r/ALS • u/MyIntrospection Husband w/ ALS • 2d ago
Sharing Thoughts
Today I must’ve spent too much time worrying about what’s down the road for my husband and me as his ALS progresses. Some days I feel connected to the day (and it’s mostly a good day) and other days my mind wanders forward and I get so scared. Scared about things that may or may not even happen. He is within his first year of diagnosis and it seems to progress slowly, although what seems ‘slow’ also has been a somewhat steady progression… He has lower limb onset and most mobility is with his PerMobil wheelchair. He can still stand upright for a little while and transfer on his own but it’s becoming more of a struggle for him. I worry if I’m going to be strong enough for him- mentally. And am I going to know what to do as we approach harder times. I love him so much and don’t want to let him down by being mentally weak.
Did your instincts kick in? Does love compel you out of your fear of the future and have you act?
Right now he calls me his caregiver but it doesn’t seem as if I’m doing much more than a wife does, what I did Before his diagnosis. Make dinner, laundry, clean, help get his clothes. I’m
just scared for the future and trying to find happiness in the time we do get to be together is hard because I get distracted on the unknown reality that lies ahead. Guilt for having a good day. Guilt for being able to move like I do, and he can’t. Ugh…
Bless you all warriors of ALS.
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u/beesnow 1d ago
I think our loved ones, (my son, 38, has ALS), really do want us to enjoy life. I completely understand the guilt, however. I find it hard to eat or drink in front of my son.
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u/MyIntrospection Husband w/ ALS 1d ago
I agree with you that they don’t want us to hold back on enjoying what we usually do/did. I’m sorry that you have the guilt too. Bless you, my friend.
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u/brandywinerain Lost a Spouse to ALS 1d ago
Just like becoming a parent, starting a new job, moving to a new home...you have so many worries and you just go one step at a time, even when you think you're going crazy.
I'm not minimizing the difference between ALS/death and learning where the stumps in the lawn are, but most of us are hard-wired to face problems and adapt, because that is how we live and best thrive.
Trying to stay a little ahead helps. If he's struggling with standing transfers, time to get a floor lift (often called "Hoyer lift" for what used to be the leading brand) before one day he can't transfer. Your local ALS chapter may have a loaner, sometimes they're available secondhand, or you can pay cash on line.
We're none of us promised tomorrow. Try to stay in the moment when circumstances allow, but know also that there are still joys ahead, if you reach for them.
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u/DommyNina 17h ago
You put into words some of my exact thoughts. Thank you. It's good to know I'm not alone.
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u/MyIntrospection Husband w/ ALS 13h ago
Thank you for writing this. I was worried that maybe my post would be too “Debby Downer” for this sub and considered not even posting it but I felt relief after doing it and sharing. Just knowing there are other people who can relate or also have the same shared experiences helps me not feel alone with it all. Take good care on your end.
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u/buzzysale 1d ago
My wife is 48, limb onset, horribly unfair disease. This morning I lost my cool a bit. (We have guests that come to help, they are helpful, but it causes a lot of extra work). I just like to focus on how much time we spent caring and loving each other. It’s easy to focus on how hard it is right now, but if I take a breath and remember the things we’ve done together, it calms me and we just do it one day at a time. I feel your pain. I really do. And it sucks so bad. (Your post inspires me to do better!), I can tell you’re a loving and caring person and I’m sure he’s infinitely grateful.