• Memoriam wall
    • We've created a memoriam wall to remember our friends
    • If you know someone that battled ALS, please add them here

Wishmobbing's boyfriend slipped away

Status
Not open for further replies.

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
727
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
Dear forum friends,

after a mostly good year, a couple of harder months and a final night with lots of music and holding hands my PALS peacefully fell asleep and never woke up again.

In the 13 month after diagnosis he lost a lot, his work (never missed), his ability to move (accepted with stoicism), his voice (though not his ability to communicate), eating real food (the one thing he missed dearly and irreplaceably), his breathing (which caught up with him without complications or hospital stays) and ultimately all of his friends and family because he couldn't take us with him. We had a week of heartwretching goodbyes while he got ready to let go. He still had so much to lose...

There's great comfort in knowing what he never lost, his sense of humor, being at home with me laughing or rolling his eyes at my antics, memories of great trips, watching good movies and series, having almost more friends drop by than he could handle and first and foremost: MUSIC. For what had to happen everything pretty much fell into place.

In a weird way he seemed better equipped than others to deal with the beast and from day one it was all about quality of, not fighting for a long life. He was the Yang to my Ying, we have opposite personalities and I seemed better equipped than others to deal with the beast from my side, conjuring energy and good cheer. His time had come, we'd talked about everything and were ready. Even one more month might have ground us both to bits.

I shared my path with this beautiful soul for 17 years, the last year was very intense and not the worst for it. He never saved a penny for later, he always did what he wanted to do NOW, he worked as little as manageable and when asked about his regrets in life he thought for some time and the only thing he came up with was not having eaten enough burgers. ;)

I myself am doing quite good and am surrounded by the wonderful friends I inherited together with his record collection full of fun memories and great tunes. I enjoy being outside, being free (as I have neither a job nor the urge to get one soon), listening to old radio shows my boyfriend made years ago. What a gift to hear his healthy voice again after I actually forgot how he sounded!

I looked for and found a dream apartment that will be my new home starting November. There's enough time left to find new homes for many of my boyfriend's belongings (I grabbed some of his band shirts for myself, great he was a size S, too ;)). And there's time for seeing friends and talking about what happened and what will be in the future. So far it's been good apart for a hard spell the night and an emotional hangover the day after his funeral. I'm afraid of feeling the void as soon as a new job, a new routine will manifest. I fully expect to drop into a hole at some time and am determined to just go with the flow.

I'm sorry I vanished from the forum some time before the last phase began. I read and learned so much here, this site was my constant companion for months. By the time I imagined I would have needed you all to talk me through it I could already imagine what advise you'd give me and I never felt lost or alone. Thank you for all the support and being the amazing PALS and CALS you are. Know that I will always carry you and your stories in my heart, sending you strength, understanding and comraderie. I surprisingly am very hesitant to be here again. Of all the losses, I most enjoyed losing the monothematic monster of ALS. I feel guilty to leave you all to the struggle but I really need to be back in the world and be there for all the others that lost him, too.

His new home is under a big beech tree with a visitor bench in a remote spot of our favorite cemetery. It's a beautiful area reached by a historic cable car that still feels like a forest and around the time of our anniversary huge rhododendron bushes will bloom a glorious pink.
He poured his remaining energy into a speech for his own funeral and together with songs he picked out that made a beautiful ceremony with many dear people showing up at his grave and later at our home to finish off his bar, look at photos and listen to his records.
I will end with the same words he ended his speech with:

Be nice to each other and don't work so hard!
:)
Wish
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,605
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
I am so sorry for your loss. I am glad you both took an untenable situation and made the absolute best of it. If you do not manage to avoid that hole, know that your family here are holding your hand while you navigate in the dark and are always here to talk, no matter when.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,970
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am so sorry. You have been on my mind recently. Now I know why

He was lucky to have you and I wish you all the best as you start a new journey
 
Last edited:

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,552
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
Wish - I too had wondered where you have been. You were the most amazing CAL to your boyfriend and such a huge support here as well. I wish you all the best as you move forward. You will be missed here, but I do understand. Please know I am here for you anytime. Go forward in peace my friend.

Hugs
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
356
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
Dear Wish, I'm so sorry to hear about the loss of your love. You have been a loving CALS and definitely a positive voice here on the forum. He was fortunate to have you by his side. Such good advice from both of you. His new home sounds peaceful and lovely.

V
 

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
520
Reason
CALS
Diagnosis
11/2011
Country
US
State
PA
Wish, I am so sorry for your loss. What a lovely tribute you have written. I hope for peace for you. Thanks for being such an inspirational CALS to all of us.

Sharon
 

sassy

Active member
Joined
Apr 22, 2018
Messages
73
Reason
CALS
Diagnosis
02/2018
Country
US
State
RI
Thank you for being such an inspiration. Take care of yourself.
 

littlered

Active member
Joined
Mar 20, 2013
Messages
52
Reason
Lost a loved one
Diagnosis
06/2012
Country
US
State
NV
Wish, I'm so sorry for your loss. You were an awesome CALS and the support and humor you provided was invaluable. He was a lucky man to have you by his side.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,986
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
oh Wish your words here will help others for a long time to come. I'm so very sorry for your loss, but you did this with the most amazing grace and energy and beauty. That is going to carry you forward to wherever your life takes you now.

Fly and be free, find all the beauty you can, and know that life is about all the things he knew were important. many hugs and thank you for all you have given here xxx
 

Jlynn

Distinguished member
Joined
Mar 16, 2016
Messages
386
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
NH
You take care of yourself Wish. You are a truly amazing person who gave many here some very helpful and positive advice on top of being an amazing caregiver for your love. You gave your whole self to the cause. Now it's time to take some time for yourself. My sincerest condolences and a super sized hug coming your way. Best to you.
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
572
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
Wish,

Words fail me right now. I am so very sorry for your loss. You were an amazing caregiver to your love. He sounds pretty amazing too.

I too missed you on the forum, but I do understand your absence and your decision not to dwell here any longer. Your wit and energy will be missed. I wish you peace and that you continue living a fabulous life, full of friends, love and good music.

I will raise a glass of German beer to you and your love tonight. Sending big hugs across the ocean.
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
Wish,
Thx for a beautiful description of his moving on.
Peace to you
Your a great person
 

KateEmerson

Distinguished member
Joined
Apr 23, 2016
Messages
491
Reason
Lost a loved one
Diagnosis
09/2013
Country
US
State
MA
Wish,

I am so sorry for your loss of your love. Kate
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,888
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Oh Wish, I had missed you recently. I’m so sorry for your loss. Such a beautiful moving tribute to your boyfriend. I love that he was all about music, humor, and eating burgers. It sounds like I would have enjoyed knowing him. I’m glad he is free of ALS. May he rest in peace.

I understand you not wanting to return here. I’ve enjoyed your sense of humor and fresh approach to things. My CALS and I laughed when you said you installed a button that made the sound of a coffin opening to allow him to signal you when he was done using the toilet.

If you ever want to return here, you’d always be welcome, and I know we would all benefit from your contributions.

Best of luck with your re-entry into the rest of the world.
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,561
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
OK
So sorry for your loss. Be kind to yourself. May peace be with you!
 
Status
Not open for further replies.
Top