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?
I am having a tough time blogging lately. I am pushing through it though because I love this blog. I love writing and having a place to come share my thoughts about everything going on with Mom. But my thoughts lately are cloudy and they are tough. I feel overwhelmed but the challenges being presented before my family. I feel overwhelmed about how much there is to this story that I cannot fix. I am trying to accept these complex thoughts but it is hard. It is hard because they are not easy to accept and I am not sure if accepting them is the right thing to do. I feel like a lot of the time I am thinking myself into circles about everything…only to realize nothing is resolved and the only way to cope is to mentally move on to something else.
To put it bluntly, I feel tired of MS. Tired of the impact it is having on my family and Mom. Tired of the way it is seeping its way into our dynamic and forcing us to accomodate and find new ways to get on balance. I feel like we’ll never figure it out. A big part of me wants to give up but a bigger part of me knows that isn’t what you do. To that part of me I tell myself- this is your family. These are your people. These people make up the biggest blessings in your life. You have to focus on them. You have to focus on the love you feel for these members of your family and focus on your relationships. You have to cherish the good moments and really cherish the memories of those moments. You have to remember the bond Mom has with you. A bond that can’t be broken by a disease. A bond that makes Mom the only person you want to call when you are upset and a bond that in the same way tells Mom just from your tone of “hello” over the phone that you are upset. She knows you. She knew you before anyone else knew you.
It’s not easy and in fact I think it is getting more complicated. Life is throwing bigger curve balls at us. I am worrying more about my parents. I feel older. I feel less like a kid. I guess that was going to happen eventually but I also feel alone in the process. I don’t have anyone who can share this except Sister K. No one else understands that I am now thinking for both Mom and me- Trying to manage our family, keep up with buying people presents, rsvp’ing for events, planning events, but all making it look like Mom is still doing it. I have always been a planner and always been organized with life tasks like this so it’s not that far of a stretch but it doesn’t make it easier. In many ways perhaps God was preparing me to assume this role my entire life…and now that time is here. Do I mind, no. But does it make things very real, yes.
I am not sure where I am heading with this as it seems to be a bit of a rambling post. But I wanted you to know where I am at these days. I am still around. I am still blogging. But some days I can’t bring myself to think about MS and do it…and some days all I want is to have a blank white screen to ramble about MS. But thanks for sticking with me and continuing to read as I charter through. Maybe this is all part of it. The ebbs and flows of life and the ebbs and flows of MS. Like my blog says, I don’t have a manual and I am just navigating it the best way I know how.
Do you ever feel like you need to ramble? Have you every struggled with blogging about tough things? Have you struggled with ups and downs with a family member and a disease?
Wishing you a Happy Valentine’s Day!
I am old school and still love my hand written pocket calendar.I like to get out my pen and fill in the dates of a new year. I like to use my pen to cross of the days that have passed. It is how I keep appointments and keep my life organized. My calendar is one of my most favorite things I own. I also love watching my calendar fill up. I get a thrill out of a busy schedule..every once in awhile.
I noticed while I was home that Mom also seems to love calendars. She owns three. She has her Thomas Kinkade calendar which is more of a wall piece of art in the kitchen than actually used as a calendar. She has a white board calendar that sticks to the fridge that does most of our household managing. Last but not least she has has this wooden calendar she has been ordering paper refills to fill up for at least 20 years. This calendar organized our household activities for pretty much my entire childhood until we got the white board one. Now I feel really old.
But I think calendars are magical. Dreaming about the future. What kind of events or appointments will fill up the days. I have also noticed during times of high stress I don’t pay as much attention to mine because it tends to stress me out. I don’t anticipate the next activity or cross out the days as religiously as I normally would. I think I try to block out the passage of time.
With Mom’s MS I feel I have become increasingly more aware of the passage of time. I look towards future months and wonder how Mom will be doing. I look back a few months at how she was doing and where we are today. I can pinpoint her health by looking at events and remembering how she was health-wise when we attended them.The journey of MS can’t be chronicled into appointments and events. It lands on the unexpected. It can squash all other appointments and events in its path. Mom’s MS has a mind of its own and in no way respects or cares about my pocket calendar and my plans.
But I continue on dreaming filling in my calendar. And so does Mom. Because at the end of the day you have to live. I read a quote recently about travel but I think it also applies to my life: “You have to fail to plan and plan to fail.” So I sit here with my calendar knowing that it could all be flipped on its head in a split second…but for now, it is all organized neatly into its dates and times all wrapped up in its maroon cover.
Do you keep a paper calendar or an electronic one? Why do you prefer one over the other? Have you ever been excited about being busy with plans? Does looking at all the days of the year and all the changes that could happen ever overwhelm you? Do you enjoy filling in the dates of your calendar too?
I am having a bit of a frustrating day. They are silly reasons but I think the root of them lie in expectations and plans. Two themes in my life that when messed with cause big issues for me. I also realize the things I am upset about today stem from tiny changes to plans and expectations compared to some much bigger issues with plans and expectations I deal with everyday…cue Mom’s MS.
Let’s see if you can follow this: Originally I was going to host my bible study over for a cookie exchange last night. I had to change this because I had a work holiday party come up. Then I rescheduled it for tonight. All was well until a get-together I was supposed to go to last week got rescheduled for tonight. So I moved the cookie exchange to Thursday night….but literally at this point I am still not sure anyone can come. Now my get-together that got rescheduled for tonight has been canceled again…
So here I sit. My plans have gotten changed in all directions. My expectations for my evening and my week have gotten trampled on and I am struggling with how to react.
I mean the bottom line is there is nothing I can do. I have to just roll with it. It kind of reminds me in a far fetched comparison to how I feel about Mom having MS right now. I had all these plans and expectations and because of MS my plans and expectations have gotten trampled on….and I am still figuring out how to react.
It’s just one of those things I guess. But the question remains of how I can better handle these little stampedes life likes to throw at me from time to time. Mom’s MS has provided a permanent stampede everyday but on top of that I have these little ones that like to pop up every once in awhile. I guess I just need to embrace the stampede. Embrace my new plans that will involve spending the evening with Husband and our cat visitor. Spend some time doing laundry and getting caught up on things before the holidays. Spend some time on me. I will embrace the stampede.
Do you ever get frustrated when your plans change– big or small? How do you handle unexpected last minute changes? Have you ever thrown a party you legitimately thought no one may come to? If it happens stay tuned for what may be a Bah Humbug post come Friday!
I survived a very rewarding but exhausting weekend filled with coats, coat distribution, and coats clean-up. I survived lots of being on my feet, waking up early, physical activity and not enough sleep. I was going to blog yesterday but I couldn’t get the site to work. I could’ve tried harder but I was tired. So I didn’t.
As you know Husband is in school working on his MBA. Throughout his program I have gotten to know some of the wives in it. Well, this being December marks the end of a semester which also means time to say good-bye for a little while. One difference though is a lot of the people in Husband’s program are studying abroad next semester. We are not but a lot of our good friends will be in Europe beginning in January. I realized this yesterday after what had been a crazy weekend and what is already shaping up to be a crazy week. December always seems to be such a busy time. So I had a bit of a dilemma yesterday- do I try to send an email making plans for a little last minute get-together today or do I just forget it. I thought about it. Something inside said yes and pushed me to do it. That something (or someone I should say) was the voice of Mom. Mom would say “go for it!” So I did. I composed the email, sent it to my friends and pressed send. And then I sat nervously, unsure if anyone would be available or be interested. As it turns out they all were except for a few who were busy. We even changed it from a dinner to a lunch. So that is where I was this afternoon. Because of my lunch break I didn’t have enough time to stay and eat but I got an iced tea, sat and visited until I needed to leave.
As I was driving away, I felt happy. I was smiling. Smiling because this all started with an email I sent out. An email I was a little nervous to send but did anyways because it’s what Mom would tell me to do. Mom who is always planning get-togethers for her own friends. A talent and art form she has taught me whether she knows it or not throughout my entire life. Something I am now pushing and encouraging her to do in spite of her MS. She turned me into the person I am- the self proclaimed planner…but unlike Sister K, I often need Mom’s push too. And in a way she needs mine. Yesterday she pushed me and today I am spending the afternoon happy and smiling because of it. Thanks, Mom. You’re getting pushed next.
Do you ever feel nervous to plan social get-togethers? Do you have a voice inside that tells you to “go for it” when you are feeling nervous? Do you require mid-day caffeine to make it through the day like I do?
My family is evolving. Our dynamic is evolving. Part of this is a natural evolution and part of this is on account of Mom’s MS. I have mentioned before that my family has never exactly been the most punctual family in the world. But these days we move very very slow. It can take Mom a good 15 to 20 minutes to get from the living room into the garage and into the car. That is assuming everything is ready to go. Sometimes it can take longer. We are all learning to adjust to this. We are also learning the many definitions of the phrase “time to go.”
There are now 3 steps to planning when we want to go somewhere: 1) Determine what time we want to arrive at our location 2) Determine what time to leave 3) Determine what time we need Mom to be ready and how long it will take to get her in the car. It is a process to put it in the simplest terms. There is no more rushing out the door anymore. We don’t rush. If we are running late than we take a deep breath and realize we are going to be really late. That is how things go.
Sister K and I are getting more used to this. More used to just hanging out, not rushing to get out the door, realizing that going out to lunch may mean we are eating lunch at 2:00. It may also mean we are eating lunch at 3:00. Going out to dinner could happen at 8:00 or 9:00. Things are just on our own time now. Our own schedule. But, I also have another person in my life I am balancing who this does not come so natural to…Husband.
It is one thing to be experiencing the waiting and being late when it is your immediate family. I believe Sister K and my tolerance for the situation is higher because it is our Mom. We also weren’t raised in a very punctual family to begin with so in many ways this is just a bigger extension. Husband on the other hand comes from the polar opposite. Where my family would be 10 minutes late, his is 10 minutes early. His Dad is always in a hurry to get out the door to get somewhere not on time, but early. When I visit his family if we say we are leaving at a certain time I know I have to be ready at this time. This is part of being married. Adjusting to other families. But in many ways it is a little easier for me to adjust to his family norm when it involves time than him adjusting to mine.
We had a little tiff because of this over the weekend. Husband and I drove in for a quick visit to see my parents Saturday morning because Husband needed a haircut. Then we were going to go to a quick lunch with my parents and head back because Husband had some things he needed to do later in the afternoon. We only had a short time to be home. We began to have issues though when it was taking Mom awhile to get out the door, therefore pushing lunch back a little bit, and making Husband a little uneasy because he had study plans in the afternoon. I feel very caught in the middle when this happens. I am caught between my husband and my family. Caught between two situations that both make sense. Husband is working on his patience but I realize it is a lot to ask of anyone. He also realizes this is what he signed on for when we got married. But it’s difficult because this requires him to be the one to change because my family simply cannot meet him halfway on this. Mom cannot move any faster and we are truly going the fastest we can.
I guess what I am saying is the nature of my parent having MS is one thing. I tolerate more as I should because it is after all my Mom. But when you add additional people into the situation it requires tolerance and patience from them too. It is not necessarily a natural transition. I know we will get there, but I also know it isn’t easy. We like to say Mom doesn’t have MS, but we have MS. But that becomes a little more complex when the dynamics of the family grow and new people have to interact with our MS. MS affects everyone, not just Mom. It affects all aspects of our lives and it will continue to impact new areas of my life just as I think I have a hold on them.
Do you think it is natural to have more patience with your own family than others? Do you see how this could be a difficult situation for Husband? Do you find it interesting when you find a new situation being impacted by MS in your life?