Tag Archives: family

Listening and Loquats

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I take for granted my ability to just straighten things up or do things around the house.  My ability to have a “to do list” that if I avoid procrastinating I can get everything done in a timely manner.  It isn’t until I go home do I realize how much I take this for granted.  As a woman your natural instinct is to make things presentable and as a Mom even more so.  I think this is why Mom gets even more frustrated over the “chores” around the house that she can’t do.  The past week she was upset because her loquat plants were overgrown and needed to be cut back.  She had no way of getting to them because if she got out there with her walker she couldn’t balance to cut them. 

So yesterday Sister K went home just for the night.  She had to pick up some things and was there less than 24 hours.  But Sister K didn’t just go home and sit around and relax.  We both have realized there are certain items Mom mentions that she really needs help getting done.  Certain items that are just going to make her feel better knowing they are accomplished.  We also know that if we don’t step up to do these things it will all rest on Dad’s shoulders in addition to the other things he does. 

So Sister K stepped up.  She ran some errands to a craft store to get some supplies Mom needed, she painted Mom’s toe nails (this is their thing, everytime Sister K comes home…and it’s sweet) and she cut back the loquats in the back yard.  Just knowing how much these specific items mean to Mom I know she is already feeling better about life today.  Sister K didn’t leave empty handed either, Mom sent her home with some tuna salad she got up early to prepare.  A way Mom can still be Mom, sending us home with food after our visits. 

We are learning that we need to help around the house in ways we might have overlooked before or in ways we might not have needed to before because Mom did those things herself.  We also need to listen to what Mom needs.  We need to listen because we can’t do everything but we can do a few things that will lift up her spirits and make her feel accomplished.  Feel accomplished in the same way I feel when I have crossed off the items off my “to do list.”

Music and Me

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I by no means consider myself a connoisseur of music or would I even say I have good taste in music.  In fact, I am often made fun of for my taste in music.  My tastes range from pop to country.  Usually the faster and more upbeat, the better.  Sometimes I enjoy slower songs I can relate to the words.  I love the disco era and often believe I was born in the wrong era.  I like music I can dance to and music that brings me up.  I also like songs I can relate to with an occasional slow tune. 

I think I get this from my family, specifically Mom.  We are a dancing family.  I love to dance therefore I love music I can dance to.  Recently there have been a couple songs I have been really into for different reasons. 

One Direction “What Makes You Beautiful” In case you don’t know who they are, meet One Direction, the new boy band sensation.  As a person who was a full blown New Kids on the Block, Back Street Boys and NSYNC fan, One Direction just represents all that I love about music.  And all that I typically get made fun of for music.  As this band played on Saturday Night live this past weekend Sister K and I staged an impromptu dance performance in the living room while Mom sat in the ktichen laughing at us.  Mom had been in pain from her spasticity so it felt good to see her laughing so hard and to be the reason for that laughter. 

Maroon 5  featuring Christina Aguilera “Moves Like Jagger” When I heard this song and Sister K began declaring she wasn’t as into it as I was, I knew there was someone who would be, Mom.  It played on tv one night as I introduced it to her for the first time. Now whenever she hears it in the car, we refer to it as Jagger and she even has Dad into it.  She’ll be sitting down using her hands and singing the words to dance along.  We are working on a coordinated routine between us that involves sitting.  Thanks to music and songs like this I know for a few minutes she’ll be happily lost in the song with her mind absent of stress and body absent of pain.

Blake Shelton “God Gave Me You”  I have heard this song several times.  I’ve heard it on country stations and on Christian radio stations.  Everytime I do I think of someone different in my life- Husband, Mom, Dad, Sister K- I think of family.  It is a song I can get lost in. It makes me pause and reflect.  It makes me be present.  It makes me thankful for the people I have in my life even when circumstances aren’t exactly as I wished they’d be and I can always work on being more thankful. 

Are there any songs you relate to right now for silly or serious reasons?  Any memories you have tied to songs that always bring a smile to your face?  Do you also agree I have bad taste in music like most other people in my life? 🙂

Finding Strength

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I am 27, my sister is 25.  We are handling a situation with our Mom that most people our age will not handle for another 20 years or so.  When they do their parents will most likely already be grandparents.  Sister K and I barely know who we are as adults.  We are still trying to settle into being adults, still trying to deal with the life changes that occur in your 20s post college, still trying to figure out who we are and how to function in this world.  I have been married just about a year and a half and am still trying to figure out being married.  Sister K is working on her Masters degree and looking for jobs.  But we aren’t having a chance to completely process all of these changes in our lives.  There’s not a lot of time to deal with it or a lot of space in our minds.  Instead we are being handed the ultimate in responsibility people go through in life, caring for a sick parent.  We are watching Dad become a caregiver at a time when we thought we’d be watching our parents travel the world.  We are seeing changes in our parents’ lives, seeing changes in them as people and seeing the changes in ourselves. 

Sister K and I argue about the best approaches with Mom.  We defend different issues.  We take turns defending Mom, defending Dad, defending life, defending our approach.  We are trying to get on the same page, really any page we can figure out.  Most of the time we find a page, but we aren’t perfect.  We both still feel like kids.  In a sense we are.  I know we are 27 and 25 but we both feel like we are only 7 and 5.  Mom was supposed to be immortal.  If issues like this were going to arise we thought we had many years until they did.  We have been handed a circumstance that would shock most people if they knew everything.  But they don’t.  We deal with most of it on our own.  Together, but on our own. 

What have I learned in all of this?  Sister K is the greatest gift I was ever given.  The gift of not just any sister, but my sister gives me strength in all of this. There is no way I would survive this without Sister K.  I am aware of that everyday.  She is the only person in the world who truly gets what I am going through.  She understands every issue, every fear, every thought becuase it’s her Mom too. In moments where I look at who we have become and our relationship, I wonder if God has been preparing us for this moment our entire lives.

Looking Forward

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Today I am excited.  I am excited as I always am to be going home.  But today especially because we are all piling into Sister K’s car and heading home to celebrate Easter weekend.  I love this time.  Time spent in the car with just Husband, Sister K and me.  Moments of laughter, usually courtesy of Sister K, teaching Husband about Back Street Boys or NYSNC, or sometimes even deep conversation that surprises us all.  We have become quite the trio since I got married and that’s in large part thanks to Sister K.   

Another reason to be excited, today I get to see Mom. A big “Mom hug” awaits my arrival.  The kind of hug that makes everything better.  Looking forward to a weekend of laughing and talking and teasing Mom as all sisters do.  A weekend with my favorite people.  A weekend with my best friends. A weekend with family. 

Mom, Sister K and I have big plans for shopping Target to be exact.  Sister K and I are trying to think more outside the box than our usual mall spots because Mom is more relaxed and able to do more when we go somewhere that offers scooters.  Target is always a great option.  We’ve always found a way to get lost in Target for hours and leave with lots of things we don’t really need.  Plus have you seen this Target commercial ….it just makes you happy.  It also makes me want to go buy lots of bright colored clothes.  I emailed it to Mom and Sister K to get everyone pumped up for our weekend together. 

So today I am looking forward.  Looking forward and feeling happy.  Wishing everyone a very Happy Easter Weekend!

25 Things

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As I write this blog about my experience dealing with Mom’s MS I am showing a glimpse into our relationship.  But this is a relationship that has existed for 27 years and is in no way rooted in memories of Mom having MS.  Thinking about that fact I came up with 25 things (based on the popular 25 things on facebook) I want to share about Mom and me that are unrelated to having MS:

25. We met for the first time in Europe.  I was born in Heidelberg, Germany where Dad was stationed in the Army.
24. Since I am the oldest I lived 2 1/2 years of my life having Mom all to myself.
23. Mom loves to dance just like me.  She danced in our dance recitals when we were little in an adult ladies class and when I was 7 we did a Mother/Daughter routine together.  I thought I was so cool.
22. Mom and Dad went on glamorous dates when we were little.  I remember them leaving in tuxedos, military dress uniforms and Mom in beautiful dresses and jewelry. 
21. When Sister K and I were little we did baton twirling.  Mom would help us practice our routines, recording music on cassette tapes and counting for us during practices outside in the backyard.
20. Mom let us take over the living room with our toys and our “dining room” was Barbie Central in our house.
19. Mom was the one who always pushed me when I was scared.  She pushed me on a plane to Washington, DC when I was 17; She pushed me into my dorm room when I was 18; She pushed me on a plane again when I was 21 to study abroad in Europe for a month.  She never shed a tear in front of me for any of this but Dad said she always did once I was gone. 
18. We had an amazing trip to San Diego one time while Dad was working at a conference there.  Mom, Sister K and I explored the city together not knowing where we were or and making up plans to see things as we went along.
17. Mom was room mom for my class every year in elementary school.
16. Mom attached all my sequins for dance recital costumes on with a hot glue gun.  She believed you could solve all of life’s issues using a glue gun. 
15. Mom threw some great birthday parties for us at Chuck E Cheese.  
14. Mom loved and still loves to buy us clothes.  We love this about her, so does her VISA card.  
13. During my wedding Mom was my biggest cheerleader.  She flawlessly planned it all.
12. I bought the wedding dress that made Mom cry.  That’s how I knew I made the right decision.
11. Mom loves silly stories.
10. Whenever I have a story or comment to share I know I can always call Mom and she will laugh and listen.
9. Mom is our biggest role model.  For Sister K and me the only reason we ever did certain things was because Mom did.  
8. Mom drove us everywhere in a blue Dodge Caravan.  We practically lived in that Caravan my entire childhood.  
7. Mom and I love to watch chick flicks.  No matter how cheesy, movie theater or tv, we love them all. 
6. Mom’s friends love her.  They want to be around her and include her in whatever they do.
5. Mom is always the best to cuddle with on flights.  That’s probably why Sister K usually always sits next to her.
4. Mom makes us listen to Christmas music nonstop when it’s on the radio at Christmastime.
3. Mom is thoughtful and always gives thoughtful gifts.  She loved making us care packages at college, buying us treats to take back after a visit home and even buying us a Christmas tree for our college dorm rooms.
2. Mom, Sister K and me are best friends.  You mess with one of us you mess with all of us. 
1. A hug from Mom makes everything better.  Always has. Always will.
 
I wrote these things down because I need to remember them.  I need to focus on them.  These things describe Mom and they have nothing to do with MS.  These are the stories, the memories, the moments that we have shared and continue to share that have molded and created our strong bond.  I need to focus more on who Mom is without allowing MS to cloud my every thought associated with us.   Because at her core she is not Mom with MS she is just Mom.  Mo

Dad. Husband. Caregiver.

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I can’t put into words the love and respect I feel for my Dad. I believe deep down he is the reason our family is surviving Mom’s battle with MS.  I have watched and continue to watch a transition as my father has become a caretaker.  It brings back unsettling memories because I just watched my Grandpa go throught he same thing with my Grandmother as she battled Alzheimer’s.  I watched as he became a caregiver to her and feel now I am watching Dad go through the same transition.  And it is hard to watch. 

Since this transition began I have felt my mind sharpened to the reality of marriage.  My family is not large and up until I got married these two men, were the biggest male influences in my life.  They still continue to be large influences as well.  As I got married in 2010 and said my marriage vows, they really meant something very personal to me because I felt I was watchingthe tough parts of those vows lived out everyday.  I understood the meanings behind the powerful words “for better of worse, in sickness and in health.”  I understood the meaning of a committment and what it can mean through the tough times. 

But I struggle with Dad’s transition in becoming a caretaker.  He basically is one but I prefer to believe he is transitioning because it is difficult to think of Dad and Mom’s relationship that way.  It is something I never gave much thought and if I did think about it, they were thoughts that this would not occur for many years from now.  I also struggle because this level of responsibility and constant caretaking can take a toll on anyone.  Dad will talk to me sometimes about what is going on and I don’t know what to say.  I don’t know how to offer support.  What I want to do is pack up and move back home.  I want to find a way to be there for my parents all the time.  I want to help him with Mom, be an extra set of hands for him and just provide extra help.  But this hasn’t been in the cards for me up until this point and I don’t think it is. 

So what can I do.  I feel helpless again.  I continue to feel helpless.  I feel helpless because the best way to offer assistance in this situation is to be there. I also feel helpless because there is no way for me to be there except for brief visits home on the weekends.  In the past year my husband began graduate school for his MBA so we moved about an hour and a half away closer to my hometown.  We were 4 hours away before.  This was a step.  But without physically being there, how do you offer assistance.  How do you help someone who is doing everything and you are doing nothing.  And he does it all- he takes care of Mom full-time day/night and works full-time.  He balances both of those responsibilities and he never complains.  So I complain for him because I know he must be exhausted.  I know he must struggle.  How does he do it I wonder.  How. 

I think it’s love that makes him do it.  It’s love that keeps him going, keeps him supporting Mom. Love is powerful but is it enough?  I still struggle with how I can help him.  How can I be there for him.  Going home more weekends, calling to give him a sounding board to talk to, reassuring him that what he is doing is so important and we are all here for him.  The struggle continues and it’s something I think I will struggle with for a long time.  But it’s a struggle because of the love I have for my family.  It’s a struggle because I want to be there for them as much as possible.  So while it is a struggle, it is a struggle worth having and one I should feel fortunate to feel at all.

Weekend Lessons

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This weekend Mom came up to visit Sister K and me.  Dad brought her up Friday evening and my Grandpa tagged along for the ride.  On Saturday afternoon after the wedding shower Sister K and I drove Mom to meet Dad at a halway point.  A lot happened this weekend in a short amount of time.  We had incredible highs and incredible lows.  But, that’s how it always seems.  It was also a lot to process in approximately 24 hours of a visit. I plan to write more about the weekend and the lessons learned. For now, some general weekend lessons:

1.  Stress and MS are not friends.  Neither are helpful under a perfect scenario and together they are full blown enemies.  They antagonize each other and they do it at Mom’s expense.

2. I know MS is awful but I forget how much this has truly hindered Mom’s life.  How it has been a big blow to her plans and dreams for this stage in her life.

3. My family is full of not only love but committment.  Committment to Mom and committment that we will not allow MS to hinder her life or our family’s life anymore than it already has.

4. There is a big fear of the unknown for Mom. I need to find ways to eliminate that fear.

5. Laughter is an amazing medicine. It can calm nerves, make people smile and even eliminate pain for a brief period.

This weekend two things happened.  Simultaneously.  Without me being aware. My hatred for MS grew while at the same time my love, admiration and respect for Mom grew.   

 

Road Trip

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Mom is coming to visit tomorrow until Saturday.  We are going to attend a wedding shower for one of her college friend’s daughters Saturday.  Dad is going to drive her up and then head back home. She’ll stay overnight at Sister K’s apartment and then Sister K and I will drive her back on Saturday.  It’s easier to stay at Sister K’s because she has cement floors making it easier than carpet for Mom to roll around with her walker, and then it’s also just the three of us girls. 

We were on the phone today at lunchtime working out all of the details of this and who would drive up, back, etc. For a second I felt selfish.  I wished we didn’t have to orchestrate all of this. I wished a simple overnight trip didn’t require a big plan filled with coordinating cars and people.  But then I thought to myself, stop. Stop thinking these thoughts. Mom is here and fighting this disease everyday. I am also blessed by her fighting spirit everyday.

By planning a weekend trip with a few extra logistics, by not getting frustrated and canceling plans- that is how Dad, Sister K and I also fight MS.  We all have our role in this fight against Mom’s MS and it’s important we remember that always.

Fears and Lunch

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I call my mom everyday at lunchtime.  It’s our time and we fondly refer to this hour as “lunchtime chats.”  These actually started when I began my first job and realized I had a lunch hour everyday but not necessarily someone to spend this hour with.  My mom became just that person.  During lunchtime chats she hangs out with me on the phone while I run errands, order coffee, go for an afternoon walk or sometimes even eat my lunch.  Our conversations vary and I can usually tell by the tone of her voice, either carefree or a slight hint of stress that only a daughter could pick up on, how she is feeling on a certain day.

Today when I called she was a little uneasy.  A friend was coming to pick her up and realized her walker was in my Dad’s car and she couldn’t get ahold of him.  Mom also started talking about feeling nervous because she is just scared.  She didn’t say what she is scared of but I know.  We all know.  It’s a silent understanding.  She is afraid to fall and afraid of not being able to get up.

My mind almost felt paralyzed becuase I felt so sorry for her.  I wanted to fix it.  I wanted to solve this problem.  I wanted to say the right thing so badly.  This is the third day I have written these words and I am beginning to notice a pattern.  But I can’t fix it.  I can’t fix it because logistically I am not in the same city.  I also just cannot fix this.  I also had a hundred thoughts flooding my head because I didn’t know what to say.  Do I try to comfort my mom, I tried rattling off the list of her worries and discussing each one but I knew that fear in the back of her mind was too great and preventing her from being rational.  So instead of drawing it out and making both of us frustrated I got off the phone.  It ended pleasantly, I told her it would all work out and not to worry.  I did this because all I could think was I don’t know what to say or do, I should probably just get off the phone before I end up frustrated and stressing her out more.  It has bugged me all afternoon because I don’t know if I did the right thing but I also don’t know that it was the wrong thing. 

My mom’s fear of falling is very real because it has happened.  I can feel her uneasiness when we are out in public, I watch as she is very careful and very focused, not moving too quick, making sure every movement is calculated.  I can feel it and it makes me feel sad.  Sad because she is sad.  Sad because her life has changed.  Sad because I can’t fix it. 

But, I can continue to be there.  Continue to have our treasured lunchtime chats and continue to talk about these things and help as much or as little as I can.  Maybe I help more than I realize.  It’s interesting how I never know when I am successful in helping but always definitely know when I am unsuccessful.  I come from a loud family of all girls. There is never a question if someone is unsuccessful in helping.  Everyone knows because they can hear it!

Fashionably Late x 2

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My family has always been late for things.  For as long as I can remember punctuality was not a characteristic that people would use to describe us.  It was never done in a rude fashion, but just about 5 to 10 minutes behind schedule.  I say typically because it was selective.  We were on time when it really mattered for things like school, dance class, weddings, etc.  Things where punctuality was important and necessary.  Now that my mom has MS our tendency to run late for things has taken on a new life of its own.  We operate on a completely different time schedule, usually running very behind. 

It’s not all my mom’s fault, I can’t completely blame her at all.  Let’s take Christmas 2010 for example.  I have always had a bad habit of biting my nails but I finally grew them out for my wedding…and so I could wear dark nail polish for Christmas.  As we were running around trying to get out the door for Christmas Eve mass I realized I had forgotten to paint my nails.  At this point my dad was running around looking for the checkbook, mom was making sure everything was in her purse and my newlywed husband just stood there in awe of this.  This is because his family runs 10 minutes early to everything, but I digress. We had about 3 minutes before we were walking out the door.  My sister looked at me and said we’re going to paint them, grabbed her nail polish and we did it.  We put my hands on the kitchen counter and with 3 minutes to walking out the door she painted my nails.  They were drying as we arrived at church. 

I bring this up because it makes me laugh but also because my family is having to learn to be a little more organized to get out the door now.  I also have to learn to be okay with the fact that we do run a little later now.  I have a slight Type A personality when it comes to these things.  I don’t mind running a little late but I have a point when I decide it’s too late.  It’s a basic formula for my meltdown: Getting out the door drags on for various reasons that don’t relate to my mom (forgetting keys, forgetting garage openers, forgetting sunglasses) + my mom needs extra time = me putting stress and pressure on my mom in the situation.   

The reality of the sitaution is the world is not going to end if we are late.  We will get there when we get there.  We are not going to be in trouble if we are late.  One of my college best friends used to say “what are they going to do?” and that’s the attitude I need to have.  I need to repeat these statements over and over.  Over and over.  I need to have them screaming in my head in these moments, drowning out whispers of stress as I begin to pass the whispers on to everyone else.  Instead I need to take a mental step back in these moments.  I need to help where I can but I also need to treasure the chaos, treasure these moments.  Treasure that we are all together piling into our car to go somewhere the same way we have done all my life.  We are all together in these moments.  I need to focus on the moment and enjoy being fashionably late x 2.