23 Months ago

23  months ago my “we” life ended and my “I” life began. I had no instructions, no map, no direction of where I  was supposed to go. Nor do I know if anyone can provide that for me. I spent the better part of 4 ½ years being a “caregiver”. I didn’t ask for it, but neither did Pete. In fact he told me one time that he wanted a divorce because he didn’t want me to have to take care of him. That was a pivotal point in our relationship. I remember crying like a baby wondering what I did wrong. When he came off the steroids he was on that caused him to rage, he cried too and begged me to forget what he had said. That day was May 25, 2009.  He told me I did nothing wrong, I did everything right and that scared him.

I have shared some really personal thoughts and feelings along this journey. Some of them I have never had before. Some I couldn’t put a name to. Some were ugly. They were jealousy, anger, abandonment, hate and rage. Some caused physical issues. I tried SO hard, so freaking hard to find a “light at the end of the tunnel”. Yeah, it wasn’t there. I found out who I could count on. The circle of support I thought I had became smaller and smaller. I retreated into myself because I felt bad that every time I spoke to someone I would talk about Pete. I saw that it made some people uncomfortable. Folks don’t always know what to do with grief. They want to be there for you, truly they do. Too often when I would see someone, they would do the head tilt, lips pursed, wrinkles on the brow and forehead, “how are you doing hon?” I understand that they were offering support and I am SO grateful for the people in my life. I finally realized that I could not provide the support to others who were also experiencing this loss. I could not give anything to them- I had nothing to offer other than a “me too”.

When Pete was called home my life stopped. But it couldn’t. I HAD to continue. Josh was scheduled for ear surgery the next week, I had to figure out what I was going to do financially. One income- no life insurance for this widow. All I wanted to do was stay in bed. It was literally like I was in a dream. One of our cats would not leave the bedroom and made her home on the floor in the space where Pete’s bed had been. She too mourned. She would meow a soulful sound every night and just look around the room.  She had taken up residence on the hospital bed with Pete and every time a Hospice Nurse would come she would get right up on Pete’s chest overseeing what they were doing. She tolerated his aide Frank and got used to him after a month or so. I needed to attend to the animal children we had as well. Boy did they miss their Daddy. This giant tornado was going on around me and I could not catch my breath.  Somehow I managed to keep moving, I think it was the fact that I didn’t have any other options.

I remember sitting in my living room the day after Pete’s service. Everyone had gone home. Josh, my angel, went to take a nap. There were pictures all over the coffee table (is it still called a coffee table, we never had coffee on it- I never touch the stuff!). I could still smell Pete’s cologne. I had the box of cards, mementos and other things from the Funeral Home. I was holding his toothbrush.  There were flowers everywhere in my house along with giant Lily plants. The house smelled of all the food we had from family and friends. There were boxes and boxes of cakes, cookies and big fruit arrangements. I looked up towards the ceiling and remember saying to Pete “so this is what is comes down to- pound cake and grapefruit” and I laughed really hard.  I could imagine Pete saying “How come nobody brought Twinkees?” I KNEW he was right there with me.

There is no set of rules to follow when someone passes. We learn as we grow up that wakes, funerals and sitting shiva are all part of life. As kids we have memories of seeing the “wedding and funeral’ relatives, babysitters who came to watch all the kids, getting to order pizza on a school night and we all had that one relative who took the kids to 7-11 to pick up milk or soda and let the kids get whatever they wanted… and we all did just that. We have memories of our parents crying, the smell of cigarettes (yes, they used to smoke IN the house) and the sink full of coffee mugs. There were boxes of Entemanns’ coffee cakes and Danish, trays of ziti, salads and cookies. We grow up equating death with an endless buffet of every kind of food you can imagine. And nobody told us we couldn’t have more. Quite the opposite everyone asked “Did you eat yet sweetie?”  As adults, we mimic what our parents did. After all people have to eat and the last thing grieving folks want to do is make someone a sandwich. I remember not wanting to eat. Now that isn’t a bad thing but you have to nourish your body because the stress of the events that occur takes a toll.

It is crazy. I grieve because of my loss but I should also celebrate because my husband is free and whole again. He has no more pain he is in Heaven. Grief makes us selfish. And then I have guilt for feeling selfish. It really is crazy.

My “I” life has become an “our” life with  my son Josh. There are two now. Shopping is different. Even when Pete didn’t or couldn’t eat, I still got goodies for him because somewhere in my denial I thought he would eat this Jell-O pudding and granola bar and BOOM snap back into health. Oh yeah, just get him to drink that Gatorade and he would sit right up and be fine. I would make him coffee and put heavy cream in it… had to add those few extra calories. He never ate the granola, the pudding made him choke and the coffee never made it past one or two tiny, tiny sips. The Gatorade went in through the feeding tube. No magic cu re, but I never, not once gave up hope. During one of the visits from the Hospice Doctor he told me that we needed to consider giving Pete less formula in the feeding tube since it was causing so much congestion. I threw him out of my house. This Doctor was telling me that my husband, my lover, my best buddy, my cheerleader, guru and love of my life was dying. How dare he. Get the fuck out of my house. Yup , I used the F  word. The next day the Social Worker came and I apologized. She was very compassionate but then she asked me if I had contacted the funeral home to make pre arrangements. Ok, enough of this shit. Are you freaking kidding me????

I went in to the bedroom and crawled into my bed and moved as close as I could to be next to Pete. I shoved pillows between the hospital bed and my bed so I could be with him. He was so thin and so weak that I was afraid to put my head on his chest. He just looked at me. We both just stared at each other for the longest time. Words were not necessary. I tried not to cry in front of him. Not this time. I cried and practically dehydrated myself. He saw every tear. He never took his eyes off me. He mouthed “it’s ok. You will be ok. I promise. I will take care of you. I love you”. I didn’t realize just how important those words would become.

So much has happened this past 23 months.. I have had devastating health news and now I am the one in a wheelchair. Yes, it will be a permanent place for me unless there is a miracle or an amputation. I am not thinking that far ahead. I have to think positive. I don’t have a choice. I don’t want pity. I don’t want much. It’s more about what I need. It has taken me this long to figure it out. I need to be able to figure this  out on my own. I NEED friends and family. I crave relationships. I need to have people in my life who will continue to give me space but at the same time keep me on track and help me to focus.

I tried a Grief support group and it was way too much for me. I am 49. I don’t want to think about my death. Yes, I want to be with my husband but he needs time in Heaven to build us that awesome house he is preparing for us. When it is time, we will have our forever. Some folks just don’t get it. I don’t judge them, this is their reality, not mine.

Next month it will be 2 years. I have to do something to honor my husband, but at the same time, to help me move forward on this journey. I am not sure what it will be, I wait for that sign. No matter what it is, it will be mine and I will be ok with that. I love you Pete……