Advice needed: How to be a good friend to a friend in need

[Keroin]

I have a friend who has been diagnosed with a degenerative neuro disorder. It has been coming on slowly for about three years but she only started tests about eight months ago and has only now received a verdict. The condition doesn't have a specific name but it is somewhat related to Parkinsons.

Her speech, eyesight, and balance have begun to fail. She will likely be in a wheelchair within a year. Things have started deteriorating rapidly. It's likely she'll need full time care in the near future.

She is around my age (early 40's), has a husband and two young children. They had big plans, which have now all been cancelled. She has always been healthy and active.

When she first told me the news, I froze. I do not handle these sorts of things well. I never know what to say and, actually, I was afraid to speak at all in case I completely broke down. She lives out of town a bit so we have only emailed for several months. But I plan to spend some time with her over the next few weeks, and I am worried.

We've known each other for almost six years. We're good friends. Not super close but close enough. I think she is a wonderful human being.

What should I say or not say? What if I come apart when I'm with her? How can I be a good friend for her? How can I help? These probably sound like silly questions but I am really awful at dealing with this kind of thing - I freeze up, I come across as cold when actually I'm just trying not to melt down.

Thanks.

 

[BiBunny]

Oh, God, Keroin, I'm so sorry. For you and your friend.

I'm useless in these sorts of situations, too, so I have nothing useful to add. Just wanted to say how sorry I am.

 

[Keroin]

Oh, God, Keroin, I'm so sorry. For you and your friend.

I'm useless in these sorts of situations, too, so I have nothing useful to add. Just wanted to say how sorry I am.

Thanks BB, really appreciate that . I hardly feel as if I deserve any well wishes.



*But just a disclaimer to everyone - I'm not trolling for sympathy. I debated starting this thread, in case people thought I was throwing a pity party for myself. I really would love some input.

 

[Sir_Winston54]

....

When she first told me the news, I froze. I do not handle these sorts of things well. I never know what to say and, actually, I was afraid to speak at all in case I completely broke down.

....

I think she is a wonderful human being.

What should I say or not say? What if I come apart when I'm with her? How can I be a good friend for her? How can I help? These probably sound like silly questions but I am really awful at dealing with this kind of thing - I freeze up, I come across as cold when actually I'm just trying not to melt down.

Thanks.

K, perhaps the best thing to say to her, at least to start, is what you just said above, maybe even *before* you spend face time with her. Let her know that you are devastated by what's happening to her, and that you have never known just how to react to things like this, or what to say, and that you hope she'll understand if you occasionally shove a foot in your mouth, even if it's all the way to the small intestine.

A good friend will understand, if she has any heart at all, that sometimes we're just unable to put our deeper feelings into words, no matter how good we are at putting *other* stuff into words. Since I just can't see you having someone you describe as (1) "a wonderful human being," and as (2) a good friend, being a person who has no heart, I would think she'd understand and may even admit that she's found herself in the same situation a time or two.

Good luck to you, and to her.

 

[Dianthus]

Keroin,

I don't tend to weigh in on these things, being no expert at all. I share your awkwardness in these situations.

For what its worth, a relative of mine was diagnosed with ALS and some of the things he found unbearable were statements like 'Its God's will' or 'You must be strong to be sent this; we aren't given more than we can bear'.

Any expression from the heart he was able to take. Things like 'I'm sorry this is happening' sound trite. He didn't mind that. He didn't mind having his hand held.

He needed a safe place to be able to try to make some sense of the awful things that his body was doing to him. Listening was important too.

I acknowledge that everyone is different. Your friend may have a low tolerance for clichés or hate being touched.

I think, perhaps, sharing with her exactly what you said to us: you think she is a wonderful human being and this sucks.

 

[Keroin]

K, perhaps the best thing to say to her, at least to start, is what you just said above, maybe even *before* you spend face time with her. Let her know that you are devastated by what's happening to her, and that you have never known just how to react to things like this, or what to say, and that you hope she'll understand if you occasionally shove a foot in your mouth, even if it's all the way to the small intestine.

This is good. Maybe I will write something. I don't think I could get more than three words out without cracking. Just reading the responses here is difficult.

Good luck to you, and to her.

Thanks, SW. I am keeping my fingers crossed that this doesn't consume her too fast or too completely.

Keroin,

I don't tend to weigh in on these things, being no expert at all. I share your awkwardness in these situations.

For what its worth, a relative of mine was diagnosed with ALS and some of the things he found unbearable were statements like 'Its God's will' or 'You must be strong to be sent this; we aren't given more than we can bear'.

Any expression from the heart he was able to take. Things like 'I'm sorry this is happening' sound trite. He didn't mind that. He didn't mind having his hand held.

He needed a safe place to be able to try to make some sense of the awful things that his body was doing to him. Listening was important too.

I acknowledge that everyone is different. Your friend may have a low tolerance for clichés or hate being touched.

I think, perhaps, sharing with her exactly what you said to us: you think she is a wonderful human being and this sucks.

Thanks Dianthus, this is all great to know. Listening. Safe place. Yes. And I'm not religious and would never say any of those things about Gods will...at least I am not that thoughtless! Whew.

She's always been very strong and independent, so I'm not sure how hard or far to push things. But I think I at least need to make sure she knows I am here if she does need something or someone or just an ear.

 

[Curious_in_Cali]

I am so sorry for what she is facing and the strains that will echo around her. Huge hugs to her and you for standing by her through what will be a big challenge for sure.

That said, I don't know if this will help, but I wanted to share what came to mind when I read your post. When someone close to me was diagnosed terminal, the thing he complained the most was that he hated how people got weird about him dying. Because he was so young and his diagnosis was such a shock, they didn't know what to say and didn't want to "upset" him, so they just didn't call or stop by. He lost 60% of his friends almost immediately, and most others trailed off as the months passed and he got more "sick" looking. That broke his heart as he was a very social and loving guy. He spent more and more time alone with his wife and children until he passed. That said, his funeral was so crowded that most of the people there had to stand, and many were standing outside just to be close even though they were unable to hear. He was so loved, it is just a shame that things like social propriety prevented him feeling that while he was still alive. Maybe it was less about him expecting that they offer him any sort of profound comfort as much as he just wanted to see his friends and talk to them because he didn't have much time left. Not that standing close enough to watch someone you love die is easy, but consider if it was you in that bed...what would you want?

So if I were you, and that was my friend, I would try love her through the act of treating her as though she has not morphed into someone else as much as you can. Make her laugh. Eat cake. Talk politics. Get pedicures. Try to do the things with her that you 2 do together that is "normal"... Adapt it a bit if you must of course, or find some new traditions to start with her. Help her find ways to stay active and vibrant for as long and in as many ways as you can help her think of. If she has to adapt severely, then maybe help her find ways to keep her mind vibrant and active. Maybe a heart driven project? Something to work on and look forward to? Maybe her doc will have suggestions on activities what will help her the most? Or maybe just sit with her and be ready to listen if and when she is ready to talk. Really, just being there will surely mean a lot.

If you need to cry... then tell her. And then cry. Maybe she needs to cry, or have someone to cry with for a moment. Maybe as a starting point, just ask yourself, if that was you, what would you want? The golden rule is a pretty solid one to fall back on when you aren't sure about what to do, I think. Just trust yourself and your love for and friendship with her to guide you. You are a lovely human K, and I am in full confidence that she is in good hands and heart with you.

 

[intothewoods]

God, what a terrible situation.

I would say just try and listen and be yourself. Do you guys have any mutual friends? Maybe talk to each other about what she's needing, her mood, etc.

Is there any treatment at all? How fucking terrible.

 

[Keroin]

I am so sorry for what she is facing and the strains that will echo around her. Huge hugs to her and you for standing by her through what will be a big challenge for sure...

God, what a terrible situation.

I would say just try and listen and be yourself. Do you guys have any mutual friends? Maybe talk to each other about what she's needing, her mood, etc.

Is there any treatment at all? How fucking terrible.

Thanks you guys. It's hard to even respond.

No treatment at all. Unfortunately.

I am carefully considering all of this excellent advice. I am so grateful for all of you.

 

[Netzach]

Take your cues from her. She may have to talk about this all day long with non-friends and just want to talk about something superficial and fun and escape for a while. Just being there is what matters. If you break down you break down. Just do natural you. I bet you can make her smile.

 

[graceanne]

Honestly, you are the only person who knows her, so only you can know what to say and not to say. I will say this, I lost a friend, who got cancer, because of being TOO careful with her. She felt abandoned by me, when all I was doing was trying not to hurt her feelings.

 

[IrisAlthea]

Another vote for just being there, even if it means being awkward, breaking down. It's not easy by any means and if you think it's ok, perhaps tell her that you want to be there for her and and ask her what she wants and needs from you and even what she doesn't want.

I'm sorry you and your friend and her family have to go through this!

 

[Moonlit]

K, perhaps the best thing to say to her, at least to start, is what you just said above, maybe even *before* you spend face time with her. Let her know that you are devastated by what's happening to her, and that you have never known just how to react to things like this, or what to say, and that you hope she'll understand if you occasionally shove a foot in your mouth, even if it's all the way to the small intestine.

A good friend will understand, if she has any heart at all, that sometimes we're just unable to put our deeper feelings into words, no matter how good we are at putting *other* stuff into words. Since I just can't see you having someone you describe as (1) "a wonderful human being," and as (2) a good friend, being a person who has no heart, I would think she'd understand and may even admit that she's found herself in the same situation a time or two.

Good luck to you, and to her.

I so totally agree with this, Keroin....

I have a young friend who went through cancer treatments and the she told me that the one thing that upset her most was when people stopped talking with her. She said she'd rather have someone tell her they don't know what to say than to have them go away at the time in her life when she needed people around the most.

Follow your heart, hon...and like others have said, it's okay to fall apart in front of them. Tell her what you have said here... she'll appreciate it ...and you.

 

[kiwi_submissive]

That is such a difficult situation to be in and I really don't have much advice on how to deal with it as every person and situation is different.

I am a chronic foot in mouth person partly because situations like that make me really uncomfortable until a really close friend had terminal cancer. After one of my usual foot in mouth episodes (to be honest she was laughing) she said that she was sick of people constantly pushing her to talk about her feelings when all she wanted to do was to be treated with a semblance of normality and not have the same conversation with people ten times a day.

After thinking about that I said to her that I did understand where she was coming from and she knew where I was if she wanted or needed to talk. It got the whole uncomfortable thing out the way and I went back to been her friend that would take her out to "get away" sometimes rather than treating her like fine china that would break.

Yes she did call me at 3am in the morning to talk when she couldn't sleep and sometimes she would go weeks without talking about it but it seemed to work for her and it made it easier to deal with for me.

 

[Cattypuss]

If it were me, I'd give her a hug, and say warmly "I'm so sorry to hear your news. I can't even begin to imagine how you must be feeling".

Then she has the opening to TELL you how she is feeling, or to say thank you and change the subject.

I woudn't worry about crying. If you do, you do.

 

[ecstaticsub]

I have a friend dying of breast cancer that has metastasized to her bones and elsewhere. She is having difficulty eating. She's never hungry. A few months ago I was texting with her, she lives about 2 hours away and she said she has had a craving for California rolls but no one would get them for her for a variety of reasons that I forget now. I told her I would get them and drove down and brought her 9 of them. She ate all them during the 2 hours I was able to spend with her before I had to get back to go to work. She was so happy to finally be able to eat.

My point is be open to the little things your friend may need. Make sure they know that you will be there if they need you no matter how small a favor it may seem. Little things mean alot.

 

[midwestyankee]

Share cupcakes, laughs, tears, and beers. (or martinis)

Everything I've ever experienced in this vein tells me that CinC and others have it right: it's much better to stay a friend whose feet are stuck between her teeth than to disappear.

 

[subwannabe]

She probably needs as many hugs as she can get. Try spending as much time with her as you can, while at the same time allowing her to have time with her family as well. I wouldn't ignore her condition while talking but do take your clues from her. Obviously this situation really sucks.

 

[eastern sun]

Chiming in to repeat what others have already said . . . let her lead you where she wants to go. Stay open and honest and don't be afraid to touch her (whether it's a stroke or a hug or whatever is most comfortable between the two of you).

Sometimes people want to grieve and sometimes they want to laugh. She might want you to be the Keroin we all know so well here, in which case the laughter and lightheartedness you are able to give her might be just the thing she needs.

And if you have to shed a few tears while you laugh that only makes it sweeter.

 

[Licia]

deleted for jacking

 

[Chiara_searches]

*But just a disclaimer to everyone - I'm not trolling for sympathy. I debated starting this thread, in case people thought I was throwing a pity party for myself. I really would love some input.

I think the regulars on the board know that you aren't seeking sympathy. I've been largely absent for six or seven months and still know that about you.

I had a similar situation when my mom (really step-mom but that's another story) told me she was having a double mastectomy. But I realized I just needed to ask questions and let her talk out what she needed to say. Hearing her plan, what she was thinking, going through, etc., helped stave off my inclination to have a melt down in front of her...and I think it helped her to have someone listen. So lend an ear. If your friend doesn't need to talk, you can at least make yourself available.

You can still have a melt down; I had mine with The Boyfriend and he again reminded me the best help is to just be there how the person asks or needs you to be.

 

[Licia]

My deepest apologies are offered for my previous outburst, and I only hope that the others here will forgive me.

Keroin

Sometimes all people need is for others to be present. Whenever I was attending to someone who was dying some of the best conversations we had were about the normal parts of life. Cry with them. It's okay to share emotions with one another.

 

[LadyVer]

Just let your friend know you're there for her, mainly just to listen and to offer encouragement.

 

[Keroin]

Hey everyone, just popping in to say thanks. I have read and reread this thread and intend to tailor some individual responses to y'all, I was just on the road all day. Need to recharge the batteries now.

Had a talk with a mutual friend the other night about this topic, and, whew, she says she is feeling exactly the same as I am. She knows our ailing friend better than I do, so she offered a bit of insight. Anyway, the two of us will be paying a visit next week and I'm feeling relieved to know I'll have some support for my support.

And yeah, laughter, I think I can swing that.

Licia, I missed whatever you originally wrote, so don't sweat it, and don't sweat it anyway - I'm generally pretty chilled in my threads.

Again, can't express my gratitude enough!

 

[missgiter]

So sorry to hear this .

You aren't the only one who freezes, and is unable to form the proper, comforting words one needs to hear in a situation like this.

Perhaps it's just me.. but I can't stand in any tragic situation, death, illness etc. The comments flooding in about "In Gods hands" "God's will" "God needs them more" etc. It drives me insane. WE need that person the most. Just period. I tend to shy away from anything like that.

Let her know that you will always be there for her. Hold her hand, give her a hug. And perhaps something that may be comforting is to treat her the SAME. Not like she's fragile and going to break.. and maybe at times, she just wants everything to feel normal, and the same. Like her life isn't spiraling out of control. A good joke, do something that you've always done.. and then be there for the hard times, too.

There really isn't any correct answer ... just be there for her. Let her know that no matter what happens, you'll be there. And be there to be her tie to the normality of the world. Even in our trying times we tend to seek comfort in what we know and what we find normal.