This short blog helped me to get through the first weeks of my mother's illness but I have decided that I don't want to focus on the goodbye anymore...I can't, its too much. I still want to blog but I want to blog about life not death. You can read on at my new blog

My Circus, My Monkeys

Disappearing Act

Its amazing how hard times quickly show you who truly cares about you, who your true friends are...its sad really. I have always been one of those people that even an acquaintance could call at 3 AM and I would be there for them. I have sacrificed to be there for people only to get screwed over time and time again. I learned my lesson and I tightened my friend circle down to just a very few. Now that I am going through this I find that my friend circle is pretty much zero. Even my best friend who is one of the sweetest people in the world is no where to be found. She has a stressful life, works two jobs and has kids but she finds time to post on facebook....if you have time to post on facebook then you have time to send a quick "Im thinking of your message". 

Other than my husband and family I am utterly alone. I want a friend who I can talk to that doesn't have their own emotions about it, that can just be a support for me, more than that I just want to feel like I matter but I don't.

My new normal

I am settling in to my new normal, my emotions have leveled out a bit although every now and then I start to get really bitchy and then when confronted about it I fall apart, its like bitchy comes out because I don't want to let the tears out.

I take care of my family, my husband being a tremendous help and then once I week I make a batch of meals for my mom and when I go down to do my weekly cleaning of her house I bring them and freeze some and leave some in the fridge.

My new normal won't be my normal for long I'm sure, as her disease progresses so will the definition of normal.

When my mind is not distracted I still think about the situation, today I started to think that my mom dying isn't the worst part, the worst part is watching her deteriorate and being totally helpless to do anything about it, to watch her suffer emotionally. Once the disease takes her life there will be no more suffering for her, I can rest in the fact that she is in peace. I'm  not saying that her death will be easy on me in any way shape or form, it will destroy me, at least for awhile but knowing she is hurting is much worse.

Coming out of the fog

For the first three weeks after my moms diagnosis I felt like I was in a bit of a fog, sort of floating through life, I did the bare minimum at my own home as far as housework but mostly I didn't feel like doing anything. It was taking all of my energy just to survive each day. Today is the first day I feel like I'm coming out of it though I do admit that it is forced. I mopped the floors, cleaned the kitchen and tended to some other things that I needed to do...I had to force myself to start but it felt good to get things done...I need to figure out how to stay busy, staying busy helps, it makes me feel alive again. Unfortunately I am unable to work for my own health reasons so it is hard to find things to stay busy with. I do a lot of artwork but that doesnt keep my mind busy, just my hands...

Ugly Crying

So funny that I had just written a post about emotions settling because I had a major meltdown just hours after....

My dad for some reason wrote in an email about how he probably doesn't have much more time left on Earth than does my mother because of his age and how he feels and that did me in, to think about both of my parents dying so close together plus my gram is 85 so probably she too will die in a short time frame from their deaths....I was talking to my husband, crying about how I just don't know what to do or how to deal , how to get through, how nothing seems to bring me happiness right now and I don't know how to focus on anything....he then said something that most people would say and most people think its helpful although I am NOT one of those people. He said "well what would your parents want for you right now? Would they want you to try to be happy?" Well, most days that would rub me the wrong way because of course I know what they want but that doesn't matter, seriously, just because someone else wants you to be happy doesn't negate the devastation that you feel, if I could force myself to be happy then I wouldn't be crying! Well it was DEFINITELY the wrong thing to say last night, I pretty much told him the same thing that I just typed but apparently my tone sucked and he snapped at me and I LOST it, started sobbing, said I was just going to go be alone, apparently put my laptop on top of my chihuahua, threw my glasses across the room and walked up the stairs sobbing and screaming at the top of my lungs like a deranged psychiatric ward escapee....ended up sitting in the bathtub with the shower on in the pitch black, don't even really remember getting in. I sobbed and sobbed and ugly cried with snot running down my face, my ever forgiving chihuhua crying outside the door because he couldn't get to me....eventually my husband came in and held me while I sobbed, getting soaked in the process...

It's amazing how you think you are doing okay but you are soooo very wrong....I also feel so damn alone. Its not like she has cancer, nearly anyone you know has been touched by a friend or family member with cancer so there is no shortage of people to talk to. I have my brother but we aren't close, he is much younger than I am....I did text him that I couldn't stop crying and didn't know what to do ...I tried to start a conversation with him but he text me a short text and then didn't respond again..

I have so much more to write but I feel like I might lose it again, my mom will be here any second with my daughter and I can't be a puffy ,snotty mess when they get here.

The downside of forgetting

Lately I've been wishing that the knowledge that my mom has ALS wouldn't follow me everywhere, that sometimes I could just forget. Today was the first day that I have been able to forget for a little while, where it hasn't always been in the back of my mind and I have discovered that there is a downside to forgetting....remembering. I go along and somehow the thought of mom having ALS disappears and for awhile I am just a normal woman living life and then it returns to my mind and hits me hard all over again, the reality comes crashing down....I'm not sure what is worse, having it in my mind always or having reality come crashing down on me....

I wish that there were something I could do for her to ease her pain at leaving us behind, to ease her grieving all of the moments that she will miss. She has seen me marry and seen her grandchild born, was there when she took her first breath. But my brother is ten years younger than me, she hasn't seen him marry or seen his children. She is also beyond close to my daughter, they have a bond that no one else has and I know the thought of leaving her, the thought of her not understanding and her pain, not seeing her graduate, marry, have children, not being there to give her advice and hugs on a hard day....it is all devastating to her and I can't do anything to ease that pain for her and it hurts so much to see her hurting.

Emotions are settling

The shock and devastation are slowly wearing off...sometimes it still feels surreal, like some colossal joke but most of the time it feels like we are settling into our new normal. Some days my make up stays intact all day, unsullied by my tears.  I still find myself about to break into hysterics and sobs but I'm able to take some deep breaths and center myself. I still find that the knowledge of  my moms ALS and the fact that I will lose her far sooner than expected is always in the back of my mind, the sadness always follows me and my happy times are not as bright as they used to be, I am sure that will change in time though. My first thought every day when I wake up, heck even in the middle of the night when I wake up is "my mom has ALS", I don't know why, perhaps my mind is trying to make it more real , I don't know, its odd.

I find solace in trying to do things so I don't feel so helpless. Once a week I go down to her house while she is at work and clean her house and leave a snack in the fridge or some meals in the freezer so she can come home to a nice house and not have to cook. I look into things that I know she will eventually need so that I have all of the information ready when she is starting to need them so she doesn't have to do the research. I'm sure that we could easily call the ALS center and they could tell us exactly what we need to know but doing it myself gives me the illusion of control over a situation that no one can control.

I also enjoy going to www.alsforums.com/, message boards for people living with ALS and their caregivers. ALS affects so few people that the people who live with it and those who love them become a part of this small family, sharing feelings and tips. I enjoy that I can talk to other people who can give me tips that I may not have thought of.

The biggest problem I have is reminding myself that she is not going to die tomorrow, if we are lucky we have years...the unknown is hard. I find myself have to bring myself back to the present because in my mind she is already close to death or dead, anticipatory grief can be helpful in preparing you but it can also steal the time that you have left with your loved one if you let it. Reminding myself to live in the present and enjoy the moment is key.