Tag Archives: new perspective

What’s Your Mantra?

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I think life mantras are interesting. Words to live by. Sayings you tell yourself when you don’t know what else to say. They typically appear during the tough times but can also appear during the good times too. In moments where I am overwhelmed or left alone with my thoughts they tend to surface.

I was talking to Mom today about different frustrations Husband and I are dealing with and she responded by saying, just remember “good things come to those who wait.” It was a nice response but what I appreciated more was connecting with Mom over this moment and this mantra. This mantra is one that makes me think of Mom. One that she has applied to her own life and one I have seen played out in my own life up until this point as well. It was also special because I have recently been struggling to sometimes connect with Mom on the phone for various reasons, most of which I think stem from MS. Sometimes our conversations leave me feeling frustrated by my own expectations. Today though it was nice to get some old fashioned advice from Mom.

The conversation got me thinking about life mantras and my own personal ones. The phrases I repeat to myself or others if they were in need of a short tidbit of advice.

One of my favorites:
“Just breathe” -I stole this from the movie Ever After

One Husband and I learned from our sponsor couple during marriage counseling:
“Nothing is ever as bad as it seems and nothing is ever as good as it seems.”

One I started using to find humor in an annoying situation…it is now also one Mom likes to throw around now when describing her MS symptoms:
“Are you kidding me??”

One that is tough and can cause you to reflect forwards and backwards:
“Everything happens for a reason.”

I know these are all over the place but they are the first ones that come to mind. I am curious if you have any life mantras you live by? Where did they come from? How do you use them?

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? 

Dad’s Challenge

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Sister K and I are going home tonight to stay with Mom because Dad is out of town on business overnight. Originally it was just going to be Sister K going tonight and me going down tomorrow. Long story short of not wanting to each be driving cars down on separate days I decided to go this evening too.

Dad called the other night to talk about our upcoming visit. Last weekend, Sunday to be exact, I had a rather big blow up with Mom. I don’t know how it got so out of hand but it did. It was not one of my shining moments. She was mad, I was mad, and there was no resolution. I literally said good bye to my parents and got in the car to drive back here. I have never done that. I still don’t feel right about it but at the same time I was feeling very trapped, frustrated and at a loss for what to do next. I knew I had snapped. I also knew it wasn’t all my fault. But my family is not one to hold grudges and play the blame game. So I apologized later and we moved on.

But when Dad called he referenced the argument. He then used his “Dad tone”- very straightforward, kind, and respectful….a way that makes you listen without getting defensive or mad, a way that makes you realize the severity of a situation without getting scared…it is an art that after raising daughters for 28 years he has down to perfection. His words went something like this: 

You Mom is sick. I am asking you to have unconditional love for her the same way she has for you all these years. I know it’s not going to be perfect. I know the house is an absolute mess right now. I know there are a lot of frustrations with Mom. But I am asking that when you come home this weekend to come home and just enjoy Mom. Enjoy your time with her. Don’t focus on the other things. Just focus on Mom. Because it really hurts her when you fight. I know she fights back but I know it hurts her. We don’t know where all of this is headed. So wouldn’t you rather know you enjoyed the time you had with her now while she is at a point where you can still do things with her rather than fighting about all these other issues. I know there are lots of frustrations and I hear them and I am doing everything I can to fix them. It’s just taking some time. But when you and Sister K fight with your Mom then I have to get involved and it wears on me. I realize this is in large part because of what MS is doing to your relationship because we never used to have these issues. The point is I am asking you to just come home and enjoy Mom.”

The above wasn’t said in a mean manner. I wasn’t upset once we were done talking. It was simply a matter of fact discussion. Discussions we have had many times before. Another one that stands out in my mind involved a college “not boyfriend/boyfriend” that Dad told me it was time to kick to the curb. It was 8 years ago but I still remember it like it was yesterday. But these are the kind of discussions where Dad speaks and you listen and understand. And you think about his words. And you let them seep into your mind. And you know you need to find a way to intertwine his recommendation into your actions. In my family when Dad speaks, we listen. This is not at all in a drill sergeant manner but in a my Dad means the world to me and I want to do right by him manner.

So in so many words that is what I will be trying to do this weekend. Not get frustrated by the other issues. Not get overwhelmed by our messy house or other things of that nature. I will just enjoy Mom. And come Monday I will tell you how successful I was at putting everything else aside.

I know it is a day early but have a nice weekend. Want to join me in my challenge? Try not to sweat the small stuff and focus on enjoying your loved ones this weekend.

Running Inside The Hamster Wheel

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I am not a morning person. I am attempting to possibly become more of a morning person by going to sleep earlier, but I am a self proclaimed night owl. Sister K called me this morning as I was heading to work. I talk to my family any time of day during any kind of transit but mornings aren’t usually the norm for any of us. Maybe it’s because none of us are morning people at the heart of it. Could it be genetic? Makes me laugh to think it is.

Regardless Sister K called me this morning as I was walking out the door to head to my car. We started chatting about mindless things. I think I began to mention an issue I had been struggling with lately that sort of involved Mom and how I may need her to get involved at some point. Then I mentioned I may go home this weekend. Truth be told Husband is out of town this summer for a business internship and I don’t have a ton of friends here since most of them revolve around Husband’s school and they are all gone for summer internships. I am one of the lone wives who had to stay put this summer to continue my job. Sister K will also be gone this weekend so I thought why not just go home. It’s not that far away and I can enjoy my own pool instead of the apartment pool in this awful heat. Plus I can be around people and not hang out alone.

I mentioned all of this to Sister K. We began to rehash some issues that have been going on and we continued to nearly talk in circles. We both have our own opinions on things. Sister K is getting her Masters degree currently in Special Development Disorders so in a way I feel like she understands Mom’s reactions or tendencies better than we do. But at the same time I believe that it may take Dad and Me a little longer but we will come to agreement on certain things in our own time. You can’t rush it. I told her I’d like to talk to Dad at some point this weekend without Mom around. Talk about the same issues we have been talking about and the thoughts Sister K and I have on them. Do I know if it will get us anywhere? I don’t. But I also don’t know at what point you just give up or if you continue to fight fight fight. I feel like Sister K and I are losing momentum with everything. We can only do so much and then Mom has to do the rest. That part is hard. It is hard to compare Mom’s situation with other people’s who have MS. In a way you cannot compare because no two cases of MS are alike in the same way that no two people dealing with MS are alike.

Regardless sometimes it feels like a beatdown, to be perfectly honest. A losing battle that we never win. Problems we can never solve. Changes we want but will never be made. At what point do you throw your hands up and say nevermind, I give up..It’s your life, live it how you want. Is that surrendering to MS? It can be so frustrating to continue talking the same words, expressing the same feelings, it makes me feel like a hamster on a spinning wheel…and the wheel spins over and over and over. As the child in all of this at what point is time to dump all of this and say Dad you handle the changes when you are ready because Sister K and I are getting nowhere. Even though all of this primarily resides in his lap already do you just give up trying to reason and move on or is that being a bad child? I don’t know. It’s tricky and murky territory. But I do know Sister K and I can’t continue spinning our wheels getting us nowhere. Today Sister K said it best when she said, can we just change the topic, I am sick of talking about this and it never gets us anywhere. So we moved on. Is that what we need to do in life? It doesn’t feel like the right decision and maybe that means it isn’t. Or maybe that means it is. I don’t know.

Do you have any problems you feel you circle around but never solve? Have you ever just given up when faced with issues with another person or do you believe in fighting through it? How do you keep yourself inspired to keep fighting? On a lighter note, are you a morning person or a night owl?

Circling The Issues

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Last night I flew home from a weekend of visiting my college best friends. I could have driven but got a good deal on a flight and since I am trying to preserve my car until Husband is done with school I thought why not save the miles and fly.

I was laughing about the irony of this decision last night as a huge rainstorm landed smack on top of the airport I was flying into causing us to have to circle the area in the air until we could land. After 30 minutes of circling and knowing Sister K was waiting in the cell phone lot for me worried, we landed safely and I was happy to be back on the ground.

I knew one way or another we would land, it was either going to be in my city or a city nearby. I was praying it would be my city becuase if it was another city I was just imagining the mess I was going to be in trying to make it back. Renting a car/continuing on the plane, how would that work. But when this is happening in a plane you don’t have any choice. You literally have to just “go with the flow.” That is what traveling amounts to most of the time, especially air travel. You have to “go with the flow” because you literally have no control. The pilot is in control and you are in the passenger seat. If you think about it the only thing you have control over is what kind of drink you would like and turning off your electronic devices.

I am feeling like that in life right now. In a way with Mom’s MS I am not in control. She isn’t either, but she has a little more control over how she handles it than I do. But the tricky part is at what point do I have to acknowledge that she may not be utilizing her control in the best manner? At what point do we begin taking part of the control? Realizing allowing her full control is not benefitting her anymore. I know those are dark sentences. Maybe even a bit unspoken territory. But it is there I struggle. There I begin to feel like a bad daughter. Most daughters deal with this battle when their parents are more elderly, their cognitive state more deteriorated, a point when it is more acceptable to take this control. I am a lot younger and so is Mom, yet at the same time Sister K and I feel like we are hitting a wall and needing to take some control. But we struggle because this is also our Mom. I want to respect her but at a certain point I am beginning to think you have to invoke “tough love.”

It’s messy. I am trying to figure that out right now. Talking to Dad about it quite a bit right now. Talking about how to handle certain issues also feels as though we are infringing upon my parents’ marriage. Their way of doing things. The dance they have been doing for the past 31 years. At the same time I also think MS changed the rules on this. This is not just about Mom and Dad but it’s about our entire family. All of us dealing with this together. And the control and the decisions Mom makes impact all of us in one form or another. I feel it’s time for some big decisions. I feel it’s time to stop circling the issues and to just land, as painful as it may be.

How do you handle decisions with your loved ones? Do you believe there is a fine line to be walked in “taking control?” Do you have any crazy stories from plane flights?

Not Crossing The Line

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It’s been a bit of a tough week. Thoughts in my head. Words being spoken. Concerns being raised. Its all had me thinking a lot. Thinking about my relationship with Mom. She is still Mom and I don’t want to treat her any differently. I don’t want to give her a free pass when we argue because she has MS and I don’t want to just give in to things because she has MS. At the same time I don’t want to seem like a heartless daughter who doesnt empathize with what she is going through. That’s the part where it gets tough. At what point does the line get drawn. At what point does an argument go from a simple mother/daughter one to a more complicated mother/daughter argument. The kind where if I am not careful I could really hurt Mom’s feelings and become insensitive to the changes going on with her. Changes that I need to learn to accept instead of causing my frustration with them to add one more thing to her plate to be down about. The kind of argument where you forget what the issue is because you are both trying to make a point. I think I am in the midst of walking that line right now.

I am far from perfect. My family is far from perfect. And adding MS to our lives has complicated our family dynamic in ways I can’t even fully articulate. It has also complicated my relationship with Mom. Mom and I had an argument Tuesday. Tuesday was also the day my phone decided to die. I then didn’t talk to her Wednesday and Thursday. Part of that was caused by legitimately being busy but I also knew I could’ve made the time to call if I wanted. I didn’t feel the motivation. I felt I needed a little time to myself to figure out my thoughts. I needed to chill out from our argument. If I got on the phone there was a good chance I wouldn’t be able to let it go.

Today I realized I needed to call Mom. I realized as I was walking to Starbucks today (for free Starbucks refreshers from 12-3) that calling Mom to say hi and catch up was a bigger deal than resolving our argument. I don’t really think our argument will be resolved for awhile. It involves lots of convoluted issues. She has some points, I have some points, some of it has to do with MS, some of it is just life but at the heart of it I don’t think there is going to be a big, grand resolution anytime soon. At the same time it is not such a big issue that it has earned the right to impact communicating with Mom. To impact a part of her life that she really depends on and if I had to admit to myself, I do too. In many ways communicating is one of the biggest things we have right now. I need to put aside my stubborn tendencies to make a point and just move forward.

So today I did. I called Mom. We both acted like nothing had happened. In reality she may not really realize I am still bothered by what happened. Or she could be using her own Mom intuition to realize she needs to not bring it up either. The point though is by not calling Mom today I believe I would’ve crossed the line. Crossed the line into hurting her with my lack of communication. I didn’t want to be that person. I didn’t want to be that daughter. So I took a deep breath and called Mom. Had a great conversation and felt better when I was done. Let the unresolved items stay unresolved. They may stay messy and unresolved. Focus on the moment. And in that moment today I was having a good conversation with Mom.

Do you ever realize sometimes you have to just leave issues unresolved and move forward? Do you believe there is a line in dealing with loved ones between a simple argument and crossing into something that hurts much more? Did anyone else participate in free Starbucks today? What flavor did you try? I got the lime refresher…it was good but a little too lime flavored for my taste. Kinda wish I tried the berry.

Friday Frustration

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I didn’t post on Friday. I tried. But I couldn’t figure out how to express how I felt. I was home with Sister K and Mom. Dad was out of town and asked if one of us could come in Thursday night to stay with Mom while he was gone. Well one of us quickly became both of us. We were quickly calling it a sleepover. Mom is okay by herself for periods of time but nighttime can be more challenging with getting back into bed. Plus it is just nice knowing someone is there with her in case she needs something.

But Friday I was feeling frustrated. Frustrated with Mom. I couldn’t figure out how to express it. I knew it wasn’t Mom’s fault. I knew it was just the nature of MS but Sister K and I were frustrated. We really wanted to take Mom shopping with us. We thought it would do her so much good to get her out of the house. We had strategized and devised a plan to make this as simple as possible. We would only go to one store, Loft. It is a big store, very comfortable for Mom to be in and plus they were having big sales. We thought we could take Mom in her wheelchair just to have a fun experience out of the house. Keep it simple. But when it came time for it on Friday Mom didn’t want to go.

It was tough. Mom was tired from her physical therapy. She was also nervous about getting out of the house without Dad around. It was hard on us because we had been looking forward to this. I know this is one of the tough parts of MS- how tired it makes Mom feel. But it’s just so frustrating. Sister K and I don’t know how much of this is that and how much is fear. We assume it is a combination of both. We respect that and we are trying really hard to go with the flow on all of this. Coming up with new activities, making our time around the house together more fun but the hard part is adapting to Mom not being around for the activities she has always done with us. In a way our time spent with Mom has always been “on the go.” She was a stay at home Mom so to say she was there for everything would be an understatement. It is hard not having her around for these simple things she has always done with us. People might think it is odd that at 28 and 25 we still want our Mom around to go shopping with, but we do. It’s harder when we know she is at home and we are out without her too. And it is hard watching MS take that away from us. It is hard dealing with it. We ended up inviting Papa over and we picked up pizza and salads. We are becoming more of a food to go instead of a restaurant family these days too. Another transition.

These may seem mundane things to be sad about missing out on but to Sister K and me they are tough. Shopping and restaurants. These are two things we have always really enjoyed doing with Mom and they are two things that are tough on Mom right now too. Simple activities I took for granted that have changed. I don’t want to sound selfish. I struggle with how to not come across that way. I am trying to go with the flow with these changes, but some moments are harder than others. Friday was one of those days.

How do you accept changes in what your family members are capable of doing compared to what they used to do? Do I need to truly embrace a “go with the flow” attitude in order to truly embrace these changes? How are you staying cool today? It is 100+ where I am.  

A Grateful Tuesday

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I have had an outpouring of support on my blog today that I have not seen before. I am so thankful. I owe a lot of that to my regular readers out there. I also owe a lot of that to Patrick at Caregivingly Yours for the wonderful post he wrote about my blog today. A blog that has become more than a blog to me. A blog that has become a safe place to share my feelings, express the tough moments and remember the importance of the fun times.

When Mom was diagnosed with MS I headed straight to google. I am from the Millenial Generation meaning all of my problems and questions are supposed to be solved via google. But for the first time I couldn’t find what I wanted. I would google my mom has ms, help my mom has ms, what do I do my mom has MS, how do I cope with my mom’s MS and I could never find what I wanted. What did I want? I wanted to find someone I could relate to. I wanted to find someone who was similar to me. Someone who was close to their family, someone who understood the impacts of this disease on a family but also someone who was dealing with it. I wanted to know how they got through it? What did they do?  Had they ever felt the way I did? In a sense I wanted a manual. Because like the phrase at the top of my blog says, “life didn’t give me a manual when it gave my Mom MS.”  I would find resources for people with MS, people who had spouses with MS but nothing from children whose parents had MS. I was frustrated. If I did find something it was an angry message board post about how much they hated this disease and the awful impact it had on their family. I could relate to those feelings but there was nothing else. No sign of hope. No message of here’s how my family is dealing with it. It made me feel even more alone than I already did.

I didn’t want to feel alone anymore. I thought surely there has to be other people out there like me. People who are close to their family and just want someone else who can relate to what they are going through. The challenges and the tough moments but without forgetting about the laughs and the fun moments. My hope when I started this blog was to find a way to positively express my feelings. To show the tough moments but to also show the fun moments. To talk about how I was feeling or how things were going honestly and openly. Deep down I thought that maybe along the way I would meet someone who could relate or understand. I hoped that my blog would find its way to other people who may feel like I do. I think it may be doing that. I am so thankful. I sit here today feeling less alone with a big heart and a big thank you.

Thank you for reading and for coming back here to read again. Thank you for believing in my words enough to read past a first paragraph. Most importantly thank you for helping me to know I am not alone. Sister K and I are not alone and there are lot of other people going through the same feelings and emotions. I wish there was a bigger word to use but there isn’t. So I’ll say it again today: Thank you.

A New Normal

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Mom is home. Saturday Dad and I packed up Mom’s stuff from the rehab center and brought her home. This is good. I am not saying it isn’t. But it was also strange for me. Strange because of expectations I placed upon this event. The act of going home. All day Saturday I was having trouble shaking the feeling that I secretly wanted everything to immediately return to normal when we pulled into the garage. We’d all hop out of the car, walk in the house and things would return to normal.

Normal though is a funny word. I started thinking, what is my normal now? The old normal that I know is never returning. It is the one before Mom had MS. That is a normal I have grieved for and have accepted in a small way. I feel I accept it more and more every year. That normal is not coming back.

But the normal I am referring to now, I can’t help asking myself what is it?  The only answer I can come up with is before the relapse, but things weren’t perfect then either. Mom seemed to be declining in her abilities and struggling more over the past few months. So, what is the last date I can envision this normal I keep referring to? I don’t know. So then I struggle with that. Then I begin to feel sad. Then I begin to feel overwhelmed by my thoughts. Then I wish things would return to normal. Then the cycle continues.

I know the word “normal” is very loaded. Everyone has their own vision of normal. But right now I can’t even come up with the normal I am grieving or the normal that exists. Is that bad? Or is that part of living day to day? Reminding yourself there is no normal. Training my mind that each day is a new normal. The thought of that is kind of exhausting to me. But I guess that is part of living in the moment. Taking life one day at a time. You don’t look forward to a future normal. You don’t look back to your old normal. You live in today’s normal. Holding on to the good moments. Letting go of the bad moments. Trying to find a new normal.

Do you have trouble defining your normal? Do you believe each day may present it’s own new normal? Do you ever grieve for a past that is no more?

Finding My Armor

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A watermelon jolly rancher. This morning I was wandering around and stopped by the candy jar on someone’s desk and grabbed one. As I sat and enjoyed my jolly rancher I felt like I was transported back to childhood. To a simpler time. A time when jolly ranchers were life. Fighting with Sister K for all the red ones- cherry, watermelon, strawberry. Sometimes I enjoyed green apple. Always left the lemon or grape behind. Life was simple. The greatest worry I had when I held a bag of jolly ranchers was trying to get my favorite flavor out before Sister K took it.

This may seem like a silly post. It is. But I think it has a lesson to be learned. This morning I felt a wave of nostalgia. It struck me as interesting that a simple watermelon jolly rancher could conjure up so many memories. So many happy feelings. Bliss.

I am embarking on a journey to figure out how to take life one day at a time. This isn’t going to be easy. I already know it. I also already know I will fail. I will probably fail at in some way everyday. But today I feel a little successful. I am focused on the here and now. I am focused on my watermelon jolly rancher from this morning and with that comes a surge of happiness. A surge of happy feelings that I need to keep at the front of my mind. I need to use those as my armor to ward off the negative thoughts. Today jolly ranchers are my armor. Who knows what it may be tomorrow. Hopefully by striving to find something each day I can create my own suit of armor internally. A suit of armor filled with simple but strong thoughts.

What is your armor to help you ward off negative thoughts or worries? Do you have a piece of candy from your childhood that brings back a wave of nostalgia and good feelings? Does anyone else dislike lemon and grape flavored jolly ranchers?