Without this (we’ve said time and time again…) if I hadn’t found this place, I honestly don’t know how I’d have coped… and that’s not even exaggerating! We’ve said time and time again – I don’t know what I’d have done without Skanda. I honestly do not know. I just don’t know – I don’t know where I’d have been. Certainly not where I am now!
It’s a well used phrase, but it’s beacon of light.
It is! There’s just something there. It’s just a feeling, and it’s hard to put those feelings into words, because it sounds “Oh yeah, blah blah blah” – but it’s heartfelt. And unless you go through that feeling it’s very hard for anyone else to understand.
What were your first impressions of the hospice?
Forget hospice where you just go in and die. Forget that. We’re all dying anyway from the minute we’re born! OK – but this helps it along really lovely! Just because you’re going to the hospice, doesn’t mean you’re not coming out again.
I came here and, you know, the minute I walked through the door it was quiet. And I don’t mean quiet like there’s nobody talking. I just mean quiet. Peaceful. I went “Ohh” [sigh of relief] “Aah, this is just… heavenly”. I can relax. My headache is going to get better. I can come here and be quiet.
If you’re stressed out, then the drugs are fighting you and your stress – they’re not going to be half as effective. So it’s down to relaxation again.
So I say “Go and meet the brothers and sisters – they’re not walking around with long faces. It’s not like that. We have a laugh, we have a giggle!” And with that comes happiness, and then relaxation. It’s a big circle! All the time.
What do you think is most important to patients?
Understanding. Not sympathy. We don’t want sympathy. We just want understanding… of how we want to be.
You know, you don’t want… “Are you alright? Are you alright?” We don’t want all that. We just want calmness, and knowing that there are people there who care. That’s it. That’s all you want.
Compassion and hugs work miracles let me tell you! More than anything. You can go through anything, but you get a hug… then it’s “Ahhh, ok!” It makes all the difference. You know… you don’t shake hands here, you hug! [laughs] Yeah definitely.
You know, just to be cared for and to know that you’re surrounded by love, to be honest, you’re happy then. You’re fine then aren’t you? No matter how much pain you’re in. You can cope with more pain when you’re happy. I know that’s true. That is so true.
Is it helpful spending time with other patients?
You walk through the door. You get a hug. You’re introduced to everybody and you start chatting.
I mean, one girl in particular… she was very quiet and she said “Umm, I don’t know if I’ll come back.” We got chatting – had a long chat – and now she comes all the time.
So I spoke to her, and she said something that was happening to her. I obviously can’t say it, but you know. I said “I had that!” And then I went through how I had it, and the funny side.
And the relief… I can still see it to this day… the relief on her face. She laughed. She said “Really?” I said “Oh yeah… these were seriously long!” I won’t go into details, but she really really laughed. She said “I was so worried about that.”
So she instantly felt better, you see, because we’re all sharing experiences.
What’s it like being cared for at home?
When you’re at home (it doesn’t matter how ill you are…) your mind is working. It’s working all the time. You want to do something… you physically can’t, but you want to do something, because you’re thinking “I needed to do that the other day.”
It’s simple things. It could be “Oh, did I dust above the shelf?” You know what I mean? It’s really silly little things “Did I hoover under the bed?” You know – it doesn’t matter if you’re halfway through your life, or at the end of your life, the same feelings are there.
At home you’ve still got that little bit of… not stress… but “I need to do something”.
Here, you come in, you’re going to lay down on this bed, and everything else is going to melt away. You’ve got no worries… no worries whatsoever. You’ve got the brothers and the sisters, the carers, they’re there if you want them, but you’ve got no worries.
“Relax and pass away” sounds awful, but you can just relax, and when your time comes, you can go peacefully and calmly – the best way you can. Rather than… even at home would be stressful, and a hospital would be a no no, for me.
If you haven’t got a beautiful place like this, then home is where you’re going to be – but it’s still… it’s still a bit stressful at home. Because you’re worrying about your partner, or whoever’s around. You’re still worrying about them. “Oh must get up and make them a cup of tea!”
It’s silly little things like that, but if you’re here, then you haven’t got that pressure of wanting to look after your partner. Or your kids, or your dog. Anything. You know… you haven’t got that pressure.
Tell us about the hospice therapies: Reflexology and massage.
I’ve just been down here to have my massage and I feel heavenly! I feel much lighter, I feel… my whole body is “Yeeeey!” [laughs] I’m fine now!
You know, there is no other feeling in the world, than somebody who cares… believes in what you believe in… everything, nature, love, other people, you care… it’s amazing.
It goes straight through you. When sister touched my arm and started it was just “Ahhh, that’s it, I’m fine now.” It really goes straight through you.
It’s a well being feeling. Throughout the body. All of you. All of it. Every bit of you. Not just mentally, not just your bad bits, stiff bits… it’s all of you. You feel happy inside.
Do you think there’s a difference with volunteer based care?
I’m not saying they don’t care – of course they care, but… ah, there’s a difference. There’s such a difference.
I did go into another hospice to have a look. And I went in there (obviously I don’t want to say where…) but I went in there and she said “Oh, we do this on Mondays, that on Tuesdays, this on Wednesdays…” And I could feel my tears coming down my face.
And she said “It’s not for you is it?” And I said “No, I couldn’t cope with this.”
I came out crying. Not because they didn’t want to do it. It wasn’t that. I mean they were good. They wanted to look after you, but it was the atmosphere. It was the atmosphere. It felt like the ‘last chance hotel’ sort of thing.
[laughs] No I couldn’t do it.
I think more places really need to understand what the patient wants. Not doing what they think is right for the patient, but listen to the patient. To do what they want.
But they’re not. They’re saying “Let’s keep you occupied. Do this, do that…” But we don’t want to be occupied! We’re not gaga!
Do the medicines… fine, that’s what you’re good at, but let us tell you that the quiet, the stillness and the fun… not the seriousness. Nobody wants to be serious. Even if you’re near the end.
You don’t want to be serious, because you can’t change the outcome! So enjoy it, the best you can. Just go along and be cared for and enjoy the love from it. That’s all you can ask for.
Thanks so much! Anything else you’d like to say?
This has got to be a flagship for hospices. Please come here and see this… come and see what they’re doing… how we’re all interacting. They don’t treat you like patient and nurse, sister and brother, they’re all together. You’re all people dealing with different issues.
But just enjoy it. No-one’s telling what you want to do, or saying shouldn’t you do this… It’s just “Are you alright? If you want something shout.” That’s fine… that’s all it is isn’t it? But if only more hospices could be built or managed like this.
So what do you think? We’d love to hear your thoughts and experiences – please leave a comment below.