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mrich96

New member
Joined
May 22, 2016
Messages
2
Reason
CALS
Diagnosis
04/2015
Country
US
State
North Carolina
City
Asheboro
Does anyone else struggling with answering this question? Whether it be your mom, dad, husband, brother, sister, etc.?

This may seem like a strange post but I have been struggling with this lately. I have a wonderful support system with family, church family, and friends, who genuinely care about our situation, but this question is hard for me. Most of the time I answer with "She's in good spirits" or "She's always smiling" mainly because I feel like that's what they really want to hear. They really don't want to hear the truth. They don't really understand the truth about this awful disease. They don't want to hear that she aspirated twice that day, or that it took me 10 minutes to understand that she wanted me to uncover her feet, or that she's lost 50 pounds because she has trouble swallowing and refuses a feeding tube. But in all honesty, she is slowly dying, right in front of us and there is absolutely nothing we can do about it.

But...I'll keep smiling and telling them what they want to hear, because they won't understand and that's ok.

"For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts."
Isaiah 55:8-9
 
Yep I found that really difficult too as I felt exactly the same way - they didn't want to know the truth, they felt polite and right by asking.

Would you mind keeping bible quotes for the religion forum?
 
When my friends began asking my brother how i was doing he would reply "call or go visit her and find out"
Funny brother i have.
 
I usually say horrible...
 
I usually say 'we are getting by' or some version of 'we are taking one day at a time'.
 
I would usually say - a lot worse than last time you asked, as this is a progressive and terminal disease.

They would look at me with big sad puppy dog eyes then find a way to get away from me. NEVER did they respond with - can I come and help out in any way? That's how you know they are just being polite, or are weirdly curious, but they don't actually care in truth.
 
I always said, "It's a progressive disease" without the "getting worse" part since few people had a frame of reference. No one ever asked for more. But if any of your questioners are considering a visit or call, that might encourage it.
 
I get asked that question everyday about Steve. At first I just said " He is doing ok and is taking it well" I am now so tired of the question that ends with " that's great" without anything further being said. I now say he is managing as well as he can with a progressive disease for which there is no cure. I only wish that there was a little more understanding of this disease and everyone we know was not so afraid to get more involved.
 
I let very few people know about my mom's diagnosis to avoid the same pointless interactions. A neighbor of mine who is a nurse and her husband is an orthopedic doctor who was actually my aunt's doctor that referred her to a neurologist to get her ALS diagnosis- I did let them know about my mom's diagnosis because they knew my mom, my aunt, and had a close friend of theirs die from ALS. And even with all that when my neighbor asked how my mom was she would act so stunned when I would tell her like it was. Go figure. Then this past spring when I ran into her she asked how mom was and I told her she passed away in December. Her reaction- pure shock that she had died. Seriously it leaves little hope of anyone in great numbers understanding this horrible disease!
 
I'm sorry. I know it's hard. People just don't know how to ask and some are not up to hearing the answer. You and your mom are in my prayers.
 
I know what they do and don't want to hear but my mom always said "if you aren't ready for the answer don't ask the question" so I am totally honest, if they really didn't want to know they tend not to ask again or they learn after a few times on to....screw em. I'm not here to make them feel comfortable.
 
I am honest as well. He can't speak and every step is a struggle but we are hanging in there...
 
It depended on my state of mind...sometimes it was hanging in there, if you saw him you would know, he would love some company would you like to stop by? Quite polite to snarky but somedays when it was all piling on, snarky was my best.
 
I would tell them exactly how my dad was doing. But, then again my dad never had to use a feeding tube, bi-pap, or other devices like most PALS. Plus, he never lost his voice until the last 24 hours of his life. So, I never really had as graphic details to tell like many others. I would just say things like "Currently he seems to be staying about the same or he is getting weaker everyday. Then I said "He's hanging in there for right now. But, we don't know when that is going to change because this is a terminal disease. I would just lay it out there on the table. Then I said "I'm really proud of dad because he rarely complains and makes the best of each day." Which my dad definitely did.
 
Before this disease I was a very outgoing, social person with many so-called friends. It's not that I blame people for having a life, or for not wanting to see the brutal reality on a weekly basis, because I don't. Truly. This is tough stuff and most just can't deal with it or don't know HOW to deal with it. I'm sure I've been guilty of 'hollow concern' more than once in my adulthood. It's not really hollow concern as much as it is a polite gesture minus the raw sincerity behind it. I don't know if I'm articulating this well or not, but hopefully you get the point. I do know I no longer ask people about their loved one if I don't *really and truly care* about their response.

I have found there are two types of people who ask or inquire during illness; Those who simply inquire to be polite and those who really do care but don't know how to approach the situation. Unfortunately, there are far more in group A than there are in group B. I've also found people are willing to do just about anything to help EXCEPT give you their time. They will stroke a check faster than they'll visit with a PALS or CALS. I actually used that to our advantage towards the end but it was a lame substitute for the human interaction and compassion I so desperately craved. ‎

I guess if I had it to do over I would probably make a 'Caring Bridge' or similar type of account where friends and family could log in, check updates, leave well wishes, etc. I would do weekly or monthly entries in order to keep everyone current. This cuts down on the obligatory 'How is your mother?' question and eliminates the equally dutiful 'She's doing as well as can be expected.' response.‎

A dear friend of mine created his own Caring Bridge shortly after being diagnosed with pancreatic cancer. He died within 64 days of diagnosis but he updated it every day until he was no longer able. Shortly thereafter, his wife took over updating. His entries were descriptive, well stocked with photos (everything from family pics to jars of yellow fluid drained from his abdomen) and very detailed in terms of what people could do to help. It could be something like "Thursday we have an appointment with Dr. X and will be gone most of the day and evening." If someone can stop by and feed the dogs please respond here." Or, 'We have family coming from out of town and could really use help with meal prep. If you can donate a casserole please respond here." More importantly he would put "I am not feeling well due to the chemo, please refrain from calling or stopping by until I update."

And people stepped up to the plate, time and time again. Part of that was probably due to a bit of social pressure in terms of; Mary Smith saw Jill Jones making a chicken casserole so she felt inclined to sign up for the green beans AND cherry pie. Anyway, my friend died three years ago but still to this day folks access his account and leave messages, I'm one of them.

A part of me wishes we had done something similar. I was very bitter at the world in general and didn't ask for help when we really needed it. Most of that, I think, was out of fear of being disappointed if no one bothered to help after making myself vulnerable by asking. Still yet, a bigger part of me knew that (for me personally) at any point in my life, those who I could really depend on and who really care can be counted on one hand, so I limited my interaction accordingly.‎

Although I still believe the casual conversationalist doesn't really care, some people do, and we should allow them the opportunity to express that and/or help when we are in need. Whether or not they step up is ON THEM, not us. But I don't believe anyone should tell people what they want to hear in order to spare them the awkwardness or the painful reality of the situation.
 
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