He’s here but he’s not here.

It’s him but it’s not him.

He’s gone but not gone.

I’m feeling ambiguous loss. A deft study by Pauline Boss nearly 10 years ago defined this so well. It comes, most commonly, to caretakers of Alzheimers patients…but also to others who are watching their loved ones shrivel away or who have disappeared without a trace.

There is ambiguity in the loss but also in the feelings toward the loss.

I know that, for me, I cry every single day. I cry because I miss Michael and am overwhelmed by running the life we were supposed to be running together combined with the demands of caring for him.

I miss having a partner and a mate who is present and able to help me. I’m tired of the snow and the ice and the garage door that doesn’t shut and the car titles I can’t find and he can’t tell me where they are.

I miss the future we’ll never have. We spent a lot of time, it now seems, talking about it. We were both so excited over the book and the shepherding of Gina through high school and we would be free. After raising children for 35 years, I would finally be child free and we would be Harley riding grandparents…and all the kids could wince when they heard the vroom vroom coming up the driveway. Here come those deliquent senior citizens….

ha! we had such a good time talking about it.

And now I move my leathers and denim vest with all the HOG patches on it to the side when I go in my closet. I moved it for a long time but it never bothered me. Now it bothers me.

But the future is not as difficult for me to think about as the present is. The other day I received the copyeditor’s copy of my book to approve the changes. I read the acknowledgment page to Michael because he’s never heard it. I wanted it to be a surprise but you never know.

So I stood there and read it. He’s never heard it. I wrote it long before he ever got sick. “My husband, Michael DiCarlo, for loving me, being there for me, and believing in me like no one else ever has. I love you truly.”

His eyes welled up with tears and he leaned over and kissed me. And he looked so sad. And happy at the same time.

Ambiguity.

I get angry at the disease that is ravaging his body. Why why why

I cry so much of the time because of what this is all doing to me. But then I remember what it’s doing to him. And I cry some more.

Michael was always a very happy, simple person. Just content to fish and watch Nascar races. Never asked for much. He would put away new clothes you gave him. He would save little ketchups from hotels as “souveniers.” While at the same time never denying me my extravagances. Even though I think he should have sometimes.

He just cared about the people close to him and didn’t really care what the rest of the world was doing or thinking. Walking down to the creek with a fishing pole. Looking happiest just doing that. Taking a motorcycle ride on a sunny day. Just loving life. He never complained about much. Never asked for anything. And stood by those who mattered. Simple. Easy. Funny. He found the strangest things funny. And when he would laugh at something that held absolutely no humor to the rest of us or at something he had said, me and the kids would laugh at that. He didn’t care that we were laughing at him. It made him laugh more. And then we would laugh more. There would be this chain of laughter going back and forth.

And I have a great anger that this fantastic person is being ravaged by a horrible disease. I hate it. I hate it.

When we were going for radiation he would point to the children with cancer and say, “I’ve lived my life. Look at them.” He hated seeing the kids in the oncology unit and in radiation. He hated it so much. Felt it was just so unfair and terrible that little children should suffer from cancer.

And he would refuse to feel sorry for himself or let me feel sorry for him. That is how he is. I don’t think he’s had a moment of self-pity.

But I hate the disease. I hate it so much. I hate what it’s doing to him to me and to us. I hate the disease taking over and waking me up in the middle of the night. I am exhausted. I’m working now. I have long long days. I need my sleep. Go back to sleep honey I say. But my head is screaming at the disease. I HATE YOU BRAIN CANCER I HATE YOU Michael is relentless about getting up. One night I didn’t sleep at all. I was so angry. I wanted to scream. I wanted to throw him out a window. And then I felt guilty. But I need sleep. And Michael isn’t keeping me awake. A brain tumor is keeping me awake. I HATE YOU BRAIN CANCER. SHUT UP AND LET ME GO TO SLEEP!!!

People who have gone through sudden and tragic losses tell me that I’m “lucky” to be able to say goodbye. To have this time. I don’t compare losses because everyone feels their pain at 100 percent, says John James, but I’m in an underwater world or something. Some in-between land where nothing makes much sense.

Yes I’ve gotten to say a lot of things I want to make sure is said. He’s here a little bit each day. I do get to see him, a glimpse of the person I love, for a little portion of each day.

Yes, I read him the acknowledgment page and he knows I love him..so yes, there is time for goodbye…but it’s a long goodbye…said each day…felt each day…an aching that happens each day….it’s a grief but not a grief…a loss but not a loss…

I also grieve the present and future loss…a little bit each day. He’s here but not here. Not dead but dying. I’m sad but I have to go on like nothing big has happened. I cry and grieve and then have to suck it up to change his Depends. This is better than what? I’m not sure.

Ambiguous loss is not real. It’s just not.

You don’t know what to do or what to feel and feel guilty for hating all the ambiguity so much.

I know that some caregivers think ahead to when it’s over and they don’t have to do this anymore…live in this strange world…and then they experience guilt and anger and despair. Thinking that thinking forward, wanting their life back, is a betrayal to the person they love. That thinking about it and wishing for this strange in-between life to end is akin to wishing their loved one dead. They bury it and suppress it and don’t talk about it. Such is the caregiver dilemma. There is guilt and anger and despair over that feeling.

But we all want normal. We all want to know what to expect and what to come home to. When cancer or Alzheimers or some other debilitating disease is running the show, you don’t know. You simply don’t. You crave normal. You block out what that means. What would it mean if things were NORMAL. You block out what it means. You simply crave normal. You pine for normal.

My creative mind has avoided the guilt of looking forward by thinking back all the time. I scream, inside my own head, and sometimes out loud in the car, that I want my old life back. I just want to go back to last year. I want this to have never happened. I want the hospice people out. I want the hired caretaker out. I want my house back. My life back. My husband back.

I want it BACK dammit!!!

I avoid the thoughts of the future where medication and hospice and caring for Michael doesn’t rule the day. Because I know it means he’s not there and I can’t go there.

I know that I hold myself back from wishing it was over. Because I know what that means. But I also think, sometimes, that I’m not going to make it without cracking under the pressure. So to avoid wishing it forward, I wish it back. I want to go back. Forward is horrible and scary, present sucks but back was nice.

Can we go back?

Please.

Pauline Boss calls ambiguous loss distressing because you perceive a loved one present when they are gone or gone when they are physically present. It’s not making sense.

Is the loss final or temporary and when do I know?

I’m not sure what to do about hanging on and letting go. I talked Michael into restarting chemotherapy. It’s a short stint. 5 days. But he hates the pills and spits them out. I’m shoveling pills into him as an act of defiance. I’ll end run around Michael to get to that tumor.

I become possessed when I’m trying to cheer him on to swallow those pills. He tries. He digs them out of his mouth and on the table. I pick them back up and put them in his mouth. He tries again.

My brain screams Kill that tumor. Kill that tumor. Even though I know nothing will kill it.

Michael tries. He really does. It’s so hard. I want to let him stop. I want to say okay. But then I feel guilty. I should coax him. Encourage him.

Am I encouraging him or forcing him to do something he doesn’t want to do?

I don’t know. I don’t know. I don’t know.

He acquieses because he knows Gina and I want him to keep going with the once a month chemo. It doesn’t make him sick but he hates the pills. I gave up for 2 weeks after he spit them out. Then I felt guilty and started pleading with him again to take them.

What am I doing? Why am I doing it?

I don’t know. I don’t know.

Ambiguous loss.

You simply do not know.

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