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Hospices - what can we expect when our loved ones are able to stay or visit?

(69 Posts)
whenim64 Wed 20-Jun-12 16:01:25

My sister went to spend a few hours at her local hospice this week, with a view to going regularly, as her illness progresses. It has a great reputation. It was sold to her by the hospice worker as a place to go and do a variety of therapies and activities, and where she could become familiar with the surroundings as she wants to go in the hospice if she is too ill to be nursed at home.

She came home very disappointed. She is only 62, but she said that there was little on offer, shortage of staff, and they said she could join in 'doing quizzes.' She can do that at home with her family, and we have lots of other things that we think up to keep her interested and active.

I asked if I could visit and sit with her for an hour or so when she goes, but it seems that's not allowed (eh?) I asked about the set-up and it seems carers have to drop off the patients at the front door and they don't go in. I imagine it's different when they're staying as an in-patient.

She has enough energy and spirit for her (and me) to see the lack of user-friendliness in this, and we joked about changing the regime, as this isn't our idea of offering some support to cancer patients, unless they are in bed, in which case why not stay in your own comfy bed? Perhaps the visit is just respite for the carer? Her husband certainly needs a break, which we try to help with, but not at the expense of her spending a day bored out of her head. She's going to give it another try next week, in case she caught them on an off day grin

granjura Wed 20-Jun-12 16:20:44

What a pity. The local hospice where I last lived in the UK was wonderful- and visitors were always welcome. (Loros in Leicester). I so hope her next experience is better or that she finds another hospice with good palliative care and welcoming to family and friends.

susiecb Thu 21-Jun-12 17:08:40

Thast does seem a shame and not typical of the hospice movement. My father ws cared for in St Helena Hospice in Colchester and we can never thank them enough for the love and care they gave him. professionally I have dealt with a number of hospice and even worked for a visiting hospice in North Yorkshire and have never heard a story like this ne. i do hope your sister enjoys her next visit a little more.

whenim64 Thu 21-Jun-12 17:22:49

Thanks susie we were rather puzzled by the way things seem to have evolved at this hospice, to the extent that carers don't go in when taking their relatives in for a few hours. I'm wondering whether it's a recent thing and the staff would welcome carers and relatives visiting their day-patients. We're going to find out more next Monday.

moving Thu 26-Jul-12 02:20:52

I am sorry to heart that, But cancer bring people pain ,that is terror.

Elegran Thu 26-Jul-12 18:41:04

Not all cancer brings pain, moving and when it does, the pain can mostly be drugs or other means. People in novels or soap operas who get cancer are always depicted as terrified and racked with pain, which spreads the horror in which cancer is held. As someone who has accompanied someone through three years of cancer, I must point out that for most of that time, there was no pain at all, and in the later stages it was held at bay by increasingly strong medication. There was more distress at the discomfort at some of the side-effects of chemotherapy andat the knowledge that this was the end of a life.

Elegran Thu 26-Jul-12 18:42:08

That should have read "can mostly be held at bay by drugs and other means"

Mishap Thu 26-Jul-12 19:02:56

That is a strange policy, when.
I was in and out of our local hospice as a SW and they welcomed anyone, particularly relatives and carers as they knew that time together was precious, but sometimes a new venue and new people to talk to could be very helpful and lighten the mood.

Could you talk to the local MacMillan nurse? - or is she the person who made the initial recommendation?

whenim64 Thu 26-Jul-12 19:13:41

We've clarified again with the hospice and visitors are not allowed on the days when my sister goes for respite, but it's fine when she goes in to stay. Meanwhile, she has become very ill, and contrary to what has been said above, is having a terrible time which I won't describe. I now understand those people who refer to a 'battle with cancer.' She is currently in hospital. Most distressing.

The local Macmillan nurse gets some things done, and we try elsewhere for other things we need to happen. Yes, Mishap she did make the referral on the request from my sister and her husband.

Ella46 Thu 26-Jul-12 19:38:25

when flowers

Faye Thu 26-Jul-12 19:49:35

when ((hugs)) flowers

Mishap Thu 26-Jul-12 20:29:32

Sorry to hear she is not well just now.

whenim64 Thu 26-Jul-12 20:34:20

Thanks, peeps. Just had a lovely text to say symptoms have subsided since this afternoon. A little reprieve but it means so much smile

JO4 Thu 26-Jul-12 20:40:02

Sorry to hear your sister has become so ill when.

I wonder if the policy re no visitors for patients going in for day visits could be down to the fact that they want to keep the atmosphere calm and fairly quiet. Perhaps they feel that visitors in the day room might overwhelm some of the patients.

No doubt if and when a patient has to go in for full time care they would be more on their own and perhaps not participating so much in communal activities?

Very sad. sad

whenim64 Thu 26-Jul-12 20:54:08

I think that's it Jingle, but it rather took us by surprise because we are close sisters and want to be together whilst we have the time, so I have sat with her in hospital and at home, and she wanted me near in the hospice. It'll be irrelevant soon - she'll be admitted to the hospice and I can spend time with her as freely as she wants. Not so we can sit and cry - we have lots of laughs and do fun things to distract ourselves. smile

JO4 Thu 26-Jul-12 21:04:55

smile and sad

Ariadne Thu 26-Jul-12 21:11:59

Oh, when xxxx thinking of you both. flowers

Anagram Thu 26-Jul-12 21:21:11

So sad that your sister has become worse, when - I feel for you.

nightowl Thu 26-Jul-12 21:33:08

So sorry when, thinking of you through such a difficult time ((hugs)) xx

glammanana Thu 26-Jul-12 23:06:51

when ((hugs)) winging their way down the M56 flowers

Sewsilver Thu 26-Jul-12 23:56:25


Bags Fri 27-Jul-12 06:26:04

Love from me too, when xx

JessM Fri 27-Jul-12 07:05:24

Ah and another one here who would like to give you a hug.
Sorry to hear she is so ill and hope they are getting the pain relief as good as possible.
Hospices are individual charities - part of the hospice movement - which i have always found strange - that they have to raise their own funds - so I guess they are going to vary.
My son's friend died in the one in Wellington NZ and he was there a lot. He said they were as near darn perfect in how they dealt with Miles and his family, as he could possibly imagine.

Libradi Fri 27-Jul-12 07:17:14

Sending you hugs when flowers

whenim64 Fri 27-Jul-12 07:30:44

Thanks, everyone - you have really cheered me up this morning. My sister has gone 24 hours without nurses going into panic stations and it's such a relief to wake up knowing she's comfortable in a room where they have her closely monitored, after a week of emergency ambulance dashes and family rushing back to her bedside. We still have so much hope that she can ride this latest storm. smile