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.

Profound Sadness

Profound sadness today washing like waves over me....I'm never really free from it, just some moments are more intense than others. The thought that this is really happening is hitting me over and over, my life is forever changed. I'm not sure what to say or what to do. I have this sense that I should be doing something but I have no idea what that something is. I don't know how to lose this sadness that is attached to me. I wish I were one of those people who could draw the curtains and get lost in TV shows and movies but I'm not. My mind never stops, it doesn't matter what I am doing, my mind is still running like a computer screen with 100 tabs open in the background. 

I don't know how to feel....she is dying....its true....I don't know how to process this

Second Opinion

It's definitely ALS....I'm not surprised, I never thought that it would be anything else. Still, I figured that some small part of me must be holding on to hop and I was sure I would fall hard even though I was expecting that the second opinion would confirm the first diagnosis...but I didn't....although the nights not over and I've had to stay strong because my daughter is up.

Bargaining

I know the five stages of grief, nearly everyone does. Denial, Anger, Bargaining, Grief, Depression, Acceptance.....I honestly didn't think I'd go through bargaining....I mean I don't believe in God....I wouldn't say I'm an atheist , I believe that there is a higher power but I don't believe in the Bible and its version of God and heaven and hell. So I figured if I don't believe in God then I would probably skip the bargaining phase, after all who would I bargain with?? Right? WRONG. Last night I found myself about to pray.....to God. That if my mom got a second opinion and turned out not to be ALS I would believe in him....silly

Welcome to the Sandwich Generation

I've done okay this week but I think its mostly because I've been at a distance, its easier to forget or deny something when it isn't in front of your face the whole time. We will see how I do after visiting for Mother's Day.

My dad (who lives 14 hours away from me) has been having problems of his own and now he is back in the ER and I'm waiting to hear what is going on.

With my parents so far apart in age I figured that the impact of their health issues would be spread out, Dad would go through it first and I would go through it with him, he eventually would pass and then my mom would start having her issues. It never occurred to me that they would both have major health issues at the same time. It's funny, in a not laughable sort of way, my 85 year old grandmother is in better health than both of them!

I got back on the weight watchers wagon this week although yesterday I was thinking about committing a crime to get a cookie. Today though....I'm afraid I am going to fall off of the wagon again. We are taking our daughter to the drive in and someone a nice big bowl of broccoli doesn't sound like a great movie snack. Despite cheating I am still losing weight albeit more slowly than I would if I didn't cheat but I can live with that.

Life Goes On

Life goes on....I think thats one of the hardest things to accept because when you get devastating news like the news I received from my mom your world just stop. For the first few days I walked around in a daze, in a disbelieving state, watching as the world around me continued, as it continued to spin on its axis... but not mine, somehow my small piece of the world stopped, frozen in time....I expect that happens with a lot of people who experience this kind of grief....but eventually your world needs to start spinning again and life goes on...trying to figure out how to move forward in the wake of something so horribly devastating is another story. Everything is the same yet everything is different. You wake up the same way, smack your alarm clock off, wake your children, fix lunches and coffee, fold laundry and run errands the same as you ever did but somehow it all feels different, foreign somehow, there is a weight on you that wasn't there before and it never goes away. Even in your happiest moments you still feel it pulling you down, holding on to your ankle as you desperately hold on to the balloon full of happiness that is trying to pull you off of the ground, away from your worries.

I look for things to distract myself so I can't think about it, to just escape it for awhile but there is nothing. Even watching TV my mind drifts to what is mom doing right now? How is she feeling? When I'm driving I see flashes of the memory card with her name on it that will be at a funeral that hasn't even happened yet.....when I paint I think about financial issues...when I sleep I dream of watching her wither and being helpless to stop it. There is no escape. So I guess I need to learn how to live with weighted chains on my heart because thats what it feels like.

Guilt

I know I have to find moments of happiness , I have to live in the present and that its okay for me to feel happy and light sometimes but yet I feel guilty anyway. I feel guilty when I forget for awhile, when I'm happy, when I'm relaxed, I feel guilty because I know my mom can't escape it for even a second. I know she wouldn't want me to be sad all of the time, to be feeling guilty, intellectually I know all of this but my emotions aren't getting the message.

I did however go to my pilates yoga mix class today, it was nice, I felt human again for a little while, I felt normal for a little while, I felt like me for a little while. It felt good, I need to capture more moments like that.

Hitting hard tonight

Its hitting hard today....I'm sitting down trying to figure out some ALS stuff, insurance, record keeping etc and it hit me, I'm helping my mom die...not in the Dr Kavorkian sense but I'm helping her get her things in order so she can die...something that I never thought I'd do, well not before turning 40 anyway. The other day I saw two old ladies together and realized that they were mother and daughter and it hit me that that will never be me and my mom....

My mom is getting ready to tell the rest of the family this week, her brothers and sisters....each time she sits people down to tell them it becomes even more real. I don't think I've ever felt pain as acute as this in my life. I'm so lost and my brain thinks two different things at the same time, it understands this is very very real and at the very same time its telling me that it isn't....its the most odd thing in the world, I've never experienced it before.

I spent last night pretty much in a daze, just totally exhausted all around. I couldn't show mom I was tired or she would have felt like a burden so I just collapsed when I got home. The physical tired is okay, its the emotional that drains you. Sometimes I wonder when I will feel okay again but then I remember nothing will ever be okay every again. Time lessens pain and you get used to the new normal but there will always be a gaping hole in my heart.

I put make up on and did my hair today, I have decided to try to do that everyday because its what I used to do and I need to try to bring around as much normal as possible. The make up may only last an hour before my tears ruin it but oh well.

I laid down last night to sleep and I couldn't make my thoughts stop, not even actual thoughts just still frames of my visit with her....its when I'm with her that things become even more real. Emotionally things get harder and I wonder how it will be when I am with her almost constantly....despite how hard it is and how exhausted I get I wouldn't trade my time with her for anything. I know I will look back on this time together fondly one day, I will be glad that I did everything I could and spent all of the time I could with her.

I spent hours online looking for pants and jeans that had elastic waists that she could get in and out of easily and didn't look like grandma pants. I was pleasantly surprised by the options out there! Gloria Vanderbuilt, Lee, JAG (expensive but awesome looking) make awesome jeans with elastic waists that you can't even tell are elastic, they have a faux fly and look like regular 5 pocket jeans. Macy's also has some great elastic work pants that look awesome too....hell , I may look into those elastic waist jeans! Not even joking. So my brother and I got her 3 pairs of work pants and 2 pairs of jeans for Mother's Day and I picked out a bra with Velcro for her since she can't fasten a bra....it's ugly as hairless kitten I swear.....its SO bad.....I am going to figure out a way to find a cute bra that she can still fasten because us women need to feel pretty!

I came down to my moms last night to stay over and help her with some things around the house and sorting through belongings to decide what she wants to get rid of. I got here yesterday and my brother and his girlfriend where here so her mood was better than it had been earlier in the day. We all went through the packet that we got from the ALS clinic together, had fun picking out the typos and had each other rolling with laughter...our sick and twisted humor is our coping mechanism. Once they left we talked a bit and she took a nap, then my Aunt and Uncle came so we ate the lasagna I made and sat around talking all night, feeling fairly normal. This morning was a different story however, I think her mornings are the worst and those are the times she breaks down. When she can't do the smallest thing like shaving that those of us take for granted, when someone has to help her pluck her eyebrows because she can't, when taking a shower leaves her exhausted. She cried and cried, the reality of it all hitting her and we sat cuddled up on the couch together crying. Eventually we dried our tears and got back to business, spent an hour and half going through things before she needed a nap. Now I am trying to summon the energy to get up and clean her bathroom while she is asleep. I am emotionally , physically and mentally drained an exhausted. Besides dealing with my own grief from this I also deal with a few different auto immune diseases, some other conditions and pseudotumor at the moment which isn't an actual tumor but there is too much pressure on my brain from spinal fluid which tricks my brain into thinking it has a tumor so I have the same symptoms as someone with a brain tumor, plus I have a husband with his own health issues thanks to the war in Iraq and I have a young daughter.....I'm going to need to learn how to balance it all but I have no idea how, how, when I leave here so drained do I go home and be a good parent rather than a parent who when her daughter says "its not fair" wants to shout back "lifes not freaking fair!"

Nightmares

Last night I dreamed for what seemed like hours about my mom dying, her small crumpled form....I can't even describe it. I woke up drenched in sweat and have started my day with a very very short fuse. I have no patience and everyone is pissing me off....it doesn't matter if they are asking me if I need anything, I want to bite their heads off and spit them out....I know this is not okay albeit perfectly normal. I know I don't want to get angry and hurt the ones I love but I don't know how to curb it...

I need a plan, if I had a plan I'd be okay, its this flailing around feeling helpless that I can't stand. I need someone to tell me exactly what to do to take care of her, to take care of me....but no one can tell me because no one is the same. I know I am supposed to take care of me so I can be there for her, eat right, exercise, take time to do things for myself but I don't even know what things I need....

Today just feels like a cyclone of everything and nothing all at once.

Distraction

My husband's family came up for a couple of days, it was a very nice distraction, it was nice to laugh and feel like life was normal even if it was fleeting. Now I am completely and totally exhausted but thats good, maybe it means I will sleep well tonight.

This weekend I am going down to my moms, going to help her organize her medical records and important information. She also wants to start clearing out her house of things she doesn't need. We know of course that she isn't going to die tomorrow but we don't know how long she will have the use of her hands and other body parts so she wants to get it done now. I'm going to attend to her beauty needs such as plucking eye brows, good thing I'm holding no grudges against her because I could go all Mama Burke on her (Grey's Anatomy reference for those who don't watch)

I'm also going to get a tattoo that reminds me of her...when I first started getting tattoos I just picked ones that I thought was pretty, however as I get older I pick ones that have meaning, that represent big things in my life. People often say "do you know how bad those are going to look when you are old? You are going to regret it" but I don't think I will. I will look at my faded , saggy marks and be reminded of the hell of a ride my life has been, the good times I have had and the sad times that I have overcome.

Please, please make it stop

I want to scream HELP but I know that no one can, nothing can change anything, this is real and nothing can change it, there is nothing I can do.

Sometimes I forget,sometimes I remember mentally but emotionally it doesn't hit me, denial I suppose. But what brings me back are her emails, emailing about the upcoming ALS clinics appointments, about eating high cal high carb because she needs to stop losing weight.....some are mundane every day emails about every day things, it doesn't matter what its about, or if its just a one word email, I save each and every one of them in a folder labeled "mom" because one day the emails will stop coming, I may send emails but they will never be read, never returned....just my thoughts and words sent out into the void.

I just can't make it real, even when it hits me like a load of bricks and I am sobbing, still, even then it doesn't feel completely real.

I find myself trying to think about what will make me feel close to her after she is gone....I have no idea what it will be....I have already found where to buy her perfume that she wore when I was little, a scent that I will always associate with her. I'm trying to find any way that I can to preserve her, memory books, pictures, a way to record her voice because time will steal it from me. I send her questions through email, anything I can think of that I want to know because one day she won't be there to answer....I wish I had asked my grandmother why she called cottage cheese hoppy cheese...will never know now.

I feel like I'm pulling her closer all the while knowing this is the beginning of our goodbye.

Is this real?

My make up last a whole half a day today. I feel like I'm just going through the motions, cleaning, cooking etc but my mind is elsewhere. Anticipatory grief is a bitch. I sat the in the patio area today, the exact same spot we were when she told me and I tried to imagine what life would be like without her, sitting in that spot knowing that she no longer existed in the world....there are no words... It's amazing how many things seemed so important before, so many perceived slights that I felt she made towards me, even valid things, they no longer matter, they are so very unimportant. I would live all of the hurts infinitely over if it meant she would live. But she won't, there is nothing I can to keep her here. I grieve for so many things, so many things that will never happen, she won't see my brother's kids born, she won't see my daughter go to prom or graduate or get married. So many moments of my life I had counted on her being there to get me through, to give me advice and she won't be there.

How do I do this? I do I exist in a world where she does not?

Good Day

Today was a good day, I woke up feeling okay. I wish I could say some divine entity wrapped me in a warm blanket of light and peace but honestly I think that now that the shock has worn off a bit of denial has set in. Not denial like it isn't happening....perhaps not denial at all, more like numbness, detachment. I think my mind just couldn't handle anymore so it took a break. I am able to talk about things that need to be done and make plans without emotion. I haven't cried once today, I am thankful for that because I know that it won't last. I've been looking at different things that insurance won't cover that I want to save up for in order to let her live independently for as long as possible. An electric jar opener, a Roomba etc. It sucks not living in the same town but at least I'm only an hour away versus 14 hours with my dad.

My brother and I are planning a BBQ for Mother's Day for her. Lots of high cal high carb foods since that is what she is supposed to be eating....its definitely going to tempt me to break weight watchers for the day...wait, maybe calories don't count on Mother's day. I definitely broke my diet the last two days, an emergency slurpie followed by rum and coke and the next day a full party size bag of m & m's.....Oh well, these things happen...back on the wagon today.

My family and I are handling grief differently and its hard. They are still holding on to hope for a second opinion....me? I'm just planning for the long road ahead, I don't have hope, that sounds grim, I know. But I'd rather deal with this situation and then if by some miracle the second opinion brings a better diagnosis then it is a wonderful, amazing gift, if not then I won't grieve all over again. People call me a pessimist but I think I'm a realist.

Random Thoughts

Who is going to be there when I can't figure out how to make my crock pot recipe work right?

How do some people go through life so unscathed?

Why can't I wake up from this nightmare?

How do I go on without her?

The Worst Day of My Life

Yesterday was the worst day of my life, people use that term a lot, loosely, but I mean it literally, it is the worst day I have ever had in my 38 years of life. My mother took the day off from work and drove up to my house....its a day I will remember forever, one of those days I may not remember what I was wearing but I will remember where I was, the temperature of the air, the breeze on my skin, it will never leave me. My mom and I sat outside in my patio area, she had barely sat day when it came bursting out of her. She got a diagnoses the day before, she had ALS...apparently I screaming "are you kidding me?" as I launched myself into her lap that start sobbing, the sobs turned into anguished screams and pleading, to who, I don't know....I'm amazed the neighbors didn't call the police.

The troubles started months ago, five months to be exact, she started having trouble with her hand, she thought perhaps she screwed up a nerve, then it spread to her leg on the same side, she started falling constantly because her toe would drag. The doctors office dicked around getting her into a neurologist and because of some metal in her body she couldn't have an MRI. So the diagnoses took longer than it should have...I knew something was wrong, terribly wrong but I never in a million years thought that it would be something that was 100% terminal, I thought even if it were something awful like a tumor there were therapies and she had a chance at living....

Its funny, not in a haha way, the things that go through your mind when you get devastating news..as I cried and howled I thought, I'm not going to have a mother anymore, how am I going to live without a mother, how am I going to get my daughter through this, oh shit, I have to cancel my hair appointment....seriously, I'm not joking...a hair appt lol.

So why blog about this terrible, private matter? Well, writing for me is therapy, it helps me get things out that I necessarily don't want to talk about or say out loud or what another person's opinion on...I just need to get it out. Also, ALS is rare, about 6,000 cases a year diagnosed with it in the US....there isn't a lot of support out there, if someone has cancer chances are you have a friend who has been through it or been through it with a loved one but with ALS its hard to find another person who has been through it. So I figured that now or in the future someone else going through it might find the blog and take comfort in my words. I haven't told my friends or family about my blog and I don't know if I will, for now its just for me.