How to Better Discuss Health/Updates with CALS?

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PALSdottir

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Hello,

I was hoping to ask the community for advice on asking for health/updates from CALS in a way that's least upsetting for CALS, especially for families that are a little bit farther apart and maybe a little bit less open on sensitive subjects.

My mother is the caregiver of my father, diagnosed late last year, and I've been living on the other side of the country (US). I know my mom is doing everything she can and she doesn't want other people doing caregiving for now, but I want to discuss my dad's health and be there for my mom for discussing ideas, problems, solutions, feelings, etc. But I want to do this in a way that's least upsetting for her. I need better strategies of breaking the ice and knowing how to be involved but not invasive, not abrasive.

The past and present routine has been weekly (or more) video calls where health is almost never discussed - everything under the sun but. I like these conversations because it's important to talk about everything else and we all cheer each other up, but I'm afraid we neglect to talk about my dad's health, what's going on, and is there anything I can do, and my mom's emotional well-being, what's going on, and is there anything I can do. I feel like in my family this is harder than it is for other families, at least my husband thinks so. I failed to learn how much my dad's ALS had progressed over the past few months because none of us easily talk about it, and I'm afraid it's my failure as a daughter. My dad and I just don't have a history of discussing feelings or painful subjects, and my dad is showing some dysarthria but he's also kind of always been one to answer in mono-syllables on emotional stuff. On the other hand, recently I've had tearful conversations with my mother, and I don't mind tears, but I don't want to make my mom cry when she's not in the mood, and I don't want to ask about all this when she's not in the mood.

Since it seems like discussing care is avoided during our usual video calls, I've suggested maybe texting my mom to schedule a time to talk health/updates *when she's up for it* - to try to set boundaries so that there's an agreed upon time when she's ready to talk shop. She agreed to it at the time. Is this a good idea or am I overthinking this? What are some ways that extended family have been able to break the ice with CALS in a way that CALS appreciate better?
 

lgelb

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Prescheduled call, occasional asynchronous texts, emails, smoke signals, whatever works best for them. Why not just ask? Give her the white space also to say if she needs to do her own thing for a while, or to assign you a task like Internet research without a lot of preamble. Remind her occasionally of how you can actually help from afar, and she's more likely to circle back on those some time.

I can understand if they want to keep your video calls more chipper. CALS want to be more than just CALS, and your family is about more than ALS. Know that their not keeping you up to date is not a failure on your part -- it is a choice on theirs.

That said, if your mom has cried more than once while talking with you recently, maybe she needs more support in her community, that you could help or encourage her to find. Does their clinic have a social worker, does she have good friends, is she in touch with the ALSA, etc. Maybe she feels isolated and could use a social media refresher. Etc.

Interaction doesn't have to be Q&A. Shoot a nice nature video and send her the link. Make her a mix. Scan that special old photo. Reconnect her with a family friend. You get the idea. End of day, there's only so much a CALS can do about ALS. Keeping your head is the rest.

Best,
Laurie
 

affected

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I would suggest write to your mum and express your feelings and tell her how much you care and want to also respect boundaries.
Open it up to her as to how she might like to see that happen, then you are giving her the control over that.
Of course you have to then accept it if she says they don't want to discuss the health and support strategies with you, which will be hard.

Thank you for being such a caring daughter that you are thinking of everyone in the situation. It must be hard from a distance!
 

PALSdottir

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PALSdottir

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Loved one DX
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11/2019
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CA
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Berkeley
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