Mom and Me

year marks the 20th anniversary of my mom's diagnosis of Multiple Sclerosis.  Since her diagnosis and in particular the past few years I have really gotten to know my mother in a way that I had never imagined.  The mom I know and love today is the complete opposite of who she was 20 years ago.  In many instances I am grateful that she is different and does not remember who she used to be.

As I was preparing to write this post I realized that I have talked about my mom A LOT.  Here are a few examples:  Preparing for the Inevitable, Note From Mom, Normal Life, Honor Thy Mother.  I noticed a theme within these posts,  that most of the time I was complaining or frustrated.  Now, don't get my wrong, I am not going to apologize for it.  This blog is about openness and honesty.  Being a caregiver is a big responsibility.  Being a caregiver at an early age is also a unique circumstance.

Despite all of my complaints and frustrations, as I look back I am realizing that my mom is pretty awesome.  In many ways my mom teaches me how to be the type of person who I want to be.  I think sometimes I am moving so fast that despite her deficiencies that she is not a hindrance in my life, she is actually invaluable.

My mom is probably one of the most caring people I know.  She loves to give people cards.  I hate cards so I have not adopted this practice of hers.  But she is always right there with a card for someone for any occasion.  Whether it is a birthday two months in advance, Christmas, St. Patrick's Day, a friend's daughter, or even just once in awhile a card to encourage me through my struggles my mom is there with card in tow.  She teaches me a lesson that sometimes I think I am giving a lot of myself, but maybe I am not really giving very much at all.

Mom also is a fan of giving gifts.  Despite having a very limited income mom always manages to give gifts to friends and family.  A lot of the time I don't know where she gets the money for the gift, where it is coming from, or where she bought it from, but she never fails to celebrate a birthday.

She is very outgoing and friendly.  She always asks my friend how her son is doing.  Which says a lot that she remembers that she even has a son.  Much to my dismay she is constantly striking up conversations with strangers.  And whenever we are out around town she always runs into at least one person she knows who is so excited to see her (despite the fact that she might not remember who they are).  Now this, I know I have definitely inherited from her.  So I guess I understand how my friends feel when I strike up random questions lol.  She is also very funny, although sometimes I don't know if she means to be...

Most importantly, my mom loves me.  She loves me even when I am not at my best.  And she tells me she loves me.  This is huge.  I did not grow up in a family where we said I love you a lot.  We did not hug and kiss each other.  But now, with her MS she always expresses her love.  Sometimes she watches me when I am asleep, or she just wakes me up to ask if I am ok, both of which are creepy but I know that she is coming from a good place.  I know she is not doing this to annoy me, but because she loves me.

So yeah despite her flaws my mom is pretty awesome!  And if you know her you will agree to.

Mom and I will be walking in the MS Walk on April 26th!  Well correction, I will be walking, mom will be pushed in a wheelchair.  If you would like to donate to me or our team, Team Bonbon please go Donate to MS Walk 2014

Preparing for the Inevitable

Between my involuntary vacation and the snow and ice days I have spent a lot of time with my mom in the past few months.  And it is call becoming much more clear to me that I need to start preparing for the inevitable...

My mother has Multiple Sclerosis.  This shouldn't come as a shock to most of you.  She was diagnosed when I was in middle school so you know that was a LONG time ago (but not too long lol).  Anyway, since she was diagnosed I have witnessed the gradual progression of the disease.  For my mother, her first symptoms were weakness in one half of the body.  Today the manifestation of the disease has affected everything from the way she walks, to her daily bodily function, her personality, and her memory.  In fact of all those, who memory is probably the worst.  It is probably her lack of memory that hurts the most.

 Her neurologist, who I love dearly, once told me that in 10% of MS patients that their biggest problem is cognitive functioning.  In my mom this is true.  For years my mom has not been able to hold down a job.  Her writing skills have diminished.  She doesn't really have an attention span to sit and read for long periods of time.  In fact, doing anything besides watching tv is hard for her.  She has to be given very simple instructions over and over again.  Many times writing things down for her is the best way for her to remember.  Now I have noticed that she has trouble remembering certain words and her speech is regressing.

Long term, short term memories they are all pretty much a blur to her at this point.  She has asked me which high school she went to and what her wedding date was.  She doesn't remember much of my childhood much less her own.  She can barely even remember what she had for breakfast.

It is hard for me.  It is hard trying to be four steps of anticipating someone else's needs.  It is hard to hold the memories for two people.  I sometimes find myself getting nervous with my own memory issues.  I worry that the few times I miss and exit are a sign that I too might have MS.  I mean what would happen if I no longer can take care of my mom, who would take care of her?  Of me?

So I know I need to prepare.  I know I need to get used to the idea that my mom is going to keep getting worse.  Part of it is just mental.  As the days go by my mother is more dependent on me.  She seeks me as her financial adviser, her friend, her girlfriend, her companion and sometimes all of that is too much for me to handle.  Sometimes I just wish that I was a daughter and she was a mother.

Sometimes I feel guilty for feeling this way.  My mother is a wonderful woman.  MS has made her such a sweet lady (before that I can't say the same).  She is very caring of others.  She can be funny, even when she doesn't mean to be.  She can be a little feisty as well.  I love my mom and she did so much for her.  And I feel guilty that I am not providing the best of care for her.  I feel ashamed that I lose my patience.  I am sad when I don't have more understanding.

I know I need to physically prepare as well.  Right now I am living with family.  What am I going to do when I move out and it is just myself and her?  What am I going to do when I am at the point when I can't take care of her on my own?  All of these thoughts are running through my mind when I don't even have a steady job myself.  Sometimes I am worried about her needs when my own life at times feels as if it is in shambles.

I am scared.  I am nervous.  I am frustrated.  I am exhausted.  But having all those feelings, experiencing my anxieties is natural.  Venting is ok.  But in the end she is still my mom, the woman who raised me.  She is still my responsibility.  One way or another, I am going to have to find a way to make it work, for her, and for me.

***For more information on Multiple Sclerosis please click here.