Old 07-08-2016, 02:18 AM #1 (permalink)
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Default Parents with ALS-need advice on trying to encourage wife

My wife was diagnosed with ALS in 2013 and she will be turning 35 in November. She is now wheelchair bound and has limited used of her arms. Her speech is slurred and she is starting to use other methods to communicate more. We have three kids 10 year twin boys and 6 year old girl. My wife has decided to go on a ventilator when the time comes. She wants to be here as long as she can for the sake of kids. However, lately she has become depressed because she feels that she isn't a "whole" mom who plays with kids, drives them places, and helps care for them. She had a meltdown a few weeks back when one of our boys wanted to help her with lunch. Then this past Monday, she had a meltdown when our daughter was playing with aunts at a 4th of July barebcue.

I try to encourage her the best i can, but I know deep down I will never know completely understand how she is feeling. I want to help her self-estteem and get her to realize that she is a "whole mom" in that sense that can love and be there for our kids despite her body going downhill.
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Old 07-08-2016, 02:23 AM #2 (permalink)
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Default Re: Parents with ALS-need advice on trying to encourage wife

Geoff, will she take an anti-depression medication? Worked wonders for me. A life-saver, literally.
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Old 07-08-2016, 03:54 AM #3 (permalink)
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Default Re: Parents with ALS-need advice on trying to encourage wife

please be careful about labeling your wife's feelings as 'depressed.' this label can lead too quickly to using drugs that may or may not be the right response.
please consider other possible labels or understandings. what about 'sad,' 'grieving,' 'frustrated,' 'afraid,' and so forth?

when you say 'meltdown,' what emotions was she expressing? you cannot realistically expect your PALS to stay calm all the time, and feeding them pills as the primary means of keeping them calm disrespects their inner emotional processes, imho

what about talking with her a lot more about how she is feeling?
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Old 07-08-2016, 07:39 AM #4 (permalink)
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Default Re: Parents with ALS-need advice on trying to encourage wife

Geoff,

Might she just be having PBA mood swings? Moments of extreme sadness or extreme laughter? Even though I'm taking Sertraline, I still have emotional outbrakes. Just not nearly as frequent as they once were. I can imagine myself having an emotional moment while watching my grandkids play with each other at a family gathering.

Best luck,
Bob
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Old 07-08-2016, 08:38 AM #5 (permalink)
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Default Re: Parents with ALS-need advice on trying to encourage wife

Geoff,
Please speak to her neurologist about this. I take Remeron. It is a antidepressant that helps with sleep, increases the appetite, and is used to treat moderate to severe depression. It helped me when no other one would. That is not to say that I still don't have situational depression that comes and goes but Remeron gave me my life back and I started it long before I had ALS.
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Old 07-08-2016, 11:05 AM #6 (permalink)
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Default Re: Parents with ALS-need advice on trying to encourage wife

Geoff,
I'm sorry to hear about your wife. Have you said just that, what you wrote, to her? Have your kids? You can encourage them to encourage her.

Likewise, can you be more specific about "meltdown?" Anger? Grief? Were the kids upset? How did she/you handle it?

Best,
Laurie
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Old 07-08-2016, 11:38 AM #7 (permalink)
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Default Re: Parents with ALS-need advice on trying to encourage wife

Maybe she needs to talk with other moms with ALS to know she is not alone. I believe there is a facebook group and i read a blog speed4sarah written by a mom with ALS
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Old 07-11-2016, 01:22 AM #8 (permalink)
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Default Re: Parents with ALS-need advice on trying to encourage wife

Geoff,
As a mother with ALS I can tell you that no amount of Meds will take away the hurt and the frustration. I deal with it daily as I try to do all I can for my 5 and 8yr old daughters. It is so hard for others to understand our need to be mom and to not be able to actually do the mom responsibilities. I question myself daily on choosing the trache or not when the time comes(and its quickly coming for me--Drs say 3-4 months). Just today I struggled to hold a friends newborn 8lb baby. In that moment it hit me that I would never be able to hold my daughters children If I was alive. I began to think about all of the things I wouldn't be able to do for them. From the beginning of my diagnosis I was quick to say yes to the trache and vent because I want to be here for my girls. But lately when I'm actually being faced with the decision I'm not so sure about it. As much as I want to be here for them and see them grow I'm not sure of the quality of life I will have and what I can give to them to live this way. Am I being selfish to choose to vent? Would I be more of a burden to them, to my family?
I am probably over sharing, but I share so you can understand from another mother that it's a struggle. A damn hard one!
I am a member of a female only Facebook group and also a private group of mothers with young children and living with ALS. If you think she would be interested let me know.
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