A Secret Struggle

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

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

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.

Just Mom

Sometimes I think it’s good to not always focus on MS.  Mom’s MS is often a focus for us.  It somehow sneaks its way into pretty much every conversation.  It has a funny way of doing that- it’s a weasel.  A sneaky one. 

Today on the phone at lunch Mom and I just talked.  She was in a good mood, she was focused and listening. We laughed and we just talked.  I never asked about how she was feeling or how things were going today.  This wasn’t on purpose but I just didn’t think about it because our conversation was so filled with other things to talk about.

This afternoon as I was thinking about our conversation I got a smile on my face.  I was thinking of what a good conversation it was.  It’s important that not every chat with Mom, not every sentence or thought has to do with MS.  MS is important but it’s more important to focus on who Mom is without it.  Not Mom with MS but just Mom.  In my moments of frustration or sadness I forget this.  These moments don’t come as often as they used to but today was a good day.  Today I had the opportunity to allow my mind to be lost in just Mom through a phone call.  And I am thankful for the moment.

My Escape

I am in the midst of reading Hunger Games.  If you need a complete escape from life that will take over your thoughts and consume you while you’re reading, this is it.  I jumped on the bandwagon and am so happy I did.  Sister K and I are reading them together.  We have tried to get Mom to but she’s not very interested.  That’s fine because it has given Sister K and I something new to bond over, as if we needed one more thing. 

Hunger Games also provides a much needed escape.  How often in life we just need an escape and we can’t exactly pack up and head to a beach everyday.  Mom is escaping these days through games on her iPad- scramble, words with friends and newest draw with friends.  Sometimes we escape through television shows and discuss them together, The Bachelor is a big family favorite.  Our poor Dad.  But the point is no matter what it is, sometimes you need an escape. 

At lunch today Mom and I were talking about friends of mine who have started to have babies.  I told her I didn’t feel ready for that and she said well I am in no hurry for that either.  Her reasoning though is different than most Moms’ reasoning or what you would imagine- she is scared.  She is scared of her physical limitations as a mother to me and a grandmother to someone else when the time comes.  She is scared she won’t be able to offer me the support I need like her Mom helped her when I was first born.  She is scared of this because it is a big unknown.  What is also an unknown is how Mom’s physical state will be when this time comes.  I told her we would just deal with that when the time comes and made some silly jokes about making Sister K come and Mom could just bark orders at her while I caught up on sleep.  And she laughed, but at the same time it doesn’t change things.  It doesn’t fix the unknown for us. 

So after we had that chat I needed an escape.  I’m not running from problems or fears but at the same time this is one specifically I can’t dwell on because I can feel my mind beginning to go crazy when I think about the topic too much.  I can feel myself get upset.  It’s hard when the future used to bring a sense of anticipation and excitement of things to look forward to for our family and now those moments have an underlying sense of fear. 

So I escape.  I have Hunger Games to thank for that escape today.  Another moment it may be a tv show or a blog. The important thing though is to escape.  I know it’s healthy.  It allows me to take a break, to refocus so the parts of the future that are scary and unknown aren’t the front of my mind at a time when it’s not necessary for them to be there.    

Do you believe in escaping from life sometimes? What’s your escape?

Get Mad, Get Really Mad

“That’s so annoying.”  Those were the words I found myself saying to Mom today on the phone while she talked about an issue she was having with her ankles today. 

As I was talking to her, something happened.  Instead of trying to solve her issues or getting sad myself, I told her “that’s so annoying, Mom.”  And I just kept at it, like I was talking to a friend who was having a whole bunch of bad luck.  Taking the MS out of the equation.  I chimed in with her frustration and you could hear how frustrated I was for her in my voice.  Strangely enough, I think it helped.  In that moment I was on her side.  I wasn’t saying you should do this, you should try this, Mom it could be worse.  Instead I was on her side and I was mad at MS for her.  I was mad at life for her. 

If I think of when I am having a period of bad luck and people tell me “it will be okay”…sometimes you just really want them to get mad with you.  Show you that you’re not alone and your feelings are justified.  As a self proclaimed “problem solver” I have a tendency to try to fix these things before I allow myself to sometimes really understand what someone needs.  Sometimes people don’t need a solution, they don’t need a positive spin, they just want someone to get mad at life with them.  Without knowing this you actually help them more by not trying to fix their problem than fixing it. 

So today I got mad at MS.  I got mad with Mom.  We chimed in together about how this is so annoying.  How much this sucks.  How Mom just can’t win.  It felt good. 

Lesson learned: I think I will get mad at MS more often.

Struggling and Understanding

Mom has developed trouble with a symptom called spasticity in her legs.  I don’t exactly understand what it is or means.  The only thing I do know is Sister K and I like to do a funny accent to make Mom laugh and say “spaaasticity.”   I did some scholarly research which amounted to googling and found this at the National Multiple Sclerosis Society website. I don’t know much about spasticity but I know when Mom is having issues with it she describes it as tightening and occasional feelings of shocks sent through her legs. 

I think her use of the word “shocks” is interesting because it is also a good word to describe how I feel about this too.  Shock because MS and the symptoms that come along with it are never ending.  Everything I read, everyone I talk to has a new one that I never knew existed.  No two people experience it the exact same way.  Personally, I hate this part of this disease.  I think it makes coping with it more difficult because there is no way to predict what will or won’t happen to Mom.  There is no direct path of what usually happens or which symptoms usually occur.  There are some symptoms Mom doesn’t have and others she has had for awhile.  Will other symptoms surface later or is this as bad as it could get?  All these questions make researching and reading scary too.  It makes it scary because sometimes I enjoy living in the “dark” on big issues like this.  So I struggle.  I struggle because people tell me to do the research and get informed.  I struggle with how to find a balance between the known and the unknown.  One of which is scarier for me than the other.

One thing I can do though is try to understand.  When mom talks to me at lunchtime and starts opening up about how she is feeling on a particular day I ask questions.  I try not to ask general/basic questions but specific questions.  What does that feel like, describe it to me, does it hurt, etc.  I am finding that by asking her these it is also getting her to talk about her MS and giving her a way to vent about it.  It is also making me more aware of what is affecting her.  I used to be inclined to think she was exaggerating things or making them sound worse.  I had a tendency to brush off her comments about not feeling well and change the subject.  I am not proud of that but if I am going to be honest it is true.  In trying harder to understand the specifics of Mom’s symptoms I hope to be able to help her through them better.

A few weeks ago when Mom was visiting we were hanging out at Sister K’s apartment and her lower back was really hurting.  In the past I might have just brushed this off but I really sat and listened and thought of ways to help.  I remembered my chiropractor is always telling me to use ice- 10 minutes on, 10 minutes off.  So I got up and headed to the fridge where I found a frozen bag of vegetables I knew full well would never be used by Sister K.  So I came back and put the ice behind Mom’s back as she sat on the couch.  For the rest of the evening while I was there I was taking it on and off to help her.  She later said it really helped and she felt so much better. It made me feel good because I knew I had made a difference in helping to ease her feelings of pain for an evening. 

I can’t help all the time but if I can every once in awhile it will make a big difference in helping not only Mom but also helping me not feel so helpless in our fight against MS.