New CALS - totally broken-hearted

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Marnes- you made it through the week. On Monday, did you think you would? Our ability to keep going is amazing. You can face extenuating challenges by doing so in honor of your partner and daughter. I loved seeing that you already inserted some humor into your latest post. It gave me hope. You are already giving back to us.

Tillie-what private group???😿 I want to be a cool kid.
 
As a CALS, I find being even on a low dose anti depressant helps greatly. There is no stigma. As a dr once said to me...there is no need to swim in sorrow when we have these amazing meds that actually work. If you are on the right rx for you, you wont feel different. Just better. And able to do what you need to do.
 
yep Tomswife, they didn't stop me feeling, but they made it bearable.
 
MJT, I did make it through the week, thank you. And I did not think I would. Been fighting panic attacks - the works. At one point I thought it was the looney bin for me. But I have to keep my shit together.

My PALS and I even had a night out together last night. He is still mobile. So we are obviously trying to make the most of that while it lasts. His fortitude and acceptance is incredible. Always in good spirits and has not once complained or asked "why me?". He amazes me. He always approaches hardship like that. One of the many reasons I love him so very much. My anchor.

I remain so terribly sad. I find my time with him so poignant. Especially as I see him decline. It has been quite steep in the last two months. But he is still mobile, breathing, talking, eating, etc.
But I have this eally hardcore case of anticipatory grief. I hate that this is robbing the now, while he is still here and relatively well. Does anyone have any tips on how to fight that? I will kick myself looking back if I don't get a grip on it.

MJT - there is plenty of humour in me. A total clown by nature. Have lost the ability to laugh and joke currently though. Just too sad. I hate that Assholemyotrophic Literal Shithead has extinguished that. But hopefully it will return and I can bring some laughter to you all. Because if we can't laugh, then we're totally f***ed. Glad it gave you hope MJT. I hope my new name for ALS has delivered some hope in lolz too.

Tomswife and Tillie, my counsellor agrees on meds. So I have an appointment with my PCP next week to get that going. I'd drink rabid dog p*** if it took even the slightest edge off this all consuming and persistent pain. Christ on a goddamn bike it's horrendous.

I guess that given the fact we are not even a month into DX, I am still in shock. Really hoping with meds and time some of the edge wears off.

Will join that FB group asap!!!

Thank you all, again, a thousand times over, fellow soldiers. All my love, strength and support, to the moon and back.

Xxx
 
Again, please remember he was only just diagnosed. The shock is real and huge - hence why we did those ice bucket challenges. Diagnosis feels way worse than a bucket of ice dumped on you, but it's a good analogy.
Meds take several weeks to kick in, and if you go that route, you will also be getting over the shock.
That doesn't mean you will feel fine, but it will take the edge off.

Assholemyotrophic Literal Shithead OMG I have to practice saying that out loud, as it will only work if I can ever make it just roll off the tongue.

All your feelings are valid, every single one. Especially that anger at being ripped off. I hope you will find a way to feel it, allow that, but then put it aside for a while to get the stuff done. Things will level a bit, but in the meantime, you can rant here and we will totally get it and not judge you. hugs
 
Thank you Tillie. This is so hard. Xxx
 
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Floored by the enormity of this today and the profound effect this beast is already having on me. Life now is just existence. Bedtime is the only "relief". Because it brings some escape from the persistent, all-consuming and unbearable pain. And I know it's going to be like this for many years if not the rest of my life. What scares me most is how this will affect my 11-year-old daughter. She has already been challenged in life. Seen her mum struggle. And just as she saw me really becoming joyful, I am on the floor again. But much further down. In the pits. I am "strong". I can keep going. But I know I will be just existing at best for the next 5 years at least. Before and after his passing. She will grow up in a sad home with a sad mum. I want to be a bappy mum. Yet I can't. Not with this beast. And this will hurt her. I can see that it already is. She is worried and subdued. That kills me as much as losing my PALS to this beast and the thought of a future without my one great love. And it's a grim truth that nothing can fix. We all know the horror we live as CALS. I have read some threads of past CALS and their ongoing suffering. But they only confirmed what I already knew. This thing is an absolute monster. And us CALS and our PALS don't bear losses. We bear theft. Theft doesn't even cover it. And it's a lifetime of it the way i see it.

I have no hope for any joy ever again. I can't bear music. Other couples. Normal life. Nothing. Nothing since this beast came along.

Sorry. I know this is very dark and a bit of a rant. But there is no sugar coating.

Existing and suffering is not living. But that's what I feel doomed to forever now.
 
As you have stated previously, these are the early days. There is nothing black and white about this experience. Some days I have joy. Other days are bleak and very tedious, but I am in the later stages of caregiving and expect to have bleak and tedious days. Many days are fine. My husband is comfortable.

These are early days. The shock of the diagnosis .....such a terrible shock. But your partner is holding up. Don't let ALS rule you as a couple. Grab each day and find joy! Create the joy! Make a bucket list of what you hope to do and create the joy!

Rant away...you have been robbed. ALS is a thief! Don't let ALS steal your joy!
 
ALS is indeed a thief.
Somewhere in it all, despite that, we create many things that it cannot take.
But for today, you are in a dark place. That is valid.

Can you look at counselling for your daughter? It may help her most, to have someone that will just be there for her, outside the situation.
It won't change you, or what is happening, but may give her the lifeline to find her way through it.

Keep letting it out here.
 
I’m so very sorry. I know what you’re going through; my 40 year old husband was diagnosed in august and we have two young children. In the beginning I cried so much and I cried so easily. Even though it was/is bleak, I’ve found that I’ve been able to push through some of the darkness. I’m just living in the moment, day by day. Surround yourself with those you love. Eat good food (if you can - I lost like 20 lbs after the diagnosis!). Try and find the beauty in every day. Thinking of you,

PS I’m not saying that life is sunshine and rainbows - it’s just … not.

Marie
 

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<insert attempt at humour> Marie it's more like wild storms, then rainbows, then the rumbling starts again </humour>
 
Are you planning a care team? My care for Tom changed rapidly over time. I am retired so i cared for him from dx till January 2023. Then started with part time help. Then increased the help each week this month. I now have someone at night. And most of the day.
I am so sorry you are in so very much pain. My emotions have shut down. If i let myself feel i wont be able to care for him. I do what is needed. I hug Tom all through the day. I tell him i love him many times a day. He asks me for the urinal. :)
Our grandchildren and our daughter are on their way here. They make Tom smile.
 
Thanks again everyone.

Tillie - I will investigate counselling for my little girl.

MarieB425 - I am so very sorry that this is happening to you. 40 is horrifically young. Too cruel.

Tomswife - none of that has been figured out yet. Still such early days. Further complicated by our personal circumstances. Two homes. A child each. Full time jobs. Etc. There is another separate issue complicating things, which we hope will be resolved soon. It's not for this forum.

But as you can imagine, these complex logistics and responsibilities alone are overwhelming. I am not sure how we will manage. I guess we will muddle through somehow. But it's obviously a huge concern. He is mobile still. But that obviously won't last for much longer. We are also keeping it private for the moment, so can't build a support system yet.

I wish we were all under the one roof and I didn't have to work so I could just focus on his care and the kids and the home. But I also wish he didn't have ALS. And as I said before, wish in one hand and shit in the other, and see which fills up faster.

It's an extremely complex and challenging set of circumstances. Really adds to the overwhelm. I get very panicky and overwhelmed thinking about the logistics alone.

But care will be discussed soon with the team and local support organisation. We are not even a month into DX.

I pray for slow progression so we have time to move past certain hurdles and figure things out from there.

I look back now at previous worries that kept me awake at night and on edge by day. They were challenging indeed, many of them. But a teddy bear's picnic in comparison to this.

Amazing. Just two months ago I didn't know of this beast and was blissfully if not smugly happy and in love, and excited about and hopeful for the future. From living the dream to a living nightmare.

Love, strength and support to you all.

So much.

Xxx
 
This is a little out of the topic, but when you are reviewing assets, don't forget to look at the life insurance policies. I have a policy that will pay out early under certain circumstances...for caregiver or health care costs.
 
Hi Marne, your post about your partner touched me badly because is similar to my story.
i'm in Australia , WA but i am from Europe. i came across your post and it made me burst into tears. i am loosing my partner to MND she is only 48, it's horrible, she has deteriorated so quickly in a few months, it breaks my hearth watching her now, she can't speak , she in in a wheelchair and can't move any single part of her body, just in few months. she is dying and has been keep asking me to make her ill (she uses an ipad to communicate ).
I cry every single day, every day is without sense, i don't know how i'll survive this , i think i wont, the pain is unbearable. This time around last year we used to go down the beach and now she is just trying to survive as long as she can. i've been her primary caregiver (on my own,) for nearly 1 year and now she is in home care.
i don't have anyone around to talk to about this or vent ( just a few friends but they can't understand), i am European as i mentioned and she is the reason way i settled down in this country, my only family (i have a brother and my mother back in europe but we dont get along), my best friend, soulmate...we had some many dreams, after covid we wanted to finally go to Europe together. (we have been together for 6 years), im isolating myself from everyone and im angry with everything, including this country.
i reached out to a counselor and she was just helpless, i find more relief on this website. i try to talk to my dad sometimes and it helps ( he passed away many years ago but i hope he can hear me...just starting crying .., he was the only person who could really be empathetic in any sort of difficult situation).
thanks for reading my post.
 
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