Tag Archives: mind

I Underestimated Her

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I have a little bit of a routine when it comes to calling Mom. I do it everyday at lunch as I have pointed out and talked about before. Today I called her while I was walking to run an errand. She didn’t answer the first time I tried so I figured she was just a little farther from the phone. So then I tried Dad’s phone and he didn’t answer. I’ve been trying to call Dad periodically just to check on him and see how things are going.

Mom called back and we chatted for a little bit but then I needed to get off the phone. When I got done, I noticed I had a missed call from Dad, so I called him back. We talked while I walked back to work. I have to take advantage of this time because typically he is around Mom and isn’t free to discuss everything. I never called Mom back. I told her I was going to, but I didn’t. I had just a few minutes and was debating if I should call Mom quickly but then I had this awful thought- Mom is probably not even going to remember I told her I’d call her back…or if we get on the phone we aren’t going to have anything left to talk about…so I didn’t call her back. I didn’t think much of this. Normally I might have but today I just didn’t.

Fast forward to 3:00 today, my phone rings and it’s Mom. She said “I thought you were going to call me back? I wanted to hear about your trip and the wedding this weekend.” She didn’t sound upset but just friendly and cheery. I was able to talk to her a little bit at my desk but then I had to get back to work. I also immediately felt bad because in my eyes she was having a good day/a good moment and I missed it.

It’s tough. I feel bad because I usually do have those thoughts but I ignore them. I push them away and do what I know is right. Today though I listened to those thoughts and in listening to those thoughts I pushed aside Mom. Pushed her aside like she didn’t matter and she does. I also don’t think I realize how important our daily chats are to her. Sister K has told me this as well. She said you don’t know how much Mom looks forward to those conversations. Today I ignored that thought as well. I feel like I was a little selfish and that’s not how I want to act. I don’t want Mom’s MS to interfere with my relationship with Mom and today I let it win. Lesson learned. I now know what it feels like to let those thoughts win and I don’t like it. I’ll do better next time.

*I guess I felt I needed to come here and be honest- and confess these thoughts to someone. Thanks for being that someone.*

Have you ever had moments where you don’t realize the importance of your actions? Have you ever felt bad for something as simple as not making a phone call? Do you like to talk on the phone while you walk around?

Up and Down

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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

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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

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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

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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?

A Loss and a Twinge

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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?

A Secret Struggle

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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

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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?

Living in a Fantasy or a Reality?

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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

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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”?