How to release my frustrations...

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Lauras12

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I am a current caregiver for whom was my best friend for over 10 years whom is now my husband for the past week. How do i get past the frustration of the situation. I feel like I'm going to explode in my mind. I have no help. It's just me and him with our 2 dogs and a cat. I feel like I'm going to go crazy at times. He is newly diagnosed for 7 mnths but now we know he has had it for a couple of years. The past 6 mnths he has really declined. I don't know what to do. I feel like i can't do this. But I'm all he has.
 

lgelb

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Hi, Laura, welcome while sorry you are here.

Do I understand that you just got married after a long relationship or ...?

If you can let us know what you need help with the most, we can probably better advise. Are you financially not able to have part-time help? Do you have an extra room where you might be able to offer a housing swap? What capabilities does your PALS have and do you have all the equipment he needs?

In terms of letting it out -- the ALSA has online support groups, and there are general caregiver support groups, not specific to ALS, as well. Many of us continued some kind of pursuit that meant something to us in the wee hours, as an outlet. Texting or talking with a friend can help as kind of an anchor to the "other world." And we are always here....

You are not alone!

Best,
Laurie
 

affected

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Hi Laura and welcome.
For me it was a combination of strategies - being part of this and some very private FB communities where I could talk openly with people who understood me completely.
Seeing a counsellor regularly so I could stop and spend time on what this was doing to me, and work on coping strategies.
Taking an antidepressant when the screaming in my head just wouldn't stop became another key element.

Now saying all that, every day for me was a decision to do this by choice because I loved him. That helped too - I had a choice every single day, and I chose to find a way through.

We will walk this with you.
 

vltsra

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Laura, for a long time I felt that I could not do this. I was angry (sometimes still am) and sad and frustrated. I think I've reached the acceptance point, this is what our lives are now. It took me a while to get to this point.

I will echo what Laurie and Tillie have said. I did start on an antidepressant which helps me be less emotional about the situation. We did hire a caregiver which helps me a lot, but I understand that is not always possible. This forum has been a lifesaver. I've received emotional support, recommendations, and technical information here.

I, too, feel that I am all my husband has. Yes he has friends and a sister but I am his chief caregiver. I'm lucky that he has encouraged me to do things that feed my soul. I also want to give him the best life possible under the circumstances. Yes that involves a lot of sacrifice and I am often exhausted even with a helper. But I love him, and he is still himself even with this horrible disease.

We will give you the support we can on this forum.

V
 
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Lauras12

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Loved one DX
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09/2020
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Hi


Thank you for responding. We were best friends for over 10 years. One of his dying wishes was to Marry me and i said yes. A decision i would make 100 times over. I told him i was here till then end. And i definitely will be. I just get over whelmed and frustrated some days and have no one to talk to about it.

I love him and will be there till the end. Just like i promised.
 

Mary2

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Hi Lauras12....My husband was just diagnosed several weeks ago with ALS and had another diagnosis before this. I have just found this forum and it has been tremendously helpful. The fatigue and anger that I feel can be overwhelming but this forum has given me a community. I hope that you find support and solace here.
 

Lauras12

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Loved one DX
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09/2020
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TX
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Centerville
Thank u for ur response. I hope u find a glimpse of peace in each and every day. I found in the past couple of days that if i go for a short walk with my dog that it helps me regroup so i can go back in and face the situation. I pray his progession is as slow as possible. God bless u both.
 

Lauras12

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09/2020
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US
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TX
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Centerville
I cant thank u enough. God bless us all.
 
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