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.
Mom has been having some issues this week with what the home health doctor thinks is her sciatic nerve. Dad had to practically commit an “act of God” to get someone from her doctor’s office to call him back with some pain medicine on Monday and Tuesday. I am learning that you literally have to take the motto “the squeaky wheel gets the grease” when it comes to dealing with neurologists. Maybe the ones where we live just are not that great or maybe it is the field of neurology- I’d be curious what your experiences have been? We are already on our second one and I don’t think there are very many others to choose from unfortunately. The doctor is good, it’s just the process involved if you have an issue outside of your appointment and the lack of communication follow through.
But I bring all of this up because this coming weekend Mom and Dad were supposed to come visit because we have a family wedding to attend. With Mom not doing so well, Dad has discussed with me several times the likely decision of not going to it. This is difficult because it involves Mom’s friends from college and one of their daughters. Going to the wedding is in many ways more for her than for us.
Aside from just the logistics of getting her here right now, I know Mom is not in the best shape and I don’t want her friends to see her like this right now. I was talking to Dad about how after awhile you just get tired of being seen as the “special needs family.” You get tired of the extra effort involved in getting Mom to these things, get tired of everyone treating us differently, the stares, people telling you how they think Mom is getting worse, wanting to get into your business about what you could be doing better….it goes on and on…
I know Mom has MS and I know this is just the card our family has been dealt. But that doesn’t mean I don’t get tired of dealing with the extra issues that come with the territory- the struggle to get easily in and out of places; the stares that come with this struggle; the comments that follow. It’s just frustrating, especially while I get to stand by and watch all of her other friends get around just fine. I have heard before it takes a special family to deal with everything we have going on and I know we are truly one of a kind to be able to handle it- but that doesn’t mean that I don’t get tired of it and wish it would all just go away. That’s how I am feeling lately as MS seems to be throwing more curve balls and I am struggling to keep up.
Do you think I am awful for admitting I get tired of being a “special needs family”? Do you ever struggle with how others treat you because of a disability either to you or to a loved one? Have you had issues with doctors being responsive outside of a scheduled appointment?
“When it gets bad enough he will ask for help.”
Those words were told to me awhile ago by a friend when I shared my concerns with Dad being spread too thin between working and caring for Mom full-time. But sometimes I believe God forces you to make a decision you have been putting off by making other parts of your life begin to spin and that is exactly what has happened to Dad the past few weeks.
Dad was recently promoted which is really exciting but it also means more demands at work. At the same time, Mom seems to be digressing. She is having a harder time moving around lately and her MS is demanding more from Dad. I have been worried about Dad for some time but like I said above, I realized at some point I had to stop voicing my concerns and realize it was not my place to demand Dad get help with caring for Mom. The relationship between Mom and me verses Mom and Dad is different. They are married. They are husband and wife and I believe Dad is trying to do everything he can to fulfill his vow to be there for Mom in sickness and in health. I can’t get in the middle and force him into making decisions he isn’t ready to make.
But Sunday Mom seemed to be struggling and Monday she woke up with excruciating pain in her leg. Dad needed to be at work. This has happened before but this time his work demands are greater and he realized it was the beginning of being unable to be in two places at once. He was stuck. He called the nurse who had come to our house to administer Mom’s steroid infusion. She had spoken with Dad awhile back about staff she has that will come out and assist around the house. The nurse came out to meet with him and she and Dad began to move forward with making arrangements for someone to come out to be with Mom during the day.
So when I spoke with Mom during lunch yesterday, her new home helper/nurse/assistant…for blog purposes I’ll call her Nurse B…Nurse B was at our house with Dad getting acquainted with everything. I tried to talk to Mom like everything was normal but she was tired and explaining she was frustrated because she preferred to be by herself.
Even after all the time I have spent trying to get Dad to make this decision, I have to admit it was strange to think Nurse B was there. She was there to take care of Mom. My mom who has always taken care of us needed someone to take care of her. This is reality now and it made me sad and full of a mix of emotions…a big one being acceptance that this is my family now. It’s just strange. It feels strange. And even though Mom needs this, I feel sorry for her. I can’t help but struggle that her independence has been taken away and I played a part in that. Even though Dad ultimately made the decision I agreed with him. I don’t know why but I’m struggling with that realization because secretly I never thought it would happen- I never really thought we’d need to bring someone in to help Dad; I thought Mom would get better; Dad would figure out some magical way to manage it better. I just didn’t think it would happen and it has now.
Have you ever dealt with getting help for a family member that maybe impacted their independence? Have you ever felt the guilt of feeling responsible for taking it away? Do you believe sometimes life may force you to make a difficult decision?
I always knew MS would cause plans to change and to some extent I have experienced it. Running late to events, changing “dinner out” to “dinner in,” canceling a planned outing….but I have never experienced it when it involves plans with other people outside of my family.
A few weeks ago Husband and I went home for the weekend to attend a wedding with Mom and Dad. Sister K was unable to make it so Husband and I were going to drive with my parents on Saturday. The trip from home was about 2 1/2 hours up and 2 1/2 hours back to the city the wedding was going to be held. Initially we were thinking of staying overnight but Dad had plans to go out of town for work the following day so that didn’t work out.
That morning I had a feeling Mom might be struggling. She had just finished her steroid infusion and seemed to be moving slow. But after a bit of an argument with Dad about if we should go at all, he told me “this is how we roll with MS and if we have to come back we’ll come back.” I don’t think either of us really thought that statement would come true just a few hours later.
About an hour into our drive Mom needed to use the restroom so we pulled off at a gas station. I helped get Mom into the restroom and for the next hour I was in and out with Mom. That’s as far as I’ll go into those details. The point though is there I was in a black dress, black tights..pretty much dressed for a wedding helping Mom in and out of a restroom stall repeatedly. It was exhausting. It was draining. I had no mental capacity to think of what other people may be thinking. I had no extra mental space. Everytime I thought we were done, we weren’t. Husband and Dad hung out next door in a gift shop and even though I felt bad for leaving Husband in this predicament, I also realized I had no choice. My priority was to Mom in this moment.
At a certain point Dad decided, we can’t continue driving and make it to this wedding. Mom was upset but understood. This was her friend’s daughter getting married and our old next door neighbors. I texted one of the kids to tell them Mom was sick and we wouldn’t be coming. We got in the car and drove an hour back home.
It was a strange feeling having to text message someone to tell them Mom was sick and we wouldn’t be able to make it. I felt in many ways like this private world I like to shield the ugly parts of MS was being exposed to someone else. I also couldn’t believe that for the first time our plans were really getting flipped on their head…just like everyone had been telling me would happen eventually. This is what they meant. Getting all dressed up for a wedding only to spend your afternoon at a gas station. Getting home and thinking what was the point of that? The emotional exhaustion that comes from going through that experience. The thoughts that circulate through your mind. It’s a lot.
I know this is most likely going to happen more often and has probably already happened to many of you, but it was my first time to “get it.” To in many ways really see where we are at with all of this and it was a hard realization. Maybe these experiences will get easier and maybe they won’t…but it’s very humbling to have to expose these tough moments to not only close friends but also to all of you. At the same time I think it’s important because it is helping me to not be ashamed. This is who we are now and these things can happen. Our family really is changing and evolving and these experiences are all playing a part in the evolution of who we are becoming.
Have you ever had plans “derailed” by MS? Have you ever struggled having to admit the truth to friends? Do you struggle with thinking what others are thinking about you?
I was home for a few days two weeks ago to stay with Mom while Dad was out of town. I had a love/hate relationship with those two days. I loved being home. I loved staying with Mom and spending time with her. I hated everything that had to do with MS. I hated how it tested my patience.
It gave me a great sense of appreciation for everything Dad is dealing with when it comes to Mom. It also made me feel like a failure because I can’t seem to handle everything as smoothly as he or Sister K does.
After quite a bit of soul searching, I think I may have found the root of part of this- I need to slow down. I like to go-go-go. I am a planner. I am always one step ahead and thinking one step ahead. This way of living, feeling and thinking does not work when your Mom has MS. Because these tendencies are pretty heavily intertwined in who I am…in may ways Mom’s MS is fighting constantly with who I am.
I came to this realization about halfway through. I then felt really frustrated with myself. I spent the rest of my time home trying to mentally slow down. Physically slowing down is one thing. But mentally slowing down and focusing on the present with Mom is tough. But I tried. And I was successful for a day. I know it’s a day, but it is some sort of proof to myself that I can do this…baby steps.
So here comes my new challenge, the mental slow down.
When I am in the presence of Mom I need to make a conscious effort to mentally slow down. Fight my urges to speed through our time together and get lots of things accomplished. Instead slow down. Realize I am not going to accomplish that many things. Most importantly realize that is okay and realize the important part is the moment with Mom.
Do you ever had a tendency to try to speed through life? Is it easier to physically slow down than mentally slow down? Do you ever get the two confused?
This past weekend Husband’s family visited. I struggle sometimes because it is difficult to have a mother-in-law who is healthy and active and then have my own mother who is struggling and not as active. It brings to mind a lot of challenges internally for me and has pretty much since we got married. But this weekend, I really put those aside and tried to just enjoy the time with Husband’s parents and I found that when I did that things worked smoothly. My mind was more at ease. When I just lived in the moment, not worrying about the future with my parents and inlaws but instead just enjoyed the weekend…things just worked.
One interesting thing did happen though. We took Husband’s parents to a university basketball game. My father-in-law is having issues with his hip and may have to get a hip replacement eventually. There was a quite a bit of walking to get into the stadium. We saw an area for accessible entry and Husband and I walked up to ask a question about how to get to our seats from outside. The thought went through my mind to ask if we could enter in this specific spot, but I held back since it wasn’t my own parent. In hindsight I should’ve just asked and next time I will. Later, Husband told me he wanted to ask but didn’t know how. He said he didn’t know how to word it. He said he was unsure what was appropriate to say or unsure what they would say in response. He also said he thought I would’ve known exactly what to say in this situation…I deal with this all the time…and I am years ahead of him on this topic.”
And he was right. It made me take a step back and think of the lessons I am learning in the process of dealing with MS. Sure there are tough moments. There are also good moments. There are also moments of complete failure and moments of complete success. But through all of them I am learning lessons. Life lessons.
In no particular order, I offer you a few of my own personal lessons learned:
- Don’t be afraid to ask for anything. What is the worst that will happen? Someone will say no. They might..but most of the time they won’t.
- Chivalry for Mom exists 100%. People hold doors. People get out of our way. People don’t mind stopping their cars while we cross the street. We force people to press pause in a very hectic world. They press pause and watch. Sometimes they are impatient and rude, but for the most part they are kind. Blow off the rude ones but embrace the feeling of the kind ones.
- Also realize people are selfish and are not paying as much attention to you as you think. They are not staring at you pushing your Mom in a wheelchair or getting in and out of the car. Even if they are staring they will forget shortly. Because strangers don’t really care that much about you..and take comfort in that.
- Assume your plans will fail. Something will go wrong. Learn to roll with the punches of MS and the punches of life.
- Stay calm. Mom is watching me and waiting for my cue. If I get stressed it means Mom will get stressed. And a Mom with MS who is stressed is a full on recipe for disaster.
- Cherish the moment. Cherish the phone call. Cherish the experience. If Mom is having a good day, cherish it. Take seconds to remember it and embrace it. Don’t assume these will come everyday. But cherish them because the memories of these are what gets you through the tough moments.
- Life is going to bring people into your life. Wonderful people you never imagined meeting. Realize these people are your support team and they are gifts. At the same time, people in your life who you always thought would be your support team are going to disappoint you. You will have to find a way to “let them go” realizing at times we have to clean out the old to make room for the new.
- Keep perspective. Don’t sweat the small stuff. Realize the importance of MS in your life and the large place it holds in managing your daily stress level. With that being said, little things don’t deserve a big place in your stress level. They don’t deserve a place at all. Anything unnecessary that contributes in a negative way to your daily stress- get rid of it.
Only the strongest families are given MS to deal with- and even more so than that, only the strongest children (no matter what your age) are given a parent with MS. Life is going to give you the tools you need to get through it, but it is figuring out what those tools are and how to apply them in your life is hard. Find your tools and embrace them. And above all, remember we are warriors.
What lessons have you learned from dealing with a disease such as MS in either yourself or a family member? Do you know a child who has a parent with MS? Take a minute sometime to recognize them for what they are- a warrior.
Maybe I am naive but I really thought finding a way to deal with Mom’s MS would get easier. She has had it for 3 1/2 years, I have seen the highs and lows firsthand and I thought at some point my mind and my heart would find a way to kick it into gear with coping mechanisms. For awhile I felt that was the case. Now I not only feel like I am struggling with coping, I am not even sure how I can cope.
I went home this past weekend with Husband to attend a wedding of a childhood family friend of ours. We only went for one night, Saturday to Sunday, but by the time I left I felt like I had been home for much longer. I was really struggling with Mom and where she is at right now. She is on some very strong medicines which I think are messing with her mind combined with increased physical difficulty over the past few months. But for some reason, even knowing all of this going into the weekend, it was rough for me.
I had trouble carrying on full conversations with Mom where she was fully present and interacting. I felt like as long as we were being silly or laughing things were fine but if we shifted the conversation to something more serious or stimulating she couldn’t contribute. I struggled with having Husband there through all of this. I felt like I was half hosting him at our house and half dealing with my emotions about Mom secretly. In a way maybe I was trying to mask certain things because I know they are there but having Husband notice them makes them more real. It was overwhelming and tough.
I got in the car with Husband to drive back and I cried. I just wanted to cry. I felt like the woman I had just spent the past 48 hours with, the woman who is Mom was not Mom. With all the changes that have occurred with Mom throughout the course of this, the one that I am struggling with the most is clearly the cognitive changes. I believe all of this may be part cognitive changes but also part medicine side effects. Regardless, it doesn’t change the situation I am left with- I am left with a Mom who isn’t quite herself. In a situation where communicating is one of the few things we have left and we are now struggling with that…I feel very helpless. I feel overwhelmingly sad. I feel like no one can understand. Even Dad and Sister K do not seem as affected or bothered by this as I do. For Dad in many ways he cannot allow this to effect him because he is Mom’s full-time care taker. For Sister K, we are different people who handle situations like this differently. At the end of the day though I am left feeling very alone and trying to find a way to cope. And I am coming up empty-handed.
Do you struggle more seeing family members lose physical or cognitive abilities? Do you believe we ever truly cope with a situation or do we learn to mask our emotions? Do you ever wonder why some people have a harder time coping with tough times like this than others?