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?
Mom is undergoing a steroid infusion this week. Every evening someone from home healthcare has been coming to our house to give Mom an infusion. Becuase of her decline the past few weeks, her physical therapist thought she may be having an MS exacerbation. My parents quickly made an appointment with her doctor who prescribed the steroid infusion to get her strength back.
I have to be honest, I didn’t think much of this. I didn’t think this would really make much of a difference and had started trying to reason my way through the changes in Mom. I am continuing to do this. But something strange happened this week- the steroid infusion began and I have felt through phone calls with Mom that her presence and spirit are back.
Today at lunch I was going to go run some errands and just called to check on her really quick. Really quick turned into 45 minutes….she was so tuned in, talkative and upbeat that I couldn’t bring myself to get off the phone. I soaked up every one of those minutes as I wandered around outside. We talked about the same things, she was rambling repeated comments a few times but I really didn’t care. It was just so nice to be able to talk to Mom…really talk. She wasn’t loopy or tired or out of it. She was Mom.
I know this may not last. I am very aware that this is most likely a result of the steroid in her body right now. But I also don’t care. I enjoyed this afternoon so much and felt so revived coming back for the second half of my day. It all ties back into living in the moment with Mom. I have been having tough moments the past few weeks. But today was a good one. It was one that I want to cherish.
I am heading home this evening to actually see Mom and Dad. Husband and I are attending a wedding with them tomorrow and then I will be staying there until Wednesday morning because Dad has to go out of town. He likes for either Sister K or I to stay with Mom if he is traveling overnight. I know we most likely won’t be able to do this forever but for right now we are both in situations that allow us to, so we do. It will be nice to be home and nice to spend some more time with Mom. More time working on my patience and working on living in the moment. Hope you have a great weekend!