Tag Archives: lessons learned

Sometimes Patience isn’t a Virtue

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“Patience is a virtue.” I don’t remember when I first learned this phrase but it is one that resurfaces continuously, especially during moments where I am indeed lacking patience. The hard part is distinguishing when the time is up for patience. When it’s time to start forcing an issue a little more. When it’s time to stop standing by and patiently waiting anymore.

This is pretty much my natural inclination all the time. To not be patient. To get issues solved immediately. To get problems resolved as soon as possible. But Mom’s MS continues to force me to be a little more patient. Emphasis on the little. Ultimately I can make suggestions to Mom all day, we all can, but it is her body and her health. But there is a line. A line we teeter on the edge of constantly. When we have been patient. When we have waited for Mom to make a certain decision, come to a certain realization and it has not happened. A line that separates not saying anything and saying something. From ignoring an issue to bringing it up. Crossing this line immediately makes you the bad guy. It makes you more aggressive no matter how calm you are. It leads to difficult conversations. Difficult moments. Moments that bring out a mixture of emotions. Emotions in Mom and emotions in us. Moments where you don’t know what to say. Moments where you are fighting to stay calm. Fighting to remain rational. Trying not to give in but at the same time going round and round in a conversation. A conversation that ultimately still has no resolution. Other than explaining to Mom how you feel, it goes nowhere. It does not lead to a resolution. It takes us right back to where we started. It’s as if we never crossed the line to begin with. No positive result from all the effort put in.

Another expectation broken: If you put forth the effort, you will achieve a positive response. Lesson learned: That’s not always the case.    

I do not feel that “patience is a virtue” but I also do not know what to feel. I feel a mixture of emotions. Anger being the biggest one. Anger at this situation. Frustration that Mom won’t listen to what we are saying. Confusion as to where we go from here.

*In case you can’t tell we are approaching a tough issue with Mom. One which I struggle to reveal on here because I do not want this to become a place where I just vent frustrations directed personally at Mom. But I will say this sums up how I feel about it. I hope you can gather what I am trying to say from my mess of feelings today.

How do you approach tough conversations with family members? Do you believe in just accepting they are never going to do what you want them to do? Do you believe in continuing to push an issue? Do you believe sometimes patience isn’t a virtue?

Just Beat It

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My family attended the Michael Jackson The Immortal World Tour by Cirque Du Soleil recently.

 Sister K and Mom sitting in the handicap accessible seats

We have always enjoyed going to shows but this was the first time we had done something like this with Mom’s MS the way it is now. Mom falls much more under the handicap accessible category than she used to and that presents new challenges for all of us. We purchased tickets in the handicap accessible seating for the first time. There were 2 tickets there and then 3 a few rows behind together. Dad dropped us off at the entrance to the venue. The handicap parking was full so he had to park elsewhere. Sister K and I got Mom inside and situated only to find the handicap bathroom stall was out of order. At this point it literally seemed like there was one thing after another. There was a moment when I saw some women in the bathroom line watching Sister K and I assist Mom into a normal stall- I was filled with envy. How easy for you to be here tonight. To walk in, find your seats and just relax and enjoy a fun-filled evening. Of course we had the exact same experience but just had a few obstacles getting to that point. I am disappointed I even had that thought at all. I have to stop comparing our situation to other people’s in moments like this. It isn’t healthy and it makes me more irrtated inside.   

Sister K sat with Mom during the performance. I sat in the other seats with Dad and Husband. It was easier in case Mom needed anything for Sister K to help. In the end it was a wonderful night that ended with us playing Michael Jackson songs the entire way home along with stopping for some drive through ice cream. Most importantly it was very uplifting to get Mom out of the house and go do something different with her.

But it is tough. It definitely takes some effort to remain active as a family with Mom’s MS. Nothing is easy anymore and nothing is done quickly anymore. You have to anticipate and expect the unexpected and know things will most likely not run smoothly. Plus we are new to the phrase handicap accessible. New to knowing what our rights are, what we can demand, etc. For instance when we realized the handicap stall was broken we were told we could use the family restroom. There was a line for it but later after waiting in the line we were told we have priority. Now we know. We also now understand how handicap accessible seats work at an arena. (They are great by the way. I was really impressed.) Everytime we do something like this we learn new tricks which make next time easier. It is hard though because it requires me to be very “go with the flow,” to adapt quickly to any changes and not let it bother me. I have said it over and over on here- I am a planner. “Go with the flow” is hard for me. These situations also require me to fight urges to get stressed or uneasy and keep things calm and steady for Mom. I know she watches closely for my reaction in certain situations. I think she knows I am the first to break if there is something to really be stressed about. I wear my emotions on my face. Sometimes that is a positive but sometimes it is a real negative.

My family has made a committment to not passing up opportunities like this because Mom has MS, even though it may be more difficult on us. These moments and memories are as important for Mom as they are for us. They change things up, they are a break from her same routine and they get us all out of our comfort zone. I think in many ways conquering nights like these teaches me a lesson too. Just because you may encounter one minor setback doesn’t mean a domino effect of setbacks is about to occur. It is teaching me to keep my cool, to think quickly and calmly under pressure and to just live in the moment. Focus on Mom and focus on the fun. I need to tell any axiety inside to Beat It.

How do you react when you are stressed? How do you handle minor setbacks when you are in a situation where you have little control? Do you believe it is important to not let MS control our lives and continue doing the activities we want to do? Have you seen the Michael Jackson Immortal Tour?

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.

Keepin’ It Light and Fluffy

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I love The Office. Husband and I are about 2 seasons behind. Our Office viewing goes something like this: we buy a season, we hole ourselves up at home to watch it on the weekends becoming somewhat addicted, we proceed to talk about it regularly as if these characters are our friends during this period and then we finish the season depressed until a new one comes out on dvd. We never watch it live. We then give the seasons to Mom and Dad who then catch up as well.  We are actually more behind than we used to be due to the mere fact of life. I plan to work on catching everyone up. As if this is a major life impacting goal to add to my to do list:
Catch everyone up on The Office: Check.

But it does make me think of the importance of tv shows and movies in brightening up my life sometimes. It is fun to sit around and quote movies at dinner or scenes from television shows we all love. It is like a big inside family joke. It gets everyone laughing. Instantly everyone’s head is transported to another time. They are with that character in their environment. Their head is filled with laughter thinking of it. Thus my head is filled with laughter and before I know it I am smiling and happy. As if happiness pulled a sneak attack on me.

It’s important to keep things light and fluffly sometimes. Conversations full of more laughter than content. Full of more television character quotes than news related stories. You know the moments where there isn’t much to say. The moments where looming in the background are the big overarching issues you are tired of talking about. In our case it is Mom’s MS. In these moments I have literally felt the tension lifted by just quoting a line from Wedding Crashers or a silly saying from Parent Trap. Stupid quotes are the bread and butter of my family. They bring the laughter which brings the smiles which brings the happiness. As insane as it may sound, these moments keep us sane.

Do you believe in fluffy conversation? Does your family enjoy quoting any particular tv shows or movies?  Does anyone love The Office dundies episodes as much as I do?        

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?

Can You Keep A Secret?

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Mom is coming home. Saturday to be exact. This is good. I am telling myself this is good. But it’s not without some worry. She is moving around but still having challenges getting in and out of bed. She isn’t moving around perfectly but better than she was. The doctors are hopeful if she continues on her phsyical therapy her walking will continue to improve. I listen to Dad say these things. I sound enthusiastic and optimistic. But secretly, I am nervous.

Dad was beginning to have issues taking care of Mom by himself at home before her relapse occurred. I guess I am worried she will return home and all the same problems will exist. My family will have just been put through the ringer for the past month yet will not see any major improvements. It will have been as if we went through all of this for nothing. These are my secret fears.

Dad, Sister K and I are already talking quietly about back up plans. For what we will do if the next week or two are a struggle. If Mom is not as self sufficient as she needs to be. If Dad can’t handle it all again. We may need to bring someone into our house to help. I know that is a reality but it is a tough one. It is also one that won’t happen overnight. It also isn’t something happening tomorrow. But it is sitting there, secretly in the back of my mind.

I feel like I am on a hamster wheel. A giant circle. I go round and round and everything goes back to the same thing. Take life one day at a time. A good friend of mine whose Mom passed away from ALS texted me yesterday and said “Day by day is the only way to do it.” I know deep down she is right.

But I struggle. How do I do it? Do I trick my mind? Shut off thoughts about the future. Shut off my plans. Live today and today only. It is tough. Really tough. I struggle with this everyday. I struggle because of another secret- I don’t really know how to live day by day.  

Have you heard of the expression taking life one day at a time? Do you put up a brave front but keep a list of secret worries? Is it just me or does anyone else not know how to take life one day at a time?

A Simple Break

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Meet Sister K.

Today Sister K and I met up for “lunch.” I say “lunch” because this consisted of meeting for TCBY yogurt and then walking down the street for a McDonalds iced tea. But regardless it lifted my spirits. It perked me up. It always does. I was making fun of her in her backpack with umbrella and water bottle. So I snapped a picture, using Sister K’s iPhone. My poor blackberry photo quality is limited.

A simple lunch break. A simple pleasure. Right now life is a little upside down. But we can meet for a moment and do something simple. Simple and cheap. Sitting on a bench. She asked if I’d talked to Dad. I asked if she’d talked to Mom. We compared notes. We seem to do a lot of this lately. We talk to each of our parents separately. Then we compare notes. We give each other updates. Did Mom sound happy? Did Dad sound overwhelmed? How did Mom say the doctor went? How did Dad say the doctor went?

I told her I called Dad this morning. I told her I had started calling him in the mornings to check on him on my way to work. Not really sure why, but I am wondering if it will become a habit. Sister K told me I am turning into our “family manager.” In some ways I feel like I am. I feel like all of our roles are changing a bit. I have noticed changes in Sister K, noticed changes in Dad, even noticed changes in Mom. There is a subtle and quiet evolution going on within the walls of our family. Each of us picking up new responsibilities, settling into shifted roles, figuring out how we can help, etc.

One new thing I started doing this week is trying to help Dad from far away. I know I can’t be there physically to help him with everything but it occurred to me I could make phone calls and help with little administrative tasks. I made a phone call about getting Mom’s doctor to request her medical records, I followed up on some airline flights, I got a question answered from our house title company, I even helped Sister K fill out her W-2 form for her new job so Dad didn’t have to worry about it. I think people may look at me like I am crazy or think my family is helpless. This is not the case at all. These things make me feel useful. They make me feel like I am doing something. Like I am helping in some way. If I can’t be there physically at least I can help take some things off Dad’s plate right now so he has less to worry about besides Mom. The moments I feel the most crazy in my mind are the moments when I feel absolutely helpless. I am learning the best way for me to deal with this is to feel useful- no matter how large or small the task may seem.

Do you struggle when you feel like there is nothing you can do to help in a situation? Do you ever assist your family in administrative tasks that may seem odd to others? Do you enjoy frozen yogurt as much as Sister K and me?

Exhausted.

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I am exhausted.

Physically exhausted. Emotionally exhausted. Every level of exhaustion you could be I feel it. The past 4 days since I last posted have been a rollercoaster. Highs and lows. Good and bad. I have lots of thoughts. Thoughts that are going to be evolving everyday. It’s been a lot. A lot to experience without a lot of sleep.

It was a strange Memorial Day weekend. It did not involve boats but involved wheelchairs. It did not involve fun drinks but involved hospital food. It involved staying up all night but not by choice. It was not relaxing but stressful.

My family moved Mom to a rehabilitation facility on Friday. I stayed with her every night at this facility. Dad and Grandpa came to visit often. We were not very happy with the place but also did not think much of it. Monday morning I realized enough was enough at this place. I told Dad we couldn’t leave her there because the care was so poor quality. I was worried that when I left I wasn’t sure how everything would work when she was by herself.  No one was friendly. Everything seemed disorganized. The food was awful. No one was helfpul. The decor was depressing. The walls were brown and green. The furniture was old. I kept waiting until Monday. Hoping that this was just the result of a holiday weekend staff. On Monday it would get better. Well Monday came and nothing improved. In fact it got worse. I told Dad that she needed to be moved. This began a stressful day of phone calls, Dad touring other facilities, waiting for insurance approval, finding out if if the other place could accept her.  By Monday afternoon at 4pm she was being moved to a different facility. Last night at 9:30pm she was finally settled in and I finally began my hour and a half drive back here. 

I was exhausted but felt good. I felt much better saying good bye to her than if I had at the other place.  Dad stayed with her last night and will again tonight. Sister K will head down and stay the rest of the week. Mom has come a long way since just a week ago. She is up and moving around. Not perfectly but is able to walk on her walker. Due to the amount of steroids she was on and possibly other factors her legs and ankles are very swollen. She keeps saying she feels like a marshmallow man. That has been the next hurdle to cross. This limits what she can do in therapy. I have learned what compression socks and water pills are now. I am hoping they will miraculously begin to go down. They just have to. We can’t take anymore setbacks. I can’t mentally handle them. So I am staying hopeful. The swelling will go down. She will get a lot out of phsyical therapy. And she will leave there more mobile than she was before this began.

I have many more thoughts. They are swirling around. But my exhaustion is preventing me from keeping them straight. I do know I learned a lot this weekend. I have mastered how to operate a hospital bed. I have learned how to navigate a hospital with nurses. I have learned all about pain medicine. I have also learned how to function on little sleep- sometimes I was successful and sometimes I was a disaster. Most importantly though I have learned how to find the positive in the little, sweet moments with Mom. How much a kiss on the cheek, an “I love you” or a smile will perk someone up as they lay in a hospital bed scared. I learned that as family you are each other’s greatest advocate. I also felt a shift in my role in our Mother/Daughter relationship. I took care of Mom the past 6 days. I stayed with her so she wasn’t scared. I fought for her. In a way these are things she has been doing for me my entire life. It was my turn to do them for her. I was exhausted but still found energy. It was love that kept me going. The love I have for Mom and the love I know she has for me. I learned there is nothing more powerful.

The Power of a Smile

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She handed me an iced tea.  I went through the drive-thru at McDonald’s and she handed me my large iced tea for $1.08.  My everyday addiction. But what she didn’t know was that I was on the phone with Mom who was on the verge of tears.  She is still having this shooting pain from her hip down her leg and the second ct scan, this time of her leg, came back showing no issues either.  Mom was on the verge of tears.  I was beginning to feel the panic I feel as I know Mom is about to start crying because she is overwhelmed. Frustrated. Upset that they can’t figure out what is wrong.  And the woman at the drive-thru handed me my iced tea with the nicest smile on her face and said, “Here you go have a nice day.”  And in looking at her smile I snapped back into reality and calmed down. 

I immediately started talking to Mom in an upbeat voice that said this is going to be figured out.  Maybe it is a nerve in your back.  They were thinking that was a possibility. She was about to call and ask about a ct scan of her back.  She sounded calmer. She said she feels like she’s just lost 2 weeks of her life because of this. I laughed and said well we would all like to lose 2 weeks sometimes.  I got calmer yet became more upbeat.  And soon enough she became upbeat again and we drifted on to other topics. 

I don’t know how I did that. I am sitting here still unsure. But what I do know. I owe a thank you to the woman at the drive thru. She could’ve been rude. She could’ve just given me my iced tea and not said a word or looked at me. But she stopped, she looked into my eyes and she smiled. And that smile made the entire world snap back into place.

It made me think how often maybe sometimes someone just needs a smile. Smiles aren’t a cure for anything but they just have a way of getting inside of you.  Sending a burst of positive feelings through you. It’s a good reminder that you never know how you are being used in other people’s lives, especially complete strangers as you encounter them on a daily basis- at the grocery store, at the gas station, even crossing a street.  But next time I see someone and make eye contact I may think harder about giving them a smile.

And if I need a reminder I’ll just think of the line from my favorite movie Elf: “I just like to smile. Smiling’s my favorite.”  

Have you ever struggled with finding the right words to say when your Mom is hurting? Do you ever think about the powerful impact of a smile? Do you like the movie Elf as much as my family does? Any favorite Elf quotes?