Working caregiver with young children

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Rachelb

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Joined
Apr 13, 2021
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CALS
Diagnosis
01/2021
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US
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NC
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Clt
My husband and I are new caregivers to his mother who is 72 and diagnosed with ALS in January. We also have 5 children ages 2-12. She is currently on the trilogy 24hrs a day and getting a feeding tube in a few weeks. She is able to shuffle walk and get to the bathroom unassisted. I do the bathing and feeding. But, I also work full time from home. Do other caregivers work full time? At what point did you bring in help? Any advice is helpful.
 

Jrzygrl

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Feb 14, 2017
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705
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Lost a loved one
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08/2014
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NJ
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X
I worked in an office when my husband was first diagnosed. Our kids were in high school and college at that point. I did end up leaving my job to care for him. I would suggest starting to look for help ASAP. Progression can speed up and slow down without much warning. It may become a 24/7 job at some point. Good caregivers are sometimes hard to come by. And from my perspective, the earlier you get someone else involved in the day to day care, the easier it is to have them help in meaningful ways as things progress.

We were blessed with an angel of an aide who was with us for several years. It was the only way I had any kind of break. I don't know what I would have done without her.

This forum is an excellent source of information from people who have walked in your footsteps. Welcome, but sorry you have to be here.
 

affected

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Apr 26, 2013
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13,487
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Lost a loved one
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05/2013
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OZ
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lala land
I agree that starting the process of having help now is good as you can all start getting used to having someone else in the home. You need this to be sustainable, so with 5 kids and a job, you are already needing help I'm sure.
 
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