Nobody told me

[Manhattanite]

that it would hurt this much. I have never experienced pain like this before. It's only 24 hours since my PALS died and there is still so much to come... the burial in 2 days. I don't know how I'm going to go through that. I wish he had asked to be cremated but he wanted a burial instead.

I thought I was out of tears - I cried for a month after diagnosis and then stopped. But now I can't stop crying again and this time it is different. What a cruel process where the grieving started two years ago and it changed and escalated.

I thought I was prepared but nothing prepares you for this. I feel traumatized after finding him on the floor yesterday, it is an image that I can't erase from my mind.

This is the most horrible thing I have had to endure in my life. I know I will overcome it, but right now it just hurts so so bad.

 

[Nikki J]

My heart breaks for you.

Sending you a virtual hug. Please know that every member of this forum is standing by your side virtually, now and in the coming days. It does get better and the horrible images fade to be replaced by memories of happier times

 

[affected]

I just can't tell you how sorry I am - there just are no words.

It was my biggest fear as a CALS and with FTD my Chris was just horrible to me about the possibility of him dying on the floor.

I so feel your pain and anguish - as if ALS wasn't enough, as if FTD wasn't enough.

All I can say is that I feel your pain and I'm here if I can do anything to help.

PM if you need to talk quietly xxxxx

 

[Neilswife]

I am so sorry for the loss of your husband. What happened to him was my worst fear also, so I do understand how you feel about finding him on the floor. Be comforted by the fact you told him how much you loved him. In the end, the only thing that really matters is love and you expressed that love so beautifully to him. Time will make things better, but for now just take care of yourself and give yourself the things you need to heal. The pain of losing a spouse is like no other, just as the love of a spouse is the most beautiful thing in the world. In the coming days, be gentle with yourself and love yourself. You were a wonderful caregiver to him, and now it is time to be a wonderful caregiver to you.

 

[gooseberry]

I too saw my husband on the floor after falling. I had expressed this fear to him and the doctors many times. My husband made a choice to walk and not use his wheelchair. This disease takes so much they have little control over anything. My husband used his control to walk.

I am very sorry your spouse has passed. I hope that, in time, you can reach a place of peace and serenity. Sending you hugs.

 

[Jlynn]

My heart aches for you. Sending you a long, warm hug. "Death leaves a heartache no one can heal, love leaves a memory no one can steal".

 

[lgelb]

You will be able to think about it without crying, I promise. You don't forget, you don't get past, you stay inside the best of it.

When you replay finding him on the floor, remember the voiceover that he went out as he wanted, as he chose, and you supported that, and he loved you for it, and everything.

Best,
Laurie

 

[affected]

One thing I learned was that I had to go through feeling all the horror of the grief. If I tried to hold it back or just push past it, it only hit me harder and worse. I believe we should go back to allowing widows to wear black for at least a year so people know they are in immense pain and they are respected for that pain and they don't have to explain it and can behave however they need.

So don't feel like you should anything - just be in whatever place you are in each day and if it rises and falls and changes that's how it is. If you need to cry every hour that's what you need. If you go numb, or get manic, or want to stay in bed or scream, that's what you need.

No one can grieve for you, so don't listen to anyone who tries to tell you anything about how you should grieve (except Tillie of course coz she is always going to steer you right).

The pain and the whole grief thing is unexplainable in every way, but those of us who have been through to this other side of ALS do get it. You have many friends here for a new kind of support now. xxx

 

[Jrzygrl]

I am so very sorry that you now have the trauma of finding him on the floor in addition to all that goes with living with this horrid disease. The pain must be so raw. I hope that soon you will overcome this and your memories are filled with the love you shared. Be kind to yourself. Hugs.

 

[scaredwifetx]

The wounds we suffer throughout this disease are deep and I can only imagine how bad the grief is when they are gone. Take care of yourself now. Sleep if you want, cry if you want, don't hide the sorrow. It's there and if taken care of the wound will get better even if the scar stays. Most importantly no major decisions until you have had time a little.

Virtual hugs and hands reaching out.

 

[soonerwife]

I can not imagine what this pain feels like. I am so sorry. Be kind to yourself. One foot in front of the other. It has to get better...

 

[Jhill]

You know in your head what the end will be, but when it happens, reality smacks you in the face.

I'm so sorry that you had to find him that way, but the only control he had was in how he would handle this disease.

I wish you comfort in the coming days.

Hugs,
Joan

 

[Staying strong]

I'm so very sorry for your loss.. The coming days and months will be a challenge. But as CALS we all know what a challenge feels like. I think most of us thought we were prepared for " The Day " but how can you be. Stay strong and fall apart when you need to.. sending good thoughts your way.

 

[adrivtham]

oh no! Manhattanite, I can't express how sorry I am for your pain.
The only thing I can say that he is free and whole again.. It is time for healing.
I am sending hugs to you

 

[Jocalyn8]

I am so sorry, much love and hugs,,,,,