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.
Thursday, April 28, 2016
Wednesday, April 27, 2016
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.
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.
Monday, April 25, 2016
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.
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?
How do I do this? I do I exist in a world where she does not?
Sunday, April 24, 2016
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.
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.
Saturday, April 23, 2016
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?
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.
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.
Subscribe to:
Posts (Atom)