Good days and bad days. I struggle with this saying even though it puts things into perspective. In my mind this is the kind of phrase said about my Grandmother with Alzheimer’s, not my Mom with MS. It is a phrase people use to speak about their elderly relatives, their aging grandparents, not my 59 year old Mom. But at the same time, it works. It is an easy way to sum up this life I am living with Mom’s MS. It is an easy phrase for me to focus on, so I don’t get frustrated by the turn of events that can occur in one day.
I was home visiting my parents this past weekend. Friday night when I arrived Mom was doing great. Her physical therapist Coach C was there and she was doing her exercises and in a good mood. On Saturday, Dad, Mom and I went to lunch and then Grandpa came over for pizza and to watch college football. Our college team won in a 4th quarter finish after playing horrible the entire time. It was an exciting and fun evening.
But, Sunday was different. From the moment Mom woke up Sunday she seemed off. She seemed to not be moving around very well. Very tired. Just “out of it.” We picked up lunch and took it to my Grandpa’s house to eat before I left town. She was very tired and wanted to lay down. She didn’t talk too much. It was just strange and tough and weird. I was thinking how did we go from yesterday’s great day to this barely 24 hours later.
The only explanation- good days and bad days. I don’t want to admit Mom has good days and bad days. To me it means everyday there is a chance it could be a bad day. I can’t assume it will be a good day. I also have to learn to deal with the bad days. Learn to react, not let them bother me,and not take them so personally. It all ties back to taking life “one day at a time.” By saying there are good days and bad days you are essentially making a commitment to taking life one day at a time. Because you don’t know if it will be a good day or a bad day. But I am selfish and I want all good days. I don’t want the possibility of bad days. I also don’t want to use the same phrase so often associated with people’s elderly relatives. I don’t like Mom being lumped into that category because people so often do it. But unfortunately for me, the bottom line is that’s what this was- it was a bad day.
I need to find a way to not only tell myself this to believe it – Mom had a bad day. It’s going to happen and it’s okay when it does. It’s not the end of the world, it’s just a bad day. There will be more good days just like there will be more bad days. Take it one day at a time.
Have you every struggled with the phrase “good days and bad days”? Do you believe it’s important to remember to keep things in perspective when dealing with a disease like MS? Do you find yourself prone to catastrophic thinking sometimes…where one bad day means a million more bad days? Are you as frustrated with me as I am that I can’t seem to just take life “one day at a time”?
I’ve always been encouraged and pushed to succeed. Not in an unhealthy way but in a normal, “you can do this” sort of way. I also have always responded to it. It had the desired effect on me. I push and continue to push myself to succeed. If I am afraid to do something I figure that means I really need to do it- as much as I don’t want to, I will force myself.
What is strange though is I am not sure where I got this from, this trait. Mom is one of the biggest people who has always pushed and encouraged me. She pushed me onto a plane to study abroad, she left my 18 year old crying self at my dorm room freshmen year of college, she moved me to another state for graduate school- she did all of these things because she knew I’d be okay and knew I needed to do them.
But the strange part is the same does not exist in the reverse where Mom is concerned. Mom does not operate this way. If we try to push her to do more where her MS is concerned, she gets frustrated. Most of the time it doesn’t end well. She doesn’t fight for things the same way she taught me to fight. But in the same way I am simply trying to instill in her the same ideals she has instilled in me. It leaves me confused. I don’t exactly understand how that works. I know she wants the best for me the same way I want the best for her- but when the role of mother and daughter switches into reverse and I become “the encourager” and she becomes “the encouragee”that gets lost in translation. Yet I know that in life the person who has always encouraged me and pushed me more than anyone is Mom- at the same time I know this baffles most people because this is the same Mom who struggles to push herself.
I don’t really know where I am headed with this but it’s an observation I’ve made and one I want to file away…I do believe all these observations will intertwine themselves into a life lesson that is forming. I am just not sure what it is yet.
Did your parents push or encourage you to try things you were scared of when you were younger? Have you experienced moments of trying to push or encourage your own parents but not getting the desired effects? Do you think paying attention to comparisons in our life can lead to many life lessons if we pay close enough attention?
I love this week every Fall. It is season premiere week and for someone like me who has several favorite tv shows and characters I have missed all summer, it is a big deal.
This time around though, Mom, Sister K and I have been emailing to pick a show to watch together. A show we could chat about and bond over as the tv season unfolds. We have selected Dancing With The Stars: All Stars which premieres tonight. I used to be a loyal viewer of the show, then stopped watching for awhile but this season some of my favorite dancers are back, so I will be too.
This may seem kind of silly or dumb. But I actually think it’s very important. With Mom’s MS and the restraints it has placed on her daily life, sometimes it is hard to find things to just escape and talk about; things that are not important at all but we can pretend are incredibly important; topics to bond over; new people to discuss. That’s the escape Dancing With The Stars provides us. It is similar to the escape the Bachelor/Bachelorette also provides.
The escape is important. The change in conversation is important. I believe it helps our relationship and provides us with good memories. It’s that relationship and the little inside jokes and comments we remember from these experiences that help us in the tough moments.
Does your family every bond over tv shows? Do you think it’s important to have a little escape into whatever show you may like such as the world of competitive celebrity ballroom dancing? Will you be watching Dancing With The Stars tonight?
I am by nature not a neat person. But that being said, I love the feel of a clean house. This past weekend I cleaned our apartment and when I say cleaned I mean “really cleaned.” Husband and I both tend to lean towards the messier side with clutter so I had to start there and then went into cleaning products mode.
Please don’t be too harsh on me as I begin to divulge the secrets of my messy apartment. I decided to pick up a towel and dust the base boards just to see if anything would come up. Then I stood there in horror at the amount of dust/dirt that did come up. I then felt like I could feel Mom standing there laughing at me. Laughing because whenever Sister K and I go home we have a tendency to get after Mom and Dad about the state of our house. It isn’t a disaster but with everything with Mom’s MS it isn’t exactly a priority either. Mom can’t clean it on her own, we don’t have a maid so they do what they can. But Sister K and I have a tendency to go home and get frustrated about this. We are learning to just go with it though. Realizing our parents are happy, they are doing what they can and whether or not the floor has been swept really isn’t as big of a priority as whether or not Mom has exercised today.
Sunday afternoon as I looked at the towel of baseboard dust I thought to myself, who do you think you are going into Mom’s house and judging how clean her house is when look at your own. And then I laughed. Another lesson learned. I should probably not consider myself to be high and mighty in the cleanliness department after thoroughly examining my own apartment this past weekend. I definitely got kicked off my “know it all perch” I like to place myself on from time to time.
Regardless, my apartment is now clean. And I am trying to keep it that way as long as I can.
Do you tend to be a neat or messy person by nature? How often do you clean your house? Has anyone else ever been horrified by their baseboards?
This morning I woke up to 10 emails between Mom and Sister K that I was included on beginning at approximately 11:00 last night and ending at 11:30. I was laughing as I tried to decipher how the conversation had gone, the path it had taken and the change in subject over the course of the emails. The silly, pointless, unintelligent conversation. Husband thinks my family can do this like no one else…I am not sure if he means that in a good way or bad way when he says it..
But I have to commend Sister K here. She has a way of sending emails full of spunk, energy and happiness to get Mom out of a funk. She makes them silly and simple and repeatedly calls all of us best friends.
Since my family is going on a cruise next summer we have decided we are going to have “Cruisemas” this year for Christmas. Everyone is thinking of cruise related gifts to buy each other. Sister K is obsessed with buying the “best friends” matching tote bags. That is how the email chain began- selecting monograms, colors, fonts, and then slowly evolving to a bunch of nonsense. We still haven’t reached a decision and we have had pointless emails about this all day. Someone reading these emails might question our intelligence.
The point though is how important these emails are to us. It is impossible for us to be together all day and impossible for us to talk to each other all day. We know Mom is at home the majority of the day without much activity because of the limitations of her MS. These emails are important for her. They lift up her spirits, they make her laugh and roll her eyes at her ridiculous daughters. But they make her feel a part of something fun, every day. Replying all…all together.
One of the luxuries of the current world we live in is all of the options we have for communication. Phone calls, texting, emails, facebook, twitter, blogs, the list goes on. With Mom’s MS and the distance between us, these different methods are very helpful and important for us to use. Sister K and I will use any means necessary to bring a smile to Mom’s face and to make her feel a little happier at times. It may seem basic but it is so important. The art of communication can be the most powerful tool in helping to bring a little happiness to someone’s life- no matter how silly the communication may be.
How do you use the tools of communication to keep in touch with loved ones? Do you enjoy taking a break from real life and acting silly with loved ones? If you had to select a monogram would you pick your first name or initials?
Everyone has an opinion. I always knew this was true but am amazed at how this becomes even more of an issue when your Mom is diagnosed with MS. Everyone has an opinion about Mom’s MS- they have an opinion about to handle the disease, how we should act, how Mom should be treated, what we are doing right and what we are doing wrong.
I was told this weekend via someone else that a comment had been made referring to how we are handling Mom’s MS. Yes this would classify as gossip on their end and gossip on my end. I also don’t care. The comment: “Their Mom is just really not doing well and I don’t think any of them are taking it seriously.”
My initial reaction: Are you kidding me?
But as I write this, I have let it settle and I’ve given it some thought. There are a number of issues I have with this that I have been thinking about. First of all, why do people feel like they have a right to tell us how to handle our Mom? Is it because of our age? Yes Sister K and I are 25 and 28 but that doesn’t mean we are children. I personally think we have done a great job considering the circumstances we have been given and how all of this has happened. We have also been given a big choice in all of this. A choice I am not sure everyone would make the same way we are- We could choose to ignore this situation entirely and let it rip our family apart, or we could fight it. We fight it. But no one commeds us for that. They just look at whatever it is we aren’t doing.
Which brings me to another issue. What aren’t we doing and how exactly are we ignoring this? We have gotten Mom a physical therapist, she is improving little by little everyday, we are trying to keep her attitude as positive as possible but we cannot force her to do anything. I think people forget Mom is 60, not 85 with a disease like Alzheimer’s. She is still cognitively very aware of what is going on and we do not control her life. This is not a situation where you are dealing with an elderly grandparent. I am dealing with my middle aged Mom. The circumstances are completely different.
Mom and Dad are working through this together. We are all working through this together. We are doing our best. There is no manual yet everyone seems to think they have one. There is also no cure for MS. This isn’t going to magically disappear. While I am incredibly frustrated by this one comment it is really just representative of other comments that people mention to us wherever we go. I don’t understand what gives people the right to tell us what we should be doing that we aren’t already doing and why they seem to know all the answers when they haven’t even dealt with a situation like this. For the millionth time and I mean this as kindly as possible- your Mom having Alzheimer’s is in no way the same as my Mom having MS. Your 85 year old Mom is not the same as my 60 year old Mom.
I need to be more assertive when these comments are made to me. I have made a promise to myself that from now on as comments like this are made to me I am not going to just politely listen and pretend to appreciate their concern. I am going to respond in a manner explaining we are doing the best we can. I am going to respond in a manner that is not rude but also not nice. Implying I don’t want anymore advice that I never asked for in the first place.
Why do you think people offer opinions when you didn’t even ask for them? Do you think this is a lack of social skills or something greater? How would you respond? Would you be bothered by this or do you think I need to blow these comments off? Have people ever done this to you regarding issues in your own life?
Can you believe the Olympics is over? I am kind of sad, thinking I am going to have some sort of Olympic withdrawal when I go home this evening and don’t have anything to watch. No more coming into work everyday asking co-workers if they saw particular events the night before, no more sitting on the couch every night cheering on the USA, no more obsessing over my favorite Olympians and following them on Twitter. It has all come to an end. In a way it is time to return to real life.
I, for one, really got into the Olympics this year, more so than I have in other years. There was something incredibly thrilling about watching the races, hearing the stories of the athletes and celebrating the victories alongside everyone I know since we were all cheering for the same team. The camaraderie. The support of a country behind you. It must be quite a rush for the Olympians.
It makes me think of myself and dealing with my own issues in my life. How important that camaraderie and support can be- whether you are on the large scale of an Olympic athlete or the small scale of a 28 year old trying to navigate the twists and turns of life. It can all come down to your performance in a particular moment. I sometimes feel the pressure of that performance in stressful moments with my family. You wait for your opportunity to say something and then you pray that when it comes you say the right thing. You pray that you are able to perform. You are also thankful for the support behind you in these instances. Even though that support team may not be present, you know they are out there. No one realizes how invaluable having a team of people rallying behind you can be until you face those big life moments- some are exciting, some are challenging, some are positive, some are negative- but the one thread they have in common is the importance of a support team in each of those instances.
How do you support your friends and family? Do you see the value of camaraderie in times of struggle as well as in times of thriving? How do you handle situations where you aren’t receiving the support you may need? Are you sad the Olympics is over? Did you enjoy cheering on Team USA every night? Did anyone else enjoy the Spice Girls performance at the Closing Ceremonies as much as I did?
I always feel strange in August being a grown adult and watching everyone else head back to school. I know kids I used to babysit going back to school, I know friends who are teachers going back to school, but my life remains mostly unphased by all of this in August. No big changes, no big milestones, the only real impact “back to school” has on me is “back to traffic and school zones.”
But seeing as how this summer has felt very strange with everything that happened with Mom beginning in May, I feel like in a way my family is heading back to school with her recovery. She began working with her physical therapist yesterday and when I talked to her on the phone today she sounded upbeat and happy. It made me feel good. It made me feel hopeful again. It also made me feel like maybe in a way my family was coming out from our own summer break. Our summer break though wasn’t full of lazy days, pool time and vacations but began with Mom’s relapse in May and was full of overnight hospital visits, stressful moments, big decisions, and a tough recovery road.
We survived it though. We are also continuing to survive. And this August as everyone heads back to school I am reminded of how life was in May as everyone was getting out of school for the summer. As I watched people update their facebook status to reflect summer vacation, Sister K and I were taking turns staying in a hospital room with Mom. I didn’t know how it would all turn out. I couldn’t imagine August even coming because I couldn’t fully comprehend what was even going on in that moment in May. But today I can see how far we have come. We still have a ways to go but that’s just more motivation as my family begins its own MS school year this August.
Do you have anyone in your life heading back to school this year, either as a student or teacher? Do you ever think of August as marking the beginning of a new year similar to January? Was your summer full of regular summer fun or any unexpected life events like mine? Has anyone else been enjoying the light traffic and no school zones this summer?
I am still on quite a high from last night’s big gold medal victory by Team USA Women’s gymanstics! I managed to stay off twitter, facebook and any websites that may have leaked the results early because I wanted to watch and be surprised when it aired on tv. It was great. Such a feel good moment. When the announcers referred to the Magnificent 7 who won in 1996 I could remember everything about that evening. Dad, Mom, Sister K and Me all sat in the living room watching as Kerri Strug nailed her vault to clinch the win- I remember standing up and screaming out of excitement.
This is also another Olympic memory that brought with it another moment of reflection on the past. Thinking back to 1996. I was 12 years old. Sister K was 9. We were still living at home. Only a family of 4. Also having no idea what the future held. Here it is 2012. And things are a little different now. Mom has MS now. At 12 years old I am not even sure I knew Multiple Sclerosis existed and now it is very much a part of my daily life.
Last night instead of celebrating in the living room with Mom and Dad, we celebrated over the phone. I now have a new memory associated with women’s gymanstics winning gold and in 4 more years it may look even more different. In the same way that every 4 years the players may change at the Olympics but the events remain the same, the spectators and fans around the world also change. I don’t know why the Olympics has me thinking about the passage of time so much. I think Mom’s MS has something to do with it. I think comparing memories to the past also has something to do with it. But the lesson I am learning in the process is to cherish every memory- the past and the present because you don’t know what memories of the future will look like. I sit here and wonder what things will look like 4 years from now as I watch the 2016 Summer Olympics and the next Women’s Gymnastics team compete.
Do you ever think about memories of specific events of the past and compare them to the same events today? Did you watch the Fab 5 win gold last night? Where were you in 1996 when the Magnificent 7 won the first women’s gymnastics Olympic gold medal?
I visited the parentals this past weekend. I headed down Friday after work and returned yesterday. I debated going a little bit but in the end decided it’d be more fun than just hanging out by myself in my apartment for the weekend. I needed a change of scenery. I needed it for myself.
I also wanted to go to see Mom. I can understand more how she is really doing when I see her in person verses hearing about it from Dad. Saturday Mom had a hair cut so Dad and I went to lunch while waiting to go pick her up. When we picked up Mom she looked great and was in such good spirits as Dad wheeled her out. I always think it’s amazing what a hair cut can do to give a boost to anyone. To keep the good spirits going, I immediately suggested we go to Nordstrom’s because they were having their big Anniversary sale. I knew it would really be a good pick me up for Mom to go to the mall and wander around. So we did.
As I was pushing her inside we were surrounded by the shiny tile floor, the bright lights and the clothes…Mom immediately said, “Oh I could just cry, you don’t know how happy it makes me to be inside of a mall.” It was a moment that most people wouldn’t pay much attention to, just walking inside of Nordstrom’s and focused on their destination. But for us this moment wasn’t about the destination but about the experience. It made me pause and truly appreciate this moment with Mom. A moment I would have normally taken for granted and not even paid much attention to that turned out to be a moment that meant so much to Mom.
Mom has always been very active, running errands and driving us around from place to place. In many ways MS has taken that freedom from her. Losing that has been difficult and I am now realizing how difficult it truly is. We try to take Mom places but many times she would prefer to just stay home. There are a lot of variables in trips outside the house that make her nervous and all of these variables are eliminated simply by staying home. But at the same time staying home is not uplifting for Mom. It can in many ways put her in a cycle of being very down about life.
I am not going to lie and say that doing this is simple. The process of the mall and then going out to dinner afterwards was actually very involved. Getting mom in and out of the car, in and out of the store, in and out of the restroom, there is a lot there. It isn’t easy. It requires a strategic balance between different levels of concentration and still maintaining a fun relaxed mood at the same time. I am learning to navigate not only places but also how navigate my mind in a calm way under stressful moments to improve Mom’s experiences in places. I am also learning in a big way that sometimes the best things in life are the ones you have to work for the hardest. In a way some of the most positive memories I can create with Mom right now are the ones that require the most effort on my part. We still have a lot of fun inside our home but activities outside our home can really lift up the entire family.
In a round about way I realized that in the same way it is important for me to personally get out of my apartment and go places to socialize, it is equally if not more important to make sure Mom is also. It doesn’t have to be everyday or even every weekend but it needs to happen. It’s important for Mom and it’s important for us. The bottom line: it’s important.
Do you recognize in yourself the need for a chance of scenery sometimes? Do you understand the balance between making sure you are having a fun time and concentrating on the task at hand? Are you hitting up the Nordstroms Anniversary Sale?