Hold on Tight...

[Lkaibel]

Still here, a little bit more “there” this morning before I gave him meds. Who knows, we could be here Friday.

Nurse and Aide coming today. These are the only people I want to see live right now. I am posting memories and pics on Facebook in kind of a series and it’s sort of like virtual tribe sharing (with the ones I see in real time too) A lot of people are asking for more.

I’m watching Mad Men again. I started last night. I suppose this ensures I will never want to see the series again, and that’s okay because it’s at least my forth viewing. I do love it though, the performances, the clothes. I was born in 1965 maybe that makes it extra interesting to me.

Thank you all so much. You are part of my Virtual tribe for sure, across oceans even.

 

[Jlynn]

Your pretty amazing Lenore. It's such a gift for you to share this journey with all of us. I wish the whole world could see what you and all caregivers have gone through and go through for our loved ones and what our brave loved ones went through/go through to get to that peaceful ending. Maybe then money would pour in to help find a cure for this hideous disease that takes such a toll on a human being during and in the aftermath. We are here with you Lenore. Hugs.

 

[vltsra]

Thank you for sharing this journey Lenore. I was so touched reading what you did for Brian yesterday. You have shown so much love.

V

 

[affected]

Still on the vigil with you - we were watching breaking bad. One of my few wishes is that I'd discovered the series earlier so he could have seen it all as he was loving it. The very last word my Chris said was 2 nights before he died. An episode had just ended and he turned his head slightly and said "more". He fell asleep during that one more episode and that was the last time he was properly responsive.

I think it was nearly 2 years after he died before I finally came back and watched the whole lot.

You are doing such a great job as I can tell Brian is being kept very comfortable xxxx

 

[ARCG]

You are an amazing caregiver and an inspiration to us. Walking with you still...

 

[ThisPresentMoment]

Pizza House!

My very favorite Mad Men moment.

 

[Thomas933]

“Nostalgia - its delicate, but potent....in Greek nostalgia literally means 'the pain from an old wound.' It’s a twinge in your heart far more powerful than memory alone. This device isn’t a spaceship, it’s a time machine. It goes backwards, and forwards… it takes us to a place where we ache to go again. It’s not called the wheel, it’s called the carousel. It let’s us travel the way a child travels - around and around, and back home again, to a place where we know are loved.” (Don Draper, The Wheel, S1 ep. 13)

Brian knows he is loved - what a tremendous gift you have given him. That will stay with you, always. Many kind thoughts for you both .

 

[MarieLaure]

Trough ages and civilisations all sorts of rites have been created to help loved ones make it smoothly across. You are one more proof that it all boils down to love. Your love is accompanying him and you are showing such strength in your determination to let him have it smooth That love you are giving is not sustaining only him, but also you in the long run and inspires all of us.
We are with you.

 

[Narrowminded]

Lenore I am still here with you in spirit. I did much of the same as you are doing now. Still holding you and hugging you. You are doing an amazing job.

Hugs

 

[Lkaibel]

A random thought to end the night: how will I get through losing Brian without Brian?

He’s been here for me for eleven years. I’m glad my mom’s stuff came up with him still in this world. He helped me accept it even as his body failed.

I have been googling local widows groups. I know it’s not a work project where I go to meetings and organize files and it’s all “done”. I just want to make sure I don’t cone home from work every night and spend my weekends and evenings hiding with my animals for the next year, you know?

Look, the poor man has not even taken his last breath and here I sit, planning ahead. Time to medicate Brian, get my laundry, and pour a small glass of wine for bed. No, I’m not boozing it up in here it just sounds good.

 

[Buckhorn]

Hugging you & Brian tightly. You write so eloquently Lenore ........ such raw and true emotion, sharing freely with all of us the day-to-day truths of your last days with Brian. "How will I get through losing Brian without Brian"? This resonates so much with me Lenore. All I can say is one hour at a time; then maybe one day at a time. My Dave was truly the Ying to my Yang. We finished each others sentences and often knew what the other needed/wanted witihout asking. Dave supported, encouraged, and ...... in a way I cannot fully articulate, somehow validated me. I also understand your comments about the relief of the last days/hours ....... compared to the everyday hell that all CALS/PALS go thru in the days leading up to VSED or other means to facilitating the inevitable. Love to you Lenore!

 

[Jrzygrl]

No answers here, Lenore. Just sending more hugs.

 

[affected]

Still just totally with you xxx

 

[sassy]

Yes, your comments are so real and sometime take my breath away......"how will I get through losing Brian without Brian" Thinking of you...

Sassy

 

[Lkaibel]

Day six began at 3:00 AM, when five full days with food or fluids ended.

Brian’s eyes were slightly open and moving in a “looking around” way when I woke at 8:30. He’d had Oxy and Thorazine at 3:30. I gave more of each and also the Methadone t 8:30.

The Chaplin came at 9:45 and just left. We talked and she gave Brian a blessing “We love you and we release you.” Yes, yes we do.

My heart tells me maybe tomorrow but more likely Friday. I’m actually going to leave the house briefly tomorrow and see my mom while the hospice Aide is here.

I know that sounds nuts, but Brian has specifically told the Aide he worried about me watching him the moment it happened. If I’m with my Mom and it happens I’m ten minutes away and can come back and deal with things.

This may be taking time, but I think I’m Brians case I can rest assured that suffering is zero.

The nurse and social worker will be here later, as Will housekeeper/carer.

Why does ALS happen so frequently to the kind, the smart, the healthy, the strong? The more people come in here and talk to me, the more I feel the enormity if loss. His loss, my loss.

I wish I could say humans are bringing me comfort, but live ones in my house are bringing me more sadness. Yet I sort of respect the need of the care team folk to cone in and do their thing too. The Chaplin said she wanted to say Goodbye.