I miss my husband

[rmt]

I've been struggling lately. I miss my husband so much. I want to remember him as he was before the FTD, and then ALS, took him. Every year I made a calendar with pictures from he and I together. Even last year, I was able to make a calendar with good pictures of the two of us. But I knew this year, it was going to have to be different. Even before he passed, he was not himself. He would not have wanted me to remember him that way.

Over the last week, I went through old pictures. From BEFORE. Oh, how wonderful it was to see him as he was before. God I miss that man. It wasn't the ALS that stripped me of my husband, it was the FTD. I love the calendar I made from old pictures. I'm going to send them to his kids and sister too. I think he would would love that.

It made me so happy to see him from before. I've cried so many tears this week, thinking of my amazing husband and how wonderful our life was. I miss him so, so much. I desperately want to dream of him, but so far, I haven't had a single dream of him since he died. Actually, it has been since probably just after he lost his speech. I don't know why he won't come to me in my dreams. I guess I'm not ready. But oh I miss him so much.

 

[Mary2]

Good Morning Robin. I have worked with people with FTD and it is so hard. I can feel how much you miss your husband. The calendars sound wonderful! What a good idea! I hope he does come to you in a dream. Cry as many tears as it takes. He was a great man and it was a good life together. I am thinking about you.

 

[lgelb]

He will be in your dreams at some point, Robin. Meanwhile, as you remember what he was before FTD, those are the years that counted for him, the measure of his own life as he knew it, all that you were to each other.

Still, the ALS/FTD years remain another layer that you can build on for yourself, for the strength and compassion that you showed and can apply to the rest of your life.

 

[KevinM]

I cried when I read your post, Robin, not just because I know my wife and daughter will struggle after I’m gone, but for all families and caregivers for those of us diagnosed. Yes, our path as a pALS is filled with suffering, but I’m more concerned for those we leave, just as I’m sure your husband was before FTD started talking instead of him.

Your feelings and pain are inevitable, but you will come into the light again.

I’m reminded of a story that a fellow pALS told me when he visited me last year. He had seen an episode of the Stephen Colbert show with Keanu Reeves as guest. The conversation came around to death, and Colbert threw out a kind of “gotcha“ question by asking Keanu what he thought happened after death. Keanu thought for a moment, then said “I know we will be missed.” That was so profound and true, no matter what your beliefs may be.

 

[affected]

It can really take a lot of time to get over the trauma of FTD in particular. The tears we cry feel like they will never end, even when they are cathartic.
I love the calendar idea, and making this one from 'before' photos was a brilliant thing.
Hugs to you, this side is not magically easier by any means.

 

[Tomswife]

Robin. I am so sorry for your loss and the pain you are feeling. My prayers are with you even though we have never met.

 

[vltsra]

Dear Robin, I too have been struggling to think of my husband as he was when he was healthy and vibrant. When the nurse took off his bipap mask after he had passed, I told her it was the first time I had seen him without it in 2 years.

I have just returned from a trip, my first in years. While I was there, I watched the moon set over the sea. I remembered the time when we were first dating, we were in Mexico and we watched the moon set together. It was a sweet memory for me, especially since it was before ALS, when he was young and strong. I want to continue to think of him that way.

I hope we can both hold on to the memories of how our husbands were before. Your calendar sounds like a good way to do that.

V

 

[Nikki J]

As someone who lost my sister to ALS almost 7 years ago and my mother to FTD/ ALS before that I can tell you at first the way my mind saw them was in their affected state - as they were at the end. This has gradually faded and now my “default” memory picture is healthy them. It wasn’t a quick process- it took years though I can’t say how many. I am so sorry Robin and V

 

[MJT]

Thank you, Robin, for honoring us with your post. Your husband must have been a remarkable man, and he knew you were there. You have a community here that is sending love. I hope that you start to have more extended periods of peace soon and that you dream about your sweet husband. ❤️

 

[Narrowminded]

Robin, I just came across this post. I am so very sorry for your loss. As Tillie says, this side is not easier by any means. I just past the 4 year mark. It was about 6mo ago I think, it's when I started my "Strange Dream' thread that I saw my husband in my dreams for the first time since he passed. I did not dream about him when he was ill.

I'm sending huge hugs as you navigate this new time in your life. I think the calendar is a wonderful way to remember and honor you husband for who he was, not what FTD/ALS made him into.

Hugs