New Year’s Day is usually synonymous with optimism for the new year, resolutions, relaxing, organizing, and enjoying a well deserved day off. This was my plan heading into 2014 but I soon realized that was not how I was going to spend the first day of 2014.
Husband and I traveled home to be with my parents for New Year’s Eve because we had a wedding for a family friend to attend. We were running late as usual because it takes Mom a long time to get ready. It then takes a long time to get in the car. And as I watch Dad do this I fear every time he is going to hurt himself. We missed the ceremony but showed up in time for the reception. I watched Mom as she repeated herself several times about a group picture she wanted to take. Not repeating to make sure it got done but repeating to because she thought it was the first time she said it. I started to cringe a little bit. We then had to maneuver her around across cobblestone rocks that hurt her legs. We then had to find a good spot inside for her to sit. And the list went on and on. I sat there at the table just kind of tired and mentally out of it. Thinking these used to be fun and care free events for my family and now they just aren’t.
But we rang in the New Year at home with Mom and Dad. We had champagne and chips and queso. Husband and I opened belated Christmas gifts. It was a nice ending to the year.
New Year’s Day was frustrating though. It was frustrating because Husband and I had planned to get up and leave early. I quickly realized after waking up that wasn’t going to happen. It wasn’t going to happen because Mom had invited Papa over for a big spaghetti lunch. She kept saying Dad could take care of getting everything ready but there was no way Dad could take care of everything because he was busy taking care of Mom. A whole separate issue going on right now too. I realized I had to stay. I had to stay to get lunch fixed. Mom had envisioned this lunch in her head and even though I felt it was unrealistic, it was too late and I needed to execute it. So I did. Husband and I stayed around and didn’t leave to drive back to our home until around 4 getting home around 7pm.
I felt happy I could step in for my parents and help them out. I also felt frustrated I had to step in to help them out. I also just felt defeated. I feel defeated by MS right now. I feel angry it is in our lives. I feel helpless about what to do. I feel sad for Dad and everything he is going through as Mom’s caregiver. I feel clueless about where it is going. I feel hopeless and then I feel guilty for feeling hopeless. I feel selfish for saying I miss Mom and I miss the way things used to be. I am feeling a lot right now. I don’t understand what 2014 holds. I know where we were a year ago and I know where we are today. I don’t know where we will be tomorrow. I am trying to take one day at a time but it’s hard. It’s hard when you can’t see a light at the end of the tunnel. You just see another day in the tunnel. And I am worried that 2014 is going to be a year of tunnel-filled days.
Wishing you health and happiness in the New Year! Thanks for sticking with me through 2013!
There are two sides to MS in my life- there is what Mom is going through and there is what Dad is going through. I see both sides. Or I should say I hear both sides. More specifically I heard both sides on the phone yesterday.
Mom is in pain. A lot of pain. She is also pretty much bedridden right now. It’s the first time I have said it that way but that is what it is- Mom is pretty much confined to her bed. Her physical therapist has recommended she possibly go back to the rehab facility she was in post-hospital in May 2012. She thinks it will do more for Mom than she can do with just a couple hour visits a couple times a week. Mom feels helpless. Mom feels bad for the burden she is placing on Dad. She feels sad that this is happening. And I get it.
Dad is overwhelmed. Rightfully so. He is going nonstop these days. He does have someone in our house both during the day and at night to help Mom. But on the weekends he is on his own. He’s also just mentally going nonstop. Running his company. Running our house. Also managing Papa’s life. It’s a lot. I have known this for awhile and unfortunately instead of getting better with the addition of help in our house it kind of seems to just be a small band-aid.
But for the first time I really didn’t get overwhelmed/depressed/stressed by this. I listened to Mom and talked to her. I listened to Dad and talked to him. Then I got off the phone and just sort of let it all just settle into the back of my mind. I am not avoiding the issues but I am also not focusing on them. I am beginning to believe we are reaching a cross roads with all of this. A cross roads which I am not sure what the result is going to be because for once I am finally admitting I not only don’t have control but I also can’t fix it. The two biggest things I struggle with I am slowly realizing to let go of them. Call it growth. Call it faith. Whatever it is, I need to trust it to guide my family and me through the challenges we continue to face.
Thanks to this place for listening. And thank you for being a place for me to share my struggles. I think I have experienced this little thing called growth thanks to this other little thing called my MSRecess.
Have you ever had a challenge or struggle that you finally just let go of? Have you ever experienced issues with trying to control or fix things in life and finally realized you just can’t? I’m not an expert yet but I hope I am slowly getting there. I’d love to hear your tips when you feel challenged by life.
This is a post I wanted to do last Friday but you know, life happened, work happened and here I am doing it 10.29.13 instead:
Mom’s birthday was Friday. It had been a long week and I bribed myself to get out of bed with Starbucks. Desperate times call for desperate measures.
But I called Mom in the morning on my way to Starbucks to tell her happy birthday. She picked up the phone and I shouted HAPPY BIRTHDAY. She thanked me, we small talked for a minute but I could tell something was off. Something was wrong. And then she said “I’ve had better”…and then started opening up to me more and started crying. The nurse that takes care of her overnight had found some bumps on her arm that she thought were actually a rash that was contagious. Mom had some flaky skin on her legs as well and they weren’t sure if they were related. Mom was frustrated because she is wearing compression stockings all the time and figured it would probably be the reason for the skin irritation, not a rash. It was all around awful. Dad got on the phone briefly to say Mom’s day nurse was taking her to the doctor at 11 that morning. Mom also had plans to go out to a birthday dinner with friends and that was in danger of being canceled because of this rash. It was awful. Mom was upset. And I felt so overwhelmed with sadness and defeat that there I stood in a line for Starbucks on a Friday morning with my eyes filling with tears. This was unfair. It was amazing to me that it was a Friday morning, a happy time because the weekend is about to start, I was in Starbucks waiting in line for my favorite coffee and I was overwhelmed with sadness that was slowly turning to anger.
I got in the car to drive my very short drive to work and I just yelled WHY WHY WHY WHY WHY WHY WHY WHY. LEAVE MY MOM ALONE. CAN’T YOU LEAVE MY MOM ALONE.
That was the gist of my conversation with myself in the car. Then I got to go into work.
Fast forward to 11am, I got a text from mom that said the words “just dry skin.” As it turns out the doctor told Mom there was no rash and it was just dry skin. As I chatted with Mom over my lunch hour at 12 I told her, I think we need to have a birthday redo. I say we ignore this morning, and officially restart your birthday at 12:00 today. She thought that was funny and we went on to have a really nice conversation. Mom was alert, we were communicating well with each other and it was just an overall good conversation. It made me thankful and amazed at how the day turned around. It was something I wanted to remember.
But I guess in a lot of ways that is life and that is what makes our days- the days that I am supposed to be taking one day at a time. On this particular day I felt every emotion possible and I felt them all before about noon. What did I learn? Sometimes you need to sit in the car and scream. Sometimes when you stand in line at Starbucks you have more on your mind than your coffee order so be kind to the people around you because you never know what’s on their mind as they wait to make their coffee order. Sometimes you need to press restart on your day and just move forward….whether it is your birthday or just another regular day.
Happy Birthday Mom! I am glad you had a great day filled with a fun dinner with friends and topped off with three free desserts from your favorite restaurant!
Have you ever had to press restart on a day? Have you ever screamed in the car? Do you ever bribe yourself to get out of bed and start your day with a Starbucks drink?
This past summer Husband and I moved to a new city. In the midst of a new city, starting a new job, unpacking in a new apartment…I was a bit on new overload. One of the only things that was stable was that I could run. Then all of a sudden I started having this sharp pain in my knee as I ran- a pain that tells you something is wrong. I thought I’d torn my meniscus, Husband thought I had tendonitis and after getting to find an orthopedist in a new city with my new insurance, I was told I had IT Band Syndrome. What?
That was my response. Maybe you have heard of it but I didn’t even know I had an IT Band. I was prescribed Physical Therapy 2-3 times a week for 6 weeks. I was a bit on overload with all of these changes and now this was slowly sending me over the edge. Frustration. Defeat. Frustration. Defeat. The feelings rolled back and forth for about 4 weeks. I also didn’t believe I would ever be “fixed.” I didn’t know IT Band Syndrome made any sense. As someone who isn’t even that big of a runner but just does it as a work out, I felt extremely helpless.
Slowly though, my Physical Therapist got me running. He started with this fancy machine that “de-weights” you. Have you ever seen this? I put on these fancy biker shorts that zipped me into the top of this machine, then the machine fills with air and I am only running on 80% of my weight. It was crazy. I was describing it to my new boss and she demanded to see a picture of the “fat suit.” Since I have no shame, I figured I owed it to all of you to show you a picture too:
The reason I tell this story that has gone way off track is that there were many moments throughout this process where I wondered if this defeat and frustration is what Mom feels. I know she feels helpless. The task of just running without pain felt like a huge obstacle I would never overcome. I imagine that is how Mom feels about standing, about walking, about regaining her strength, about all of it. I have tried to remember that and tried to think how I can help her overcome it. Overcome the huge feelings of defeat, overcome what seems like this huge challenge that you will never overcome, basically overcome your thoughts- because in life and in MS it’s not just a battle of the body but also a battle of the mind. Where do you begin? I say it doesn’t matter, you just have to throw everything you’ve got at it, don’t think big picture but instead think small picture and begin anywhere.
Have you ever had a challenge that seems so big you don’t know where to begin? Can you relate to thoughts of being overwhelmed like you will never improve? What do you think of my anti-gravity running “fat suit?”
Last Monday marked an important night in our household- the return of Dancing With The Stars! If you have followed my blog you know Mom and I are big fans of the show. This season though felt more special and more fun kicking off. Sister K even agreed to watch it….we’ll see if she sticks to it.
But it felt special because as I am feeling lots of changes with Mom right now, one thing that remains is this TV show however silly that may sound. She loves Dancing With The Stars and so do I. We can talk about the show and recap it together. We have our favorite performers, our favorite pros, our favorite songs to discuss…all of it. It is truly a fun life escape for us together and an experience we can share even though we aren’t physically together. Dancing With The Stars is easy to follow, fun and uplifting…it gives me a guaranteed special moment with Mom every Monday evening and for days to come…and for that I am thankful.
It also isn’t lost on me that Jack Osbourne who has been diagnosed with MS is on the show. He specifically said in his introduction last week that he is doing it to raise awareness for MS. Remarkable. It feels personal too. Every time I watch him I smile thinking of his courage and strength and how he is out there speaking and dancing for Mom.
So here we go again for another season of Dancing With The Stars…are you watching? Who are your favorites? Do you and your family have any shared TV shows you are loyal to watching and discuss after?
It was a rainy-ish afternoon and with not many plans I decided to conquer my usual Sunday grocery shopping on a Saturday. Next door to the grocery store is a Hallmark store and I decided to run inside to grab a card for Sister K whose birthday is on Monday. But while inside I got distracted and ended up with not just a few too many cards I didn’t need, but a nostalgic memory of Mom.
Mom loves Hallmark stores. I have distinct memories of being on summer vacation home for college with Mom and she would drive us to a Hallmark store because she had a $5 off coupon that was going to expire. We didn’t need anything in particular and didn’t have a specific occasion we were shopping for but we would wander around together. Candles…nick nacks…picture frames…funny gifts…you name it and we saw it.
Fast forward to today and Mom doesn’t drive anymore. She doesn’t leave the house too much anymore either. She still gets her Hallmark coupons but life has gotten in the way and they don’t get used like they once did. Dad tries to take Mom when they can make it but that isn’t very often. It also isn’t the same for Mom as this was her place of refuge, her place to kill time, her place to wander around and be Mom.
As I wandered around the store this afternoon I couldn’t help but think what Mom would think of the things inside. How she would stop to look at all the trinkets and treasures besides cards..she would see things she didn’t really need but buy them anyways..she would pick out surprises for Sister K and me..she would wander and shop without a purpose or a plan. The Hallmark store was her place. It still is her place but it is different.
I feel a strange pull towards this store whenever I see it. I have never lived near one and this one is so convenient. But more than being convenient it is like a big hug for me. The women inside are kind. The cards are funny. The knick knacks are cute. It’s like this magical oasis I have discovered inside of the big city I now live inside- and it’s an oasis that reminds me of the way Mom was before MS. So today when the woman asked me if I would like to sign up for a Hallmark Rewards card, I proudly said “Yes. My mom would be so proud to find out I am signing up for one right now.” As I look at my wallet with that little purple rewards card inside I can’t help but smile thinking of these memories of shopping with Mom and Hallmark and that even though life is changing, I am thankful to still have those memories.
Did your family shop at certain stores that will forever remind you of them? Do you have a favorite store that brings you a break from life when you visit it? Have you ever visited a Hallmark store?
This whole “My Mom has MS thing” is not easy. I know nobody ever said it would be but it is seriously not easy. It’s not easy to think about. It’s not easy to talk about. It’s not easy.
I have hesitated to come here and write these thoughts down. I think I have mentioned this before but many times the act of writing down my thoughts about Mom’s MS makes it more real. It was one thing when her MS was secured in a tight neat little box that I felt we as a family had some control over. It is very different now that I feel we have no control over and sometimes I feel like we can’t even get a grip on it.
First Mom couldn’t walk. Now Mom can’t stand. Her handwriting seems to be slipping. I know this because I always loved her handwriting. She sent me a package in the mail and just getting the package out of my mailbox was emotional upon seeing the handwriting that had addressed it to me. I didn’t recognize it. Much like I am having trouble recognizing Mom.
It all goes back to writing things down. In this case receiving this package was a written statement to me that Mom is different. Our conversations on the phone…the lunchtime chats I have been having with her practically everyday on my lunch hour for the past five years are different. They are full of lots of the same conversations we have already had, simple thoughts, simple topics, nothing too complex and they are quick. They too make me sad.
None of this is easy and coming here to share it isn’t easy either. But I am because I think it’s important. This is part of my journey in dealing with Mom’s MS and unfortunately a lot of that involves the path Mom’s MS is taking compared to others. So I can’t promise I can talk openly about this everyday like I used to because part of my coping involves talking about it and the other part involves not talking about these changes and the evolution of our family with it. Sister K told me the other day on the phone: “I think we just have to accept Mom the way she is now and realize we are never going back.” It was profound and a simple thought but it was true. We are never going back- we are only going forward and that forward is into a place of unknown.
Thanks for reading as always. It means so much to have my space that is mine where I can come and share my thoughts.