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I’ve been having meltdowns on a fairly consistent basis. I almost threw hospice out of the house last week. My son Michael had to talk me down from throwing everyone out. I’m on edge. I don’t like everyone in my house. I don’t like not being informed when Michael’s care changes. I don’t like so very many things.

Last night I was trying to spread salt around to de-ice the place and I slipped and fell. As I lay on the ground I thought this would be a good time to have a tantrum. Outside house maintenance is not my cup of tea. I wouldn’t even live here if it wasn’t for Michael. I don’t “do” de-icing and snow shoveling. Yet there I was doing it.

There was some resignation on my part and no tantrum, external or internal, ensued. I just got up and continued along the de-icing process. But today I am sore and stiff.

I continually feel two seconds away from screaming, crying or taking someone’s head clean off. But sometimes I just don’t even have the energy for it.

I cried all the way home from work on Monday night. I had a “sob from the bottom of my heart” type headache all night and into Tuesday. Some days, like today, I just can’t go there. I need some time to recuperate and regenerate between “episodes.” I need some time to be.

I have de-icing moments where I melt down and then icing up moments where I pull inward and refuse to emote.

When I was down on the snow and ice looking up at the sky I thought, “This totally sucks.” Because it totally does. But it was more of a side note, a passing observation, than introductory remarks that degenerate into complete hysteria.

I sometimes attempt to command Michael to get up out of his sick bed and be a normal person without cancer. It’s my denial running the show. I lay on the ground thinking, “WHY are you not out here doing this? Why?”

I know he’d rather be out there than laying in the bed and I would rather he be out there too. But for today it’s not going to happen and I have to just pick myself up, brush myself off, and continue to chip away at the ice and snow.

In so very many ways.

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I woke up early today to pack for my business trip. The first time I will be away since Michael got sick. We had a bit of hard weekend and I had a lot of wash to do and wanted to get his meds set for the next few days. I was pretty preoccupied with logistical issues.
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It might seem that Rope Burns is soley about my journey through Michael’s illness but I invite others who are family members and caregivers of people with cancer to share here when needed. I know I get intensely personal in my posts but a lot of what I am sharing is just a personal twist on universal experiences with cancer and illness. I invite others to share here as well or to suggest topics that are more cerebral than just my emotional bloodletting. Thanks everyone who comes here and comments or emails. It means a lot.

Last night Gina had to help me situate Michael in bed. He was just not helping me move him and I couldn’t move him.

After he was sleeping we went downstairs. She’s been holding up pretty well since the first few weeks. She spent the first 24 hours hysterical. But she’s held up better than I thought she would.

She was always Daddy’s little girl and, for Michael, the sun rose and set on her head. There was nothing he wouldn’t do for her. Plus she’s had a pretty easy ride whereas not much has happened to her in life. We, especially Michael, have made it pretty comfortable for her. But she’s always been a good kid so it hasn’t been hard to do. I have been the strict disciplinarian and she’s polite and does her homework and her chores, gets good grades and avoids a lot of the senseless nonsense that most teenagers engage in. But Michael spoiled her, nonetheless, and went out of his way for her all the time. So the loss is huge.

So after we went downstairs she just broke down and started to cry. She knows Michael would hate to be this way. We talked for a good couple of hours. We cried a lot. We hugged. She hates it and thinks its unfair. Because it is. And I had nothing left to say except yes it hurts and yes its unfair and yes we are going to get through. Somehow. Some way.

And I reminded her that while it’s important to do the grief work and grieve the loss, it’s important to know how fortunate we are to have known him and been loved by him. Unconditionally and consistently day in and day out.

It’s a balance that’s hard to remember. When I become grateful for how much he has loved me and that I have known this special person, it leads me back to unwillingness to let it go. I’ve had 4 months to work on letting go and I just find that I can’t. I am grateful but it’s too soon and I’m not ready to give up yet.

Today Michael has been sleeping all day. Not feeling well.

I sit by him as I type this and I reach out to him every half hour or so. And even in his sleep he squeezes my hand. Glad I am there. Giving me that small sign that he still loves me…

…and I squeeze back.

Tight.

So very tight.

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.
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As I wrote last week Michael was sleeping all the time and impossible to wake. He was saying he was anxious especially about me going back to work. They prescribed Ativan for this anxiety.

We had taken all the meds away except for the seizure meds (Keppra) and then slowly put them back, adding the Ativan.

When I left for work on Monday he was sluggish and out of it. I worked all day feeling badly and almost in tears (on my first day!). They were going to re-add the Decadron (steroids) to see if it would stimulate his appetite and alertness (it always does). But too much gives him too much energy and he’s bouncing around the house at 3 am. Because he has the brain tumor, he’s not quite sure what he is doing and some of the things he does can be dangerous. He’s also quiet…always has been…so he can get into mischief without so much as making a sound. So we cut back the Decadron at the end of last week when he was up and about during the night and added it back slowly to see how we could moderate both the sleepiness and the spinning like a top. A happy medium would be nice but we can’t seem to find it.

On Monday after work I walked to the train station and bought a roast beef sandwich as I always did before. When I was working I bought one at the deli every night and ate half on the way home and gave Michael the other half when I got home. It was habit.

So Monday night, out of habit and without thinking, I bought it and ate half. Then I sat staring at the other half and it hit me. There was no one to give my half sandwich to. So I threw the other half away and felt perfectly horrible…like part of me was going in the garbage. The whole roast beef sandwich thing was such a thing with us. I loved buying them because his face lit up like I had just given him a car. He was always like that. Easy to please in certain, predictable ways.

Michael was always very predictable in almost every way. Now I didn’t know what I would find when I got home.
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Michael took a turn for the worse over the weekend. Shaky, weak, sleeping all the time. This was after a very trying few weeks where he was active and mobile but so confused as to be opening the doors and throwing cans of soup at invisible skunks. (I realize that sounds funny and it would have been if not followed by an almost catatonic state.)

I went back to work yesterday. There were a lot of emotions involved in leaving, for the first time since September, for 14 hours. I spoke to hospice and my caregiver at lunchtime. He wasn’t eating much or drinking and hasn’t been up. Drinking is important. We need him to drink.

But the biggest challenge for me was stepping off the train and seeing the lines of cars there to pick people up. I knew I’d never see Michael in that line again. There was something always comforting about him being there to pick me up. Being there for me like no one else has ever been. Strong, silent, dependable. Hi honey. How was your day? Those small, inconsequential conversations gone from my life.

It was a hurdle I knew would be tough to face…and it was. It was very sad for me.

I drove to the store and then home feeling more alone than I’ve ever been…and those who know me know I’ve spent a great deal of my life feeling alone…but Michael was my partner and companion and trustworthy rock for 12 years…and now that is gone and I feel so utterly alone again.

I came home and visited with him a while. He’s not doing well. He did drink for me and smiled when I came in.

And that smile meant the world to me. It’s not the steady rock at the train station…but…it’s…something.

Something I cling to.