. Her care needs will be assessed and a full care package put in place. They will also have a bank of volunteers who will do things like sit with her at night or during the day so that her husband can get a break.
The will probably be able to offer other things like art classes, massage, day outpatients, councilling for both the patient and family.
They are also much better at understanding pain and pain management.
They will put her on the echo team so any problems her husband will have one number to ring, explain the problem and they will take over. Whether it be a visit from the district nurse or their hospice at home team.
They will be able to talk over the options for the final stages. Whether she wants to die at home, hospital or hospice. Most hospices only have a few beds and each day they have a meeting to discuss who needs a bed whether it be for end of life care, pain management control or just respite. They try their very best to get you in if you wish to end your life there but of course it is not always possible as they can’t give what they don’t have but if you want to go in and no bed available and don’t want a hospital than hospice at home can step in.
Hospices are wonderful but vastly underfunded. I owe my local hospice my sanity for the help they gave when I lost my husband.

The hospice will be the one stop shop for support. There is a form the GP can fill in to fast track benefits if she is within the last few months of life.

So sorry you're going through this. Have you all discussed her wishes of where she wants to die, who she wants there, what she wants her funeral to look like?

Fast track funding can be done in 24 hours. My husbands was. The hospital bed, air mattress and other equipment needed delivered within 24 hours with a full care package in place.
When you get to the stage of hospice at home you are usually in the final stages and not expected to last more than 6 weeks. But the funding and package can be extended past this period in the event it is needed.
The hospice can also arrange an emergency pack of any meds to be available in injectable form so if and when she can’t take her meds orally they are available immediately. They will usually add other things to the emergency pack which will be needed further down the line. This pack is just kept at home with the patient and only comes into play when needed but having it ready means that pain or confusion is kept under control.

If she is in the last 6 months of life (which is usually the time you are referred to the hospice) disability benefit is paid at the higher rate for both care and mobility. Contact Macmillan and they will apply on their behalf. A 5 minute phone call and they will do the rest. No forms and payment starts within a week or so.

Thanks so much for all of your advice and kind thoughts. It appears that whatever care package was agreed simply did not happen. Once in the hospice we had to take it fr scratch as nothing had been set in train, although she was registered with the hospice a couple of months ago.
Before she goes home we have been assured (again) that a full package will be in place.
Thanks again, so much - I was at a loss earlier and feel a little bit more confident now in the system.

So glad they are sorting it out, not surprised it didn't get done though she may need some equipment at home first, maybe a hospital type bed, commode, recliner chair, confidence products, things that make life a bit more comfortable.