Palliative care

[Italiansunsets]

We have a home visit booked for this afternoon for a palliative care plan to be put together. Does anyone have any words of wisdom or tips for us please? Thank you in advance x

[Sawa]

Hi Italiansunsets,

I'm not sure how things work in the UK, but I'll give you my experience from South Africa. I found the most wonderful Palliative Care doctor. She started caring for my husband about 5.5 years after diagnosis. Among the things she did for us:

- checked all his vitals on a regular basis, making sure that everything was kept as stable as possible. She picked up irregularities in his BP and also checked regularly for signs of infection.

- she put us in touch with a nurse who would visit us at home when he needed a catheter for a short time

- she helped us have that all-important conversation around end of life care. My husband was completely non-verbal by that stage, and I had dreaded having the chat, but she made it all so easy. And I was so relieved that I knew exactly what his wishes were.

- when hubby eventually moved into his final phase, she transitioned to home based care as he had wanted to stay at home and not go into a home / hospital. When it was clear that he would not leave his bed again, she administered a syringe driver to keep him pain free and comfortable and came to us every day to top up and adjust the syringe driver

- her staff arranged for a funeral home to collect his body once he had passed

- most importantly, she gave me such emotional support for his last 18 months, and especially during his last days.

Palliative Care is an absolute must; it was such a comfort to have an expert to guide and support both of us.

Good luck!

S

[AnneandChris]

Hello there

I lost my husband Christmas 2019 and my GP was in contact with our neurologist who, when it became apparent he could do no more, handed my husband's care to the Palliative team. Our GP then liaised with them, but we also had the benefit of our community/district nurses who fortunately had previous experience of caring for someone with PSP.

The nurses visited at least once a day and were at the end of a hot line if needed. They, together with our team of carers ensured that Chris was comfortable at all times. A driver was fitted towards the end and this ensured he had died peacefully.

I appreciate this was four years ago and we have had the pandemic which may have had an effect on what is now available.

The one problem we encountered towards the end was getting someone in at night to help turn him to avoid the skin breaking down. We had CHC funding and the nurses applied for this to cover night care whilst the decision came through quickly it wasn't implemented as it was over Christmas and all carers, local hospice, Marie Curie etc. etc. were fully booked. However I was able to book a private nurse/carer who came in on Boxing night and was booked for the following night, but not needed, as he died on the 27th.

I hope this helps you, I think the main point is to get everything in place in anticipation of what is to come. We were fortunate to be able for Chris to stay at home, which is what he wanted.

Stay strong and keep on keeping on.

Hugs

Anne