Tag Archives: lunchtime chats

10.25.13

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This is a post I wanted to do last Friday but you know, life happened, work happened and here I am doing it 10.29.13 instead:

Mom’s birthday was Friday. It had been a long week and I bribed myself to get out of bed with Starbucks. Desperate times call for desperate measures.

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But I called Mom in the morning on my way to Starbucks to tell her happy birthday. She picked up the phone and I shouted HAPPY BIRTHDAY. She thanked me, we small talked for a minute but I could tell something was off. Something was wrong. And then she said “I’ve had better”…and then started opening up to me more and started crying. The nurse that takes care of her overnight had found some bumps on her arm that she thought were actually a rash that was contagious. Mom had some flaky skin on her legs as well and they weren’t sure if they were related. Mom was frustrated because she is wearing compression stockings all the time and figured it would probably be the reason for the skin irritation, not a rash. It was all around awful. Dad got on the phone briefly to say Mom’s day nurse was taking her to the doctor at 11 that morning. Mom also had plans to go out to a birthday dinner with friends and that was in danger of being canceled because of this rash. It was awful. Mom was upset. And I felt so overwhelmed with sadness and defeat that there I stood in a line for Starbucks on a Friday morning with my eyes filling with tears. This was unfair. It was amazing to me that it was a Friday morning, a happy time because the weekend is about to start, I was in Starbucks waiting in line for my favorite coffee and I was overwhelmed with sadness that was slowly turning to anger.

I got in the car to drive my very short drive to work and I just yelled WHY WHY WHY WHY WHY WHY WHY WHY. LEAVE MY MOM ALONE. CAN’T YOU LEAVE MY MOM ALONE.

That was the gist of my conversation with myself in the car. Then I got to go into work.

Fast forward to 11am, I got a text from mom that said the words “just dry skin.” As it turns out the doctor told Mom there was no rash and it was just dry skin. As I chatted with Mom over my lunch hour at 12 I told her, I think we need to have a birthday redo. I say we ignore this morning, and officially restart your birthday at 12:00 today. She thought that was funny and we went on to have a really nice conversation. Mom was alert, we were communicating well with each other and it was just an overall good conversation. It made me thankful and amazed at how the day turned around. It was something I wanted to remember.

But I guess in a lot of ways that is life and that is what makes our days- the days that I am supposed to be taking one day at a time. On this particular day I felt every emotion possible and I felt them all before about noon. What did I learn? Sometimes you need to sit in the car and scream. Sometimes when you stand in line at Starbucks you have more on your mind than your coffee order so be kind to the people around you because you never know what’s on their mind as they wait to make their coffee order. Sometimes you need to press restart on your day and just move forward….whether it is your birthday or just another regular day.

Happy Birthday Mom! I am glad you had a great day filled with a fun dinner with friends and topped off with three free desserts from your favorite restaurant!

Have you ever had to press restart on a day? Have you ever screamed in the car? Do you ever bribe yourself to get out of bed and start your day with a Starbucks drink? 

I Need To Talk

Aside

I am having a hard time. There I said it. I am having a hard time. I don’t have a handle on this and feel like instead of getting better at handling Mom’s MS I am getting worse at it. To the outside world I tend to seem like I have it all together. I talk positively, I say all the right things, sure it’s tough, I am dealing with it, I am fine, etc etc.

Inside I am feeling differently.

Inside I am struggling. Inside I feel lonely. Inside I miss my Mom even though she is very much still here. For the past five years since I started working Mom and I have spent the majority of my lunch hours on the phone. Lunchtime chats is what we fondly referred to these conversations. I wandered around outside, talking about my morning, talking about life, just talking and then when my lunch hour was over I went back to work and Mom continued on with her day. These carefree conversations were something I never gave much thought but I could depend on them no matter what kind of day I was having- and in the course of starting new jobs, changing cities, managing challenging situations there were many moments where these conversations were what got me through the day.

But now things are different. Mom isn’t as sharp as she once was and I am not sure if that is the MS, the amount of medicine she is on or a combination of both. But regardless our conversations are not the same. There is a lot of repetition and a lot of simple topics that are not too complex. There are times where I just need some advice but I can’t get Mom to understand the story and in those moments I feel frustrated. There are times I call and Mom may be having a bad day or be in pain and in those moments I feel sad. There are times when we are having the exact same conversation we have already had before and in those moments I feel stressed.

When I get off the phone I am typically not in a better frame of mind than I was before and I need to shut it off and go back to work or go back to life….and that is hard. I feel like I am living a double life in my head- the person who has it all together / the daughter who feels like she has nothing together…and I am having a hard time managing it.

I need to come here and talk about this. I need to continue to talk about this. I have faith I’ll find a way to positively handle this new chapter in my journey with Mom’s MS…and I think a big part will be holding myself accountable about my true feelings here so I can begin to manage them.

How do you manage multiple emotions and situations going on in your life? How do you manage the tough parts while living the good parts? 

 

 

 

Rambling Under The Sun

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Mom is undergoing a steroid infusion this week. Every evening someone from home healthcare has been coming to our house to give Mom an infusion. Becuase of her decline the past few weeks, her physical therapist thought she may be having an MS exacerbation. My parents quickly made an appointment with her doctor who prescribed the steroid infusion to get her strength back.

I have to be honest, I didn’t think much of this. I didn’t think this would really make much of a difference and had started trying to reason my way through the changes in Mom. I am continuing to do this. But something strange happened this week- the steroid infusion began and I have felt through phone calls with Mom that her presence and spirit are back.

Today at lunch I was going to go run some errands and just called to check on her really quick. Really quick turned into 45 minutes….she was so tuned in, talkative and upbeat that I couldn’t bring myself to get off the phone. I soaked up every one of those minutes as I wandered around outside. We talked about the same things, she was rambling repeated comments a few times but I really didn’t care. It was just so nice to be able to talk to Mom…really talk. She wasn’t loopy or tired or out of it. She was Mom.

I know this may not last. I am very aware that this is most likely a result of the steroid in her body right now. But I also don’t care. I enjoyed this afternoon so much and felt so revived coming back for the second half of my day. It all ties back into living in the moment with Mom. I have been having tough moments the past few weeks. But today was a good one. It was one that I want to cherish.

I am heading home this evening to actually see Mom and Dad. Husband and I are attending a wedding with them tomorrow and then I will be staying there until Wednesday morning because Dad has to go out of town. He likes for either Sister K or I to stay with Mom if he is traveling overnight. I know we most likely won’t be able to do this forever but for right now we are both in situations that allow us to, so we do. It will be nice to be home and nice to spend some more time with Mom. More time working on my patience and working on living in the moment. Hope you have a great weekend!

I Feel Sad

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It’s been a strange week of talking to Dad on the phone about MS, Mom, how we are dealing with it, how we are handling it. There is a lot of frustration, a lot of questions, a lot of sadness. I think the main question that keeps coming up is “Why?” Why is this happening to us? Why was our family chosen to deal with this? Why doesn’t Mom want to try harder to fight this? Why can’t Mom improve like other people we hear about who have MS? Why is this so hard on my parents? Why does Dad have to be dealing with this along with everything else? Why.

We want to know why because this journey we are on with MS is painful. It is painful to watch and painful to live. Today was painful. I called Mom as I usually do on my lunch break around noon and she answered. She sounded a little out of it. I tried carrying on a conversation with her but felt like I couldn’t get her to focus. She asked me a question or two but I knew she wasn’t really listening to my response. Twice I couldn’t even understand what she was saying because her words almost sounded slurred. She said she was laying down and it seemed like she was literally dozing off- so I got off the phone. The conversation hurt me. It hurt me because it shines a bright reality light into my eyes that Mom very much has MS and she is actually not getting better. It’s easier for me to not focus on MS when I can call Mom and we can chat somewhat normally…when she is having a good day. But today was not a good day and with that comes the reminder of the pain of this disease for all of us. Mom is changing. It is reality.

I called Sister K to tell her about this and Sister K told me she was sorry and that Mom was probably tired. She seemed a bit frustrated because she felt I was seeking more of a response from her…I honestly wasn’t. But when I got off the phone I was left wondering what did I want? Why had I called Sister K to share this with her? She can’t fix it and make it go away…did I secretly want her to? Or did I just want to tell someone what had happened because I felt sad. I didn’t feel angry; I wasn’t asking why me; I just felt sad.

It is one thing to talk to Dad about Mom’s decline but it is another to experience it. It feels even bigger to experience it all alone on the phone. I was surrounded by people walking on the streets, yet I felt all alone. I think the person I really wanted to talk to was Mom and I was painfully realizing in many ways, at that moment, she wasn’t there.

Have you ever been surrounded by people yet feel all alone? Have you ever called someone after something tough but not really understanding why you called them at all? Do you experience moments where the light of a reality you try to conquer is shined brightly in your face?

The Importance of Good MOMents

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It’s a big day so it deserves a big post- Sister K officially has a boyfriend! I realize some of you may think this is funny or not that eventful but in my silly family of girls, things like this are a big deal. It’s also a big deal because I actually like this guy….as opposed to Sister K’s other “ghosts of boyfriends past” who I was not the biggest fan. Husband told me last night that he thinks it’s funny guys worry about meeting the Dad because in my family they should really be more worried about meeting me. Probably not my greatest quality…ha.

But today at lunch Sister K called me and we three-way called Mom. As I walked around on my lunch break we were listening to Sister K’s story, full of excitement, telling us about her new boyfriend, how much she likes him- lots of gushing and lots of happiness. I sat down on a bench and was listening to both of them in my ear, my best friends…and I listened as we all tried to take turns chiming in and catching up. I looked out at a tree and felt the crispness of the winter day and for a moment I wanted to freeze time. I wanted to freeze it because this moment- this is my life. It was a moment where we weren’t discussing MS. Mom’s MS hadn’t affected her mood. She was joyful and happy- allowing herself to be absorbed and wrapped up in her youngest daughter’s story. I could feel the love we have for each other while I sat on that phone. I realized that is what makes us so strong and our bond so unbreakable in the really tough moments. It’s these moments of pure bliss that build us up so we are able to fight hard in the tough moments. And as I have been trying hard to do lately, I paused for a moment and allowed myself to embrace and cherish this moment. It was a good one.

Have you ever thought about the importance of the good moments in life to form the bonds that help us get through the tough ones? When was the last time you wanted to freeze time? Does your family make a big deal about silly things? What do you think of the phrase “MOMents”?

Soak Up The Smile

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Do you love Starbucks? I do. Even though I am not coffee obsessed, I do love a Starbucks drink. I especially love a Starbucks drink when I am feeling exhausted…like right now.

I was talking to Mom this afternoon at lunch and telling her about everything I’d been up to with volunteering for this coat drive. While I was talking to her she was engaged, listening and really taking everything in- this may not seem like a big deal to most people, but it was a big deal to me. It meant Mom was having a good day. It made me smile.

I told Sister K about it later and she was excited too. It’s not because we never have good days or good moments with Mom; however, we realize that when we do have a good conversation, where everything seems to be clicking and aligned, it is important to cherish that moment. To truly appreciate it. To not take it for granted.

One of the biggest lessons I have learned through dealing with Mom’s MS has been don’t take any moments for granted. Cherish the good ones and remember them. Allow yourself to be happy and really feel it when something positive occurs. So today when I got off the phone, I allowed myself to smile and to soak up the happiness from that smile- to smile a smile that said I may be 28, but I just had a great conversation with my Mom and she is proud of me!

Do you allow yourself to truly cherish moments of happiness? Have you ever found yourself taking good moments for granted? Do you enjoy a Starbucks “pick me up” from time to time too?

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?

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?

Hang In There

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This is a blog about Mom and it’s also a blog about me. It’s about dealing with Mom’s MS but it’s about me dealing with Mom’s MS. Because of this you have to know a little about me. I have to share what’s going on in my life so you know where my head is at when things happen. Obviously when life is skipping by blissfully I am more equipped to handle Mom’s MS symptoms. When life is giving me nonstop lemons I have a shorter fuse for how I deal Mom’s MS.

Right now is tough because Husband is looking for jobs. He is a grad student getting his MBA and looking for jobs. It is competitive. He works so hard and it doesn’t seem to matter. It is just a tough job environment right now and he has been dealt a lot of rejections. The point though is I am down. It’s a lot to be dealing with for both of us. Yesterday was our 2 year anniversary and we had a wonderful dinner celebrating. Then I woke up this morning and felt like my 24 hour break from reality was over.

What’s interesting though is how much the importance of Mom’s MS has shifted in my mind as I deal with all of this. I call her, I tell her what’s going on and I don’t ask one thing about how she is feeling. But at the same time the MS is still very much there based on the comments she makes that are now very normal within conversation. Comments such as: “hold on a second, walking to the table and can’t walk and talk with the walker;” “trying to reach for an ingredient to make a brisket but Sister K rearranged everything in the pantry and now the items I need are high up and I can’t reach them;” “hold on had to let the dogs in and try not to fall geting the door open and bribing with treats.” All of these are little comments that have undertones of Mom’s MS sprinkled throughout. They are comments that in the past may have made me sad as I interpreted them to all signal a digression in Mom because of MS.

I think the point to all of this is there was a time when I thought I’d never be able to absorb all of this into my life and let everything intertwine naturally. But now I believe it has in many ways. Normal conversation with these sorts of comments mixed in doesn’t bother me, it’s just natural. Mom having a walker, that’s normal now too. It’s a new normal.

At the end of the conversation Mom said “hang in there, I love you” before she hung up. It meant a lot. Not sure why. In may ways it made me think of how I am dealing with Mom’s MS- I am hanging in there and I am handling it all better. So in thinking about this I am giving myself a pep talk too- hang in there with life and eventually things will turn around too.

How do you get through moments when it seems like you just can’t win in life? What are your magic words of support to give to others- is “hang in there” ever used? It’s a beautiful day where I am sitting or I should say sitting looking outside…how is your weather transitioning into fall?

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.