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

[st72]

Hi,
my partner was diagnosed with Als in march, she is 48, her mum passed at the age of 43 when she was 17 looking after her along with her dad. The trauma of that loss and the fear of getting that illness has been there for all these years and now its happening to her. she has deteriorated very quickly and now is in a wheelchair, she has lost everything, speech,...totally disabled. ive been the main caregiver on my own since this started and now i feel completely lost, scared, burnout. i dont have any purpose in life, any drive, any dream, she is all my life, the love of my life, i don't have my family around ( im european and we are in Australia, she is Australian) she is the only thing i have in life and she is going. Please im just looking for some support from this community ( going through the same). I saw a councilor recently but it didn't help, i think that just people like me, experiencing that horrible disease and situation can understand. Hearing and sharing our stories , how you cope and how you get through it day by day would help me. She hasn't much left, i'm devastated and i'm already experiencing bereavement.
Thanks

 

[lgelb]

Very sorry to hear about your partner, ST. It is only natural to start grieving before you have to -- it is a form of self-protection and a softer landing.

One way some of us have coped and found a purpose is by figuring or finding out what our PALS' bucket list is, however humble, and making it flesh day by day. There is often some experience, co-creation, or choice that will still mean something to both of you, and will help sustain you in the years to come. It might be ten minutes watching the birds, or revisiting a favorite film, or reflecting on the life you have had together. To the extent that she can go out and experience the world, those times are worth crafting as well. I still remember my husband's last venue event, eight years ago.

At the same time, when she is asleep, I would try to pursue something that you care about for yourself , from helping others or a course to a professional activity. It is not just to feel like yourself, but to have a frame of reference, if that makes sense. There is life now and later, and she will always be with you.

Best,
Laurie

 

[affected]

So sorry ST, it is a wicked disease.
When I was caring for my husband I had 3 main supports - I saw a counsellor regularly (once or twice won't help), Carers NSW and MND NSW helped cover this for me. I took an antidepressant daily. And lastly, I talked to other CALS and PALS online daily.

It was still the hardest thing I've ever done and I want to acknowledge that for you as well.
This sucks, but we will walk it with you.

 

[Mary2]

I am so sorry you are going through this loss. I am a caregiver to my husband. We both take antidepressants. We watch movies together and listen to audio books.

I changed his room around so I sit closer to him and his wheelchair while we watch tv. We both like this better. I like sitting beside him when he is in bed for the evening.

Some days I just let him sit at the computer and we have little interaction. This is because the caretaking tasks
bore me silly and I need a break and so I will sit and read or nap. I grieve during these times and wonder what my life will be like when I am a widow. I have friends who are widows, so I know there is life yet to be lived. The question is how.

It is a longer good bye than some couples are able to share and I try and appreciate this. I read this forum a lot and a womens' fitness support group blog. I try to go out once a week to see friends. I do have a gym membership and get there once every 10 days.

Again, I am sorry you and your partner are living this disease. This is a good forum and I have posted a bunch here. The people on the forum are very helpful, informative and caring. Please feel welcomed here because you are welcomed here.

 

[st72]

thank you very much, i really appreciate your support, i'm crying out while i'm writing this reply, thanks a lot.

 

[MJT]

st72- I am so happy you posted here. I'm a caregiver to my husband. Of course, you are grieving, and of course, you are devastated. You are most likely exhausted as well. I am on an anti-depressant and see a therapist. An anti-depressant doesn't take away sadness or create happiness but helps alleviate the desperation you are experiencing. I would also encourage you to take the time to find a therapist that you like. I have been at the exact place you are now and have to fight hard not to go there again. Headspace is an app that has 12-minute meditations. You might consider trying that as well.

Your sweet wife wants to know that you will continue living after she passes away. That can be your motivation to get help. I hope that you can find peace for a minute or even an hour. I am sending much love.

 

[affected]

What the antidepressant did for me was stop me feeling like I was just constantly screaming inside.
I still felt everything, but I was able to cope with those feelings. Just.

 

[Tomswife]

St72. I am so very sorry for the pain you are experiencing. Feel free to reach out to this forum anytime. You are in my thoughts and prayers. ALS is horrific. FALS is inconceivable.
Sending hug.

 

[st72]

Thanks everyone for the support and nice words, my partner has started asking me to help her ill, I feel gutted and sad, i don't really know how to go ahead it's so hurtbreaking, i know you all have been going through the same, please a bit of support would be really appreciated.

 

[lgelb]

I'm sorry, not understanding "asking me to help her ill?"

 

[affected]

If you can let us know what that means we can try and help.
I hope you are not limited in how many messages you can send as you obviously need support just now.

 

[Mary2]

st72 I am not sure what your partner is requesting from you at this time. I know you mentioned that the ALS has progressed rapidly. I am sorry this has gone so quickly. My thoughts are with you and your partner.

 

[MJT]

Did you mean that she wants help writing a will? If so, we can help you tackle the most critical aspects.

 

[thematrixisreal]

Hey I'm very sorry for what you are going through. There are rivers of us who 'right now' are experiencing the exact same thing. Unbelievable isn't it? An entire new world that I was unaware of up until early 2022. I was in shock at first once hearing about my family member's diagnosis. Then the intense researching phase became exhausting and overwhelming. There were no answers and a lot of scary stuff you wouldn't wish on your worst enemy.

For the first time in my life depression and anxiety had become way too much. Counseling.. meh... no help whatsoever. ALS forums... helpful and times, but usually made it worse actually. There was no place to find the answers I was looking for. I decided (not a choice really) to go on anti-anxiety medication and right away I felt a difference. Not back to normal, just not in the daily hell I was experiencing. Today life is manageable. I consider getting through each day an achievement. I savor every moment that I have together and we make the most of it. Life isn't the same as before but there is endless love, enjoyment and memories to be made.

It may not feel like it but you will get through it. Though you will not be the same person as you were before this journey started. You are a true hero to your partner and her family and friends. Years from now and as time passes, you'll understand what you had undergone and realize your super human strengths while easily getting through conflict and crisis that would break most people. God bless everyone here. The bravest and strongest individuals on the planet.

 

[Bestfriends14]

Hi ST,

My husband is just 50 and has had this beast for many years. Recently, his progression has galloped ahead, and he is totally dependent and very difficult to understand. He used to have a big, booming voice, and that's now been replaced by whispery, slurred speech. He, like your wife for you, is my only family. I'm not sure where in this world I'll be able to fit once he's gone, and that frightens me.

After reading that so many CALS and PALS are on antidepressants, this could be something to consider. For me, I think I'll reach out to my gp today. I can no longer handle crying day and night; I must get some help.