A Kind but Difficult Question

Status
Not open for further replies.

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,298
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
We have kind friends and I have co-workers who ask how Brian is doing. I give my perky answer. "Great for being almost 9 months out from diagnosis. He uses leg braces and a cane and has some weakness in his hands but he is still walking and doing things".

It is TRUE, my perky answer. I really appreciate we have friends who ask.

I often think, but don't say "Great for a guy with a terminal, debilitating illness" or "Great for a guy who knows it only goes downhill from here". I hate to think that way, but sometimes I just do.

Someone kindly asked me today. I gave my polite reply. Then it popped into my head "Brian joined Dignitas yesterday, told me about it, I support his wishes totally but still bust into tears at the kitchen table." Nope, did not say that part.

Almost none months out, we still can't believe this thing happened. I don't say that either.

How's he doing? Still terminal and making the best of each day.

Not looking for advice, just venting a little on how even the kind things can hurt.
 

JimInVA

Forum Supporter
Senior member
Joined
May 29, 2014
Messages
775
Reason
CALS
Diagnosis
04/2014
Country
US
State
VA
<big hugs!>
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,816
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
hugs from here too

I was mostly kind, but sometimes I admit I needed the stress release of saying things like - "doing pretty good except, well for the dying bit", or "Well he is worse this month, he has a progressive illness that is terminal". People hated me saying things like that.

But remember Lenore, my Chris was gone within 11 months, so I was constantly running and we had losses every single week, so the puppy dog eyes of people who were asking kindly was hard to take as I knew they did not want to know how bad it was.

Even with slow progression, you are dealing will constant loss and with the absolute of the disease. They don't get that. There are no 'better' prognoses with this disease, there are just speeds and orders of progression.

Vent away, it's an awful feeling when someone is suddenly in your face and asking!
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
I personally think that if you havent lived thru als, you have no concept of the challenges, courage, emotional,physical, and mental strength needed for each day.
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,547
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
Oklahoma
I think it bothers me more when I am with my family who I don't see for several months and they don't ask at all... Not sure why that is? They don't want to upset me?
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,816
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
sooner definitely family asking genuinely would be appreciated, coming and being involved would be even better!
 

sunandsea

Distinguished member
Joined
Jun 17, 2016
Messages
142
Reason
Lost a loved one
Diagnosis
11/2014
Country
US
State
VA
I've hesitated asking this but am wondering...how do you respond to a sil that writes and asks how her brother is doing and when I respond- honestly, with perhaps more details than she wanted - she doesn't reply? Nothing. This has happened before and each time I am surprised - like there isn't anything she can reply with? No words of encouragement? Words of support? Something? I shared how hard it is for our kids - she didn't reach out to them either. She lives in another state and visits when in the area so that's something. Her last visit was about 6 months ago and we'll probably see her in the summer again. I'm not sure how I'll reply next time she writes - probably won't be for several months if the past is to be repeated. Maybe just the polite response is best - it's progressing but he's doing well considering.
There's another sibling in another country and we haven't heard from him in 2 years - and the last communication was to tell me about a special diet that could help and the hint that his poor diet probably contributed to his diagnosis. I'm fine with not hearing from him. I just feel badly for my husband. He does have one sibling locally and she's more involved. His mother lives with her and I feel for both of them. I know it's hard for them to see his progression and how he has changed and they care deeply.
My siblings are all in other states but I hear from them on a regular basis with phone calls, texts and emails. They send cards of encouragement and show they care.
We have friends that do the same. Why can't his own family?
Sorry, I've never vented before on the forum (I don't think). I guess just feeling lonely tonight.
Lenore - you're right. Even the kindness can hurt and I don't always know how to answer friends and acquaintances. But I think I agree with you, sooner - ignoring the situation hurts. Especially when it's family.
 

pdcraig

Distinguished member
Joined
Mar 2, 2013
Messages
101
Reason
Lost a loved one
Diagnosis
09/2012
Country
CA
State
ontario
Big hug, Lenore.

Yes, even the kind things can hurt. " As well as we can", that's my stock answer to people who are just being polite. People who genuinely want to know, I tell them how things are honestly. It's kind of funny but it's been about a 50/50 split on people never asking again and getting help from an unexpected source.

Sometimes it catches you completely off guard. I actually burst into tears one morning when a co worker asked me how he was. I had spent the previous evening explaining my PALS options under the MAID program to him. People really don't understand what we try and cope with if they haven't experienced it. If I had a dollar for every time I've bitten my tongue and given the polite answer, I wouldn't be worried about the debt that's racking up these days.

I'm not sure that,"I can't believe this is happening" ever really goes away. Fast progression or slow, there is always something to try and wrap your mind around with this disease.

Paul
 

Jlynn

Distinguished member
Joined
Mar 16, 2016
Messages
386
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
NH
I sometimes feel that some people really don't want to know how my PALS is even when they do ask. It's too sad to speak of. I work for many different people and some for many years. Some ask, some don't. What I can't stand is when someone does ask how he's doing and then don't listen for the answer. I'd rather you not ask at all because it is important to ME.
Sun...shame on those siblings. I am the main caregiver for my younger brother and he and I weren't even that close prior to DX. That's what family's do.
 

Narrowminded

Very helpful member
Joined
Apr 30, 2016
Messages
2,493
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
Lenore - hugs. I know the situation all too well. I too generally answer with doing well for how he is, or something along those lines. Forutnately I have two or three friends I can be compeletely honest with. One is a physician, and what I appreciate most about her, is her second question is always "How is Sue doing?" She genuinely cares about me as well. One is another CALS and we check in once a day with each other. The last is a very dear friend that lives states away, but has helped with Brian in the past. The rest I just give my pat answer and move on. Not worth giving the time of day to because most really don't care. I've learned over the years it's just better to not think about it.

Sun - family, I think sometimes they are worst of all. Half the time I think that they have not accepted what is going on, so they try to distance themselves so they don't have to think about it. When you give them and honest reply, they have to face reality and they don't want to, so they pretend you didn't say anything.

Paul - I feel it too. Somedays that question is like anyone else saying a typical greeting of "How are you?" But not really wanting an answer, just being polite. But if its been a rough day, that question is like a loaded gun. And you are right, always something to wrap your brain around.

I want to share something I shared with my CALS friend. He was able to go to a local symposium on ALS yesterday, he had coverage. Said he didn't really learn anything knew but met some new friends just starting down this path. We were chatting about that and I said, "one day they will wake up and realize they've just been ran over with a Mac truck, the problem is the truck never leaves, it just keep running you over, and over and over". He completely agreed with that assesement.

Hugs to all of you as we deal with this disease and those around us.

Hugs,

Sue
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,298
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
Sun, that thing about diet and someone implying that poor diet causes ALS, just WOW. I think some people have a very hard time with the fact that there is a sea of diseases that simply happen, no known cause. It makes them feel too vulnerable to admit that simple medical fact. Many, many people with ALS have lead exceptionally healthy and fit lives - Brian has.

I AM grateful that people ask. I even feel bad for them because I know that they would never know what to do with my more up front responses. I think in terms of annoyance/upset level the thing that has grabbed me most in these past none months was a friend who saw fit to announce Brian's diagnosis at a party in a room full of people.

The reply is always awkward, though. I mean here we are in the 21st Century talking about a condition for which there is no meaningful treatment. Ten years ago, a friend's 5 year old child survived Nueroblastoma, a rare childhood nervous system cancer. His treatments were wretched and he was diagnosed at Stage 4, with a 10% chance of survival (they stage that cancer a little differently). He he is today, a teenager and it is wonderful. ALS? Plan your funeral, it's not even a conversation.

I don't mean to belittle cancer. On the other side of that fence, I have seen at least three other people, two in their 30's get it and die in the ten years since Eli's hard - won survival.. At least though it has a hope of survival, and if I was replying to "how is he doing" on that, maybe we could talk hope.

Sooner, I am sorry for the family who ignores the situation. That's a pretty cowardly response to something you don't know how to handle. I can definitely see the frustration of people who ask but then ignore or act like you never answered, too.

Paul and Goose, so true. The shock never goes away, and no one else gets it. Being a CALS is one of the most unique experiences I have had.
 

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
501
Reason
CALS
Diagnosis
11/2011
Country
US
State
PA
I agree that many of the people who ask how my PALS is doing really don't want the true answer.

When Frank's siblings call him, he always tells them that he is doing good- sometimes even great. I don't know whether this is denial or that he just doesn't want them to worry. They all live very far from us in other states so they don't get to see him much. His sister asked me how he was doing and I gave her the truthful response. She told me I was very pessimistic. So now I stick to the fake reply: "He's doing OK".

Sharon
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
529
Reason
PALS
Diagnosis
05/2014
Country
CA
State
Ontario
I hate hearing people use the term " Terminal Disease " it brings up thoughts that don't need to be brought up. Life is terminal and that is what is going to happen to all of us, I have outlived many of my co workers and friends who were thought to be healthy, Time is terminal for all.

Al
 

Diane H

Senior member
Joined
Sep 28, 2013
Messages
636
Reason
PALS
Diagnosis
11/1985
Country
US
State
Indiana
I despise the "blame the victim” advice I sometimes get. They are doing it for themselves, saying "I will never be in your position because I would DO something about it." They are in denial and they aren't even sick! But they talk about diet, exersize, vitamins, herbs, supplements, massage, accupuncture, chelation, meditation, and on and on. Not being religious, the prayer circles irritate me most of all. How about a brownie circle instead? Or maybe actually doing something like a bit of housework or cooking or shaving my legs??? Or at least ask me if I want their prayers rather than use their religious beliefs to make themselves feel good.

As for the questions about how I am doing, my slow progression hasn't given me opportunities to slap them upside the head with the brutal realities of what most people experience with ALS, but I certainly wouldn't spare them the truth. They may not react, but they will hear the truth and just maybe they will "get it".
 

sunandsea

Distinguished member
Joined
Jun 17, 2016
Messages
142
Reason
Lost a loved one
Diagnosis
11/2014
Country
US
State
VA
Lenore, I think you are right - some feel vulnerable to the uncertainty of this disease. It appeared in our family with no warning and I think my in-laws were just shocked and my bil was looking for a reason. He lives so far away and has some extreme diet preferences we don't share - I think diet just seemed to be a reason he could latch on to. The kicker is that my husband has been the healthiest and most health-conscious of all of his siblings - until als struck.
Sue - you're right as well. To reply is to acknowledge and accept it. I think they just don't know what to say.
I try really hard to not find fault and criticize. Sometimes it is just so hard. I so appreciate those who ask and want to help and really listen to the answer. I think we have all learned who can handle what and how much. I guess I'm still learning. I have teared up in response more than once when someone genuinely wanted to know how my PALS was doing but also how my children were doing.
This disease touches everybody in some fashion. I know I need to remember his family is probably hurting more than I realize.
 
Status
Not open for further replies.
Top