Tag Archives: Raw Moments

Unsuccessful Thoughts

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Can MS change a person? I am really questioning this because I am wondering about my own Mom. I am seeing changes in her personality that to put it simply, I don’t understand. I feel like an imposter is slowly taking over as Mom. I can’t explain it really, it is difficult and convoluted and again to put it simply, a mess. But I am struggling. I am struggling because this is Mom- my mom. The woman who I have always had on a pedestal. Who is supposed to be invincible, who is supposed to always say the right thing, who is supposed to listen, who is supposed to be there. All of a sudden things are changing. I don’t know why and I don’t know what is causing them to change. Is it just the simple pain of growing up, I don’t think so. Am I asking for too much, again I don’t think so. But something is strained. I feel stressed about what that something is- I am trying to put my finger on it and struggling to do so. Maybe if I can figure it out I can figure out how to deal with it. Maybe there is no way to handle this. Maybe it’s just life. Maybe I am searching for an answer that doesn’t exist.  

But I continue to wonder, can MS change a person? What do you think? How do you handle changes in people?

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?

I Really Am A Little Teapot

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I am sure you know the popular song, “I’m a little teapot short and stout….” Well today I had a monumental revelation- my life is a teapot. And this teapot that is my life, it is operated at more than than half full on a daily basis from Mom’s MS alone. Consequently if something else major happens in my life it doesn’t just increase the level of tea in the teapot but it will typically reach or exceed its boiling point. 

In a way everyone’s lives are a teapot. But most people operate their teapot daily at 1/4 full. So as issues arise and their level of tea increases it will boil more but it takes a lot to make it boil over. The problem is that on a day where everything else in my life is operating at neutral, my teapot can still boil over very easily from Mom’s MS alone. If she should be having a bad day or there are new issues to deal with, this alone can make it rise. Add on top of that any issues that may come up for me personally and my teapot is boiling over.   

I am learning that MS is very much physical but the mental portion of it can be equally frustrating. And I struggle because MS is so foreign to me. How much is Mom about to do and how much is she truly not able to do? How much wears her out and makes her tired? Could she be trying harder or is she trying as hard as she can? Sister K is home and frustrated because Mom doesn’t want to go do anything. It makes me upset because we want to go do things with our Mom- simple as that. I have talked a lot about that on here recently but I feel like since Mom’s relapse that is one of the hardest areas we are dealing with and adjusting to right now. The conflicting emotions involved when Mom wants to stay home and we want to go do something with her. Take her to a store, take her to lunch, take her to a movie- simple things that we like to do with our Mom.

So, this brings me back to the teapot. The normal feelings that would occur from the lack of being able to do these things doesn’t just make Sister K and me sad, it sends us into frustration. We end up close to reaching our boiling point. We have our normal MS frustrations plus the new ones plus any small issues that are festering in our own lives. We are still growing up, our lives are not very settled and it’s hard. Sister K can be set off by something as simple as boy problems. I can be set off by a simple fight with Husband that I have no patience for- usually over something that really shouldn’t bother me much…have I mentioned I am still in the newlywed category, still trying to adjust to being married? Sister K and I know we aren’t acting rational but at the same time we are having trouble dealing with our emotions and thoughts because there are so many of them about so many different things. Sometimes I wish I could find someone to “tip me over and pour me out…”

Have you ever thought of your life as a teapot? How do you keep from boiling over and manage your stress? Did you love the song “I’m a Little Teapot” as much as I did when you were growing up?

Learning to Fight the Fight

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Encouragement. I think it is one of the biggest pieces to helping Mom deal with MS. But it is also one of the biggest puzzle pieces too. What is the right way to encourage Mom? What do we say to keep her going? To keep her working hard? To in a sense keep her moving?

After Mom returned home from rehab, her doctor ordered 4 weeks of home healthcare coming out to our house. A physical therapist comes 3 days a week and a nurse also comes to check her blood pressure. It is a tedious process because people run late, times get changed or canceled, plus we have these 2 dogs at home that we have to corral while we have these people in our house working with Mom, not there to play with them. It is an ordeal for everyone. It is part of the reason Sister K and I went home last Friday so we could help out while the therapist was there.

But it’s been hard on Mom. She does her physical therapy and then ends up in pain in the evenings. She described it as a strong aching. It is a pain though that makes her want to quit. To quit physical therapy and just have Dad work with her. Dad has discussed that this is not an option while we have these services available. He is simply spread too thin to also be responsible for this. But the point is Mom has to keep moving. She wants to see faster and bigger results. When she doesn’t she wants to quit. It is hard for me to relate to because typically if you work out everyday you get stronger and stronger. She isn’t seeing this level of progress. She has improved greatly from where she was just 3 weeks ago but it is still small, baby step improvements.

All of this is tough though. Sister K and I were on the phone last night just thinking now we get to deal with this hurdle. It’s as if the hurdles with MS do not end. You just bounce from one to the next. I also don’t know what the right thing to say is, what does she need to hear. The strength she has to find has to come from within. We all know that. I wish she was naturally more of a fighter in these situations but she isn’t. It’s not her fault but she has never had to be and that’s not in her nature. But it makes it even harder when we hear about people who have MS and are fighting through it. Even though we also know MS and the people it affects cannot be compared. There is no comparison in them, no two cases are alike. But as a daughter it is hard to sit by and watch Mom not have the fighting spirit she needs. Sometimes it is there but sometimes it is not. And when it is not there, it is not fun.

So add motivational speaker to the many hats Sister K and I are wearing. Sometimes it is a positive conversation and sometimes it is a really tough one. All we can do is pick up and move forward. Each day is a new day. Some of these days will be easier on Mom than others. That’s just that way it is.

What keeps you fighting? What makes you feel encouraged? Do you believe a fighting spirit has to come from within or is it something that can be influenced by others? How do you encourage people in your life?

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.  

Guilty.

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I feel a lot of guilt right now living out my day to day activities. Almost like my mind needs to be focused on Mom 24/7 or I am being a bad daughter. No it’s not a normal thought. No one has ever implied this needs to be the case. This is self imposed. But since I can’t physically be at home part of me feels like I need to mentally be focused on Mom. What specifically do I feel guilty about. The list is strange. The list may not make much sense to others. But here it is, my secret guilt list..

I feel guilty that I sit at home at night laying on the couch in my apartment watching The Bachelorette while Dad is the only one at home in the evenings helping Mom. Doing minor chores, small tasks, getting things for Mom, etc.

I feel guilty that I get to sleep through the night knowing Dad gets woken up by Mom to help her readjust or get out and back into bed.

I feel guilty that Dad sometimes has to grocery shop at 10pm at night becuase he has been so busy running a million different directions, many of which involve Mom. I feel guilty because I complain if I have to run any errands in the evening after work and Dad does nothing but run errands some nights after a long day of work.

I feel guilty I have time to read books when so often I hear Dad say how much he wishes he had free time to read a book. I feel guilty when I go to the gym. I feel guilty enjoying tiny privileges like these in my life.

I feel guilty I don’t live in the same city as my parents. I feel guilty because I could be so much help if I did. I feel guilty because I don’t think it will ever happen.

I feel guilty when I don’t tell the truth. When people ask how Mom is and I paint a prettier picture than reality.

I feel guilty. For these things and many more. Some like the above I am aware of. Some I think I am not so aware of. But I feel it. I feel the guilt. The fact that it is guilt I can’t do anything about is making me feel anxious. I think it may be the reason I have been having trouble falling asleep. Because at night, when the activities of the day have gone and I am laying in bed it’s just my thoughts and me. And these thoughts. This is where they go.

Do you ever feel guilty for things you obviously have no control over? Do you have a secret guilt list? On a lighter note, any fellow Bachelorette fans out there?

Did I Ask For Your Advice?

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Have you ever noticed that everyone has an opinion? They really do. Positive. Negative. Everyone has one. Some people keep them to themselves. But a lot of people do not. That’s fine, I tell myself. I understand. They are only worried. They are concerned. 

But then I stopped to think about it. Really stopped to think about it and it’s not fine. I don’t understand. I never just offer my opinions about how people are running their lives the way people do to my family. And I don’t understand. Do we have a sign that says we don’t have control of the situation? The situation being Mom’s MS. 

Well, you are right. We don’t have control. We get close to having control. Then we have a million curve balls thrown at us at once. We are currently trying desperately to regain control. Dad, Sister K, Mom and I. Each in our own way but as a family. We are doing the best we can with what we have been given. The tough part is that I don’t think people realize this nor care. They just want to issue judgment. Tell us what we should be doing. What we should be making Mom do. How Mom should think. This has gone on long before the past few weeks. This has gone on since Mom was diagnosed with MS.

“Your Mom should walk with a cane.” “Your Mom needs to work out more.” “Your Mom needs to lose weight.” “Your Mom is running your Dad down.” “Your Mom isn’t telling you everything going on.” “Your Mom is depressed.” And it goes on, and on, and on…

And all of a sudden it has occurred to me…This is just rude.   

Aside from your care and concern, I would never and I mean never make comments to your children about you like this. Dad would never make comments to other men about their wives like this. But people do it to us all the time. Constantly. We have started dreading get togethers. We cannot escape it. I can’t even come up with an appropriate response it’s so ridiculous. Do I say thank you and chime in with my thoughts as I have been doing? {I think that may be wrong} Do I say something like we are doing the best we can? {That may be better} Do I say what I really want to and reply could you please keep your opinions to yourself because they are rude?

I was brought up with good manners. Sometimes I feel like it is one of my downfalls. Sister K and I say what we are supposed to say, we do what we are supposed to do, even when others don’t return the courtesy. But Mom’s MS is conflicting with these good manners. I am sure people mean well, they don’t know what else to say, they are only trying to be there for us. But I am tired. Exhausted by the comments. I am 28. Sister K is 25. You are much older than us. Maybe that is why you feel you have a license to comment. Maybe you secretly enjoy watching my family deal with a hurdle. Maybe you just want the juicy gossip. Maybe you legitimately care. I do not know but I also no longer care. If you really had any clue how hard this is on us you would put yourself in my shoes for a minute before speaking. How does it feel to be watching your Mom’s ability to walk deteriorate while your other friends are at the mall with their Moms? How does it feel to have your entire family’s world turned upside down? How does it feel to have no control over your Mom’s health, no straight path to getting better, nothing except trial and error- but don’t trial and error too long or you lose your window to improve? Do you think your comments help my stress about this? Do you think you make me feel any better with your comments? Oh yes, you dealt with something similar with your Mom when she was in her 80s. My mom is 59. Yet again, not the same.

Please stop giving Dad, Sister K and I advice. Let us deal with this ourselves. You have no idea how hard this is on us. You don’t understand. We didn’t ask for your advice so please don’t give it.

Do you ever have issues with the way people try to offer advice? Why do people feel entitled to offer advice when it wasn’t asked for? Am I being too hard on the world? Any advice on how you would respond to these comments?

Warning: I Am Angry

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Since I returned Monday I have noticed something. I am a little more short fused. I am letting my negative thoughts consume my mind. My fights are escalating. I am losing my cool easier.

I am angry.

I am. I am admitting it right here for the first time to myself. It has occurred to me maybe I am going through the “Stages of Grief” again. As if I haven’t already gone through them or continue to go through them with Mom’s MS. That makes me angry too. The fact that I feel like just as I feel I have reached “Acceptance” I am back behind in one of the other stages again. I am angry.

Tuesday night Sister K and I got into a big fight. Sure we fight from time to time but typically they are silly and one of us can snap the other out of it pretty quickly. We are fighting experts. I have to say I have been fighting with her longer than anyone else in the world. That’s the beauty of having a sister who is also your best friend. We fight we make up. The cycle continues. But Tuesday night I felt differently. I felt full of a different kind of anger and it wasn’t even directed at Sister K. I was just mad. And she was mad too. 

Then come Wednesday night I got into a fight with Husband on the phone. We still haven’t received our tax return we filed in March which is becoming a source of stress in our lives. With him being in school and me supporting us this is probably the one time in our entire lives where we really need the money. After a frustrating morning on the phone with the IRS they said there had been an error processing it, it was corrected April 15 and now it was being processed. We should be receiving it in 4-6 weeks which would have been last week. Husband is really mad about this as he should be. I just figure we can’t do anything about it. Literally we can’t do anything. There is no one you complain to about the IRS and it is pointless anger. We are just going to have to live until we get it. But the point is, we got into a huge fight.

Then yesterday at work I received a note from someone asking about Mom that rubbed me the wrong way. Implying Mom wasn’t telling her the truth. I was so mad. Then I got mad about some of the people we have in our lives who are nowhere to be seen. Then last night I got mad at Husband again on the phone. He told me I can’t expect that much out of people when they probably aren’t even sure what they should do themselves. This made me mad. As you can see, I am angry. But I think I am misdirecting all of my anger. It’s all coming out at all the wrong people and issues. 

Why am I angry? Or who am I angry at? I don’t know. I am mad at MS. I am mad that Mom went into the hospital for a week, is in rehab now but I am not sure she is having any major improvements. I am mad because I am not sure whose fault that is- MS or Mom? I am mad that this is all consuming in our family. I am mad because other families don’t have these issues with their Mom. I am mad that Mom had to be the one to get this. I am mad because I don’t think Mom is strong enough mentally and enough of a fighter to handle this. I am mad because my family needs a break. I am mad because there is no cure. There is no end in sight to this. I am mad because I am trying to take things one day at a time and my mind won’t let me. I am mad that all of this is so hard on Dad. I am mad that Dad is having to go through all of this. I am mad at the unknown of all of this. I am mad that Mom really may not improve very much while she is at rehab. I am mad because I am trying so hard to be optimistic about Mom’s health and struggling badly right now. I am mad because the reality of home health care is a little scarier than just the idea of it. I am mad because I am scared Mom is changing. I am mad because I see my relationship with Mom changing. I am mad because I feel like MS is slowly taking away who she is, especially the part of her that makes her Mom. I am mad because I want it to all go away. 

I want it to all go away. And it won’t. It’s never going away. Things are never going back to the way they were. My acceptance of this will come. I know it will. But right now I am angry.

To put it bluntly, this sucks.

It’s a Corner Built for Two

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All I want to do today is crawl into a corner.  That’s what sister K texted me this morning as I was getting ready for work.

I responded: Can I be in the corner too? 

She texted: Of course. It’s a corner built for two.

This weekend has been traumatic. I am still processing it. I realize to a lot of people what I write may not sound traumatic but to me this was a really big step in the wrong direction with Mom’s MS. It was a scary step. In some ways I feel like I had figured out how to deal with Mom’s MS. I had it in a nice box, tucked away and I was learning to deal with it and manage it. Then this weekend happened. I feel the like the box lid is off and there are things just pouring out. Faster than I can process them. Faster than I can think about them.

Mom had been having trouble last week with shooting pain in her leg. By Friday she had been diagnosed with what we thought was a herniated disc. Saturday and Sunday though she was just growing progressively worse.  No longer in pain because she was on such strong pain medications, but on Saturday she had lost the use of her left leg.  We thought this was related to the herniated disc. But then on Sunday she lost the use of her right leg. Dad started making decisions. Fast ones. Phone calls. Initially he pulled me aside to tell me he was thinking Mom may need to move into a rehabilitation center temporarily because someone needs to be working with her legs. He said given that he had pratically been up all night Saturday (in addition to the other nights prior with little sleep), he couldn’t continue to provide the level of care she needed right now. This was becoming an issue of quality of life for her. I watched as Mom just sat in her wheelchair sleeping with her head slunched over. It was sad. The only word I can use to describe it. Sad.

I always said I would be strong. I could be strong. He told me this and I started crying. This all of a sudden was becoming real. Facing the reality of what was going on. He then made a few more phone calls. Her doctor was concerned because she had lost the use of her right leg. That may be the MS and unrelated to the disc. Her body may be having an MS flare up. He wanted the MRI done asap.

While all this was going on Sister K was driving home. I was updating her on the phone. We were both scared, shocked, and leaning on each other. I needed her there. I didn’t realize how much I needed her there until she walked in the door. She got it. Without saying a word but just giving me a hug she understood everything I was feeling.

Dad called an ambulance company who came to get Mom. No sirens, no flashing lights but she needed to be taken in on a stretcher. She was essentially paralyzed. Dad told me to come back here. Sister K would stay. He said there was literally nothing I could do at this point. As annoying as it was, he was right. 

The MRI revealed Mom doesn’t have a herniated disc. Everything was normal. Sister K texted me the update this morning. The doctors didn’t read the MRI until about 1am. This wasn’t good. This was all MS. I tried to fight the tears and the panic. This is when Sister K decided she wanted to move to a corner.  And I wanted to go too.

Later this morning Dad called. He said Mom is having an MS flare up and they have started her on a steroid IV. He said she has to stay in the hospital 72 hours and then they are likely going to transport her to a rehabilitation facility. Luckily it is one that is affiliated with the one she goes to. She will see familiar faces. Maybe it won’t be so hard.

For now though she is in the hospital. Sister K is with her. I talked to them on speakerphone at lunch. Mom seemed in good spirits. She was cracking jokes. Sister K said every once in awhile she says something wacky or just falls asleep.  That’s where we are now physically.

But mentally. Mentally I am all over the place. I am scared. I couldn’t stop crying yesterday. I was trying to keep my mind in a good place and not let it drift to the world of the “what ifs” and “unknowns.” But it’s hard. I just want Mom back. I want her back mentally. It was so depressing to see the state she was in this weekend. To watch her debilitate like that. It was cruel. I just went through this with my Grandmother who passed away from Alzheimer’s in 2010. But that was different. I don’t know why. But then again I do. That was my Grandmother.  This is my Mom. It’s just a lot. I am even getting teary eyed writing this. It’s hard. And it’s sad.

I want to thank you for walking this journey with me. I had many thoughts yesterday that I knew somehow I wasn’t alone. I had those thoughts because of this blog. So thank you for being in the back of mind as my support team.

Pretending to Care

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Mom and Dad are going to go meet some of Mom’s college friends at someone’s ranch this weekend.  Since Mom is an only child her college best friends are like sisters to her and she really enjoys these get-togethers.  They have all had kids together and now we have become friends as well since we are close in age.  It’s friendship at its finest.  Telling these women about Mom’s MS was probably the hardest of anyone else she had to tell.  She actually had Sister K and I send them an email explaining it because she couldn’t do it herself.  They had seen changes in her, they were worried and they had begun to ask questions.  She was afraid of what would happen when they knew and how they would react.  Instead they have rallied behind her.  They call and email to see how she is.  Whenever we are all around they always keep conversation normal and don’t treat Mom any differently.  They offer to come to our house and help even though they live in different cities.  They are a group of people who have not only said they care but they’ve showed it.  An interesting concept- saying you care and showing it. 

Personally I have had a lot of people tell me they care.  Tell me to let them know if I need anything.  But the problem is they don’t maintain a close enough relationship that makes me comfortable enough to call on them.  Through Mom’s diagnosis I have learned as well who my real friends are and who really cares.  It’s been a painful process, one that’s still not over. 

I get asked by Husband, what would you like people to do?  The answer, I don’t know.  I don’t know, but I know when they aren’t doing what they should do if they really cared.  I want people to really mean it when they say they care.  I want people to make Mom comfortable when she is around them.  I want people to actually take Mom to lunch instead of just saying “I’m going to call you, we’re going to go to lunch.”  I want people to keep in touch with my family better and not just want to know the details whenever we happen to run into them.  In those same moments, I want them to stop with the quick reminders that they are there and they care.  I also want them to stop offering the unsolicited advice of the 100 things Dad, Sister K and I should be doing or making Mom do.  We are doing the best we can and if you really knew us, you’d know that.  

I have learned it really is true what they say- Actions Speak Louder Than Words.