New CALS - totally broken-hearted

[Marnes77]

Hi everyone. Just starting a thread here since my beloved partner aged just 55 was diagnosed on Thursday the 12th of January. I had a previous thread on the "could this be ALS forum" here: Beginning diagnostic journey, pretty sure it is ALS, crippled with sadness and fear, general advice please

I am only 45. He is the love of my life and we had so many plans and not enough time together yet. I was previously a fulltime working single parent and life was often lonely. I overcame many challenges through sheer grit. When I met him a couple of years ago everything changed. The present became joyful, the future bright. An anchor. A soul mate. A best friend. My everything. Just as things turned good, they have been robbed so cruelly. Not just from me. But from him. Our children. Our future.

I feel so broken by this and am very worried that this anticipatory grief will become complicated grief and ultimately break me and my ability to function, to work and parent etc. I can't fall apart as he needs me and most of all so does my little girl. She is just 11. She has not had the easiest start in life. Just as her mother found happiness she is now falling apart. I am so sad and terrified. We are extra challenged as we live apart still. That was due to change. But it's all a giant mess now. I am a giant mess. Life holds no joy. Please tell me this gets easier.

Struggling to get through each breath. Seeing a counsellor once a week and on some meds. But the pain is unbearable and getting worse. Struggling to parent my little girl (11), run the home, and work. Even showering is a chore. Is this normal? Does this intensity of pain last? He is limb onset and apparently slow progressing. But it offers no comfort. I know many of you know this pain. Any words of advice and support are hugely appreciated please. I saw another CALS describe it as feeling like she was constantly screaming inside. I am the same. I can't bear it.

Apologies that this post is all over the place. I am just so desperate for anything to ease the pain. But I fear nothing will.

 

[affected]

I can identify with a lot of what you are going through.
I was 47 when I met Chris and he was early 50's.
We had been married on our dream property just one year when I realised that things were truly not right.
He was gone before our third anniversary.

I described that screaming.

It can take weeks for the meds to settle in and make a difference so keep good contact with your doctor to ensure you get the right meds at the right levels. Can you also update the diagnose month/year as my memory is crap so it helps at times when answering down the track.

You will find a way through this, but it won't happen in days or maybe even weeks. The first month or two are the most horrific shock, for you both, and you daughter. Firstly, accept that this is fact. After the shock settles you have the reality to get stuck into and that is scary.

You have this place to talk and I can refer you to a very private FB group for spouses of PALS that can allow you to talk some of the deeper things through as you are going to need all the support you can get.
I used a combination of private groups for CALS only for the deep stuff. I used this site as I found it great talking more generally and getting to know PALS as well as CALS. I saw a counsellor regularly. I took meds.
Then I muddled my way through, and it was harder than anything else I've done.
But I found a place of acceptance, while still feeling every single horrible grief thing possible.

We will walk with you. we know that this is as hard as it gets.
We won't sugar coat things, but we will tell you that the CALS here that have lost their PALS are still standing and know you can do this.

 

[Marnes77]

Affected, thank you. I have spotted many of your posts, and they resonate particularly with me. The screaming inside, the feeling robbed, the walking with me. I am glad to have found you. Things so blurry of late I forgot your name. I would love to be referred to the private FB group please. Perhaps you and I can communicate more directly in time too.

I am so sorry for your loss. I understand it completely, as you understand me now. Some light in all the darkness. ❤

My partner was diagnosed just last January 12th, but has had insidious symptoms for about a year. The penny only dropped with me over Christmas, at which point I made a referral with a top neurologist happen almost overnight. Christmas will never be the same again. The horror of that realisation will always mar it.

Thanks again to everyone else who has offered support so far too. KimT in particular.

 

[Nuts]

I am so very very sorry--with the kind of sorrow that only someone who has been through this can understand. My husband was 55 also when he was diagnosed. He's been gone four years, and as I look back I think I made it through his five year journey by focusing on him. Nothing else mattered, but my kids were grown and on their own so that was easier to do.

The best advice I can offer today is to focus on LIVING. You are going to scream the scream that leaves you momentarily unable to draw another breath. You get to do that. Then, at some point, when you can inhale again, try to focus on making as many memories as you can. Focus on letting your little girl know the man who has brought so much into your life. Eventually, you may find that focusing on his death will rob you of the time you do have left with him. Make all the preparations you can (legal, financial, etc), and then let the future take care of the future.

Is it possible that this is even harder than it would be if you were living together? Not being able to see him, hold him, help him every day leaves you with nothing but the idea of loss. I hope you are able to be together soon, as that may help you focus on the life that you have left together. My husband was always the strong one who took care of me, until ALS. Then I was able to return everything he'd done for me--and that made me stronger in many ways. Keeping him alive and comfortable gave me purpose, and it gave me time to prepare, as much as one can ever prepare, for being alone again.

You have come to the right place. It saved so many of us. It gave me the information that I needed to know to stay ahead of ALS. To be prepared. And the support is priceless. The private group Tillie mentioned was also essential for the things that I'd never want anyone who knew us to stumble across--the really painful stuff.

I just read your post about getting him to a neurologist almost overnight. Honey, if you can do that, you can do this. He needs you more than you ever needed him, and you are already doing what he needs you to do.

Much love to you,
Becky

 

[Mary2]

I noticed that Nikki posted a thread for a webinar about talking to children about ALS. I believe it is going to be February 15, 2023 at 7 pm. I wanted to draw your attention to this thread. I may be wrong, but I think if you register then maybe you can get a recording of the webinar if you can't listen at that time. Nikki, am I right about this? So sorry, that your partner has ALS. I am thinking about you and hoping his progression is slow.

 

[Nikki J]

Mary they said they would email a link for a recording of the last webinar they haven’t done it yet. So sorry Marnes

 

[Doing My Best]

Marnes, I'm so very sorry. My husband was diagnosed in February 2020, just in time to absorb the diagnosis and then the Covid lockdown which prevented us from traveling or seeing far-flung friends and family during the months he was still very mobile. Despite that, we have had many really great times and fun moments in the 3 years since diagnosis. I don't mean to be Pollyanna, and it is getting harder to create those moments as time goes on, but don't write off all the things you were planning to do together if there are some you still can. I see from your earlier thread it was limb onset, as was my husband's, and I hope it's a relatively slow progression. Whatever the future, once you can catch your breath after the initial shock I think it helps to find ways to enjoy the moment.

For your daughter, I will mention a book I sent to my daughter to share with my grandchildren, who are 6, 10, and 12. I haven't seen it myself but my daughter liked it and read it to her kids. You might check it out, I don't know if it's appropriate for your situation or not. I got it on Amazon and it's called "Who Cares? (Chan is a Caregiver Collection)" by Chanda Minor-Brigance, whose husband has ALS.

My only other suggestion is to try to do some guided meditation if you can bring yourself to take even 10 minutes every day for a quiet moment. It helps me stay calmer than I would otherwise, and I notice when I don't get around to it things seem harder. There are lots of apps - Calm, Headspace, Waking Up - that help to get started.

 

[affected]

Got you Marnes, you should get a private message soon

 

[Marnes77]

Thanks so much everyone. ❤️

 

[affected]

I hope you got the PM that Shiftkicker sent from me so I can get you more private support Marnes.

 

[Tomswife]

I am so sorry. Your post is heartbreaking. Sometimes I feel like we are surrounded by people who are suffering. Hold and touch and kisd your guy. Its been months since Tom hugged me. Months since he told me he loves me. But I know that his love for me is there. And I hope he sees my love for him in everything I do.
When he was diagnosed I never would have imagined myself accomplishing so much for him.
You dont live all of ALS each day. You meet the day with what needs to be done. One of the most difficult responsibilities is imagining a future where he will need advanced care, whatever the next phase brings, and plan for that. I do that next phase planning without emotion, all thought and no feeling. I need to do this for Tom.
You are much stronger than you think. You will be his partner on this journey and provide compassionate support and love.
Love bears all things.

Hugs.

 

[MJT]

I am writing to give you hope. I could never have imagined being as accepting of my husband's ALS as I am. I was exactly where you are right now and cried so hard for so long that I thought I'd have a heart attack. I remember reading CALS posts right after diagnosis and thinking irrationally that they didn't really understand the gravity of our situation. Keep posting. We are here. 🧡

 

[Marnes77]

Thank you so much everyone. At my office here trying to work and keep my game face on ahead of a big meeting I am chairing, while fighting the tears. I have never felt so sad or disbelieving or overwhelmed or broken or scared. It is horrific. As I said, my life has been challenging and lonely as a working single parent with many obstacles thrown in my path, which I always overcame. Many of those pre-ALS challenges remain. Before this, I would wake up each morning, get hit with those challenges, and then take joy in my beautiful partner and how I was no longer facing them alone anymore. And how those challenges were melting away as I had him to walk with me. Finally someone to share the load with. And I used to tell him that. All the time. I called it my morning Bill Withers moment, in reference to the song "Lovely Day". "Then I look at you, and the world's alright with me..." Now I have all the old challenges, these horrible new challenges, this unbearable grief, and the horror of having to face it all again alone soon, but without him and in all this pain. It all feels too much.

 

[Mary2]

My heart feels your pain and your tears. I can relate to what you say about having to face life's challenges alone again. And the logistics of parenting while holding a job with responsibilities while caregiving are overwhelming.
If he has slow progression you may not have to face the loneliness all again alone so soon.

In my situation there has been time. My husband has been declining since 2016 but we have made memories during this time. He even continued to work until June 2021. Even today my husband is involved in his care ordering supplies and keeping track of doctor's appointments. My husband constantly asks what I am doing to stay active besides caregiving. My husband is very up on what my son is doing and how my son's work and new marriage are going. He is involved in day to day happenings.

Hopefully there will be slow progression. We can hope for this for you and your family. If progression is faster then difficult decisions will need to be made. I don't envy you these decisions. It may be after looking at all the resources and the entire financial situation that you and your partner remain a couple ...as close as ever, but some one else does the actual physical care giving. You and your partner will make these decisions. We are here to support you. Tillie's private group is here to support you. My heart is with you. You will find the strength to move forward. Continue to reach out and let others support you.

 

[Marnes77]

Thanks again everyone. Still such early days for me, but thank the universe for this forum. I think today it has kept me from going under. Particularly today. Dug deep and put my manager hat on and got sh** done. What other choice do we have?

I am going to join the FB support group ASAP. I don't have an account as I dislike social media. But you can forget that now.

The strength that is called on by us is immense. My own situation is particularly challenging with the two homes, two mortgages, co-parenting and demanding day job etc. There is another extremely challenging issue outside of ALS that is further complicating it all. On its own that one is a big challenge. Throw in all this and you have yourself quite the sh**show. Please excuse my language. You could not write this. Unbelievable stuff. But we all have our unique challenges, so I don't want to downplay anyone else's situation by any means.

But I do wish I could just focus on my partner and my baby girl and his child and we were all in the one home and I didn't have to worry about work and paying the bills now, throughout and beyond this journey. But as the saying goes, sh** in one hand and wish in the other, and see which fills up faster.

Love, support and strength to you all. Crying again now. Bloody hell. This is some challenge.

Thank you all so much.