Tag Archives: mind

Done Being Polite

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Everyone has an opinion. I always knew this was true but am amazed at how this becomes even more of an issue when your Mom is diagnosed with MS. Everyone has an opinion about Mom’s MS- they have an opinion about to handle the disease, how we should act, how Mom should be treated, what we are doing right and what we are doing wrong.

I was told this weekend via someone else that a comment had been made referring to how we are handling Mom’s MS. Yes this would classify as gossip on their end and gossip on my end. I also don’t care. The comment: “Their Mom is just really not doing well and I don’t think any of them are taking it seriously.”

My initial reaction: Are you kidding me?

But as I write this, I have let it settle and I’ve given it some thought. There are a number of issues I have with this that I have been thinking about. First of all, why do people feel like they have a right to tell us how to handle our Mom? Is it because of our age? Yes Sister K and I are 25 and 28 but that doesn’t mean we are children. I personally think we have done a great job considering the circumstances we have been given and how all of this has happened. We have also been given a big choice in all of this. A choice I am not sure everyone would make the same way we are- We could choose to ignore this situation entirely and let it rip our family apart, or we could fight it. We fight it. But no one commeds us for that. They just look at whatever it is we aren’t doing.

Which brings me to another issue. What aren’t we doing and how exactly are we ignoring this? We have gotten Mom a physical therapist, she is improving little by little everyday, we are trying to keep her attitude as positive as possible but we cannot force her to do anything. I think people forget Mom is 60, not 85 with a disease like Alzheimer’s. She is still cognitively very aware of what is going on and we do not control her life. This is not a situation where you are dealing with an elderly grandparent. I am dealing with my middle aged Mom. The circumstances are completely different.

Mom and Dad are working through this together. We are all working through this together. We are doing our best. There is no manual yet everyone seems to think they have one. There is also no cure for MS. This isn’t going to magically disappear. While I am incredibly frustrated by this one comment it is really just representative of other comments that people mention to us wherever we go. I don’t understand what gives people the right to tell us what we should be doing that we aren’t already doing and why they seem to know all the answers when they haven’t even dealt with a situation like this. For the millionth time and I mean this as kindly as possible- your Mom having Alzheimer’s is in no way the same as my Mom having MS. Your 85 year old Mom is not the same as my 60 year old Mom.

I need to be more assertive when these comments are made to me. I have made a promise to myself that from now on as comments like this are made to me I am not going to just politely listen and pretend to appreciate their concern. I am going to respond in a manner explaining we are doing the best we can. I am going to respond in a manner that is not rude but also not nice. Implying I don’t want anymore advice that I never asked for in the first place.

Why do you think people offer opinions when you didn’t even ask for them? Do you think this is a lack of social skills or something greater? How would you respond? Would you be bothered by this or do you think I need to blow these comments off? Have people ever done this to you regarding issues in your own life?

My Secret Challenge

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I am 28. This is not a newsflash around here. But the newsflash is I am 28 and still want my Mom’s attention and approval. I know it sounds selfish and whiny, I know it is selfish and whiny- I want to be able to call her and have her available to talk to me; I want Mom to respond to any issues by being on my side; I want my relationship with her to remain the same. No changes.

But there has been a change. But this part of MS doesn’t bring challenges as obvious as the other changes. It’s more of a secret challenge Sister K and I get to face. It’s the the challenge of communication- especially when the primary tool we use to communicate is the phone. This challenge peers its head when I call Mom wanting to talk to her but she is dizzy and laying down because of her spasm medicine. Or she is having difficulty focusing and following what I am saying. Or she can’t help me through my problem or issue by responding the way I want.

This happened last night. I was walking to my car to drive home from work. I wanted to chat with Mom. And we did briefly but then she had to go because she wasn’t feeling well and laying down. I felt kind of defeated. Frustrated. I know this is selfish. Very selfish. But it doesn’t make the feelings go away. It’s hard that Sister K and I comment to each other when we have a really good conversation with Mom now- When she is listening and paying attention and responding and we are interacting. This used to be the norm. It isn’t anymore and it’s difficult.

But this is the side of MS not everyone sees. It’s a side that not everyone notices. Don’t get me wrong, that is good. I personally don’t want everyone to have one more thing they decide to ask me about concerning Mom. But at the same time dealing with it makes me feel alone. It also makes me feel guilty for even being frustrated with the situation given what other circumstances could exist. I know avoiding this frustration goes directly back to taking life one day at a time. The frustration of having a good conversation one day but a bad one the next. It’s tough. It’s hard to deal with because there is already little predictability with MS and I feel like all I am trying to do is grab on to something constant and predictable. Instead I am finding myself adding one more item to the list of “things I cannot control” regarding my life now with Mom’s MS. And even moreso I never would have predicted “talking to Mom on the phone” would be on this list to begin with.

Do you face any communication challenges with people in your life? How do you cope with conversations not meeting your expectations? Do you think this ties into taking life one day at a time or just acceptance of change? Do you still seek your parent’s communication and approval?

Do You Dream?

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I am feeling kind of nostalgic today and not sure why. Thinking about black and white pictures of famous faces; old television shows from my childhood; my favorite movies- the fact that I have been playing around on Pinterest may have something to do with this. Have you experienced Pinterest? It’s kind of fun and can quickly become addicting. Everytime I am on it, I feel like it is a mind break. A dreaming adventure. What my dream house would look like; what a party would like that I would throw; pictures of fantastic desserts I could bake; the list goes on.

It’s an interesting mind exercise for me though because lately I am finding myself having trouble dreaming. Dreaming of the future. Dreaming of fun times. It is all just difficult for me. I am trying to take life one day at a time. How does that work when you are dreaming of the future? It also scares me to dream of the future. I get nervous to think about Mom in the future. To dream of a future party, but how would Mom attend? To dream of a future house, but how will Mom get around it? The list goes on. Pinterest packages these dreams into nice square pictures. Happy pictures. Pictures that make me smile but also bring up a list of concerns in my head.

I am trying to be hopeful. I actually feel like I am doing a pretty good job the past week. I judge my progress in this area in weeks. But the idea of dreaming about the future is still tough. Tough because it conflicts with taking things one day at a time which is what everyone tells you to do. I don’t know how to balance it, but I do know I should find a way. It is fun to dream. It is exciting to dream. It is uplifting to dream. All feelings that I need to have and need to feel.

Do you like to dream? Do you think there is a conflict between taking life one day at a time and dreaming of the future? What are your favorite things to dream about- travel, houses, parties, etc? Have you discovered Pinterest yet?

Olympic Sized Support

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Can you believe the Olympics is over? I am kind of sad, thinking I am going to have some sort of Olympic withdrawal when I go home this evening and don’t have anything to watch. No more coming into work everyday asking co-workers if they saw particular events the night before, no more sitting on the couch every night cheering on the USA, no more obsessing over my favorite Olympians and following them on Twitter. It has all come to an end. In a way it is time to return to real life.

I, for one, really got into the Olympics this year, more so than I have in other years. There was something incredibly thrilling about watching the races, hearing the stories of the athletes and celebrating the victories alongside everyone I know since we were all cheering for the same team. The camaraderie. The support of a country behind you. It must be quite a rush for the Olympians.

It makes me think of myself and dealing with my own issues in my life. How important that camaraderie and support can be- whether you are on the large scale of an Olympic athlete or the small scale of a 28 year old trying to navigate the twists and turns of life. It can all come down to your performance in a particular moment. I sometimes feel the pressure of that performance in stressful moments with my family. You wait for your opportunity to say something and then you pray that when it comes you say the right thing. You pray that you are able to perform. You are also thankful for the support behind you in these instances. Even though that support team may not be present, you know they are out there. No one realizes how invaluable having a team of people rallying behind you can be until you face those big life moments- some are exciting, some are challenging, some are positive, some are negative- but the one thread they have in common is the importance of a support team in each of those instances.

How do you support your friends and family? Do you see the value of camaraderie in times of struggle as well as in times of thriving? How do you handle situations where you aren’t receiving the support you may need? Are you sad the Olympics is over? Did you enjoy cheering on Team USA every night? Did anyone else enjoy the Spice Girls performance at the Closing Ceremonies as much as I did?

Back to School

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I always feel strange in August being a grown adult and watching everyone else head back to school. I know kids I used to babysit going back to school, I know friends who are teachers going back to school, but my life remains mostly unphased by all of this in August. No big changes, no big milestones, the only real impact “back to school” has on me is “back to traffic and school zones.”

But seeing as how this summer has felt very strange with everything that happened with Mom beginning in May, I feel like in a way my family is heading back to school with her recovery. She began working with her physical therapist yesterday and when I talked to her on the phone today she sounded upbeat and happy. It made me feel good. It made me feel hopeful again. It also made me feel like maybe in a way my family was coming out from our own summer break. Our summer break though wasn’t full of lazy days, pool time and vacations but began with Mom’s relapse in May and was full of overnight hospital visits, stressful moments, big decisions, and a tough recovery road.

We survived it though. We are also continuing to survive. And this August as everyone heads back to school I am reminded of how life was in May as everyone was getting out of school for the summer. As I watched people update their facebook status to reflect summer vacation, Sister K and I were taking turns staying in a hospital room with Mom. I didn’t know how it would all turn out. I couldn’t imagine August even coming because I couldn’t fully comprehend what was even going on in that moment in May. But today I can see how far we have come. We still have a ways to go but that’s just more motivation as my family begins its own MS school year this August.

Do you have anyone in your life heading back to school this year, either as a student or teacher? Do you ever think of August as marking the beginning of a new year similar to January? Was your summer full of regular summer fun or any unexpected life events like mine? Has anyone else been enjoying the light traffic and no school zones this summer?

Feeling Hopeful

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It’s okay to feel hopeful. I think I struggle with that sometimes. I struggle because I watch the reality of MS and how it conflicts with my hopes for Mom’s MS. I don’t want to “get my hopes up” but I also don’t want to live in a state of doom and gloom on the topic. My feelings come and go in waves. I go back and forth. Sometimes I go back and forth in the same day.

Mom started physical therapy again today with the therapist who is coming out to our house- going to call him Coach C. He is the same therapist Mom used in physical therapy so there is already a relationship there and we think that will help Mom to not be so negative about the experience. She genuinely likes Coach C and I have noticed that is the biggest hurdle of all with getting Mom to be into any new idea.

Similar to the beginning of most most new treatments, I feel hopeful. I don’t know what I am hopeful for exactly but just hopeful. The initial goal is to get Mom back on her old walker Pinky. Then I think we can all breathe a little easier and take it from there. My feelings of being hopeful could all change very quickly. It doesn’t seem to take much. One bad phone conversation and I am back to reality I feel like sometimes. But for the moment I am going to enjoy feeling hopeful.

How do you handle feeling hopeful even though you may be disappointed? Do you tend to lean more towards the glass is half empty or half full? How do you pursue a hopeful attitude during moments of uncertainty? 

The Kitchen

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Our kitchen in my parent’s house seems to be the backdrop for all the serious family discussions we have ever had. They don’t take place on the couches in the living room, we never use the dining room, occasionally when we were younger and in trouble we had to go talk to my parents in their bedroom, but the kitchen has always been where all the action happens. It is where our family plays out. Where we eat, where we laugh, where we have spontaneous dance parties, where we yell, where we fight, where we make up, where we celebrate coming home, where we say good bye to our parents- it all takes place in the kitchen.

So Saturday night it only makes sense that when we needed to have a serious discussion with Mom, it took place in the kitchen. It was a conversation of sorts that had been on Sister K’s mind and my mind a lot recently. I knew there were things that needed to be said to both Mom and Dad. We were concerned about Dad being spread too thin, we were frustrated with Mom’s approach to everything, in a way we believe Mom isn’t admitting she has MS. She admitted that to us in so many words as we were discussing it Saturday night. It was a heated discussion. It was tough. A lot was said. I can’t even really remember all of it. Mom was very upset by the time we were done. She went to bed crying and didn’t sleep a lot. I don’t think any of us slept a lot. To say it again, it was a tough conversation.

When we were done, Mom and Dad left the room to get ready for bed. I stood in the kitchen with Sister K pouring myself a glass of water. She started crying. I gave her a hug. I didn’t cry though which was surprising. I did feel a surge of emotions though. I am sorry this had to come to this- I am sorry these thoughts have been brewing inside of our heads and we had to talk about them like this; I am sorry they couldn’t be solved without a big conversation like this; I am frustrated Mom and Dad haven’t taken the initiative to solve these issues without a big conversation like this; I am sad we made Mom so upset; I am sad Mom is so sad; I am nervous about what the future holds; I feel relief knowing I got a lot off of my chest about everything; I also feel worried we don’t know what we are doing or how to handle this; and, I still feel confused as to why all of this is happening to us. Why us. Why my family. Why can’t this all just go away. Where is all of this heading.

In 24 hours we had gone from having the best moments with Mom to having the worst moments with Mom. In the same way that the memory of our wonderful day will always be there, so will the memory of one of our darkest discussions. I think the reason it was so tough is because Mom just kept saying she had no idea we felt this way. Part of me thinks that may in fact be the case. If she isn’t admitting she has MS then she isn’t admitting any of these other issues exist. This is what we are facing now. But I reminded myself and reminded Sister K, if we didn’t care about our family we wouldn’t have had that discussion. We would’ve simply walked away from it all. We wouldn’t be fighting with our family for our family. We would have given up. We wouldn’t care anymore. And that is a situation neither of us could imagine.

Was there a resolution to all of this? Not really. Do I know if it will do any good? No I don’t. But what I do know is Sister K and I don’t feel this enormous weight of things left unsaid. Not making Mom aware of our fears regarding Dad and the stress he is under and not making her aware of the fears regarding herself. I don’t know where it will all head from here. That is where I realize even more so that none of this is in my control. The only thing I can control is my faith. It’s my faith that is going to give me what I need to get me through this. That and a kitchen that has seen my family through the smiles and the tears of my life. Our kitchen is like an old friend. It believe in us, believes in our family. I believe it knows we will get through this, that we will soon gather there again to laugh and commisserate as we continue to deal with all life throws at us, whether it is MS related or not.

Is there a room in your house that serves as the backdrop to the majority of your family moments? Do you have any experience confronting tough issues with loved ones? Would you believe we are not big cooks in my family even though we spend the majority of our time in the kitchen?  

Golden Memories

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I am still on quite a high from last night’s big gold medal victory by Team USA Women’s gymanstics! I managed to stay off twitter, facebook and any websites that may have leaked the results early because I wanted to watch and be surprised when it aired on tv. It was great. Such a feel good moment. When the announcers referred to the Magnificent 7 who won in 1996 I could remember everything about that evening. Dad, Mom, Sister K and Me all sat in the living room watching as Kerri Strug nailed her vault to clinch the win- I remember standing up and screaming out of excitement.

This is also another Olympic memory that brought with it another moment of reflection on the past. Thinking back to 1996. I was 12 years old. Sister K was 9. We were still living at home. Only a family of 4. Also having no idea what the future held. Here it is 2012. And things are a little different now. Mom has MS now. At 12 years old I am not even sure I knew Multiple Sclerosis existed and now it is very much a part of my daily life.

Last night instead of celebrating in the living room with Mom and Dad, we celebrated over the phone. I now have a new memory associated with women’s gymanstics winning gold and in 4 more years it may look even more different. In the same way that every 4 years the players may change at the Olympics but the events remain the same, the spectators and fans around the world also change. I don’t know why the Olympics has me thinking about the passage of time so much. I think Mom’s MS has something to do with it. I think comparing memories to the past also has something to do with it. But the lesson I am learning in the process is to cherish every memory- the past and the present because you don’t know what memories of the future will look like. I sit here and wonder what things will look like 4 years from now as I watch the 2016 Summer Olympics and the next Women’s Gymnastics team compete.

Do you ever think about memories of specific events of the past and compare them to the same events today? Did you watch the Fab 5 win gold last night? Where were you in 1996 when the Magnificent 7 won the first women’s gymnastics Olympic gold medal?

10 Pages of Fun

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7.30.12

Me. Last night. Approximately 10pm at my kitchen table.
Staring into Sister K’s computer.

Sister K has just about finished her Masters degree. Today all that stands between her and the total bliss of being finished is a take home final. Last night all that stood between her and total bliss was a 10 page paper and a take home final. Together we finished that 10 page paper. At approximately midnight.

As I think about last night I am not filled with any feelings of being annoyed that somehow I drew the short end of the family stick. I am more filled with happiness and love. Sister K and I don’t keep score. I know that if I needed her in a bind she would be there in the exact same way. But it’s these moments that strengthen our bond so when bigger issues come along we can handle them together.

It’s nothing new here that we feel a bit overwhelmed by life right now. In a way the above picture sums that up as well. We were discussing this overwhelmed feeling over Chipotle burrito bowls earlier in the evening. Then we shifted to working on a 10 page paper. I feel this is how we cope. This is how we are going to cope. We are going to talk about it, come to no conclusion then we are going to move on to something else. Then we may shift back. The topic of Mom’s MS is going to be intertwined in our lives but we have to manage it in a way that does not allow it to take control of our lives. Last night it was intertwined with a 10 page paper and watching some Olympic races. A frustratingly complex 10 page paper that I was actually thankful for because it took my mind off another frustratingly complex issue that can’t be solved with a paper. I never thought I’d say it but last night I let the thoughts of a 10 page paper take over my mind and I enjoyed every minute of it.

When was the last time you wrote a 10 page paper? How do you prevent your mind from being consumed by complex issues that don’t have a clear solution? Do you love Chipotle burrito bowls as much as Sister K and me?  

Handling The Impossible

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Dad is spread too thin. I have been thinking this in the back of my mind for awhile. This weekend it became more than a thought. I drove home for the weekend because we had a family friend in town. I had heard earlier in the day Dad’s back was hurting him very badly. He had said it was hurting the day before as a result of sleeping on Sister K’s couch bed. On Friday he went to the chiropractor. By Friday evening when I saw him I could tell he was in pain but was still moving around and functioning. In a sense he doesn’t have a choice not to. He was hunched over and I was concerned. It was one thing to have the thought in the back of my mind that Dad is taking on too much with work, social obligations and caring for Mom. It was another to see what can happen because of it.

It scared me. It continues to scare me. Saturday I took Mom for a few hours and we went to run some errands with Grandpa and went to lunch. I told Dad to stay home and relax. He even admitted he felt weird doing it but at the same time when I got back he admitted how nice it felt. How he hadn’t been in any pain all morning.

Saturday afternoon we talked about how he may need to bring in some extra help in some regard with Mom. He admitted it may be time. We tried to figure out the specific needs of our family. I think the consensus is right now he needs someone to assist in managing the house in some regard. Running errands, grocery shopping, straightening the house, etc. He is working a full day, then coming home at night and running errands and managing the house. He admits it is becoming too much.

But this doesn’t change the fact that I am scared. I am also scared because in a way I have known for some time this was going to happen. I have known Dad is spread too thin. I thought something may happen. And it did. It could have been worse but it wasn’t. But the point is it could have and it could be next time. Dad is the anchor of our family right now. A family that’s being hit with new challenges and changes everyday. Changes that I am struggling with more and more everyday. This weekend I struggled a lot. As I struggled I think I misplaced my anger, fear, and frustration. They came out with Mom even though I know it isn’t her fault. It is the nature of MS. It is how they are coping with the disease. But it still makes me mad. Mad and scared. It makes me feel like coping with all of this is impossible. Like I am going to struggle permanently so I better start getting used to it.

Curious if you have MS, what kind of additional support do you have if any? As a caretaker, what kind of additional support do you have? How do you handle not misplacing your frustration with a situation? How do you keep your cool when faced with constant pressure?