“It Bothers Me”

To start I have to say if you have been impacted by Hurricane Sandy in any way please know you are in my thoughts and prayers. I have been following the pictures of the devastation and flooding on twitter today and words can’t describe it. It is truly unimaginable. 

Weather is interesting in that regard. The storms of the weather and the storms of our personal lives. I think I could describe my family’s relationship with MS in that way. We go from blue skies to a turbulent thunderstorm in a split second. As I mentioned, Friday evening we were going to celebrate Mom’s 60th birthday with a nice family dinner. After Husband, Sister K and I arrived home we quickly changed clothes and got ready to leave. Husband left separately to go pick up Grandpa and meet us at the restaurant. Everything seemed to be going smoothly, until the rest of us needed to get in the car.

Getting Mom into the car has become a very stressful exercise. I think Dad is more used to it because he is around it all the time and deals with it everyday, but to be honest it unnerves me. I have to shut my mind down and exit the situation. Not allow myself to think about what is actually happening: Mom holding on to the car and struggling to angle herself the correct direction to sit down. Mom plopping/falling/finding a way to seat herself in the front seat of our family Camry. Then comes the real challenge of getting Mom’s legs into the car. Dad is bent over grunting as he lifts Mom’s legs and tries to swing them into the car. Mom yelling at him at certain points because it hurts, he is doing it wrong, etc. Dad getting frustrated. Mom getting frustrated. Feelings of distress and irritation at the situation. Then they have to do the other leg. Sister K stood by frustrated because she believes Mom isn’t trying to assist Dad and could do more. I just zoned out. Then it’s over and we move on as if nothing has happened.

But it did happen. I watched the entire thing play out. I could try to assist but sometimes it almost makes it more difficult. Mom gets more frustrated. We don’t know the “routine” involved. So we wait and let them do it. Then we move on until the next time. And then the same thing happens again.

I don’t really know what to think about all of this. I know families have their own routines of dealing with various things like this. Mom and Dad seem to have theirs figured out. But the fact that Mom’s ability to get in/out of the car doesn’t seem to be improving bothers me. It bothers me that my parents aren’t taking the SUV they were so proud to drive. It bothers me that these struggles extend beyond the car. It bothers me to watch Mom really struggle walking around the house, having issues picking up her foot just to take a step. Basically I feel like none of this is getting better because in all honesty, I don’t believe it is. To other people I give my canned fake answer that Mom is improving, doing physical therapy, she’s doing great. I say it all with a smile. But here, I can tell the truth and the truth is I don’t believe it’s getting better. I honestly think it may be getting worse. And it bothers me..for so many reasons I can’t put into words…and at the same time can’t figure out how to handle all of this. Because Saturday evening after dinner I got frustrated watching Mom walk around the living room and had to go upstairs. I had to leave the room. It appears my current way of dealing with this is mentally or physically escaping. I know that is wrong, but I don’t know what is right.

Do you think there is a better thought process I should have in these situations? Do you ever struggle to put into words things that bother you? Do you think it’s tough to admit that sometimes people aren’t getting better? Have you been impacted by Hurricane Sandy?

The Reality of Birthdays

Today is Mom’s 60th birthday. She kept saying leading up to her birthday this year that she wasn’t looking forward to it. She didn’t want to turn 60. But now here we are, ready or not it came and ready or not it’s happening. Sister K, Husband and I will be heading home tomorrow evening to celebrate with a family dinner.

We have had a lot of debate in our house over Mom’s birthday this year and the possibility of throwing her a party. Because 60 is one of those birthdays. It’s a big one and with big birthdays people sometimes have parties. We went back and forth over it and ultimately decided the timing wasn’t there for it. This is for a lot of reasons, most of which have to do with MS. Parties can be stressful and stress seems to flare up Mom’s MS. The two go hand in hand. As well, a lot of people haven’t seen Mom since her relapse and it would be stressful on her to know she was going to be seeing a lot of people for the first time. You also need to be on time to parties, primarily when they are your own. In case you are just tuning into this blog, my family is never on time for anything anymore. And on top of everything else but a very selfish reason- recently Sister K and I haven’t enjoyed seeing a lot of Mom’s friends.  Because when we see them we get asked a lot of questions about Mom and to put it bluntly we are just “over it.”

But I think this was one of those instances where we really did something in the best interest of Mom’s MS and really thought through the scenarios. I have to believe in the past we would’ve pushed ourselves to act as we always would have- succumbed to the pressure placed on us to throw a party and celebrate. Pressure placed on us by strange invisible voices, based on nothing in particular other than ourselves. So for the first time, we ignored the voices and blocked them out. We realized those ideas and plans don’t align with where we are at in our family. Mom never really made a decision one way or the other so in many ways we made it for her.

So instead we are going to go home and have a birthday dinner with just our family. Go out to a nice restaurant- probably be running 30 minutes late by the time we get out the door and it won’t matter one bit because it will just be us. Relaxed, carefree and celebrating Mom. To me it sounds like a perfect birthday considering where we are all at and a perfect way to honor Mom this year on her special day.

Happy 60th Birthday Mom!

Do you throw birthday parties for big birthday occasions? Do you ever feel pressure to celebrate and throw a birthday party for yourself or others? Would you consider this letting MS controlling our lives or being realistic with the MS in our lives? Do you think we made the right decision?

A Loss and a Twinge

This past weekend I had a little reunion with my college best friends/roommates. One of them recently had a baby (recent as in a week ago), so while we were getting together we arranged to stop by and see her. When we stopped by her house, my friend’s Mom was also there since she had come in for the birth of her new granddaughter to help out.

As I watched her Mom there, moving around, helping out and telling stories about the day her daughter delivered, I couldn’t help but feel a twinge of something. It wasn’t jealousy and it wasn’t anger, but it was something. A strange feeling. A feeling of knowing deep down that someday if Husband and I have children, it won’t be the same way for me. Mom won’t be able to just come and stay for awhile by herself. She won’t be driving herself to see me at the hospital. I don’t think she’ll be able to carry a baby or get up to help with things by herself. Little things. Little things that are not on my radar right now but someday they will be.

I know having children works differently for everyone. Some people have parents who are very involved and others are not. I come from a long line of women whose moms came and assisted once their babies were born. But for Sister K and me, I am not sure if this will be the case. I am not sure how it will work. I know it bothers Mom because she has mentioned it to me hypothetically before. We are a ways off from it being a real life issue, so I blow it off when she talks about it. But yesterday as I sat in my friend’s house looking at her Mom and her baby I couldn’t help but feel it. Almost like a twinge of loss. Mourning the loss of something that hasn’t even happened yet- the loss of a vision of Mom helping me take care of a baby someday that always sat in my mind. Now I am trying to dispel this dream from my mind as I embrace the new reality I have been given. I know it’s impossible to prepare for but I feel as though maybe in thinking about it now if that day comes I will be more ready for it.

Have you ever dealt with the reality of an idea you had for the future changing?  Have you ever felt the same twinge in life when you are around other people?  Does my twinge even make sense?

Listening to You

I am heading out of town this weekend to see some of my college friends and go to a football game. Looking forward to the weekend away full of laughing, reminiscing and catching up.

But before I left, I wanted to get some feedback from my readers out there– I know there is a variety of people who read this blog, some have MS, some have been affected by a family member with MS, or some find they can relate to the stories I share. I wanted to see if there were any topics, issues, ideas you wanted me to expand more on, talk about more, etc. Please leave me a comment and let me know.

Thank you for continuing to read. It means so much to me. Have a a great weekend!

A Secret Struggle

I have been having trouble writing recently. I think because (knock on wood) things seem to be going well with Mom. We seem to have reached a bit of a rhythm with all of this. I have also had a lot going on personally that was independent of Mom’s MS.

But one thing I haven’t been sharing and feel nervous discussing is the effect Mom’s MS is having on her cognitively. I have said before that this symptom is the hardest one for me to deal with- I can deal with Mom’s exhaustion, her trouble walking, her physical changes but the mental changes, they really bother me.

They bother me in a lot of ways. They are also one of the symptoms I don’t share with anyone. I am not sure why. Everyone seems to have opinions on Mom’s health these days. And they aren’t just opinions, they are strong words. Words that are heavy implying in many ways that we aren’t doing enough. These words though relate to the physical changes they are seeing in Mom. What people don’t realize is that there are many layers to this battle with MS and the physical is only the surface. In many ways it is only the beginning.

I also don’t like to talk about the mental changes because it is very sad for me. I am not sure how people on this blog would react to how I have been handling it…how Sister K and I handle it in order to keep ourselves moving forward. I am not even sure I am allowing myself to fully process and accept it. In many ways I think I am “masking my mourning.” I think Sister K and I possibly both are. Sister K has told me we can’t take this seriously and we have to laugh about it. And we do. After a conversation with Mom that doesn’t go in the right direction and pretty much goes in no direction, I call Sister K and we laugh. People may disagree with that approach. We aren’t making fun of the situation but in laughing about it, I think it makes it seem not so real.

These cognitive changes though, they are there. They are also tough. They are tough because I am someone who calls Mom everyday, typically on my lunch break. These phone calls though are becoming more fluffy in nature and more of a struggle for me as I am having trouble talking to Mom. I think she struggles to fully understand everything going on in my life. I am not sure she is fully focused and listening. In plain words, I feel like I am drifting apart from her. I find it incredibly unfair.

I also am 28. When my friends talk about their Moms it’s not like there is someone else in the group who also shares what I am going through. It’s not like other Moms may also have cognitive issues at this point. I hear about the advice their Mom may have given them, things they have done with their Mom, basically no matter what they say I am hearing their Mom is “normal” and mine is not. And I mask my emotions. I stay quiet. I engage about their Mom. I don’t engage about my own. It’s hard.

I know many people have different stories of things they have experienced with their parents. I feel blessed to have the Mom I have. I am in no way complaining or making fun of a tough situation. I am just expressing my sadness…mourning what I think is beginning to be the loss of Mom the way she once was…and finding a way to express this in order to accept the Mom she is becoming. I am also wanting to share this with you because this is part of my journey- another chapter in dealing with Mom’s MS.

Are there any struggles your loved ones have faced where certain symptoms bother you more than others? Do you have any experience dealing with cognitive issues as a result of an illness? Do you think it’s okay to laugh to deal with serious issues sometimes?

TV Talk

I have mentioned Mom and I are watching Dancing With The Stars this season…together but not physically together. Sister K is sort of watching as well but her participation is weakening. Dad is pretty much a “no show” at all times. But Mom and I- we are hard core.

Today I called Mom at lunch and wasn’t really sure what to talk about. So I just started talking about Dancing With The Stars. Did you watch last night? What did you think? Who do you like? Then we quickly got off the phone. It was quick and mindless but it was important. It was important because we were talking about a topic that had nothing to do with either of our lives but it was something we had in common. It had nothing to do with MS and nothing to do with my life. It wasn’t depressing but uplifting. It wasn’t deep but light.

Sometimes Mom and I struggle with the serious conversations. We struggle with discussing stories that require deep thought and analysis. This is kind of tough for me. It continues to be tough for me because it’s part of the changing nature of our relationship because of MS. I believe what Mom desires is to keep things light. Dancing With The Stars gives me some easy help in this department. It provides me with not only a light topic to talk about, but it is a light topic I enjoy talking about. I know it may not make a lot of sense but to someone who is looking for stable similarities in a relationship that is full of constantly evolving differences…this is important to me, important to us.

Do you have any easy/light conversation topics you rely on? Do you believe TV isn’t the all powerful evil force it is made out to be but can sometimes bring people together? Have you been watching Dancing With The Stars?

Stuck in The Middle

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?

Making A Mess

I like to fix things. Within my family I sometimes consider myself the “peacemaker”/”the fixer,” but a problem arises when I take it upon myself to do these things without being asked.  This happened last night…via the phone.

I called Mom in the evening to talk. She said Sister K and her were not getting along. So I got on the phone with Sister K and began inserting myself where I shouldn’t have. She said Mom wasn’t doing her exercises like she is supposed to so she was frustrated. I have mixed emotions on this. Sister K and I try really hard to balance this out- Mom is still our Mom. We can’t make her do anything. At the same time she does need to be pushed and at times told to do things when it involves her physical therapy. This is just how this works in our family. This is our dance.

But the issue comes when it puts Sister K and I in a tough spot. We need to focus on enjoying Mom and keeping our visits with her positive. This benefits Mom and it also benefits us. At the same time we also feel a little responsible to push Mom along. Encourage her to take more responsibility, more initiative with her physical therapy. The problem has and continues to be that this very element of MS is something that has never been a big part of Mom’s life even prior to MS.

The point though of this particular instance is I inserted myself into “fixing” a situation that quite frankly was not my place to fix. I don’t know why I did that, but I did. I think with Mom’s MS I am finding myself doing this more and more. I don’t know if I am trying to shift into a bigger role in my family. In many ways I think all of our roles are shifting slightly. But I have to find a way to balance that shift and to remember that at the end of the day, Mom is still the Mom and I am still the daughter. And in instances like this, I am Sister K’s big sister, not her Mom. And I have to let issues arise and let everyone work them out themselves without getting involved when it’s a situation no one asked me to get involved with in the first place- another lesson learned.

What is your role in your family? Do you ever find yourself trying to help in a situation but quickly realizing it’s not your place? What are your weekend plans? Have a great weekend!

Living in a Fantasy or a Reality?

My parents house is an escape from my 28 year old life. But at the same time it is also a place of the glaring reality of my life as a 28 year old daughter. I don’t live in the same city as my parents, therefore I don’t see Mom everyday. I don’t even see her every weekend for that matter. Because of that I talk to her very frequently, but it also means I am not visually seeing the effects of MS on her life everyday.

So when I go home it is sometimes a tough experience. Tough because it forces me to wake up from this fantasy I am in and enter reality. This reality isn’t the positive phrases we so often rattle off to people when they ask how Mom is: “Mom’s doing so much better;” “Her walking is really improving;” Instead, I can see with my own eyes her struggle to walk, her struggle to move, her cognitive issues that we don’t talk about and the reality that maybe she really isn’t improving. But, the fantasy of Mom in my head is sometimes better than the reality. It is that fantasy that allows me to hope, even if it is just for a short time. Because my harsh reality tells me my Mom has MS and it may be headed somewhere bad.

I am not sure if this is a coping mechanism or just me- but my mind thinks of Mom one way only to find out in person she is different from what I envision. I don’t know if it is okay to live in that fantasy or if I need to focus more on living in the reality.

Do you ever find yourself struggling to deal with the reality of a situation verses the fantasy of it? Have you ever had an issue with envisioning someone close to you as being healthier than they are when you see them in person? Do you think you always need to live in reality or sometimes you need to live in the fantasy to allow yourself to hope?

There Will Be Bad Days

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”?