Hospice meeting re-visitedThe kindness distance, and

FormerMember over 5 years ago

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Daloni, I hope you don't mind me picking up your post from January.

I followed the thread with great interest but from a distance, it seemed a long way off.

Recent events have brought it upfront and centre stage, and yesterday my husband and I went to the open day at our local hospice. I was half expecting to fly under the radar, but the first person to greet us asked what had brought us there. I couldn't speak. I literally couldn't even say my name. We were whisked off for tea and cake before we even got started!

The kindness and understanding we were shown was everything we could have hoped for and more.

They said that there is overwhelming evidence that people in this situation who establish a relationaship with the hospice sooner rather than later do far better. In particular, the support and reassurance offered to family and friends is priceless. My younger son hasn't told anyone at work about my diagnosis, even when he asked to work from home when I first came out of hospital.

We are very lucky in York, the hospice has been assessed as 'outstanding', and I know that Claire's experience was very different.

But the message was, don't wait till you get to the bridge to figure out how to cross it.

I feel a bit tearful today, and a teeny tiny bit sorry for myself. But I also feel I've added an arsenal to our support group, especially for my husband, sons and family. xx

FormerMember over 5 years ago

Hi , a second vote for good hospices! Due to my short sell by date, I got referred to my hospice straight away. Walking through the door for the first time was tough & I recognise the speechless feeling, but what a relief to be there and know they are there for me, and as you say, to be a support to family. I think we are lucky in Edinburgh too, everyone should be able to have this support if they need it.

love heather xxxx

FormerMember over 5 years ago in reply to FormerMember

Hi Tinalay

I was the exact same when I went up the first time. People assume I am there for bereavement councilling rather than a patient. The first time i went in I burst into tears.

But i found like you, that they were so welcoming and supportive and they have so much on offer.

After treatment I needed re boosting up again and pain medicine tweaking. I stayed for about 4 days and it squashed any remaining fears I had.

I go twice a week now to use the gym, get some physio and they give me a hot meal too. They organise drivers to get me as my license is suspended due to the brain tumours.

I normally don't feel comfortable attending support groups. Usually I'm at least 20 years younger than the next youngest and find I can get ignored. They do group meals 3 times a week. I got chatting to some of them and decided to eat with them. Again was emotional the first time as i thought we are all here because of the same reason, but I did enjoy the company. I now look forward to seeing them.

So totally agree about accessing the hospice as early as you can it really helps.

FormerMember over 5 years ago in reply to FormerMember

I am just catching up with this. I’m so glad you had such a positive experience, . I can understand how you might feel tearful. It’s another milestone and one I think it’s natural to resist. None of us wants to admit we need a hospice. So maybe it’s tears of relief - that help is there if we need it - as well as tears of passing this milestone knowing there’s no going back? That’s how I feel.

One of the important things I get from the hospice is regular phone calls from the home hospice nursing teams. I was recently promoted to a phone call every three to four weeks - it used to be six to eight weeks. It’s really helpful to talk to someone who knows me about how I’m really feeling. There’s no agenda and no expectation that the nurses need to do anything but I know they have their eye on me. If I did call in an emergency, I wouldn’t have to explain myself or my story.

It’s great to hear other good experiences too.