What to say when things won't get better (terminal illness)

[Andromeda]

Hello dear Hive,

It seems that so many people are seriously ill or  terminally ill in my acquaintance. What do you say to a person who is not going to get better? What do you say to someone who is taking care of a terminally ill person who is also seriously ill themselves? What do you say when you see these people on a semi-regular basis for months or years?

I find it so difficult. I want to show that I care, because I do, but I don't want to make it worse for them. The "get well soon" thing is just not going to work, nor will much optimism for the future. 

I would very much appreciate suggestions. Thank you in advance!

ETA

I help with meals and practical things. I am looking for ideas on what to say. Thank you!

Edited November 19, 2019 by RosemaryAndThyme

[maize]

Something I have always admired about you is ...

How are you feeling today?

That is really tough. I'm here to help however I can.

One if my favorite memories with you is...

I love you.

[BlsdMama]

7 minutes ago, RosemaryAndThyme said:

Hello dear Hive,

It seems that so many people are seriously ill or  terminally ill in my acquaintance. What do you say to a person who is not going to get better? What do you say to someone who is taking care of a terminally ill person who is also seriously ill themselves? What do you say when you see these people on a semi-regular basis for months or years?

I find it so difficult. I want to show that I care, because I do, but I don't want to make it worse for them. The "get well soon" thing is just not going to work, nor will much optimism for the future. 

I would very much appreciate suggestions. Thank you in advance!

ETA

I help with meals and practical things. I am looking for ideas on what to say. Thank you!

 

You say, “I’m so sorry.”

You say, “I love you.”

Knowing I love EB White, a friend once bought me a locket with a little spider that said, “ 'You have been my friend,' replied Charlotte. 'That in itself is a tremendous thing.’ “

Just be a friend. I have a high school friend that has stopped by three times since the diagnosis. It’s been when she was in town anyway and she stops in for 1-2 hours. I love that.

My sister in law texts every month or so to say, “Hey, how are you guys?” She also asks how my doctor appointments go. I think that’s so thoughtful.

People are so very uncomfortable with terminal illness and I think I would be as well. It’s the elephant in the room and the last thing you want to say is the wrong thing. I promise you can never go wrong with either of the two above.

 

 

[fairfarmhand]

You know this already but nothing you can say will help. 

“I’m thinking/praying about you a lot.”

”this is so hard. I love you guys.”

ask the caregiver how they’re handling all this. Ask them what they need. 

And have lots of conversations that don’t revolve around illness. When my fil was dying it seemed like all anyone wanted to talk about was cancer.

[Pawz4me]

This is probably going to be non-helpful, and I absolutely don't mean it to be discouraging. But here goes--

DH has stage IV cancer. We of course know that in all likelihood it will be terminal, but so far we treat it as a chronic illness that is being managed. That's the background for my thoughts.

Often there is no right thing to say. No matter how careful you are, how wise or kind you think your words are, depending on the day and how the person/caregiver is feeling, whatever you say may be the wrong thing.

I'm going to disagree with @BlsdMama to make a point. Saying "I'm so sorry" absolutely drives us up the wall sometimes. It can be a massive downer on a good day when we're (trying) to not even think about cancer (and there have been LOTS of very good days since DH's diagnosis). So . . . yeah, you can indeed go wrong with that. And lots of other things you'd think would be okay. On the cancer board I belong to many people are bothered by people telling them they look good. I mean most people would think that would be an acceptable comment, right? But the people who are bothered by it say they so want to reply "But it's not the outside that has a problem." Anyway, that's a long rambling way of trying to make this point -- I think most people with a terminal illness understand how awkward it is for people to know what to say. Haven't almost all of us BTDT at some point? So they (and their caregivers) tend to be vastly forgiving. Shoot, there are lots of times *I* don't even know what to say to my DH. How can I expect anyone else to know what to say? The only wrong thing to say is . . nothing. And by that I mean avoiding the person. People will absolutely forgive a comment, but it's much harder to forgive complete avoidance.

[wintermom]

That's really hard for you and for them.  You could start by asking them what would be helpful for them at that point in time. Why try to guess. Everyone is different.

Big hugs to you all.

[barnwife]

Other posters have pretty much covered it. When dealing with my dad's terminal illness, words just didn't matter. The standard given by others above (I'm sorry, how are you really doing?, I love you, do you want to cry together?) are what you should stick with.  Frankly, sometimes words weren't necessary at all! Just be there, helping as you can. I also agree that it's good to make sure you talk about things non-illness related. Yes, my dad had terminal cancer. But as hard and huge as that was, it wasn't all my life. I still had 4 young kids to be mom to, was still involved in church, etc...
I am so appreciative of those who have been/continue to be with me through the journey. (FWIW, I just had a chance to visit a friend that I've seen in years. She asked about my grief and held me me while I cried and cried with me...and it's been more than a year since my dad passed. Most people don't ask/talk about it at this point, so felt good to have someone acknowledge that this is still part of my life's journey.)

Also, to you and others struggling with terminal illness (yours or someone you care about), it is hard. Big hugs for anyone who needs one.
 

[G5052]

I was thinking about this related to another issue, but actions mean so very much at a time like this. I've had a lot of difficulties in the last ten years, but I really remember the meals, people who helped with heavy chores, people who had me over for coffee, etc. etc. It's the actions that really stand out in my mind. 

[BlsdMama]

47 minutes ago, Pawz4me said:

This is probably going to be non-helpful, and I absolutely don't mean it to be discouraging. But here goes--

DH has stage IV cancer. We of course know that in all likelihood it will be terminal, but so far we treat it as a chronic illness that is being managed. That's the background for my thoughts.

Often there is no right thing to say. No matter how careful you are, how wise or kind you think your words are, depending on the day and how the person/caregiver is feeling, whatever you say may be the wrong thing.

I'm going to disagree with @BlsdMama to make a point. Saying "I'm so sorry" absolutely drives us up the wall sometimes. It can be a massive downer on a good day when we're (trying) to not even think about cancer (and there have been LOTS of very good days since DH's diagnosis). 

 

This brings up a valid point. Even those of us with the terminal diagnosis need to extend grace as there is no one right thing! I like, “I’m so sorry.” It recognizes how hard it is to deal with on a daily basis. And it’s HARD! I get up in the morning, Life is physically hard, but you try because these are the last months or years you get with these people you love. So you feel the least like doing things and want to the most. Sigh. 

And maybe there is some small, distinguishable difference between a potentially terminal illness and receiving treatment and a terminal illness? I’m not sure, so it’s putting it out there tentatively. ALS has no treatment so I appreciate when people recognize the steady progression is difficult and a bummer. Frankly, there is not a day I don’t think about it.

We were just talking about feelings from the perspective of the person with the illness as compared to the caregiver in another forum. There are plenty of days I don’t mention ALS. There is never a day in which I don’t think about it. I think of it first thing in the morning when I quite literally drag my legs out of bed... and every hard thing after that. 

I will say this: Please recognize it. The conversation shouldn’t revolve around it, but a simple recognition of, “This stinks, how are you?” genuinely said, is so appreciated. Very few people ask and we recognize why - it’s uncomfortable and no one wants to say the wrong thing. Truth is, it is kind to ask anyone how they are doing. And they will probably turn the conversation from themselves after answering. It’s good form. 😉 

 

[Xahm]

I've been told that saying something like "I'm here for you.  If you need to vent, I'm here to listen, but we could talk about your kids or I can tell you a crazy story about my cat, or we could just watch this movie together or read books next to each other, if you want." Is that something that would be welcome, those of you who know?

[fairfarmhand]

2 minutes ago, xahm said:

I've been told that saying something like "I'm here for you.  If you need to vent, I'm here to listen, but we could talk about your kids or I can tell you a crazy story about my cat, or we could just watch this movie together or read books next to each other, if you want." Is that something that would be welcome, those of you who know?

For me, having watched my fil die over 2 years and my mom over the course of 5 years, yes. This would be nice.

[Pen]

8 minutes ago, xahm said:

I've been told that saying something like "I'm here for you.  If you need to vent, I'm here to listen, but we could talk about your kids or I can tell you a crazy story about my cat, or we could just watch this movie together or read books next to each other, if you want." Is that something that would be welcome, those of you who know?

 

That’s true for a relative of mine with a terminal illness.  

[Andromeda]

Thank you so much to all who have replied! I really, truly appreciate your words.

I don't want to be the person who ignores the situation. I especially appreciate the thoughts shared by those who have gone through this as caregivers or are going through it for their own illness or condition. It is so hard. I think that I really am afraid of saying the wrong thing, but I am starting to see that saying the wrong thing sometimes is still better than saying nothing.

I am somewhat close to some of these dear people, but not to others. Some are more of a colleague situation, and I don't want to overstep boundaries or get too deep into their lives. I still want to listen, talk to them, and support in some way if they want it. Thank you all again. Your posts really help.

[RootAnn]

Mine have all been family or close family friends so I always feel comfortable with "I love you." I've shared stuff going on with our family, good, bad, or silly. I've been there to listen to chemo stories and medicine issues, and helped with small inconveniences they are experiencing during my visits (Kleenex box too far away, wanting to move a chair, finding another lip balm when their current one is out, watering plants). Just whatever friends do anyway. The gift of time seems to be what is important--for both of us.

[SKL]

Personally I would not dwell on it but try to just be there, show love and listen.

"How are you doing?"

Then after listening actively, tell them or start a conversation about something interesting and positive to both of you.  What so-and-so is doing, a new invention or whatever.  Even watch a TV show together if that is fun for them.  Maybe bring them an audiobook they would enjoy listening to when you are not there.

"Take care, see ya soon."