The question of 'how is pALS?'

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codyclan

Distinguished member
Joined
Jan 26, 2014
Messages
402
Reason
Lost a loved one
Diagnosis
02/2014
Country
US
State
VA
City
Round Hill
We live in a relatively close-knit, caring community. Our neighbors and church family have been amazing. My pALS only rarely ventures out to church, but I go every week. As wonderful and caring as everyone is, I get the 'How is 'pALS' doing?' multiple times each Sunday and from neighbors during the week. When family calls, they always ask too. They are caring and kind and I don't mind answering, but surely there is a better question or conversation starter. I know they hate to ask the same thing every time but they want to ask about him and don't have a better question. I don't have a better answer, either--'fine', kind of ends any conversation, because I think they really do care, 'getting by' -- works okay, but seems kinda flippant at the same time. 'About the same, thanks for asking' is okay for some weeks, but it is clear he is progressing, not rapidly, but not so slowly as earlier either, so.....

I know if I told one good friend a better question to ask, everyone would do jump on it because it is awkward for all. Any suggestions?

Tracy
 
With progressive fatal diseases it is awkward to ask how someone is doing. They're dying. But going with the one day at a time thing I usually ask; How's today. It is all we really have. Some days are better than others.
Vincent
 
You're fortunate to live in such a community. If I'd had that, the question I would have wanted people to ask would be, "Anything I/we can help you with?" That would open the door to updates but also give you the option to say, "Do you know anyone who knows how to fix...?" etc. or on a more regular basis, "Would you like to come by Thursday night and watch football with..." or whatever he enjoys doing with friends.

With people who were not that close, when they asked the "how is" question, my typical response was, "You know, it's a progressive disease," sometimes tacking on "but we do the best we can with it" or some such.

Best,
Laurie
 
This is such a great topic and question. I agree, rather than a general question of how he is I would prefer "How is he today?" or "Anything new going on?". If it's a close person, they know what's generally going on so I'd rather they just ask how his spirits are on that day. Things change weekly which is partly why they ask, probably worried things have gotten worse, which they usually do. It would be so much better if they made statements instead of questions that I have to answer, such as "I hope he's handling things as best he can". Or "If there's anything I can do, let me know". That's always a favorite of mine.

There's a movie called "Wit" by Mike Nichols about a woman dying of cancer in a research environment. In one monologue she criticizes the staff for entering her room and saying in their bubbly way "How are you today?" when it's obvious she's a deflated, miserable chemo mess. And she jokes about them walking in on her dead, asking how she is today. I think of that when I'm asked about my PALS because the answer is everything from "well he could be better!" to "there are no words...". Really, there's no short answer and I find myself exhausted having to answer it many times when I'm out, wishing I had a better quick answer.

Sometimes they mean "is he still alive?". Those are the people not so close and afraid to find out. So the answer to this problem is how we answer to the question, which for me is that tiresome phrase "he's hanging in there but his spirits are still good". That way they don't have to respond with sympathy. I want to say "please don't ask", since I will obviously come forth with any new information. But I know it's because they care and really don't know what else to say. Perhaps the answer is for them to just ask me if I want to talk about it or tell me it's OK to talk about it or just tell me they're thinking about him.
 
I agree - rather than people asking how a terminally ill person is doing, they should be asking when they can come and give some practical help to you both!

I used to hate being asked this by people who were not all that close. Those who did regularly I would look in the eye every time and say - he is doing worse than last time you asked, he has a progressive and terminal disease. They would get the 'sad eyes' and nod and say, oh yes but I just wanted to ask ... it's all for them, not for you or your PALS that they ask.
So if they are truly caring, get them to put their actions where their mouth is instead.

Otherwise you could start answering - he's doing ok thanks, oh except for the dying thing.
 
CS-- I agree, the phrase 'he's hanging in there, but his spirits are still good', works but is tiresome and I don't want them to respond with sympathy. I do like anything new going on--easier and quicker to address during a church coffee hour. They do care, and that is what makes it so hard.

Laurie, I do prefer when people ask if there is anything they can do-- but still wish there was an easier way to address people's questions.

I will mention some of these ideas to my 'well-connected' friend.
Tracy
 
Tiilie -- I laughed at the 'he's doing ok thanks, oh except for the dying thing.' My sentiments EXACTLY!
T
 
"I think they really do care, 'getting by' -- works okay, but seems kinda flippant at the same time." --Tracy

It's great to have a truly caring community. And you certainly don't want to offend or be a smart-aleck. So I would suggest helping them with formulating their thoughts while encouraging them.

How is he? "Understandably getting a little worse each day. I'm sure he'd love you to visit." OR
"Thanks for asking. You should come over and say 'hi'."
 
Thanks, Mike. You're right--I want to avoid smart -aleck! It really is a caring community. I am still working and as he has increasing difficulty with his hands and arms. He can still eat, just can't prepare a meal by using microwave or opening containers and sandwiches are harder to swallow, so the neighborhood and church have offered to provide three months worth of lunches for him. Someone comes by at 12 each day with a meal. It is wonderful! So I don't want to offend--they really are so very helpful. So I think some of the questions has to do with wanting to know what they should expect when they come by. However, these questions occur during church coffee hour and I want to provide a succinct answer and talk about other things too and it does get wearying to move from group to group and answer the same question over and over. But overall, this is a better problem than the alternative of not having support.
 
Hi Tracy,

When my friend's husband had cancer she started a blog with updates on his general condition and also how their family was doing so that she didn't have to keep repeating the same information to everyone. Her blog also had a private section with a list of things they needed help with and her community signed up to do them -- from helping with rides, to bringing meals, to helping them find a piano (the husband was a composer). I think that her sister managed that logistical side of the site for her. (I know there are programs out there that help with that... unfortunately I don't know their names because it's not relevant in my case.)

Blogging probably wouldn't work for everyone -- not everyone is comfortable writing, or can make the time -- but I think she found that it ultimately saved her time and emotional energy because she wasn't saying the same things over and over. It also gave her a way to let people know how she and her family wanted to be approached without offending any one person. (For example it might give you the opportunity to say that you enjoy going to church and having the opportunity to talk about other things besides the illness, as a way of letting your community know not ask you all about it at that time.)

My mom (PALS) did her own low-tech 'blog': she would write an email update once a month and send it to a small group of people. I know of others with ALS who have followed that approach, too.

It's definitely tough stuff. My mom (PALS) is quite private about her illness, and living a fairly isolated life to begin with. I often get frustrated when people I know don't ask about her, or forget that she's sick. Yesterday I reminded an acquaintance that my mom is sick and he said 'Is it bad?'... umm... yes. But then I also have trouble with 'How is your mom?' I tend to say 'worse than before but better than she will be' which isn't too helpful.

One possible option is to encourage your community to ask how you are doing, too. That gives you the option to bring up your pALS and any changes that affect both of you, or to talk about other things (work, something you read, other family, things you need, etc).

I'm sorry you have to wrestle with these tough questions. I'm glad there's some support for you and your family.

Kat
 
You might consider a caringbridge account. You could even post a weekly update on Saturdays. I believe you can also set it up so there is a place you can put need for help (even just a visit) and people can sign up. Then the conversations might be more meaningful. Hey I saw things were stable this week. Glad to hear it. Or sorry you had a bad week. Or I signed up and will be over on Wednesday
 
Here is a site that is an example of what I mentioned above: Care Calendar Setup & Messaging | Lotsa Helping Hands

I have not personally used this site, so I can't vouch for it. But they appear to be a free service created by a caregiver to help other caregivers let their community know about their needs and current situation. Has any one else used something like this?
 
Some kind of online group really may be a great answer.

I'm sure your church would be happy to make a little announcement, and you could even print a small slip with the address to give to anyone who asks.

Then on a Saturday, post a little update and let people roster to help. There are some great sites like Nikki suggested to do this. It will free you up a bit from answering over and over the same thing and let you enjoy the time at church.
 
Lotsahelpinghands is good for the calendar part. My sister uses it. It appears caringbridge has both? If it does it would be better. On losa an admn can send out emails to all the group and I think I remember an announcement section but from the looks of it caringbridge is more update oriented which seems like the biggest need at he moment?
 
Tracy, I understand the constant, "How is he?" I get that all the time, wherever I go! And wherever my husband goes, it's "How is she?" It used to annoy me when the odd person asked it with jovial enthusiasm and a big smile, but now I remind myself that these people are well meaning, but don't understand what living with a progressive, terminal illness is like.
Charlene
 
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