DH has ALS (Lou Gehrig's disease)

[krcit]

I am so sorry for your loss.

 

[shancan911]

Thoughts and prayers to you and your family. I'm glad you were able to write your feelings to us. As you found, aninimity is great for difficult conversations. I have to say, and I believe I echo other Dissers, you feel like family to us. I hope we have been able to carry some of your burden, and we will gladly continue. As others have said, please take care of yourself. Come back to us as you are able.

 

[teskak]

I have been lurking, but feeling your pain for a while.

One thing I did after my father passed (thankfully quickly from pneumonia rather than slowly with mesothelioma - a type of very nasty lung cancer) was to take my daughter away on a retreat for a few days where nobody knows you or your story.

I was tired from the number of people who, while they said the "is there anything I can do to help" really meant - "tell me all about it, I wanna know" while offering nothing. Or otherwise just offered the same general comments which did nothing for the pain in my soul.

On the retreat I did not have to speak to anybody, I could just be quiet, allow my body to heal and start to process how my life had changed. Nothing fancy, just a bit of time out from the world for a while.

 

[quasar4legs]

Susan, so sorry to hear that Jim has passed on. Wishing you peace and healing.

Thinking of you.

Trish

 

[kimis]

HI Elfstar! How are you doing? I totally understand what you said about being grateful for seeing Jim after he had passed. When my mom (my bestfriend) had passed from small cell lung cancer she had already had parkinsons disease for years. The minute she passed her face went back to the pre-parkinsons days. I had actually forgotten how she looked before the parkinsons disease. She looked so peaceful in her passing. I too am so grateful for the chance to see her after her passing. That is the picture of her I remember not the suffering face. I hope you continue to take it one day at a time and take care of yourself. You are in my prayers.

 

[minniebeth]

Elfstar,
I have been following your thread from the start, and even though I've never posted, you, Jim and your families have been in my prayers....
I am so sorry for your loss and pray for your journey in healing.
Your absolute, complete love for him shines through and his life will be forever blessed by it.
May you be blessed as well....
Your thoughts to be a Hospice volunteer brought tears to my eyes, as your experiences have given you the complete compassion that other families so need. It would be a gift in Jim's honor that you would be able to provide.
My mother suffers with Parkinson's Disease, and had been a Hospice volunteer for many years....it has been suggested to us that she now enter the Hospice program soon...
life ebbs and flows in directions that we never expect to take us but always somehow touches us with the love and support of others.
to you!
Minniebeth

 

[elizke]

Susan,

I'm so sorry for your loss. Thanks goodness you were there for him, and that your last months together were so meaningful.

And I too know what you mean about the relief for your loved one. When my mom died last year after 10 years of living with a horribly debilitating illness, I got the chance to be alone with her at the wake. I told her how happy I was for her. I pictured her flying free of the body that had betrayed her.

And thanks for posting your story. You say it helped you, but also you are helping others. You remind me that I must make all I can of the time I have with my cousin.

Elizabeth

 

[BarbieGal457]

Elfstar, I am extremely sorry for your loss. You are a wonderful woman, and always in my prayers.

 

[MinnyGranny62]

Susan I am so very sorry for your loss of Jim. I havn't been on my computer for a while so I did not know of Jim's passing. You are often in my thoughts and prayers and will continue to be. Shirley

 

[Jenvenza]

I am so, so sorry for your loss. I wish I had the right words to say.

 

[Elfstar]

Thank you all, again . I'm starting to feel a little better, partly due to knowing Jim's not suffering anymore, partly from getting some rest - I can't believe that this journey that flew by was over a year long. And my daughter let me know a few days ago that we're expecting a new life - our first grandchild. I can only hope that Jim knows, too! Oh my God, I miss him!!!! This will be a year of recovery, a year of firsts (without him... ) and a year of renewal. I'll still be here, gratefully accepting your encouragement and support, and giving mine back to all of you who need it. This board was, and still is, a godsend!

God bless us all for helping each other!

 

[zalansky]

Elfstar! What wonderful news in the midst of missing Jim.

 

[cyndylou]

Elfstar, your spiritual strength is evident in all your postings. You persevered through a great trial, and were an inspirational example to others. I am thankful you are getting needed rest. And a grandchild-what a blessing! When our first grandchild was born (we have three so far,) I experienced a new kind of love that was so wonderful. God is great!

 

[WDWRocksMySocks]

TAnd my daughter let me know a few days ago that we're expecting a new life - our first grandchild. I can only hope that Jim knows, too!
God bless us all for helping each other!

Congratulations on the new grandchild. I know it is bittersweet and it will be difficult for you as you experience all the firsts w/o Jim. But, the new life that will bless your family will provide much needed comfort and solace to you. After my Dad passed away, my sisters kids were one of the main things that helped my Mom get through it. My thoughts and prayers are with you as you go through this new year.

 

[Elfstar]

I can't believe Jim's been gone three weeks already. It seems like a bad dream, and I keep wishing I'd wake up. I'm keeping busy but it's just hard to function sometimes....it feels so odd not to be taking care of him.

His daughter and I are going to WDW March 5th through 9th for a "memory trip" - we decided it would be easier if we went back the first time together. He and I went many times, he and Sherry went together once but the three of us were never there together, so I'll share my memories with her and she with me. We've booked a room in the French Quarter; I'll go back to AKL in the Fall for my solo memory trip.

Oh, and our first grandchild is due September 1st courtesy of my daughter! When she first found out, she was so excited she forgot to ask her due date!

 

[ameraumi]

Congratulations! I believe that Jim will watch over your daughter the next months and smile from above when the baby is born.

You have shown such strength and I can only hope I can be as strong as you.

 

[LouDisney]

I'm sorry for your loss.You are in my prayers.
And congrats on the good news.

 

[TeresaNJ]

I just found this board today, and have read through all your posts. I am so sorry for everything your darling Jim, you, and your family have gone through, and for the loss of Jim. You are an amazing woman, a hero in my eyes, so courageous, and so caring to others. Thank you for reminding me to be grateful for everything I have, and to treat every day as if it might be my or my loved ones last. Congrats on the upcoming birth of your grandchild!

 

[Elfstar]

Thanks, TeresaNJ, I'm just grateful I was there to help him through it. I have had a lot of experience with death, both personally and professionally but this is something different than I've ever experienced before - to watch a human being, someone I love so much, face his own death and progress to that end. I started seeing a Hospice grief counselor today because I currently feel "nothing" - apparently I'm just in a "numb" state which is a protective mechanism that will last as long as my (brain? subconscious?) thinks I need it. She also told me that I will never be the same person I was before all this, that I'll have to find a new "normal". This is something that I've never heard before but it does make sense - no one could have an experience like this and not be changed somehow.

 

[Elfstar]

Thought I'd post a little "trip report" about Sherry's and my trip in memory of Jim. Obviously, there were mixed emotions - it was so odd being there without him - we both felt it - but as we started touring the parks, and telling each other what we'd done with Jim when we were here, and here, and here, we started relaxing and enjoying ourselves. A high and low point was reached at Epcot - Sherry and Jim had done a "leave a legacy" a couple of years ago - she'd forgotten her locator so we went to the photoshop to see if they could help - they have every location on file - and when I asked, they were able to print the original photograph that was used to make the legacy plate. It was so great to see him healthy - before the disintegration ALS had put him through - that I just burst into tears. The photo shop staff was wonderful, we explained what we were doing and they were so encouraging and supportive. The rest of the trip was calmer - we went everywhere he loved, went on most of his favorite rides (I cracked a rib a week before the trip and decided that Rock "n Roller Coaster probably wasn't a great idea temporarily), ate at all of his favorite restaurants (Sherry had never been to breakfast at the Crystal Palace before!) and the last day, without even thinking, we ended up at the pick-a-pearl stall in Downtown Disney. We each found beautiful pearls and had necklaces made to commemorate our trip. Sherry and I have always enjoyed each other's company but had never spent any one to one time together before - this was a very special trip in that respect also. And she's excited that she's becoming an aunt (by my daughter - her bonus sister) and can't wait to knit something special for the baby.

So, another step achieved, and more to come. I'm still seeing the Hospice grief counselor again next Monday - I can't seem to move past the anger phase - I bet I'll always be angry about this loss from this miserable disease.