I was home visiting one weekend and Dad was in the other room watching tv. Mom and I were hanging out in my parents bedroom for some reason and I was flipping channels trying to find us a good chick flick to watch instead of whatever “boy movie” Dad was watching in the living room. I found a show on ABC Family called Lucky Seven . We like these silly girly movies. They have been our thing for as long as I can remember. Growing up in a family of girls, a chick flick usually wins out over an action film. Plus Patrick Dempsy, aka Dr. McDreamy and Kimberly Williams from Father of the Bride, it’s the perfect combination for us!
I turned on the movie and sat on the bench at the end of my parents bed with Mom. We were watching the movie, just sitting there. No words spoken. Happiness being felt. Mom took my hand and said “Will you please just love me and be patient with me.” I don’t remember what I responded but it doesn’t matter. In that one sentence Mom summed up how she felt and continues to feel. It was a sweet moment and made me wish I could freeze time so we could stay there forever. Sitting on the bench, watching a movie, Mom not in pain or stressed, me not worrying or stressed. I don’t remember what had exactly happened earlier in the day but I am guessing I let my lack of patience with Mom get the best of me. I have a tendency to do that…
I want to remember that moment because it was a gift. It was simple. There weren’t a lot of words and there was not even a lot of activity. Many people would say there wasn’t even a good movie on tv, but I would have to disagree since we love girly ABC Family movies. The point is that as MS has come into our lives our time together has changed and the activities we share are different. We don’t run around as much as we used to but I find I cherish our simple moments more. They cause me to pause more and really focus on them. Today I don’t remember the shopping trip we may have had that weekend, even where we went for dinner but I do remember this evening spent holding Mom’s hand while we shared a movie. I need to focus more on our sweet moments and less on big picture stress.
In moments like this MS isn’t the focus but the love of a mother and daughter is and I have an ABC Family movie to thank for that.
I can’t put into words the love and respect I feel for my Dad. I believe deep down he is the reason our family is surviving Mom’s battle with MS. I have watched and continue to watch a transition as my father has become a caretaker. It brings back unsettling memories because I just watched my Grandpa go throught he same thing with my Grandmother as she battled Alzheimer’s. I watched as he became a caregiver to her and feel now I am watching Dad go through the same transition. And it is hard to watch.
Since this transition began I have felt my mind sharpened to the reality of marriage. My family is not large and up until I got married these two men, were the biggest male influences in my life. They still continue to be large influences as well. As I got married in 2010 and said my marriage vows, they really meant something very personal to me because I felt I was watchingthe tough parts of those vows lived out everyday. I understood the meanings behind the powerful words “for better of worse, in sickness and in health.” I understood the meaning of a committment and what it can mean through the tough times.
But I struggle with Dad’s transition in becoming a caretaker. He basically is one but I prefer to believe he is transitioning because it is difficult to think of Dad and Mom’s relationship that way. It is something I never gave much thought and if I did think about it, they were thoughts that this would not occur for many years from now. I also struggle because this level of responsibility and constant caretaking can take a toll on anyone. Dad will talk to me sometimes about what is going on and I don’t know what to say. I don’t know how to offer support. What I want to do is pack up and move back home. I want to find a way to be there for my parents all the time. I want to help him with Mom, be an extra set of hands for him and just provide extra help. But this hasn’t been in the cards for me up until this point and I don’t think it is.
So what can I do. I feel helpless again. I continue to feel helpless. I feel helpless because the best way to offer assistance in this situation is to be there. I also feel helpless because there is no way for me to be there except for brief visits home on the weekends. In the past year my husband began graduate school for his MBA so we moved about an hour and a half away closer to my hometown. We were 4 hours away before. This was a step. But without physically being there, how do you offer assistance. How do you help someone who is doing everything and you are doing nothing. And he does it all- he takes care of Mom full-time day/night and works full-time. He balances both of those responsibilities and he never complains. So I complain for him because I know he must be exhausted. I know he must struggle. How does he do it I wonder. How.
I think it’s love that makes him do it. It’s love that keeps him going, keeps him supporting Mom. Love is powerful but is it enough? I still struggle with how I can help him. How can I be there for him. Going home more weekends, calling to give him a sounding board to talk to, reassuring him that what he is doing is so important and we are all here for him. The struggle continues and it’s something I think I will struggle with for a long time. But it’s a struggle because of the love I have for my family. It’s a struggle because I want to be there for them as much as possible. So while it is a struggle, it is a struggle worth having and one I should feel fortunate to feel at all.
I feel overwhelmed. Overwhelmed by Mom’s MS. Overwhelmed by my thoughts about Mom’s MS. Overwhelmed with my inability to focus on one particular thought and come up with a way to fix it. So I think I am going to rattle. Rattle my thoughts off and see if I can come to some sort of plan for myself. A plan to mentally deal with this because it’s becoming a lot.
I wish there were a more direct path with solutions to fighting MS. I feel like everyone has tried something different. You could try this but this worked for me. Maybe you should try this. Lately Dad is talking a lot about considering stem cell research for Mom. He is researching it, talking to people about it but Mom doesn’t want to talk about it. I understand both points of view. But I think we will try anything because we all feel helpless. I feel helpless as I live my life and watch Mom get worse. I think the MS is not only impacting her physically but it’s changing who she is, how she sees the world, how she lives her life. It’s changing all of our lives. It is putting an added stress on our family and on each of us. What is the best treatment, how do we continue living our daily lives trying to keep them as normal as possible, how do we encourage her, how do we live with a disease where we take 1 step forward as a family and shortly after are forced 2 steps back. And we continue this dance as we continue our lives.
I guess I need need to start taking things day by day. Everyone says to just live life day by day, take it one day at a time, and I agree with them but I never believe it in my heart. That’s where the life of a planner comes into play. I like plans. I like to make them. I struggle with taking things one day at a time. But what if I didn’t. What if I could just not think too far into the future but just into my day’s future. What if Mom’s good days and bad days were just that…a good day was reason to smile and a bad day was not a reason to panic that things are getting worse. They were simply just a good day and a bad day. Because I tend to not enjoy the good days as much as I wish I could could because I am focused on the bad day that recently passed or worried for the next bad day to come.
So how do I do it? How do I train myself to take things one day at a time? To not jump to the worst conclusion in a bad moment and to celebrate the good moments more.
Seeing old friends. Fear of the unknown. What kind of challenges await me there? Will I be able to get inside? Will my legs be stiff? They know I have MS but will I be able to hide it well enough so they don’t know how bad it has gotten? These are only a few of the thoughts I can imagine go through Mom’s head as we go into a new situation. A new situation where you can’t visualize what the future holds. You can’t visualize how it will all go down. Life is a big unknown but when MS is involved, it makes the unknown always scary. Never exciting. Not anymore.
Driving up to visit us last Friday I imagine all of these thoughts were in Mom’s head, plus some others. If it had just been a visit to see Sister K and me it would have been relaxed. There would not have been nerves but excitement. Instead though we were meeting with one of Mom’s college friends and her family for dinner. It brought an entirely new set of cards to play with Friday night. Mom got so anxious in anticipation of the visit that she psyched herself out. She let the evil weasels get the best of her. The problem is once the weasels begin to attack, if you cannot get a handle on the first one the others quickly pop up, taking over. They can take over fast too.
I was not there as they took over, but Dad and my Grandpa were. They were there as the weasels took over Mom’s mind. Took over her thoughts and they brought on stress which when mixed with MS is never good. Sister K had made some phone calls because they were running late. We were putting our stories together to determine what had happened. Then Mom called me crying. She called me crying like I call her crying. There was a panic in her voice, a please help me tone and helplessness. As I listened I almost felt like I was in a dream. Is this really happening. What do I say. What do I say to my Mom when she is always the one who provides this comfort. She is better at this than me. This isn’t my strength. I wish she’d called Sister K. Sister K always knows the right thing to say and I am a gamble. Sometimes I get it right and sometimes I get it terribly wrong. So I thought of Sister K and what she would say. I came up with a new plan for the evening with the delay, that’s the easy part for me. I comforted Mom and assured her it’d be fine, that was the hard part for me. I felt a different sadness though in this situation. I felt sad becuase this was happening. Because this was a nightmare. Becuase no one else I know has to deal with this besides Mom. Because Mom wants nothing more than to get in a car for a little trip and have it be smooth sailing. Because it isn’t fair. It isn’t fair. It isn’t fair. I wanted to scream when I got off the phone with her like a little child and throw a tantrum with legs kicking and arms wailing it’s not fair. Because it’s not.
I also thought about how lucky so many people have it and they don’t even realize it. How simple their lives are in comparison to mine. How they have never watched a disease this horrible take over their Mom. How they have never seen their Mom feel so helpless and felt helpless themselves too. It was a tough tough afternoon. It got resolved as it always does. My family stepped up and we did our thing. Sometimes in situations like this where other people are involved I feel as though we are performing on a stage and some nights are easier than others. But somewhere in the middle of our “performance” the problem that was once there is lost. The happiness we felt we were faking takes over. We begin to laugh again genuinely, not forced. Our minds stop wandering from what just happened to the present. We stop saying in our heads “it’s all going to be okay” to calm ourselves down and instead we are comforted becase we begin to feel like it is all okay. We survived another battle with MS. We didn’t let it bring us down again. Maybe it’s okay to perform, to focus on the stage because by forcing ourselves on stage there is no time to be sad. No time to dwell on solutions to a problem that can’t be fixed. It is on that stage where somehow life becomes okay again.
This weekend Mom came up to visit Sister K and me. Dad brought her up Friday evening and my Grandpa tagged along for the ride. On Saturday afternoon after the wedding shower Sister K and I drove Mom to meet Dad at a halway point. A lot happened this weekend in a short amount of time. We had incredible highs and incredible lows. But, that’s how it always seems. It was also a lot to process in approximately 24 hours of a visit. I plan to write more about the weekend and the lessons learned. For now, some general weekend lessons:
1. Stress and MS are not friends. Neither are helpful under a perfect scenario and together they are full blown enemies. They antagonize each other and they do it at Mom’s expense.
2. I know MS is awful but I forget how much this has truly hindered Mom’s life. How it has been a big blow to her plans and dreams for this stage in her life.
3. My family is full of not only love but committment. Committment to Mom and committment that we will not allow MS to hinder her life or our family’s life anymore than it already has.
4. There is a big fear of the unknown for Mom. I need to find ways to eliminate that fear.
5. Laughter is an amazing medicine. It can calm nerves, make people smile and even eliminate pain for a brief period.
This weekend two things happened. Simultaneously. Without me being aware. My hatred for MS grew while at the same time my love, admiration and respect for Mom grew.
Mom is coming to visit tomorrow until Saturday. We are going to attend a wedding shower for one of her college friend’s daughters Saturday. Dad is going to drive her up and then head back home. She’ll stay overnight at Sister K’s apartment and then Sister K and I will drive her back on Saturday. It’s easier to stay at Sister K’s because she has cement floors making it easier than carpet for Mom to roll around with her walker, and then it’s also just the three of us girls.
We were on the phone today at lunchtime working out all of the details of this and who would drive up, back, etc. For a second I felt selfish. I wished we didn’t have to orchestrate all of this. I wished a simple overnight trip didn’t require a big plan filled with coordinating cars and people. But then I thought to myself, stop. Stop thinking these thoughts. Mom is here and fighting this disease everyday. I am also blessed by her fighting spirit everyday.
By planning a weekend trip with a few extra logistics, by not getting frustrated and canceling plans- that is how Dad, Sister K and I also fight MS. We all have our role in this fight against Mom’s MS and it’s important we remember that always.
Yesterday I wrote about Mom’s dilemma regarding leaving the house with a friend in the afternoon since she didn’t have her walker. I resisted every urge inside screaming at me to problem solve. Instead I just backed off. I hoped it would work out alright. I also knew I didn’t have a choice except to let it resolve itself. It did, but not without chaos for my mom.
She said she took the walker she normally has inside our house out into the garage to wait for her friend to pick her up. In the process she knocked over our recycling bin and bottles went rolling everywhere. One of those bottles was glass and went rolling out into the street and broke. When her friend arrived she didn’t mind at all picking up the bottles and even picked up the glass pieces. This is friendship at its finest. My family has learned a lot about who our friends are through Mom’s diagnosis of MS, who we can count on, who we can share our pure moments and who Mom isn’t afraid to call to ask for help.
The entire situation makes me want to scream out of frustration because this is not the first time a tiny issue because a large one. I feel like when MS is involved, it turns rain into pouring rain; molehills into mountains; you get the drift. It makes life difficult. A simple mishap like knocking over a box of bottles becomes a huge problem and one that cannot be taken care of easily when you are by yourself. The entire situation made Mom stressed and frazzled. And rightfully so. It would make me stressed and frazzled and I don’t have MS. In the end she was happy she had decided to leave the house and spend the afternoon with friends.
In hindsight, there are lots of lessons to learn. We need to plan better to make sure Mom has what she needs if she is planning to leave that day. It’s okay for me to back off and trust a situation can resolve itself on its own. Most importantly, Mom has some great friends, people who have become like family to us. These friends hold our hands and are there for Mom because Dad, Sister K and I can’t always be there. These friends are little blessings sprinkled throughout our lives.
I call my mom everyday at lunchtime. It’s our time and we fondly refer to this hour as “lunchtime chats.” These actually started when I began my first job and realized I had a lunch hour everyday but not necessarily someone to spend this hour with. My mom became just that person. During lunchtime chats she hangs out with me on the phone while I run errands, order coffee, go for an afternoon walk or sometimes even eat my lunch. Our conversations vary and I can usually tell by the tone of her voice, either carefree or a slight hint of stress that only a daughter could pick up on, how she is feeling on a certain day.
Today when I called she was a little uneasy. A friend was coming to pick her up and realized her walker was in my Dad’s car and she couldn’t get ahold of him. Mom also started talking about feeling nervous because she is just scared. She didn’t say what she is scared of but I know. We all know. It’s a silent understanding. She is afraid to fall and afraid of not being able to get up.
My mind almost felt paralyzed becuase I felt so sorry for her. I wanted to fix it. I wanted to solve this problem. I wanted to say the right thing so badly. This is the third day I have written these words and I am beginning to notice a pattern. But I can’t fix it. I can’t fix it because logistically I am not in the same city. I also just cannot fix this. I also had a hundred thoughts flooding my head because I didn’t know what to say. Do I try to comfort my mom, I tried rattling off the list of her worries and discussing each one but I knew that fear in the back of her mind was too great and preventing her from being rational. So instead of drawing it out and making both of us frustrated I got off the phone. It ended pleasantly, I told her it would all work out and not to worry. I did this because all I could think was I don’t know what to say or do, I should probably just get off the phone before I end up frustrated and stressing her out more. It has bugged me all afternoon because I don’t know if I did the right thing but I also don’t know that it was the wrong thing.
My mom’s fear of falling is very real because it has happened. I can feel her uneasiness when we are out in public, I watch as she is very careful and very focused, not moving too quick, making sure every movement is calculated. I can feel it and it makes me feel sad. Sad because she is sad. Sad because her life has changed. Sad because I can’t fix it.
But, I can continue to be there. Continue to have our treasured lunchtime chats and continue to talk about these things and help as much or as little as I can. Maybe I help more than I realize. It’s interesting how I never know when I am successful in helping but always definitely know when I am unsuccessful. I come from a loud family of all girls. There is never a question if someone is unsuccessful in helping. Everyone knows because they can hear it!
Sister K came to pick me up so we could do some Spring shopping together yesterday. Once I hopped in the car she proclaimed, “I want to call Mom.” So we called Mom. We put her on speakerphone and chatted with her en route to our favorite store. She felt like she was there and it made us feel like she was there too. We talked about what we were doing, our plans, what we were shopping for and what we had been up to all day. Mom said it had been a tough day because of her leg spasticity with issues that began in the morning. We listened as we always do, talked about it a little bit without getting too deep and then lightheartedly changed the subject.
I often wonder the best way to respond to my mom when she really opens up about her symptoms, when she really tells me how she is feeling. Do I tell my mom I understand even though there is no way to completely undertand. Do I pursue my first inclination to be the problem solver, the problem solver who often ends up putting her foot in her mouth. Or do I do what Sister K and I did, lightheartedly change the subject so she doesn’t have to think about it. So I don’t have to think about it anymore. This part is murky for me. Murky because I enjoy relating to people, understanding them and trying to help them. Murky because for the first time in my life I feel like I struggle with relating and I struggle with responding. Especially murky because it involves one of the most important people in my life.
I try to think of myself and if it were me with MS, how would I want people to react, what would I want them to say. The answer is I don’t know. I don’t know because I don’t even know how I want people to react or what I want people to say to me about my mom having MS. I seem to struggle with this because if they say one thing I wish they’d said something else, if they say this I wish they’d said that. Nothing is good enough for me so I wonder if my mom feels the same way. I have never asked, never thought to ask. I don’t know why. I wonder if she doesn’t know the answer either.
So what do I do while I search for the perfect response, I change the subject. I find a silly thing to think about, to talk about and to laugh about. We all laugh. Sister K and I take turns finding the silly change of subject and we laugh. During tough times we keep our conversations lighthearted. Senseless. Ridiculous. The more outrageous, the better. We pride ourselves on these silly comments, crazy conversations, strange phrases only our family understands. We use these as our crutch. Sister K and I use these tools to bring a smile to Mom’s face, we can see it in person and feel it over the phone. Laughing and smiling. Our family’s greatest weapons against a disease that is trying to attack our laughter and smiles everyday.
My family has always been late for things. For as long as I can remember punctuality was not a characteristic that people would use to describe us. It was never done in a rude fashion, but just about 5 to 10 minutes behind schedule. I say typically because it was selective. We were on time when it really mattered for things like school, dance class, weddings, etc. Things where punctuality was important and necessary. Now that my mom has MS our tendency to run late for things has taken on a new life of its own. We operate on a completely different time schedule, usually running very behind.
It’s not all my mom’s fault, I can’t completely blame her at all. Let’s take Christmas 2010 for example. I have always had a bad habit of biting my nails but I finally grew them out for my wedding…and so I could wear dark nail polish for Christmas. As we were running around trying to get out the door for Christmas Eve mass I realized I had forgotten to paint my nails. At this point my dad was running around looking for the checkbook, mom was making sure everything was in her purse and my newlywed husband just stood there in awe of this. This is because his family runs 10 minutes early to everything, but I digress. We had about 3 minutes before we were walking out the door. My sister looked at me and said we’re going to paint them, grabbed her nail polish and we did it. We put my hands on the kitchen counter and with 3 minutes to walking out the door she painted my nails. They were drying as we arrived at church.
I bring this up because it makes me laugh but also because my family is having to learn to be a little more organized to get out the door now. I also have to learn to be okay with the fact that we do run a little later now. I have a slight Type A personality when it comes to these things. I don’t mind running a little late but I have a point when I decide it’s too late. It’s a basic formula for my meltdown: Getting out the door drags on for various reasons that don’t relate to my mom (forgetting keys, forgetting garage openers, forgetting sunglasses) + my mom needs extra time = me putting stress and pressure on my mom in the situation.
The reality of the sitaution is the world is not going to end if we are late. We will get there when we get there. We are not going to be in trouble if we are late. One of my college best friends used to say “what are they going to do?” and that’s the attitude I need to have. I need to repeat these statements over and over. Over and over. I need to have them screaming in my head in these moments, drowning out whispers of stress as I begin to pass the whispers on to everyone else. Instead I need to take a mental step back in these moments. I need to help where I can but I also need to treasure the chaos, treasure these moments. Treasure that we are all together piling into our car to go somewhere the same way we have done all my life. We are all together in these moments. I need to focus on the moment and enjoy being fashionably late x 2.