Q for PALS and CALS - sharing information

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sleepy

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Joined
Dec 4, 2015
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119
Reason
PALS
Diagnosis
01/2016
Country
AUS
State
NSW
City
Armidale
Hi folks - appreciate your thoughts or experiences on how you managed this... we can't be the first ones feeling this...

PALS notices something - legs "feel weird" or a close call that wasn't a fall.

PALS tells CALS. Gotta share the information right? This is what's going on.

CALS hits the metaphorical panic button. We should email the neuro. Maybe the physio can suggest something...

PALS (later) says 'when you react with panic, it makes me reluctant to tell you things. I need you to trust me to know what to escalate and what can wait for next appointment in 3 weeks.'

CALS defends their actions as just wanting to do the right thing and best intentions.

PALS is a little sad that there isn't a 'that must be scary, frustrating, annoying, really freakin scary, did I mention scary for you'. That sharing perceptions immediately triggers the call to action.

What did you do? What did you wish your pals/cals had done?
 
hey sleepy

1. You have only just been diagnosed so your CALS is still in shock and trying to come to terms with what this means. Overreacting is probably a part of this and will level out.

2. In a typical situation - PALS try to stay behind progression, pretending it's not too bad, CALS try to stay ahead, anticipating to avoid crisis. Hence often there is a big gap between where both parties are situated.

3. Your CALS loves you, and with patience and keeping communication open you will learn to work together.

4. CALS feel helpless and want to 'do' something to lessen that feeling. (yep PALS feel at least as, if not more helpless)

What did I do?
I think I said things like - sh!t that must be so scary for you!!!
Then I would research, talk to our health professionals and start anticipatory planning. That's what CALS do. But I did try and listen to my husband and always focus on what was happening with him, and support him.

Often I would gather information to present to him, then ask - what would you like to do? Sometimes it was better to talk to health professionals and have them bring it up at the next appointment so they could talk it through with both of us.

Thanks for sharing, it's so valid!
 
Hi, Sleepy,

I have a little different perspective because neither my husband nor I were really emo sharers before or during ALS. If we said something, it was generally for another reason, though "FYI" was certainly one.

But either way, it's not surprising that a CALS might feel called to respond in a more-than-reflective way, because there is simply so much to do. Like, if you were at work with everyone engaged in frantic activity, and someone came up to you and said, "I just want to share that this is really hard for me," you'd probably be wondering what exactly was expected at this point. And you might therefore say, "Do you need help with that widget display?" But if your co-worker said, "No, I just want you to understand that this is really hard," you'd adjust your next response to something like, "Sorry to hear that. Let me know if I can help."

You can and should be clear with your CALS, just as you are here, as to what you want, but but CALS can't help a PALS with only emotion in the tank. So it is hard, really, not to look for to-do's when stimuli are presented.

As Tillie says, there is adjustment. But however you were as a couple before, there is a new dynamic at play. You will find the balance that fits you best, but I'm afraid that you are forever sharing now as a PALS, not only as a partner.

Best,
Laurie
 
Sleepy, I have been guilty of over reacting and my husband's response to that was just as yours is. We just keep working through it. Your CALS is scared and wants to help. Early on, it's about keeping you safe and not speeding progression. It's about keeping you as you are at any given point. It's about not knowing what to do.

Knowledge and time have helped me. In our case, I'm the one here, reading, researching, arming myself against surprises as best as I can. Often now it's me saying "yes, that's not unusual" and then explaining what I've read, while he wants to hear it from his doctor.

What helped when I was over reacting? My husband said often that if I didn't calm down he couldn't tell me about things. I believed him. As long as everything is said with love, you can work through it. Laurie is right--be clear about what you want/need. If it's just understanding or support, say so. If it's action, say so. We so desperately want and need to do something for you that is's hard not to over react. I like Tillie's response when this happened; perhaps you could share that with your CALS?

All that having been said, sometimes your CALS will be right. Only you can decide whether mitigating something immediately, rather than three weeks from now, is worth the effort. I dragged mine into the clinic between appointments to have his breathing checked and came away with an order for a Trilogy. Just saying...

Ironically, this situation has improved our communication skills, but nothing is easy.

Becky
The Queen of Everything (including making my PALS crazy at times)
 
Hi V,

As Tillie said, it’s still all new to you both and you’re in a period of adjustment in your lives – emotionally, physically, relationship dynamics etc.

There are 2 different elements to your scenario above; his over-reaction, as you saw it and, your expectation of his emotional response.
I’m guessing he feels helpless (not to mention, devastated) seeing his beloved, strong wife struggling and just doesn’t know what to do. Getting the professionals involved to give advice is his first reaction if he feels out of his depth. He is vulnerable too, albeit in a different way to us PALS.

Before diagnosis, would he have empathised with you in a near-miss or taken the piss? I only ask as my hubby did the latter (that suited my personality) so when I did fall, I didn’t get a “that must’ve been scary for you” sentiment. It is very difficult to get the balance right in what constitutes concern, whilst not wanting to exaggerate a CALS’ or PALS’ interpretation/perception of disability.

I also think it’s completely different for (most) male CALS. They’re “meant” to be the strong one rather than the nurturing one, so it may take some getting used to. There’s a big difference in being hands-on with the kids and looking after the person you married.

I know I haven’t really answered your questions V, but my husband wasn’t a “new man” before my diagnosis and, even though now he cooks for the kids & and washes their uniforms, he’s still emotionally conservative. I didn’t expect or want him to change. You will find a status quo in managing the ALS and all it entails – it’ll take time and have hits & misses along the way.

Ells x.
 
As others have said, patience and time are essential for good communication. You could try some active listening techniques like repeating what the other person said and asking open questions about what the other person needs/wants. Communication is a difficult journey without ALS, and a sickness such as this one makes it a bit more of a challenge. Keeping in mind that you're both doing your best is the most important thing to remember in order to avoid squabbles.
 
I have to admit , in this house no one has a filter. Everything is just out there. Steve does get really mad though when the docs ask him questions and he answers in a wishful way and I correct it. For example when he told the doctor he could climb a flight of stairs...I had to say he couldnt step up on a curb. Boy was he mad at me! I would say it is difficult because my pals wants to believe he can still do things. He doesnt want the beast to win. I dont want to believe what I see each day but I prefer not to worry every day so I speak up so he has the tools he needs.
 
Thanks all. You are right. I hear you. It's new and his reaction is understandable. I am probably in denial in part and he would absolutely have taken the piss in the world before ALS. I think we are both finding our feet...
 
goose that really resonates with me. I want to believe that it's just because I'm tired, it's not really a new 'thing'. And it is possible, that some of the time, that's wishful.
 
I try to understand that he doesnt want this...who would? But I feel like I want to do the best by him so he gets everything he needs and we are prepared for the next step. It is a difference in perspective...talking it thru helps a lot. I can tell you I can not cry in front of my husband because he gets very upset that he is causing the pain. It is the diseawe, no one would choose this disease so we muddle thru as best we can. I try to him be wishful and I interject practical when its necessary
 
You are all amazing. Thanks for the perspective.
 
Sleepy maybe you can bring your CALS to this screen and let him read this thread? That may become a really good conversation starter.

Sometimes it can help to also make a bit of a bargain about signals you can give when things get tough in a conversation.

Something like 'if I say "I'm just complaining", then you can know that it's not an emergency, I just want you to listen'. Or a shorter version may be 'if I say "fudge"...

You both have to get your heads and more importantly, your hearts around it all. Working out how to do that together now will prove to be invaluable as time goes on.

You have made the best start by bringing the topic up and opening discussion this way. It will help you, but it is helping every single one of us who reads the thread too.

That's what we call a you beaut bl00dy ripper!
 
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