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Brian Flies Free

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Thomas933

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Dec 4, 2018
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12/2018
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Lenore -- We see you because we are all living it. ALS is a disease of loss from the moment it starts. Your friend is unintentionally not respecting or understanding that you have been mourning/celebrating/marking firsts and lasts this whole time.

It's how we interpret it all that makes it ours. You have moved with all of it in the exact, right way because it was as you and Brian decided to do it.

Thank you for sharing.
 

chally

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wv.
Fly free Brian
Thanks lenore
 

wmilo

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Joined
Feb 14, 2018
Messages
38
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Diagnosis
10/2017
Country
US
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Lenore,

Sincere condolences on your loss although also glad that Brian is now free and that you can start to recover.

Thank you for sharing part of your journey. It has encouraged me as a PALS that there is a path through this disease (although it won't be the same path for everyone).

Best regards,
Bill
 

Jhill

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Lenore, I’m so sorry for your loss, but glad it was peaceful. You were a wonderful caregiver to Brian and he felt your love.

Many hugs to you,

Joan
 

wishmobbing

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Dec 5, 2017
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718
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Diagnosis
07/2017
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This marks the day of a new beginning. I'm just so very very sorry Brian can't start over with you.
Thank you for being with him and thank you for telling the tale of two brave lovers.
 

ReginaS

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I have been reading your messages all along. I am so sorry for your loss. Thanks for posting your journey.
 

MarieLaure

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Messages
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It IS all about love!
 

beauty4everyone

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Joined
Jul 5, 2018
Messages
134
Reason
PALS
Diagnosis
04/2018
Country
US
State
Ville
Dear Lenore, I'm so very sorry for your loss. May the loving memories of the life you shared keep him ever close in heart.

Tears and laughter - feelings of relief he's no longer suffering - grief at his passing, and every emotion in between, are all part of being human. There is comfort in giving one's self permission to flow with them. As days pass, the highs and lows eventually even out. New routines replace those that created heartache. Sīnce grief and loss affects each one of us differently, there is no timetable, except yours. You deserve to be kind to yourself.

Regarding "first holidays" , I offer the following:
A few weeks before his birthday, my brother-in-law passed away. On his birthday, the family members and very close friends she'd invited, arrived at their home to celebrate his birthday.

She served his favorite foods and beverages. They all sang "Happy Birthday", and blew out the candles together. She cut his favorite cake and served his favorite ice cream.

As they sat together, everyone was welcome to share their favorite remembrance or funny story about him. She said they all had a lovely time together.

She turned a day of potential grief alone, into one surrounded by loved ones, celebrating his life and friendship. I found that to be a wonderful gift to all who attended.

May Peace be yours in the days to come. B.
 

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Sasha58

Active member
Joined
Jun 17, 2018
Messages
37
Reason
Lost a loved one
Diagnosis
06/2016
Country
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State
Florida
So sorry to hear of Brian's passing...Throughout this journey you have shown so much courage dealing with this alongside your hubby and I know only too well the 'firsts' you speak of! After my Ronald passed I was still letting my daughters know when I was going to be out and when I was going to be home because Ronald could not be left alone for one minute and my daughters and I coordinated our comings and goings with each other. This went on for about two weeks when one of my daughters' gently reminded me I did not have to check with them anymore, and that it was ok to come and go as I pleased! That 'first' really threw me for a loop! I miss him and am still grieving but I really take comfort that he is truly not suffering anymore....
 

Lkaibel

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May 9, 2016
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06/2016
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MN
Ohh, I so hear you Sasha. I went out tonight with a friend and kept thinking “I need to get back”. It was sad and it was good that did NOT need to get back.

Brian continued to be able to control many things with smart home voice type features and to drink water from a special cup/ straw I hooked up. He could be on his own for up to 2 hours but I never liked it and regardless of who was here I was always on alert.

It was actually not a bad day. I absolutely loved going out with my friend. I’ve known her since I was 15 and maybe being with her just reminded me that I will get through this too. I wrote Brian’s obituary and I have done most of the planning for our celebration of Brian on 3/23. We will eat, drink, and play bocce ball.

I also had a firey fit of tears over a beautiful text my brother sent me. It’s intense.

Another note, I will take this thread through until April 1, the end of my leave from work and about a week past the gathering. Then I’ll ask that it be closed so I can start a new “post” thread ( well, there is no post but you know what I mean). This thread is about Brian’s death and the most immediate aftermath. The new thread will be about my journey in going on.

I admit sort of dreading our anniversary. I will try to think of it as the anniversary of my years with a truly wonderful man, something to celebrate and be thankful for until the end of my days.
 

Narrowminded

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Joined
Apr 30, 2016
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2,474
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07/2007
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Lenore I had those same feeling in the first days. Even today sometimes I forget I can stay out. It feels weird.

Sounds like a wonderful celebration you have planned. And yes, please do start a new journal.

Hugs
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
718
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
Not having to go back home on time, not having to make arrangements, was really exhilarating. The first two weeks I was out constantly, meeting friends, talking a lot and being invited graciously. In a way it only felt like my PALS was on vacation someplace else and I was making the most of my time alone.

Kudos for writing the obituary some time before the celebration. It'll be a good thing having all those people in one place. I have a snapshot of the after show party of the funeral. A bunch of friends sitting on our couch and around the dinner table. They look good in black. Some are watching through old photo prints alone or together, some are watching the TV where I set up a slideshow. Every single person has a smile on their face. Makes me happy-sad.
 

Lkaibel

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May 9, 2016
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Diagnosis
06/2016
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State
MN
Within one hour of thevfull four day mark on finding Brian gone, I am up drinking Grand Mariner at 2:00 am having refinanced the mortgage on the home I was on the deed to, but the mortgage was in Brian’s name.

Being approved for that at a lower interest rate than we had gives me an enormous sense of relief. That said, I’m up at 2:00 am drinking and listening to Cool 108 (80’s/90’s radio).

I bought some nice things to wear to the gathering next weekend just because I felt like it. I saw my mom at the nursing home. I made an appointment for a mani pedi I’m looking forward to having on Friday.

I think I deserve an all night unravel. I was just laying on the bed and sobbing on the mattress the ALS Society is picking up Monday.

Everyone is freaked out whenever they know I’m alone. I’m blessed with folks who want to come keep me company. For me anyway though therebis that grieving I can only do alone. Brian lived in my core, all the time. He was a part of each breath I drew.

I have lived over half a century, but never have I lost anyone or anything so important to me. Next is feeling the way forward. Somehow.
 

affected

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All I can honestly say Lenore is that your grief is your grief.

No one else, not even another CALS can know just what Brian was to you, not the way you know. So no one else can know how you need to grieve.

You need to do whatever you need to do, and I find that western culture views the raw emotions of grief very scary. I hope you can find a way to let all those wonderful caring people know that you appreciate them, and that you will take them up on their company and support in all the ways you need. And that you will also need to say no sometimes and do things the way you need and know they will respect and support you in that.

Peace girl - here's the next roller coaster, hold on tight!
 
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