Monday, April 4, 2016


April. For me this month is all about death and taxes. So fun.

My dad has Lewy Body. My gramp has Lewy Body. We are losing both of them to that terrible disease. Dementia and dementia related diseases are in the news all the time these days. They talk and talk about the mental and financial stresses that those diseases take on the caregiver. They don't talk about how to handle the grief that comes for so long before you actually lose someone.
My sister and I have lost our father even though he is still here. My mom has lost her husband. We've been grieving this loss for ten years. The last couple of years as my dad has been in serious decline, we have been grieving even more.
I miss my dad so much. I miss him and my heart is broken. It is broken and it feels like there is no space for me to grieve. He is still with us in body. There has been no funeral. Life goes on. His long, slow battle with dementia has been going on for so long that it has become a way of life.
I've found myself withdrawing more and more this year as things have gotten harder. I don't put myself out there as much. I cry over the stupidest things. If you hug me too long, I cry. Nothing seems so important to me as my family these days.
It's not all encompassing or anything. I go out and have great times. We had a fabulous trip to Europe and it was very relaxing. But those feelings are always there.
There have been a few friends who have been so supportive during this time. They have been there for me and for my family. They have gone out of their way to visit and check on us. But a lot of people that might show tons of support if my dad passed away, don't know how or why to give support now. I don't think they do it on purpose. I don't think they understand. I don't think the social norms are there to support families in grief when the person they are grieving is still alive.
I've talked to friends who have told me that they just don't know what we need. I don't know what others need, but I can tell you what I appreciate. I appreciate little notes to let you know that you are thinking of me and that you care. I really don't want to answer any questions. Please don't ask me for details. Please don't take my introversion for dismissal. If I ignore you, please don't take it personally. I just don't have the bandwidth to be social sometimes.
When my dad was diagnosed, there was a certain level of cultural shame. We kept it quiet. We didn't talk about it publicly. I think the same thing is going on now with the grief. We don't talk about how much this hurts, because it doesn't seem the right thing to do when the person you are mourning is still sitting right next to you.
The other day, as we were packing up things in the garage, Michael asked me what I wanted to do with my dad's tackle box. We don't really fish and didn't need the tackle. I burst into tears. I missed the man who used that tackle box so much in my childhood. I miss him. I dropped everything and went over to my parents' house so I could hug my daddy. He was happy to see me and I hugged him. I hugged him and I love him so, so, so very much, but it didn't make it better. I still felt so bereft. My dad, the dad who used that tackle box isn't here anymore. He's been gone for a long time. He left so slowly that I just accepted it, but now he's gone. He's gone and he's not coming back.
Last summer he went into a more serious decline. My dad is in hospice now. He can't do much. He's still here and still smiles at me when I'm there and I can stroke his hair and kiss his cheek and rub his shoulders. I love him. I want to make him smile. I know I will grieve in a different way when he dies.
This weekend we had another scare and I thought I might lose him right away. I knew in that moment that I'm not ready. The man who was my dad is gone, but I still love that man who is here today. I love him so much.
I thought I was fine all weekend, but my body knows better. I was shaky and forgetful and sick to my stomach and teary. Even though my mind kept saying all was fine and that I was fine and that I shouldn't be dramatic. My body had a different story to tell.
I don't trust myself to look at this situation rationally these days.

Oh, but my daddy. I wish you could know how he was.
My dad was so dynamic. I wish everyone I know now could have known him in his prime. He was a mover and shaker. He was brilliant. He was a true entrepreneur. He had a law office with a spiral staircase that led up to a private room he called his "dream room". He was a lawyer who needed a room in which to dream.
I used to sit at the end of the sidewalk with him and we would just talk. Talk about ideas and dreams and poetry. He supported me in my dream to be an actress. He believed in me and gave me every opportunity.
Dad never knew a stranger. He loved people and being around them.
He always had a yellow legal pad with him to jot down ideas and poetry and music. He always had Dylan lyrics handy for any situation.
If anything ever went wrong, my daddy was the first person I would call.
I love/hate to watch movies of my dad back when he was still him. I want to watch them over and over, but they just hurt so much.
I don't talk about this much on the blog. It seemed so personal. It seemed like it wasn't my story. It is my dad's story. It is my mom's story. My mom is so private, I didn't want to air her business. But she gave me her blessing to write this.
She is the one who has the biggest burden. Yet her faith is so strong. She lives in the moment. She takes it day by day and each day proves to her that she can conquer another day. She is an amazing caregiver. My dad could not have a better person by his side. She is his advocate. She loves him and puts him first over and over and over again. I want to be a better person so I can do that for her.
The last few days my sister has been down several times and we have been together again, the four of us. We listen to the Texas Tornadoes and laugh and talk and it is a magical moment. We have been brought back together again. Mom, Dad and sisters. Circumstances have changed, but we Tomblins are strong. I am so lucky to have this moment.


cheris said...

This is an important post. I'm so glad you wrote it and shared it. Those of us who love you try to put ourselves in your shoes, but it's not really possible. We all want to make sure we're helping, and understand that what you need might change from minute to minute. So keep telling us. We'll never be offended.
Love and hugs to you whole wonderful family.

Christina said...

Oh, Amber... I know you know how much I wish this weren't so. This is tragic but beautiful--and beautifully expressed. We who love you so much are here to listen.
All my love to you, Lucky, Becky, and Tiffany,

AECH said...

I'm so sorry you're going through this. It's so hard and sad and lonely. For me, the grieving has never stopped, I've just learned to live with it. But I'll never be the same person I was before my mom died. Her death has been as life changing for me as has been becoming a mother. It's shifted my priorities and focus and responses to the world. For me, grief feels kind of like I've moved to another country that I didn't know existed before where only the grieving live and from which I'll never leave. But we go on and get through it, even when it feels impossible and incomprehensible, if only because we are mothers ourselves and so we must. And it changes, or we do, you can learn what to let go of, eventually, I promise. Love you. Hang in there. XOA