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Life-limiting illness

Hospice care....

20 replies

Ilovenannyplum · 13/02/2015 09:46

My great nan (86) has in the past week been diagnosed with bowel cancer after being v poorly but refusing all tests, eventually she decided to let the dr near her and then it was discovered. She's being fed via tube and in a great deal of pain.
They were considering an op to enable her to eat but have decided it's just not worth putting her through it and have instead decided to make her comfortable, she is being moved to a hospice immanently.

We're going to visit on Saturday (she is 4 hours away) I've never been in a hospice before and I don't really know what to expect and I wasn't sure if I will be allowed to take in 6 month old DS. I know I'm probably being a bit silly but I always deal better with things if I know what to expect before hand, it's my coping mechanism.

Anyone got any experiences that they could share? Sorry I know it's not the nicest of topics, I don't mean to cause upset to anyone :(

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PestoSnowissimos · 13/02/2015 09:50

Sorry to hear about your great nan

I think the move to the hospice does sound the best plan and she will get absolutely the best end of life care there. If I were you I would ring the hospice and ask them whether or not you can take your DS in with you when you visit.

Good luck!

Slingclutter · 13/02/2015 09:56

Sorry to hear that your nan is so ill.

I hope I can reassure you. My late father was in a hospice during his final days and the care he received was absolutely wonderful. He was treated with great dignity and respect and every patient there was made to feel very comfortable, with as much control over the situation as humanly possible in the circumstances. Their aim was to enable patients (and their families) to be as comfortable as possible, and make the most of the final hours/days they had left. For example, my df had a lovely window which looked out over the garden, and on the evening before he died, he was offered a whisky and a piece of ginger cake from the drinks trolley (he couldn't really eat or drink but he really appreciated the gesture!)

My suggestion would be to call the hospice in advance. Tell them exactly what you said in your op, that you are apprehensive about visiting and what is their policy with regard to infants etc. Ask them if they could fill you in on how it all works. They can be pushed from time to time, but if they sound busy when you call initially, ask when it would be convenient to call them back. If it's anything like the hospice my df was in, they won't mind at all, and they make families feel very welcome.

I hope it all goes as well as it possibly can do in the circumstances on Saturday for you x.

Ilovenannyplum · 13/02/2015 10:05

Thank you both and sling I'm sorry about your FIL :(

I really really hope they'll at least let me pop in with DS, her great great grandson, I knew it will make her happy only if she only sees him for a few minutes.
I thought I was ok about it all but after writing it all down, I'm now on a bus on my way to a baby group trying not to cry!
My poor lovely Nan, she'll be back with my Grandad though which is all she wants :(

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Behooven · 13/02/2015 10:11

When my dsis was in the hospice they welcomed all the family including young children. They even moved her bed into the conservatory to allow my bil to bring in their beloved collies to visit her. They jumped straight in the bed and snuggled her as if they knew. No one minded. And that gesture summed up hospice care.

Ilovenannyplum · 13/02/2015 10:26

That's so lovely Behooven

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TeaandHobnobs · 13/02/2015 10:31

So sorry about your nan I'm sure the hospice will take excellent care of her.

My dad has spent some time in a hospice for respite care. I always took in DS who was 20m at the time. At 6m your DS is so little, he wouldn't be a problem. We just tried to be respectful of other patients and not cause too much noise (i.e. kept the door closed, let DS run around in the garden a lot to burn off steam). I'm sure the hospice wouldn't have a problem with it, but it is worth calling them to ask anyway, especially if that would make you feel less apprehensive. I'd suggest taking a sling, a bag of snacks and some toys to keep him occupied - I've become a bit expert at fielding a tiny child on hospital wards, in hospices and nursing homes now!

I'm sure the idea of visiting a hospice feels quite daunting, but like slingclutter says, they are often lovely, bright airy places - Dad's has a great aura of calm to it.

Ilovenannyplum · 13/02/2015 13:36

Thank you Tea, and I'm sorry to hear about your dad.
My mum was in hospital recently (healthy bunch my family) and I took him to visit and he was fine, he made lots of friends and people appeared to be quite happy to see a little cute fat baby. He's quite happy having a nose around so I think he'll be fine. Your DS sounds like a v well behaved little thing.

I didn't realise hospices had private rooms, I thought it would be like a hospital ward

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TeaandHobnobs · 13/02/2015 13:45

It was a mixture - he was in a private room to start with, then ended up on a bay with two other men. That was a bit more tricky with DS, but we managed.
Dad is currently in hospital again in a 5 bed bay, so we are at it again at the moment! DS is almost 3 and hasn't quite got the hang of an "indoor voice" yet Thankfully the other gentlemen seem forgiving

Ilovenannyplum · 13/02/2015 14:03

At indoor voice, bless him.

Some people hate the noise/mess/chaos that kids bring and some enjoy it, I'll guess I'll find out on Saturday what our audience is. The minute he starts whinging, he will be taken outside, I really don't want to annoy anybody but I really do want my nan to see him one last time, I'm sure given the circumstances, people will be understanding

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cazzmags · 13/02/2015 14:34

So sorry about your Nan.

My dear Mum passed away at our local hospice 7 years ago. I, like you had no experience of hospices and I was unsure what to expect. We had resisted Mum moving to the hospice from hospital as we were fearful but all our fears were unfounded and I have to say from the minute we walked through the door it was an incredibly positive experience for the whole family.

Mum ended up being there far longer there than anyone had anticipated. During her time there we celebrated Mothers Day and a family Birthday. The children were always welcomed and we even took the dogs in to see her. My Mum took such delight in seeing the children and having her dog curled up on the bed next to her. It was really was like a little heaven on earth and the palliative care she received was wonderful. Her passing was peaceful and we were all with her.

If our experience is anything to go by your Nan and the family will be treated with the utmost respect and kindness.

Ilovenannyplum · 13/02/2015 15:59

Oh Cazz, I'm so sorry about your mum but that does sound lovely that she could have the children and the dog (obviously the situation was far from lovely but just the way it was dealt with) I feel very reassured by all this now and much braver about tomorrow.
Was thinking about taking her something, but my brains just gone blank, flowers seem a bit of a cop out and obviously foods a complete no no. A small teddy perhaps?

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cazzmags · 14/02/2015 18:59

Hi, just wondered how you got on today?

TooSpotty · 14/02/2015 19:03

I hope today put your mind at rest, Ilove. When my daughter was in the hospice, for respite and then end of life care, they welcomed the whole family unreservedly, including our babies. That was a children's hospice so I don't know if adult ones are different, but I have the impression that the whole hospice movement is about making it as much like home as possible, and involving family and friends as much as they want.

Ilovenannyplum · 14/02/2015 19:51

Thank you, that's very nice of you. So sorry to hear about your daughter toospotty :(

Baby was welcomed in and made lots of friends, all the staff were lovely and were so kind and patient when dealing with my nan.
It was so sad seeing so many poorly people, there were wards, not private rooms so couldn't help but see but tried desperately not to look iyswim.
Nan v happy to see baby, was so nice to see her smile

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TooSpotty · 14/02/2015 19:58

I'm so pleased to hear that. My father died in hospital and I have to say I ignored the rules to take my four month in twice to see him. The aggro from staff was worth the happiness it brought him. Babies bring so much joy to those at the end of their lives.

Ilovenannyplum · 14/02/2015 20:15

Sometimes it's absolutely 1,000,000% worth breaking the rules

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Instituteofstudies · 14/02/2015 23:41

So sorry about your dear Nan. I've recently lost an elderly friend to bowel cancer. She wanted to go to a hospice when the time came and my goodness me, the care she and her family and friends received in there was absolutely awe-inspiring. Nothing but nothing was too much trouble for any of the staff. No matter how many times the staff were called to adjust her position or to answer a question, they attended with immense thought, patience and love.

There was a sofa bed for anyone who wanted to stay over in the room with her and every measure was taken to give her as much control over everything she was able to influence - when she tried to sleep, wake, eat, sit etc.

I vowed that I would write in my instructions for family that I want hospice care if I have a terminal illness. I cannot fault any aspect of the care offered. They even cleaned the place with stuff that smelled exactly like fresh oranges, so there wasn't a disinfectanty smell. Such thought! My friend felt safe there and I felt safe for her. My parents both died in hospital and in my Mum's case, I was permanently in fear for her wellbeing throughout. you will be able to take ds in with you.

Thinking of you and your Nan.

Ilovenannyplum · 15/02/2015 17:19

Hospice visit no 2 today.
Ended in my sister and I crying in the loos, I think it all just got a bit much.
My Nan thankfully, has perked up a little bit, being in the hospice with the lovely lovely nurses looking after her instead of being in a busy hospital seems to have done her the world of good.
There is a lady in the bed opposite who is v v poorly, her husband was sitting with her today whilst she was sleeping and he looked like the saddest person I've ever seen, she only looked in her 40's and I felt so sorry for them. Heartbreaking.

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Behooven · 15/02/2015 17:27

Ilove

Yes, the sights you see in hospices are dreadful. All ages and all there for the same reason. Puts things in perspective doesn't it.

Ilovenannyplum · 15/02/2015 17:35

Completely. In my naive and clearly idiotic head I was just thinking it would be older people.
I know it's silly but I can't stop thinking about that poor lady :(

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