Palliative care

hi o.d, sorry to hear about your mum but glad that you have managed to set things up for her to come home and that you and your dad are able to support her there.

In terms of emotional support, you are so right that in the caring role we can need a lot of support and you can see on our main site Looking after someone with cancer that there are a number of links about how we cope when we are carers - it is really important to remember to look after ourselves and of course make sure your GP is also supporting you.

Perhaps the most practical advice is to remember to take some time for you to recharge, like you said you don't know how long she has got and indeed even the best oncologist can only manage a guess, experience suggests that unless there is a really good reason a prognosis can cause more problems that it might solve.

Do post on here whenever, someone is always listening but it you need a quick fix the helpline is here for everyone.

One of the most positive things we did with our parents towards their end was talking about their childhood but also going through old photo albums since many pictures did not have any context. Those memories are really precious to us.

<<hugs>>

Steve

My dad has also had to stop palliative chemo. Today he has been given 6-8 weeks to live. Here looking for support from anyone who has experienced a similar situation.

Hi O.d & Orange 1234

When my husband was diagnosed with secondary brain mets ( primary lung) he was told by the oncologist that treatment would keep it stable for around 2-5 years! We were devastated when the first chemo/immunotherapy totally destroyed his system. After a traumatic stay in hospital we made the decision to care for him however long he had , at home.

We sat down & made lists of everything we’d need, special wet wipes for face, hands, body & intimate. Spray foam to dry wash him, absorbent pads for the bed, incontinence pads & pants ( which we replaced with pads & a Conveen), soft lighting, a comfy chair for us to sit in while caring for him, a box with scented nappy sacks, bin bags, tissues, loo roll, latex gloves, masks, aprons & anti bacterial gel. We also made a play list of his favourite music, put photos on the walls at eye level, bought pillows in various thickness & made draw sheets to go on the bed ( we were loaned a hospital bed & air mattress). We also set out a table with paper for notes, a list of medications to be taken& when with a tick chart. Sheet with all emergency phone numbers & a pen. 

We cared for my husband for 5 days with no help then we were given a palliative nurse who organised Carers to help & wonderful Marie Curie nurses who gave us a break for 4 nights so we could sleep.

Sadly my husband passed away in my arms 12 days later but it’s small comfort that we did our best for him & cared for him at home which was his dearest wish. If I can be of any further help please don’t hesitate to ask.

i send you a big hug x