Hi all,

Many of you asked how I am…

…I am grieving..and as a grief counselor…I know that I must do just that.

Even though Michael was sick for so long, I am still shocked that he is gone…that I will never see him again….

I knew, when he was sick, that I was having a lot of trouble accepting the terminal prognosis. My soul screamed all the time. I didn’t think it could get worse, but it has.

I cry a lot more the past few days than I did when Michael was sick. And when he was sick I cried almost every day.

But when he was here, I felt very comforted just sitting with him even if he was sleeping (which, toward the end, he usually was). I missed the well Michael a lot and cried over my memories of the light-hearted, wonderful man but even when he was sick, I still had a bit of him each day.

….

He was declining over the past few weeks. I had been secretly begging him (in my mind trying to get a telepathic message to him) to not go before or on Gina’s birthday (8/7) or while she was gone (she went on vacation for 9 days after her birthday and she richly deserved it).

On Friday night my caregiver went home about 6 pm and Michael was sleeping. As I did every night, I sat with him, right next to him, with the laptop. At 9 I gave him his medication using syringes because he wasn’t really swallowing. I sat there, as I always did, until 1 am or so. And then I kissed him on his head and said, “I love you honey” as I did every single night.

Unlike most nights and definitely unlike the past few weeks, he opened his eyes and said “I love you too.” And went right back to sleep.

Those would be the last words he ever said.

On Saturday he threw up his morning meds and his breathing became rapid and shallow. I called hospice. One of the nurses came out and didn’t really say much but they decided to put him back on morphine. He was on morphine for the breathing and ativan (liquid) for seizures. I pumped it in and he would spit it out.

I was trying to let the kids know he was worsening without setting off full-blown panic and having my boys careening around the highways.

I was so anxious that Gina wouldn’t be here. Most of the day I sat right next to Michael and held his hand, but also paced around quite a bit whenever he was sleeping. I couldn’t sit still.

When I sat next to him he would hold my hand and stare at me. He wasn’t in any pain but held my hand and stared and stared. I told him the kids were coming home on Sunday, the next day. I asked him to blink if he understood and he did.

I slept about 3 hours and texted my son Michael in the morning to get Gina home. They walked in about 4 pm.

My caregiver came back around 7 and I updated him.

I sat up as long as I could and was bedside again by 6 a.m. Michael held my hand and stared at me. At 9 I called hospice and asked when his regular nurse was coming because I thought he was getting even worse. They said she would be there by 11.

He seemed to be running a fever so when we couldn’t find the thermometer, I sent Michael out for one.

The nurse came and said he was fading fast. He still held my hand and stared but the nurse said he was filling up with fluid. I got up to call Theresa and while I was up in Gina’s room, they said he was going. We rushed down and each took his hand and cried. He still stared at me. I told him it was okay and his nurse said to call Michael.

I said “No I do not want Michael driving like a maniac.”

Gina and I sat there holding his hand. I stroked his hair and got up very close to him…face to face…and just kept saying I love you. We stayed like that about ten minutes. He was laboring but steadfast in holding my gaze.

The nurse came in and said, “Michael is here.” She turned to him and said, “Your boy is safe.”

Michael let out a sigh, closed his eyes, and he was gone.

Gina and I just stayed there a long time, each of us holding a hand and crying on one shoulder.

His nurse said she never saw anyone look at someone like that. I said I wasn’t sure he really was seeing anything and she said yes, he did, he saw me.

We dressed him in jeans (which he hasn’t worn since he was sick) and a Harley shirt. He looked like him.

He did not go into the care of the funeral home until about 5 after Nick came and had the chance to say goodbye.

Then I called them and they came.

And, for me, that was the worst part. I simply couldn’t let him go.

I felt like throwing myself off a cliff at that moment. It was the single worst moment of my life. All I could think of was that I would never touch him again…and that felt too much to me.

Eventually I did let him go…it was not easy. At all.

……

I have bouts of intense horribly deep crying every few hours. My eyes are permanently red I think.

They’ve taken all the hospital equipment, the hospital bed, the never-ending oxygen machine (I can still hear it in my head), all the medication, bed pads, wheel chair, bed table. I’ve put the wash basins and ointments and lotions away. I’ve taken all the medical stuff off the pool table and it looks like a pool table again.

Michael’s effects are still around the house, his well-Michael interests and things…I’ve put back some of his momentos where the medical stuff–the mounds and mounds of it–was just a few days ago.

We’ve kept all the Michael effects…

… but we’ve banished the signs of the illness. The terrible illness that took my love from me.

I’ve taken Michael’s pillows back to our bed and put them on his side.

They smell like him and last night I fell asleep just sobbing into one.

Michael showed me what love was. For the first time in my life I was loved by someone who thought the sun rose and set on my head. I have no idea why he loved me the way he did…but he did.

He was an old fashioned man who believed that the father and husband was the rock of the family…the one to be there…to run everyone here and there and not complain.

At the same time he supported (and loved) my independent spirit, my me-time, and being my own person. And he was his own sweet, wonderful, simple self.

Up until he got sick, he never made me cry. He loved me in a way that screamed “Love is an action.”

And in the past year I would have done anything for him. I knew, from caring for him over the past year, what it means TO LOVE…really love someone who loved me.

And he trusted me to “have his back” and I did. I fought for him to go to rehab instead of a nursing home back in the fall. I fired his horrible caregiver and found a great one. I did not let him die in a hospital. I never let anyone give him a suppository or feeding tube or anything he didn’t want or wouldn’t like. I was Michael’s advocate and voice. I didn’t care if people didn’t like me or thought I was the Wicked Witch of the West. His comfort was all I cared about.

Even the memorial service is about honoring his life, not doing the traditional. I’m speaking at his service…something most wives don’t do and I don’t know why not. Who is better able to speak about him?

…..

When he got sick, we had had a happy marriage.

We had no resentments, no unresolved issues and my love for him was pure and I was glad to have the chance to show it and act it every single day. He knew how much me and the kids loved him. And that was important. He always seemed surprised that we loved him as much as we do.

And I will hold him in my heart.

And miss him.

Always.

But I have a mission to feel my grief, care for my family, do my GPYP work and work for the Foundation and find a cure for the terrible disease that took my love from me.

Definitely down (in an appropriate way) but never out. I’m rereading all my grief books…I forgot how good they are. And comforting.

Thank you all for your thoughts, prayers, notes and donations to the Foundation.

Peace to you all.
Susan

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