Up and Down

Do you ever ride elevators? I do…everyday. It’s how I get in and out of my office. I have often thought of them as the connection between two worlds. I board the elevator en route to my “working self.” In the evening I board the elevator en route to my “real self.” But while I am in the elevator it’s just quiet and mindless time with myself as I transition and switch gears. This morning I really felt that transition, and in a way, I didn’t want it to end.

I called Dad’s cell phone this morning while I was driving to work just to see how everything was going. It was off so for the next 5 minutes I debated calling home- Dad was either still home getting ready for work or he was at work and in a meeting. So I called….it rang about 6 times, I nearly hung up figuring Mom was there but sleeping and then Dad answered. Dad got on the phone and said he was just sitting at the kitchen table praying for help with everything and I called…it was strange.

On Monday Mom’s doctor switched her spasm medication to Baclofen. Beginning yesterday, Mom and Dad started seeing real improvements with Mom’s walking and her muscle ability. Then last night Mom was sick and my parents had a tough night. Dad doesn’t think Mom ate enough yesterday and that mixed with an active day seems to make Mom’s systems go very out of whack. But regardless, it was a very tough night. I have had those nights before with Mom and they can be exhausting in ways you don’t even realize. To put a complicated experience simply, they are draining.

Dad knows he has some tough decisions to make regarding Mom. He has found a counselor and is going to approach the topic with Mom. Regardless of Mom’s decision, Dad said he needs to see someone. The person he found deals primarily with people diagnosed with diseases like MS and he comes to your house. We’ll see how it goes, but I don’t predict Mom will take this well. I am realizing though that Mom’s MS is impacting each of us differently. Dad, Sister K and I are each impacted by this and the two people whose experiences are the most similar are Sister K and me. While we can relate to Dad, we also cannot because this is his wife he is going through this with, not his Mom. Even though we are all in the same family, the relationship is different. The stress involved is different and the emotions are different.

I talked to Dad pretty much until I got to work and then I stood outside my building talking to him a little longer. I then walked inside and got into the elevator. I stood there with my head leaned back against the wall and just let my mind go numb. I told myself that when those doors opened the thoughts associated with Mom’s MS needed to move to the back of my mind and the positive, friendly and happy employee that I am needed to move to the front. When I leave work today I will shift my mind again. But this morning I was thankful for my quiet and alone time in the elevator. I was able to give myself a pep talk and give my mind a rest behind the doors of the elevator. It gave me a space to be completely alone as I moved both physically and mentally between places.

Do you ride elevators often? Have you ever seen an elevator as a transition place between two different places? Do you get a secret joy when the elevator goes the entire distance you need without stopping? Now for the fun one, have you ever gotten stuck in an elevator?? (I have…) Hope you have a great weekend!

The Magic of a Snow Village

Christmas is Mom’s favorite time of year. She has always loved Christmas, loved decorating for it, loved everything about it. Unfortunately, Christmas decorating also makes Christmas a very labor intensive holiday and with a Mom who has MS that can be challenging.

Sister K was home with Mom and Dad the week before and week of Thanksgiving. She stayed with Mom one week while Dad was out of town and the other week Dad had knee surgery for his torn meniscus. While she was home she basically did all the Christmas decorating for Mom. She set up the tree, put up the stockings, displayed Christmas pictures on the wall, the list goes on. One thing she did this year that we haven’t done in awhile is set up the pieces of Mom’s snow village.

Some people can really go all out with a snow village. I have always dreamed of being one of those people someday. But while Mom has her pieces, we don’t traditionally set them up every year. It is a hassle and can be kind of a pain when you get down to it. But this year Sister K got them all out of the box and had them sitting out on the dining room table ready to be placed and assembled. So Sunday evening before she and Husband headed back, Sister K and I worked on the snow village. The pieces included “The Flamingo Hotel”, “Dick Clark’s Band Stand studio”, “Santa’s work shop”, a school, a toy shop, a house and restaurant. We had people, trees, bridges, walkways and signs. We created our own little world on the dining room table. But more importantly, I felt like this was a very special way for us to brighten up the holidays for Mom.

Mom walks slow and to get from her bedroom to the kitchen she pretty much walks through the dining room everyday. The snow village gives her a fun decoration to look at while she walks through in what is sometimes a tough process for her. It gives her a reminder of her daughters who set it all up. It also puts a different spin on Christmas in another room of the house.

As I sat there and looked at the snow village all lit up Sunday evening (praying Sister K and I didn’t start a fire with all the things we have plugged into two surge protectors), I just felt overwhelmed with happiness and love. As you stare at a snow village your imagination can take over. Looking at the places and the people. Imagining what life would be like there. I was happy we had this world of happiness and perfection to give us a moment to forget about any issues within our family- a moment to just reflect and feel the love of each other, the love of an imaginary community and the love of the holidays.

Did you put up your holiday decorations over Thanksgiving? Do you have a snow village inside of your own house? Do you believe in the power of imagining and reflecting on something imaginary to change your mood or help you to appreciate the wonderful things in your life?

The One Person Who Understands

If you have been reading my blog the past couple of months you may have noticed I am slightly obsessed with Dancing with the Stars. Last night was the finale and I was so excited when they announced Melissa and Tony had won the mirror ball trophy. I really liked all of the remaining couples but after 14 seasons Tony had never won it once and I felt like he really deserved it! Beside the point…back to my blog post…

After the show ended I was so excited. My sister happened to call and I was telling her what happened. She was laughing at me and saying that’s great sis, now moving on..she doesn’t share in my love for the show. I got off the phone and just stood there. Husband wasn’t home yet and I was all alone in my excitement. I needed someone to share it with and I had this overwhelming urge- I need to call Mom. I know Mom will understand. I know Mom is just as excited as I am. So I called home and we yelled and shrieked over the phone together. We talked about the final dances… what we thought was going to happen… she didn’t realize Tony had never won… she also liked Shawn and Derek but was happy for Melissa and Tony…we went on and on… you would think we were personally involved. In many ways we felt like we were.

In those moments though and on that phone call Mom was just Mom. She was my Mom. We were laughing together and bonding over something that only we both love. Dancing with the Stars was our show all season. It’s these moments that I cherish right now. The moments where I have this overwhelming urge that “I have to call Mom.” The moments where I know she is the only person in the world who will react, respond or understand what I have to say. The moments where I am reminded of Mom for who she is without MS.

So last night I was very thankful. Thankful for a TV show that gave me back Mom for a moment and reminded me of why I do continue on in my fight against Mom’s MS. Because in the dark moments whether she knows it or not, I am fighting for her. Fighting for the Mom who sits on the phone with me yelling about Dancing with the Stars finale results…fighting for the Mom who many times is truly the one person in the world I know will understand my emotions.

Do you have someone in your life you call to share in silly moments of excitement? Is there a reality TV show you are hooked on and feel personally invested in the results? Do you think it’s possible that in the midst of this dark week I found a bright spot to cherish with my Mom? If you watched Dancing With the Stars, what did you think of the results?

My Two Moms

I am working through a lot of feelings in my mind over the past 24 hours. I am trying to find a way to somehow get a grip on the changes going on with Mom. As I sat in Mom’s doctor’s office yesterday while she was getting upset at Dad and me I had this realization- this is not Mom speaking, this is MS speaking. It reminded me of what I used to say to my Grandpa when my Grandmother who had Alzheimer’s would be so mean to him- it’s not her, it’s the Alzheimer’s.

It is incredibly difficult for me to on one side be so angry at Mom but then on the other side I am laughing and talking about meaningless stuff. I can’t hate her. She is my Mom. I am not going to cut her out of my life. She is my Mom. I’m not going to stop speaking to her. She is my Mom. But in the same breath, as I sat there yesterday and watched her I couldn’t help but think, this isn’t my Mom.

In a perfect world I wouldn’t have to split these two identities up. In a perfect world Mom would cope with the fact that she has MS and start to accept it and deal with it instead of lashing out with such anger and borderline depression. But I don’t live in that perfect world. In my world I have a Mom who sometimes is the most wonderful Mom in the world and is the woman who is one of my best friends and confidante. Then it flips and I have a Mom who is angry, depressed, hurting, upset and creates a person who I don’t recognize. A person who I struggle to understand and a person who makes me angry in return.

I am not sure if it is the right frame of mind to take or not, but for the next few days I am going to try it out. Try to rationalize my two Moms to see if it can help me get a grip on the mix of emotions I am currently feeling.

**I can’t thank you enough for the support I received from such wonderful readers yesterday. Your comments, feedback and support meant the world to me. I pour my heart out on this blog and I never know how it will be received or how it will be taken by others. I am finding that I have made my own friends here in this virtual world as I navigate this sticky part of my life. You come here to listen to me share and not to judge. It means so much. I wanted to say thank you for being part of my journey in dealing with my Mom’s MS.**

Have you ever seen two distinct and conflicting personalities in someone you love because of a disease? Do you think this is a good or bad approach to try to take?

Officially at a Loss for Words

I don’t even know where to begin to explain my day. Where to begin to explain my emotions. Where to begin to explain how I am processing my morning. So I am just going to jump right in…

Dad had knee surgery for a torn meniscus last Tuesday. As of today he can drive but he can’t help Mom in and out of the car. So this morning, I stayed at home to accompany Mom and Dad to one of Mom’s doctors appointments with her neurologist. Then I would drive back here and go to work this afternoon. To start Mom was frustrated her appointment was so early in the morning. She doesn’t like mornings. She made this known. The reason the appointment was early and had been moved up from her original slotted time is because we have been concerned she may be experiencing a relapse of some sort with her diminishing abilities to walk.

All is well once we get to the doctor’s office. The waiting room, the pre-exam room- Mom and I are looking at the new Oprah magazine and checking out Oprah’s favorite things. Then the doctor comes in and then my morning gets flipped on its head.

The doctor is asking Mom simple questions-

Have you fallen at all recently? Mom answers no. I stare at her stunned. Mom has fallen 4 times in the past 3 weeks. Dad politely explains she has fallen and we are concerned. Mom gives Dad a death look. She explains the reasons for every fall. Regardless of the reasons, she has still fallen.

How is your mobility? Mom answers fine- she uses a walker at home and the wheelchair out in public. This time I explain that is what we are concerned about. Her physical therapist has noticed significant decreases in her mobility from where she was a few months ago. We have noticed it as well. This time I get the death look.

At some point amidst all this discussion Mom begins to get very irritated with both Dad and me. We were being polite and not being aggressive. We were voicing our concerns as best as we knew how, knowing they would lead to irritation on her part. The following statements come out towards Dad: “There is no cure for this. You keep saying to work harder so I’ll be able to walk. I am not going to be able to walk. I have a disease. I wish you would just leave me alone. You both stress me out.”

The Doctor brings up taking another MRI to see if there are possibly more lesions causing the walking issues. Mom flips out about the MRI. Says she doesn’t like doing them. They are uncomfortable in the small confined space, she has to get a shot, she becomes very distressed and has to lay still and she can’t lay still.

I begin at another point to talk to the Doctor about the progression of MS. Where is this headed? Could Mom end up bedridden if she doesn’t do something or take a more proactive approach with her health? The Doctor tells Mom her main concern right now is Mom’s mood. She tells Mom she would like her to go see a counselor and there are some that have been recommended by the MS Society. She tells Mom she doesn’t think she has dealt with this…has admitted to herself that she has MS. She tells Mom the choice to get an MRI is up to her. It is her health. It is her body and her decision. She looks at Mom while she says this to reiterate that it is her choice. I respected that a lot. Mom is supposed to let her know what she decides. That’s where we left it.

I cannot even process all of that right now. I really can’t. Mom cried the entire way to the car. Didn’t speak to Dad or I. Fell asleep on the way home and went to lay down when we got home. We picked up Subway sandwiches, I loaded my car and drove an hour and a half straight to work. Amidst all of this I almost had a meltdown over a woman being snippy to me about a temporary parking permit because I am in Husband’s car today. I feel I am officially on overload. I am frustrated. I am angry. I am sad. I am irritated. I am also at a loss. I am mad my family is stuck dealing with this. I am mad it is easier for other people to deal with and not my Mom. I am mad I got the Mom who won’t be proactive in anything having to do with her health. I am mad because I don’t believe this has to be this hard. MS shouldn’t be this dark cloud hanging over our life. It should just be part of our life. And the biggest shock was when the Doctor brought up Mom’s mood I wanted to look at her and go what mood? This is Mom whenever we speak about MS. Her mood and anger didn’t even affect me. I am used to it. I shouldn’t be used to that. Ever.

I am also mad because I predict Mom will not have the MRI and she will not go to counseling. Dad may go but she won’t. And there will be no more discussion about this in her mind. So that just leaves all of us sitting here not knowing what we are supposed to do. Sitting here in our own loss as this dark cloud hangs over our lives as well.

What do you do when you feel emotionally overloaded? Have you ever almost cried when someone was rude to you when you’re having a bad day? Currently the only thing getting me through my day is a cup of Starbucks and knowing I get to watch the Dancing With The Stars finale tonight.

Thankful for Feeling Sad

I stayed up very late last night making cake balls to take to Husband’s family’s Thanksgiving. So I am tired today and my head is not working properly. I can make the cake balls portion but it is the bark melted covering on the outside where I have issues making them look presentable and not a disaster.

Then Sister K called since she is home and we all used “Face Time” on the iPhone to late night chat. So one thing led to another and it was midnight before I went to sleep.

Being married is tough for me around the holidays because we have to split time between my family and Husband’s family. So far we have just been alternating Thanksgiving with his family, Christmas with mine, then switch the next year and so on….so this year it’s Thanksgiving with his family and Christmas with mine. But it doesn’t change this tiny feeling inside of me as I head off to celebrate a holiday without my family- I miss them. To put it even more simply- I miss my Mom. Mom has always had a way of making the holidays special. They have always been low-key occasions but special at the same time. A very come one, come all..you are not a guest in our home, you are automatic family. It’s hard to imagine everyone eating Thanksgiving without me. Sitting around our kitchen table in that green ivy filled kitchen. Getting recipes together, making drinks, snacking on appetizers, all of it.

I know these are simple memories. Our holidays have changed some in part because of Mom’s MS. We don’t make all of the food anymore but order some of it from a local restaurant. We have done this to make things easier…to make things less stressful on Mom and that is fine by us. We are easy to please. But the point though is even in its imperfect state, the holidays at home with my family are perfect to me. And today I have a tiny twinge of sadness that I am trying to mask with a smile on my face. But I am thankful for that sadness. Thankful I love my family enough to miss them at the holidays and thankful for the blessing of them this Thanksgiving.

What are your plans for Thanksgiving? How do you divide your time between families? Do you do all your own cooking or buy anything pre-made? So thankful for my readers! Wishing you a wonderful Thanksgiving!

My Twinkie Filled Childhood

You have probably heard that the Twinkie is in trouble since the company that creates them is filing for bankruptcy. Thinking of Twinkie’s made me nostalgic thinking of my childhood. Thinking of Mom buying Twinkie’s for Sister K and me, as well as those cream-filled chocolate cupcakes with the white wirl on top. Nostalgia.

It seems hard these days to reminisce about the past when I look at where we are now. Finding the balance in my head adjusting to Mom from childhood and Mom now. How she has changed. How our roles have changed. I know growing up can be painful but I guess I never expected to be dealing with a Mom with MS in the midst of it. It goes back to my struggle with expectations. Setting expectations and the disappointment when the expectations don’t come to fruition.

But here I am in the present. Looking at an image of a Twinkie and thinking about my childhood house. Thinking about my childhood in general- a Barbie house in the dining room, a Fisher Price kitchen set in the kitchen, constant dance performances in the living room and never ending afternoons spent in dress-up clothes. My memories are magical. They are free of stress. They are blissful. They are the polar opposite of life today. But in many ways, maybe that is the way it was supposed to be. Maybe those care free afternoons at home were teaching Sister K and me valuable lessons in becoming good people- the kind of people who would one day help their Mom deal with MS. The kind of people who wouldn’t walk away from their Mom in the midst of distress but instead would run to her no matter how difficult it was at times.

Thank you Twinkie’s for being part of my childhood and part of my memories. Thank you for playing a part oh the journey that prepared me to be the person I am today.

Do you have any childhood snack treats you fondly remember? Do you find it painful to grow up sometimes? Are you a fan of Twinkie’s? Husband informed me he was more of a “Little Debbie guy.” I was shocked.

A Little Thing

Every week Dad buys Mom a bouquet of flowers. Flowers are a little thing. A little thing, a small gesture but it brings a big smile.

Mom doesn’t leave the house a lot. She can’t unless one of us is going with her. She has been forced, not by her choosing, to give up a lot of her freedom. I need to remember to think about what that must be like. Losing the freedom to just get in the car and drive somewhere. Run a simple errand. Go to the post office. She can’t do any of it anymore. Dad realizes this. He realizes her house has now become her safety blanket. Her house is now her world. He knows he can’t do much to change this but the one small thing he can do is buy Mom flowers. Flowers to brighten her day. Flowers to brighten her kitchen. They are a little thing that makes a big difference.

What kind of little things do you do that may mean a lot to someone? Do you enjoy having fresh flowers in your house? What is your favorite flower?

Stop Staring.

People apparently like to stare. I don’t know why. I don’t know what inside of a person makes them want to stare but they do. They tend to stare specifically at my family and how we move Mom around. I would love to say this doesn’t bother me but it does. It especially bothers me more when it is happening at a family gathering or a party with friends. Why do people stare?

As a child I can remember distinctly Mom telling Sister K and me the phrase “Don’t stare.” She would say this when we would see someone who might have some sort of disability or may be different from us. She would say this because as children our instinct is to stare. It was one of what I would call Mom’s cardinal rules. I figured everyone knew this rule. Naively I especially figured adults knew this rule, but I am finding out they don’t.

We were at a family birthday party this past summer and everyone was lining up for a family picture. We were the last to get situated. The rest of our extended family seemed to move rather quickly to get in place. Then they just stood there and stared as Mom moved slowly with her walker and we followed around across the living room floor. Later that night when we had said good-bye in front of the house they just stood there again. Stood there and stared as Mom walked slowly to the car. Stared as we got her into the car. They didn’t speak. They just stared.

Similar things happen at parties we go to. There is a lot to maneuver and manage quickly without trying to draw attention to us. All while keeping a calm happy look on our face. It’s tough. We wait for the right moment when no one seems to be looking, then we move Mom from her wheelchair to a chair at the table. We shift her legs. Sometimes we literally move them. Sometimes we literally have to bend them. We help her stand. We help her balance. Then we do it again at the end. Even if she stays in her wheelchair there is always getting her into the car. The bottom line is there is always something. At the same time there seems to always be someone staring.

A word to society: Stop staring. As a family we are under enough internal stress in these situations ourselves and it would be helpful if you would just leave us alone and continue on as if nothing different is happening. Continue on in whatever else is happening and stop staring at us. How would you feel if you were in our shoes and we were staring at you? I am curious what people would say if I asked them that question. Maybe I should start.

Do you have any experience with people staring in difficult situations? Do you think there is a reason people do this? Were you ever taught not to stare? Do you think I could just be more sensitive to this and need to get over it?

Is It a Relapse or Just MS?

MS confuses me. I am no expert on it and the more I try to learn about it the more questions I have than answers. The other issue is Mom doesn’t take much initiative to learn about it herself so that’s tough since it involves her. I think Mom prefers to avoid dealing with it whether than learning about it…leaving the messy decision making and responsibilities part of this up to us. It’s just how this works. It’s how Mom works.

This past weekend I was home to visit Mom and Dad. The past few times I have seen Mom I have noticed she seems to be having more trouble than usual with walking. She is having issues bending her legs when she sits in the car. She is having trouble picking her legs up at times and we lift them for her. This past weekend she fell while we were at Grandpa’s house. It was a scary moment because she physically does not have the strength to get herself up off the ground or to push herself up. So there I was with Dad trying to get her up but again you are lifting dead weight which makes it more difficult. Dad told me she fell again last night walking to the bedroom.

There is definite cause for concern but I can’t determine how much. I don’t understand MS relapses. Mom has only had one and it occurred this past June. But in the weeks leading up to it we did not know it was a relapse that was occurring but thought it was a number of other issues to include a broken hip and herniated disc. It ended up being a relapse and we realized it once she was in the hospital because she had lost the ability to move both of her legs. We didn’t know what was causing this. The hospital determined it was a relapse.

This time seeing what is occurring I am wondering if we are entering the beginning stages of another relapse or if this is unfortunately the progression MS takes for certain individuals.

How do you know the difference? At what point should you be concerned and at what point should you begin to accept this is sadly the progression of MS? Any advice or thoughts you may have would be appreciated. Dad has called Mom’s doctor and is waiting for a callback to determine if she should move up her appointment to this week. But I also realize that sometimes the greatest things I have learned have been from other people I have met in the blogging world going through their own situations.