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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Terminally ill friend - visiting etiquette

58 replies

Scuttlebutter · 29/03/2011 20:06

I realise this is not strictly an AIBU, but I really didn't know where to put it, and am feeling pretty emotional at the moment, and not really engaging brain to normal capacity. My dear friend received her terminal diagnosis some eighteen months ago. Since then I've done what I can to help, especially as I've had cancer myself, and her family are all living away. Along the way, we've also had a lot of fun - part of the reason why we're friends is that she is always such an interesting, cheerful person to be around.

Anyway, about ten days ago, she was finally admitted to our local hospice where she is receiving wonderful care, and she is very happy. I've seen her, or phoned her or sent cards most days, though not over the weekend, since her family all came up, and I didn't want to be in their way. Also, the hospice has a strict 2 person per bed rule (which I wholeheartedly support, by the way).

I called her today, and her phone was answered by a family member, who mentioned she is now (very peacefully) sleeping/resting most of the time, and the family are all gathered. I asked about visiting and they politely (but rather reluctantly) said I could, though of course my friend might not even know I'm there.

I'm now in a real dither about visiting. Firstly, I don't want to be overloading visitor numbers. Secondly, is there any real benefit to my friend if she isn't even awake? Thirdly, I am getting the feeling that the family now have "circled the wagons" round the bedside, which as the end draws near is only to be expected. I'd feel as though I was butting in, I think. Last time I visited, another family member sat there very pointedly during my visit, which made things quite stilted, since as they live away, I've heard about them from my friend, but barely met them, and of course the conversation had to be very general to include them, rather than the nice private chat I was hoping to have with my friend.

So, any guidelines/experience/suggestions? I should stress that I think it is quite natural and right for the family to have priority now that the end is very near but I am also not wanting my friend to think I'm not there when she might need/want me, although sadly I suspect she's actually past that now. This is a really horrible situation.

OP posts:

Asinine · 29/03/2011 20:31

Go and just be yourself. Say exactly what's on your mind "I hope i'm not intruding", 'I don't know how to say this but...' , share happy memories with family or nurses. You'll be fine, but do go.

fairtradefloozy · 29/03/2011 20:37

Another message of support and a vote to go. At this point its also as much for you as it is for her - and actually for her family too, I think ... you've been close, been there for her up to this point. They will be happy to know that you are a "right to the end" friend, I think. You all care for her and want whats best.

Be strong and go safely

Sweetpea215 · 29/03/2011 20:49

I agree with Terra....

You've been a really good friend to her...and you owe it to yourself to be allowed to go and say your own goodbye.

You don't want to be wishing further down the line that you hadn't missed this opportunity.

I am sure the family wouldn't mind...in fact you may be a very welcome arrival and a comfort to them that they can be with someone who knew her as well as you did.

MorticiaAddams · 29/03/2011 20:52

Go and say goodbye but make it clear to the family that you will only take a couple of minutes as you know their time with her is precious.

Much strength to you.

Ariesgirl · 29/03/2011 20:52

You sound like a wonderful friend Scuttle. I hope your friend's end is peaceful and painless.

Good luck with whatever you decide.

TidyDancer · 29/03/2011 21:14

I'm so sorry you're even having this dilemma, and more so that your friend is sick. :(

I really think you should go to see her, family there or not. You know your friend, you know how much your presence would mean to her, and if she is aware of the people who are around her, then it would mean so much to her that you went to see her.

That said, please don't feel guilty if you don't feel able to go, this is a very difficult situation.

You sound very sweet and I'm sure your friend already knows how much you love her. x

zippy16 · 29/03/2011 21:14

You have been a wonderful friend, please please go for the both of you. It doesn't have to be for long. Hearing is the last sense to go, so there is a real possibility that your friend will hear you. I sadly went through this with my aunt, so I know how hard it is and even though I wanted to spend all my time with her 'we' also appreciated that her friends wanted to say goodbye

springbokdoc · 29/03/2011 21:55

Oh Scuttle I'm so sorry. Can only echo what has been said above.

Go. I firmly believe that terminally ill people do know who is around them at the end. If she is aware of who is around her, your presence will give her comfort. If not, you can say your goodbyes. Personally, I would ask the relative who looked the most approachable if you could have 5 minutes alone with her to say your private goodbye. Surely only the most heartless wold say no.

BTW I would take someone with you, even if it's just to drive you home. This can take more out of you than you expect (even if you knew it was coming).

kittybuttoon · 29/03/2011 22:17

She's lucky to have a lovely friend like you, Scuttle, and if it was the other way round, you'd love it if she came in and whispered thanks for being such a good friend, and wishing her well on her journey. That's what I'd like when my time comes.

You could give her a lovely goodbye, and also make her feel safe and loved at this time. She may well be able to hear you, especially if you put your hands around your mouth and whisper into her ear- and anyone else there won't be able to hear - it will just be you and her. Please go and see her and give her a kiss.

My heart goes out to you both. xxxxx

georgie22 · 29/03/2011 22:28

So sorry to hear about your friend - it must be very hard for you but it sounds like you have been there for her as a great support over the past 18 months. I work in palliative care and think it is important that you say your own goodbye to her. It is thought that hearing is retained until close to the end of life so I always advise families to carry on with the normal day to day activities, conversations etc. they would usually have as it can be a comfort for the person to hear familiar voices (I work with people being cared for at home usually).

I agree that you should see your friend - just ask her family if you can have a few minutes on her own with her to say your goodbyes. It's better to do that than regret not doing so in the future. Thinking of you at a difficult time.

bonkers20 · 29/03/2011 22:30

Do go. It will help you enormously with your grief if you have been able to see her in her last days, maybe help you accept that it truly is her time to go.
Hearing is the last sense to go so she may well know you are there and gain comfort from that.
It sounds like you are very sensitive to the family's feelings and I hope they acknowledge this despite their own personal sorrow.
It IS a time for the family, but I think you should be able to spend a short amount of time with her.
I am so sorry. It's a blessing that you have been able to spend so much time with her. If you do go and find that it's really inappropriate for you to be by her bedside then spend some time in the hospice chapel or quiet room. Being in that environment will help you feel more connected to her.

Oh I'm crying now, remembering the last days with my Mother :(

helibee · 29/03/2011 23:44

When my mum was dying, we had her at home and obviously we were always there. However we had an open invitation to any of mums friends, colleagues and church friends to come in and sit with her for half an hr. In her last week, we restricted this to close friends and family and they all got to say goodbye to her.

I'm so sorry that you are going through this. I would go, give her a kiss, hold her hand and say goodbye. They won't object to that x

Original poster

Scuttlebutter · 30/03/2011 01:11

Thank you all so much for your kind words - I'm overwhelmed by the number of responses. After posting earlier, I had to go out to work, and while there received a message on my mobile to say she had passed away peacefully.

Fortunately, we were both able to talk about her forthcoming death quite freely - she was very much at peace with it and just used to get frustrated at some of the minor inconveniences along the way. She also used to get very annoyed when people would talk to her in a special, lowered tone of voice - "I'm not dead yet" she would say, with a big grin. We had many, many special times together, and I am very proud and privileged to have been her friend. One of the loveliest things she did was last year, knowing that her time was drawing near, was to give me her quilting stash (fellow quilters will know what an honour this was). On my last visit to the hospice, I was actually able to take in some quilt blocks and a bag I'd made for my MIL for Mother's Day using some of the fabric she'd given me - so her legacy will live on through that.

Two lessons to share from this - firstly, please don't delay in getting any symptoms checked out and secondly, do cherish your friends. I am very happy that we did - so although I am grieving now, I have some wonderful memories of a dear friend and an amazing friendship. Once again, thank you for the very kind messages.

OP posts:

MotherMucca · 30/03/2011 01:28

Scuttlebutter, I was about to post, but read your update.

How wonderful that you and she had such a great friendship - I often think that our female friendships are as important to us as our closest family. How fabulous that you can quilt in her honour

I am so, so sorry for your loss. Be kind to yourself. X

GilmoreGeek · 30/03/2011 01:39

Oh Scuttle, I was just about to post. I am sorry your friend passed away but what a wonderful post! It sounds like you had a very very good friendship.

I can only tell you from personal experience but it might happen that the grief becomes overpowering later on, maybe days or even weeks. Be kind to yourself and allow yourself to be sad as well but cherish all your lovely memories!

helibee · 30/03/2011 03:33

Scuttle, I am so very sorry to hear about your friend, but you sound like you have so many beautiful memories to cherish. I am glad that you are able to carry on the quilting and you'll be able to think of your friend.

Will be thinking of you in the coming days and weeks. As Gilmore says, grief can come and go in waves. Let yourself feel whatever you do, be that happy or sad. When my mum died we found it helpful to laugh as well as cry and get angry about losing her but also to remember that we were lucky to have her. You sound like you had a truly wonderful friendship.

andenuvathing · 30/03/2011 03:58

Take good care of you.

Both points noted.

Rindercella · 30/03/2011 04:31

Scuttle, I was about to post saying pretty much the same as others here and then I read your update.

I am so sorry to read of your friend's passing. Take comfort in the times you have shared with her, particularly over the past 18 months.

You sound a lovely friend and your last post was just beautiful.

Look after yourself x

iscream · 30/03/2011 05:08

I'm so sorry for your loss Scuttle.

Tortoiseonthehalfshell · 30/03/2011 05:17

Scuttlebutter, I'm so sorry for your loss. You and your friend sound like you had a beautiful friendship, and I hope the memories of that are some comfort to you.

bonkers20 · 30/03/2011 06:15

Gentle hugs.

LoveBeingKnockedUp · 30/03/2011 06:47

Very wise words. X

Sweetpea215 · 30/03/2011 07:13

So sorry for your loss...grief can be a long and difficult road BUT I think it will be helped knowing what a very special relationship you both had.
All the very best to you.

MmeLindt · 30/03/2011 07:28

So sorry for your loss, scuttle.

Cloudbase · 30/03/2011 07:34

I'm so very sorry for your loss. I went through the exact same last year with a very close friend; if she only passed yesterday, you should be able to go and visit her in the Chapel of Rest at the Hospice, or wherever she is moved to, and this should be possible for a few days (depending on when her funeral is). If you weren't able to say goodbye before she passed, it will help to go and do it now - you will be able to see her on your own and say everything that you wanted to.

Again, I am so so sorry, but you will treasure your friendship forever, and I'm sure that somewhere along the way, she will have told her family all that you have done for her.

All my love and strength to you at this awful time for you xxx

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