How are you? The Remix.

Jrzygrl

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Hmm, same question as before. I still don't know how to answer.

On Tuesday, it will be 3 months since my DH gained his wings. I think I miss him more as the days pass. Mornings and night are the hardest for me. I used to refer to those times as "the odds-and-ends" of my day. When everyone else was sleeping and I had the quiet house to myself. Time to think. Now, the house is empty and all I think about at those times is how I miss him and what ALS stole from us.

ALS stole from us financially - well into the 6 figures. But that doesn't matter. As I still am working on settling all the financial and legal matters out, we were comfortable. But the cruelest thing it stole was time. TIme to be "US" again. We had both worked hard and saved. The kids were growing up and would soon be off on their own to college or working. We were starting to talk about when we would retire. Relax. Reconnect. Then came the monster.

First, time was spent chasing a diagnosis. "You have a unique case", the doctors would say. Then, time was spent trying to eliminate all other possibilities. Once the other things were ruled out, it became that slow, downhill roll. At times it picked up or slowed down, but never stopped. Until the end.

Now, I have time. But it's so empty. I know he wouldn't want me to waste the life I have, but I don't know what to do or who I even am anymore. I question so many things I did or didn't do.

Friends and family have been great on checking in on me, but I still have this loneliness that is just indescribable. So how am I? I just don't know.
 

ARCG

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My heart goes out to you. My pals was diagnosed a few months after yours and we are on similar paths. I have definitely changed and know that I will feel as you do when the time comes. How could we not be changed. I don’t have any advice really, except that the way we managed the changes and losses one day at a time is probably the way forward after he is gone, the loneliness has started already since he lost his ability to speech. I will be thinking of you and praying you find your way.

Annie
 

lgelb

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I feel much the same, five years in, Jersey. The costs can never be counted and the loneliness I am pretty sure is not going to go away. Still, I can see my husband every day in our son.

Fortunately, no one asks me how I am any more because they know they would get "fine." I don't expect anyone who hasn't lived it to get whatever that really means.

I promise that you will stop hitting rewind as often (some is unavoidable, I think) and find the next fork, as your eyes will begin seeing the road ahead.

Best,
Laurie
 

COSister

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It is the hardest question to answer. But nice that people ask. Not so good. Honest answer. Just will be missing my sister forever.

But keeping busy. Exercise. Being outdoors. Seeing a hawk or an eagle. Think of Kay flying free. All help.

Just over 3 months for us without her. Diagnosed 6 years ago. Dec. 9 a day I will never forget.
 

soonerwife

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I am 8 days away from the second anniversary of my husbands death. I miss him and think about him everyday... I don't think I will ever miss him less. How could I? He was EVERYTHING to me!

Finding that new normal is so weird... although I still don't know what that is supposed to look like. Everything has changed for me. The way I think, the way I feel, what I want.

I think I am doing ok... for such a huge loss. The grief counselor that I talked to helped me walk through the things I was struggling with. Who knows what the future holds for all of us.

Hugs friend!
 

Nuts

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Three months is such a very short time after what you've been through. If you wake and function every day, you are doing well under the circumstances. My response to that question always carries the unspoken "under the circumstances". Matt will always be with me--a part of me. I still need to figure out what that looks like.
 

Jrzygrl

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Thanks to you all for sharing your feelings. I so appreciate all the support this forum has provided me, both before and after.

I do feel that my husband is always with me. He keeps reminding me of that. This morning, as I sat down to have my coffee, I asked Alexa to shuffle a playlist I have of songs that remind me of my DH. I KNOW this song was not in my playlist, but it started playing.


Til we meet again, sweetheart! ❤
 

Narrowminded

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Jrzy, I’m late, but just passed the 1 year mark. From what you are writing I think you are doing as well as any of us. This too is a journey that most of us are still trying to navigate. I know I am. Sending huge hugs
 

affected

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We never 'get over it'. I say I have a 'Chris-shaped hole' in my life. I have learned to create a new a beautiful life after 6 years, but I'd trade it all in a heart beat to have him back instead! We get it.
 

Lkaibel

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We never 'get over it'. I say I have a 'Chris-shaped hole' in my life. I have learned to create a new a beautiful life after 6 years, but I'd trade it all in a heart beat to have him back instead! We get it.
I would trade anything I have to see Brian back again, but nine months to the day since I lost him, still standing. I’m fine... Under the circumstances.
 

Jrzygrl

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Today I went out and got a Christmas grave blanket to put on the spot in the cemetery where my DH's ashes are buried. There is no gravestone yet. DH and I both believed that what is buried is just remains of our physical bodies, that our souls are set free upon death. But somehow, I just felt I needed to do it. I went by myself. Said a prayer asking God to take care of him, cried a little and left.

I feel detached from Christmas, in general. I've bought only a few gifts, made several, but in general, I really don't want to bother. My kids seem to be the same. We're planning a very low-key Christmas Eve with my mom and our normal quiet Christmas morning in our PJs at home, but then we're going on a short vacation. We need the time together. I think I really just want the holidays to be over, so I can try to find some balance.

I know I said this before, when DH was alive, but I just want to feel ordinary again.
 

Lkaibel

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The holidays can bite me. I’m
Mostly ignoring them this year, and I’m okay with that.
 

Narrowminded

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Jrzy I hope your vacation helps. I was away for the holiday and it did me a world of good. I wish you the same.
the kids and I visited Brian’s grave site the day after his wings anniversary. It was hard, but with all of together, we managed.
hugs to you my friend.
 

Jrzygrl

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Just stopping in to say hello give a little update.

We got through the first Christmas. I had a few moments. I think the hardest for me was at Christmas Mass when the soloist sang his favorite Christmas hymn, "O Holy Night". I will always remember him loving that song.

Vacation with the kids was good. Nice to get out of the norm. We went to New Orleans - and for anyone who hasn't been there - add it to your bucket list! Good food, good drinks and good music! Lots to do. I found a new favorite musician in one of the street performers too.

I'm still feeling just "Blah". I feel I'm somewhat directionless right now. The bustle of the holidays is over. Most of the legal/financial stuff is FINALLY done. Now what? I haven't worked in over 3 years. Left to take care of DH in August of 2016. I don't want to go back to my previous job, but I don't know what I DO want to do. Financially, I could afford to not work, but I don't think I want to stay home and stare at the walls either. I joined a gym and have been going. I'm getting out to random things - I made myself a promise right from the start that I'd get our of the house at least once a day and have kept to it. I signed up to take a class at the local community college. But I don't feel that I have a "purpose". I am meeting up with the group that supported DH's clinic to look in to doing some ALS Advocacy work. Maybe something will come of that.

So when people ask how I am, I've just left it at "OK". And I guess that will have to be OK for now.
 

affected

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It really takes a lot of time doesn't it?
Maybe you can find somewhere to volunteer a bit, like the clinic, but maybe there is something you are interested in that is not ALS related.
I think it takes time to just allow things to unfold so far as what direction to take. You may not be ready yet for whatever is going to be great for you, so maybe it just isn't clear now for a reason.

I hope you can just find ways to allow yourself to find many new things as you sort among them for what is actually a direction to take.

So glad you stopped in!
 
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