Time to reflect

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Jhill

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About the carer part: if anyone here lived close to me, I would offer to help in a heartbeat. I just couldn't emotionally handle it on a constant basis.

I also really miss having Bob here to talk with, but am fortunate to have 2 of my children living with me right now. It takes the edge off the loneliness.

Hugs to all,
Joan
 

Neilswife

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Thank you for starting the thread gooseberry. I feel like many of you. Neil has been gone five months now and the holidays were so hard. Due to our daughter's health, I am still in caregiver mode which is so very, very hard. I just want her to get better because (even though I cared for Neil by myself) and gave him the best care I could, he did not get better. I desperately need our daughter to get better. I too find myself being drawn back to some of the hardest ALS days and playing them over in my head. It is very hard to move on after such a devastating experience and loss, but I am (I think) doing okay for where I am in life. I live with asking myself daily "How can I take the best care of myself today, given where I am" and it seems to be working as best it can, although sometimes I have to remind myself to do this. This road is very hard and I am pretty sure very long., Thank you all for sharing your experiences, as it helps hearing about them.
 

rosec

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I have not been here in about a year I think. It is now almost 15 months since my DH passed. I understand what you mean by " Things I craved when Steve was with us and I felt guilty about, are slowly happening. " The strange thing for me is that I don't crave for those things much anymore. I think part of my craving at that time was because I couldn't do those things due to all the constraints.
I have been seeing a therapist for about an year now, and she has helped me sort through a lot of stuff.
 

gooseberry

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Therapy can be very helpful. Julien and I still go to see one. Its been 2 years since we started and I think that is what got us thru.

Time was such an issue for me. He wanted me to do everything...cooking,cleaning,caring for him,yardwork,groceries,caring for our son on the autism spectrum. There just wasnt any part of me left..
 

gooseberry

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Tonight has been crazy. I got a phone call that Steve'-s uncle is near death. As the 1 yr anniversary of Steve's passing nears, I wonder how much more crap is coming our way. I lost it with the UPS guy today over a package requiring a signature. I thought I had control......maybe not as much as I think.
 

scaredwifetx

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I am so sorry that you are dealing with such loss. I cant find any words of support that seem good enough. Control is hard to find in yourself... when you face battles, that you cant win. One day at a time! You are the Queen of adjusting and you will find your way even through all the crap. Hugs~
 

soonerwife

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Sometimes it is easy to be pushed past our limit. I hope things get easier soon. Sending hugs your way!
 

KatieNBoyd

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I went to the first of 12 classes for Grief at our church.

I am reminded that what Jon and I had was such an amazing gift. I am reminded what a strong, independent, sassy woman I was when we first met and continued to be through our life together. I was never afraid to try new things or to test myself because of his confidence about what I could do.

He kept telling me that I was strong and that I would be just fine. I owe him that. I owe myself that. It doesn't make it easier but it does help me know within my heart he is watching over me and would be proud that I have taken the steps (minor as they are) to take care of myself to be the strong independent sassy woman he was proud of and love as his soulmate. Our puzzle piece of one another.

I know that sometimes there is pain with growth.
 

gooseberry

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The reason I lost it with the UPS person was simple. I ordered the product with a late delivery, double checked with the company and ups, was assured it would work out. When I called the company, then UPS they said it could be delivered Monday while I was at work. They didnt see an issue with delivering while i was at work even though I had to sign for it.In the end, I was so frustrated they couldnt understand this point.. In the end, I had to pay for it to go to an access point. I find when I am tired, my tolerance is very low for poor service.

The holidays were very hard and now with Steves anniversary approaching, Julien is talking about all sorts of things. It goes on for hours on a daily basis. I am glad he is talking but it robs me of my sanity. He doesnt want to talk to a counselor, just me.

I naively thought, this road wouldnt be filled with land mines. But it is.
 

affected

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I found at first I felt that after what I had been through nothing could rattle me because all these 'little' things just weren't important.

After a while I found the 'little things' rattled me harder because ffs can't people realise how simple the little things are and realise there are more important things?

I have never failed to be astounded at how hard grief has been, how deeply through my soul it has penetrated. We don't 'get over' or 'move on'. We do heal, but we never return to what we were, we are left with a huge part amputated and a whole life adjustment to make. Hugs Steph 💜
 

gooseberry

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I think, Tillie, that is what has surprised me most. ... How deep in my soul the grief has rooted. It jumps up on days I am not numb and bites me in the a$$. It is sad and very frustrating. I didnt expect it to be this hard.
 

affected

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I don't think anything prepares us for what the grief afterwards is like, particularly when it was your soul-mate lost. That is not meant to detract from the grief any person feels over losing anyone they love.

Remember Steph the grief is still very fresh. I think in many ways it increases gradually over the first couple of years, even while the intense rawness lessens.

Trying to explain it would be like trying to explain colours to a blind person. You are going to come through the grief, it's just not going to be easy. I must say that having to help Julien grieve would be a mix of blessings sometimes and real burden at others. He is not a burden, but just when your own is nearly more than you can carry ...

Cultures that encourage widows to wear black for at least a year have a much better understanding. I have often wished we had something like this in western society - some way of it being easily identified and accepted that a person who is grieving should be treated with great respect and it should be acknowledged.

In some ways of course I don't want to be treated differently, and yet in other ways I so wish I could magically make certain stuff go away because I don't need to deal with it!

I actually had a nurse the other day in response to me saying I was widowed, ask me how long we had been separated. I said, no I'm a widow. She said, yes, so how long have you been separated for? I had to look her in the eye and say - you don't seem to understand I'm saying my husband died. Oh she said, oh yes, of course...

sigh

more hugs Steph xx
 

peacecomesfromwithin

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I see myself in all of you.

Three months on, and it feels almost like it was yesterday that my mom passed. We were so close - although now, with time to reflect, the real closeness started to fade when she got sick and things got so hard. I'm really starting to grieve for the loss of her before ALS.

I did a crazy thing and held her memorial service on December 23. As I'm her only daughter and she was single, I'm still doing everything. Obituary, organizing the service, paying for everything (she had no insurance or retirement savings), making the photo slideshow for the service (one of the hardest things), writing a million thank you notes, going through her things, acting as personal representative for her estate, and trying to catch up with all of the bills that are late, the work that I've missed, the friends that I no longer feel close to.

It feels like everything takes three times longer than it should and I can't believe how much there still is to do. My lack of motivation is unprecedented. I think I could just lay on the couch for weeks at a time watching TV and drinking wine and not get bored. This is not my personality.

Reading these threads made me cry. Dealing with her estate makes me cry. Waking up in the morning and realizing she's gone makes my stomach drop. Participating in the Women's March on Washington without her makes me feel like I have a hole in my heart.

I know the only remedy is time. I've had people tell me I'm not myself. I just don't know when I will be again.
 

Maryl08

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Thanks for sharing Goose as I'm sure many of us can relate.

It has been a while since I've come here, mostly due to being so busy. No one tells you there is so much to do after someone passes. There is a LOT. I've been going non-stop since my mom passed in November. I think keeping busy has been one of the things keeping me sane though. I'm just hoping I don't burn myself out. There's not a day that goes by that I don't think of my mom. Everything reminds me of her. Sometimes it's happy and sometimes it's painful. Everyone tells me how well I'm doing and I'm not sure what that means.

Lately I've haven't been sleeping well and my mom has been appearing in my dreams. It usually dreams about her post ALS. She would always reassure me that she was ok, she wasn't tired, etc. And I would just look at her smiling face and feel so much pain for what she was going through.

But ALS has also made me appreciate the ordinary days much more. The other night I was driving home from work and it was just a normal day. But then I realized how happy I was that it was just a normal day. Nothing bad had happened. I didn't get a news about death or disease. I felt so much relief. Not sure if anyone else shares the same feelings?
 

Neilswife

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I am sharing many of the same feelings others have shared. I don't know how many times I have thought how I just want the world to stop while I am grieving -- well just the part where things go wrong. It is much harder to deal with things going wrong when you are grieving because something very big is already wrong in your life.

I too have been surprised by just how deep the grief runs (and I think I am handling it as well as I can be).

There is an enormous amount to do when one passes and it seems that every little thing takes forever to get it accomplished. It is just so hard to do these things and these things just take time.

What gets me through is just knowing that this is something I must go through to get to the other side and knowing what my husband wanted for me after he was gone. He had written me a beautiful letter awhile before he passed and in it was his wish for me when he passed. I strive to be able to make it to what he wanted for me because it was something really nice.
 
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