I'm losing my soulmate, life, love of my life, everything.....

affected

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Antidepressants stopped me feeling like I was constantly screaming inside my head. I could look pretty normal (in a CALS way of normal) but inside it was one long scream.
I still felt everything and it was still freaking hard. But the screaming stopped and that allowed me to continue on every single day.
 

st72

New member
Joined
Jan 5, 2023
Messages
5
Reason
Loved one DX
Diagnosis
03/2022
Country
AU
Hi, your message means so much to me, i'm crying while i'm writing. Like you, i cry every single day and the only person i try to reach out to is my dad who passed many years ago, it helps a little bit but it's so hard to get through every single day.
i come on this website and a few more others where i can find people going through the same(i would say friends). ive seen a counselor recently but, in total honestly, she didn't help me at all, just obvious phrases.....
thanks to everyone for the support and feel free to reach out to me anytime, thanks again
 

affected

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lala land
st, don't let that experience stop you from trying another counsellor.

I am in NSW and received some funding for help through Carers NSW.
I was lucky with the one I went to at Interrelate. I'm not sure what state you are in of course.

For me, it became a time to just focus on how I could build up more skills to cope, especially with the FTD thrown in. My poor counsellor had a crash course in both ALS and FTD, but as he said - he could walk it with me. That meant the most.
 

Nuts

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ST, as I read your heartbreaking thread I don't see what your partner was asking for (ill), but I wonder if it's what I faced with my husband. At one point he was considering driving his chair off our dock and into the lake. I think he may have either tried or done a trial run one day, but turned his chair over in the yard and had to be picked up by our local rescue squad. When he finally opened up he said he was thinking of ending things before he became completely paralyzed and wouldn't be able to do it. We reached an agreement and I eventually took him off the ventilator per his instructions. I don't know what I'd have done if things had gone otherwise. If this is what he is asking of you, please know that in that also, you are not alone. Please try another counselor, and keep coming here. For now, let the future take care of the future--the present is way more than enough to deal with.
 

Tomswife

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Nuts. I am so very sorry.
Tom and I talked. I did fill out the POLST per his wishes, doctor signed. No intervention. If he is approved for a Bipap (testing Friday feb 10) i am not sure he will use it. He may refuse. I just have to live in the present. Lord have mercy.
 

Nuts

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Tomswife, Matt originally said no feeding tube and no vent. Eventually he did both. Some PALS stick to the decision and others change their minds, probably depending on how they read their quality of life at the time. Having the BIPAP will give him time, if he choses it. One of the hardest things for me to accept was that the choice is theirs. Hugs.
 

affected

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st we still don't quite understand what you mean by asking to make her ill?
 

Rhondadale

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Joined
Jan 31, 2023
Messages
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Reason
CALS
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12/2023
Country
US
State
FL
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Lakeplacid
Im so sorry my husband just found out he has ALS November the 30 and he is 54 I to feel where will I fit in he is my only friend and he is all i have I am new here and really would love to talk to everyone thanks for having me,I look at him and wonder how scared he really is ,and I think I am so scared for him and myself
 

affected

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Joined
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Lost a loved one
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05/2013
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lala land
so sorry to welcome you here Rhondadale.
It is very hard to adjust to the reality of this at first. But we are all here with you.
Feel free to talk here, or in the CALS Roll Call thread and also to start your own thread if you have something you want to talk about specifically so we can help best.
 

Mary2

Senior member
Joined
May 1, 2021
Messages
603
Reason
Lost a loved one
Diagnosis
04/2021
Country
US
State
GA
Sorry to welcome you here Rhondadale. This forum has given me plenty of emotional support and good information. I hope you find the same as well. I know your both scared and that is understandable. Please share any thoughts or questions you might have.
 
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affected

Guru status reached
Joined
Apr 26, 2013
Messages
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Reason
Lost a loved one
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05/2013
Country
OZ
State
AU
City
lala land
I agree Mary - I would not have made it as a CALS without this forum. I haven't said this in a while so it's worth saying, we used to say it here a fair bit - lean hard, lean often.
 

Tomswife

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Aug 22, 2022
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08/2022
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Livingston
Rhondadale. Reach out any time for any reason. Ask questions. Under this caregiver topic you can start your own thread so we can follow how you and PALS are doing. Since my husband does not post I do post on his behalf in the general topics and other sections when I have a question that other PALS may answer. I post those topics solely about him and not me as caregiver. The PALS cant respond to you here.
 
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