The Teeter-Totter of Life

Posted on May 18, 2012 by AG

A herniated disc. We think we might finally know what is wrong with Mom. I wish this potential diagnosis had come about easily but no. Nothing can ever be simple. Mom was up most of the night in pain again which means Dad was up most of the night. This morning they called a family friend of ours who is a doctor, who got them in to see a doctor he knows at a pain management clinic. He squeezed Mom in to see to him today and ordered an MRI for her to have done on Monday. But by feeling her back the Doctor said I think you have a herniated disc.

Feelings of being thankful we may finally know what is wrong and anger rushed through me at once. What has the other doctor been doing all week ordering these ct scans and just putting her on pain medicine? What is going on?

This is where this gets tricky. My mom has MS. But how I take care of her is different than how I would take care of her if she was say 88 with this disease. I am not the one that is going to pick up the phone and call a doctor to demand some answers. My parents are still fully in control of Mom’s health. Therefore Sister K and I play a tricky role. We aren’t in charge of Mom’s care but we are old enough to understand what is going on and to demand better. But at the same time we can’t. We have to stand by and wait for these decisions to be made by Mom and Dad. Sometimes they make them together. Sometimes they wait for Mom to make the final decision. It’s tricky. It’s tough. It makes this world of having a Mom with MS tricky and tough.

Right now we stand by. We offer advice. We provide pressure when we think it needs to be there if we don’t agree with decisions. But beyond that, the actual decision isn’t either Sister K’s nor mine to make. We are still trying to find our role in this portion of handling Mom’s MS. Realizing our parents do need our help but there is also a level to that support we can provide due to the nature of our responsibility in our family’s lives. Our parents are still at an age and state of health where these decisions are theirs to make. But we want to be involved. It reminds me of a teeter-totter. Sister K and I go back and forth. We have discussions together in one regard. Then we have to yield to our parents and their decisions and what they believe is the sense of urgency in another regard. We’re still trying to balance it and we haven’t come close to mastering it. New things come up. New health challenges. And new ways we feel we need to be involved in this. So we teeter-totter some more.

One way I know I can help is deciding to go home this weekend to help Mom and Dad out again. Sister K is coming down Sunday and will stay in town until Wednesday. Tomorrow I will take my Grandpa (Mom’s Dad) to a family reunion my parents were supposed to take him to but for obvious reasons can’t go. How hard of a time will I give Sister K because I am the chosen volunteer to attend the family reunion? Let’s just say she will be “on call” over text messages all day Saturday while I eat my $10/person bbq plate and hang out with Grandpa….

Do you ever feel like you walk a fine line when dealing with your parents’ health? Have you ever been really mad at a doctor because you could’ve diagnosed a symptom yourself sans medical degree? Do you like bbq?

~Thank you for reading this week and for coming back and continuing to read. It means more to me than you know. Hope you a wonderful weekend of laughter (and maybe some bbq in honor of me if that is an option where you live)!

A Different Kind of Mother’s Day

Posted on May 14, 2012 by AG

It was a different kind of Mother’s Day. It wasn’t flashy, it wasn’t full of fancy brunches or lots of gifts. But it was full of love. A lot of love for the greatest woman in my life. Mom.

As you know, Mom may have a stress fracture in her hip. Sister K and I were originally planning to surprise Mom by driving home for the day on Mother’s Day. But because of this new development, I decided to go home Saturday instead. I thought Dad could use the extra help and Mom could use the perk in her spirits. There are times when you feel truly needed once you arrive somewhere- this was one of those times.

Needless to say Mother’s Day in my house was not full of the usual restaurant lunch/brunch of years past. Mom didn’t even make it out of bed all day. Sister K did arrive and Mom got her second “daughter surprise” of the weekend. Sister K is staying home until today since I had to come back last night because of work.

To avoid any specifics out of respect to Mom I will keep things general. Mom was in a lot of pain and was on some very strong pain medicines that began to make her sick. Mom is also having a lot of trouble walking. Going from her bed to the bathroom, to the kitchen, anywhere. She has trouble getting into bed and once in needs to be adjusted. To put it simply, there is a lot to be done. A lot that can be overwhelming for one person.

But, even through the toughest moments of the weekend we found moments of laughter. Moments of smiles. There was the moment I completely forgot to put the brakes on Mom’s wheelchair while she was trying to get out and Dad responded with “Hello Genius!” There were Mom’s funny one-liners making fun of the situations we were in, the things we were having to do. There were the moments where I layed in bed rubbing her arm trying to soothe her and make the pain go away. Moments when she was in pure pain and I started telling gossipy stories to try to distract her mind or I told her to pretend she was back in labor and doing lamaze. There was also the fact that while I sat in bed feeding Mom soup, Sister K was rummaging through the bathroom cabinets screaming about mosquito bites she had just gotten outside and how bad they were hurting. As if we weren’t in the middle of a million other things, Sister K knows how to clear the air while directing the attention elsewhere. And it always makes us laugh.

Finally around 4pm yesterday we all sat down for a moment to eat. This would’ve normally been the moment where we traditionally celebrated Mother’s Day but yesterday’s Mother’s Day was different. We had picked up lunch food instead of going out to eat. Dad, Sister K and I got out the tv trays and all ate our lunch sitting on a bench at the foot of the bed in our parents’ room. Mom was laying in bed finally resting. Hello, Dolly! was playing on the tv. I had put the movie on earlier in the day as an uplifting and fun distraction. I have always loved this musical since I was little and I also know how much Mom loves Barbara Streisand.

As I sat there watching the end, Sister K on my left, Dad on my right, dogs behind us on the bed and Mom laying down I had a thought. This is it. This is what Mother’s Day at the heart of it is all about. A day of love and togetherness with family. This Mother’s Day celebration was a simple one but it was also a tough one. It made me realize how strong my family is, how resilient we are. It was a Mother’s Day where Mom watched the family she has been the anchor of all these years anchor her. She watched us use everything she had taught us and put it into action. She watched the strength she instilled in her daughters come to life. Amidst the pain and the stress, there were those simple moments of laughter and simple moments of love.

I don’t usually remember one Mother’s Day to the next, but I have a feeling I will always remember this one. I will especially remember the way I felt sitting on that bench for the rest of my life.

A Smile on a Dreary Day

Posted on May 8, 2012 by AG

In an effort to try and keep my mind more positive I am taking a step back to evaluate what brings negative thoughts into my life. This is and will continue to be an interesting process. Sort of surprising actually. I believe dealing with Mom’s MS has shifted this into not just an idea but a necessity for me. I have a lot of overwhelming thoughts I am dealing with internally right now. Sister K and I share these thoughts together. But these thoughts, they are not uplifting. They are anything but uplifting. It’s a battle of the mind in some ways. I am fighting to remain positive. It is my natural instinct to fall back on negative thoughts than to stay in the positive. It is easier but not healthier.

It’s a dreary day outside. It is interesting how it can impact your mood. A dreary day gives you 2 choices: You embrace the dreary day and are thankful for the excuse to curl up with a good book or you embrace the dreary day and allow yourself to transform your mood to be dreary like the weather. A year ago at this time I would have allowed my mood to mirror the weather. It would’ve sent a bad mood into overdrive. Now though, now I am challenging my mind. I am trying to make a conscious effort not to go there.

So what do I think about to stay positive today? I am thinking about my kindle. It was my birthday gift from Mom and Dad and I got it this past weekend when I was home. I love it. I am currently rereading Pride and Prejudice by Jane Austen. We watched the ending of the movie at home Saturday night because it was on tv so it was fresh in my mind when I went to look at the free books offered. More than that though, it has become an escape. A whimsical escape for my thoughts and my mind. It requires a little extra focus to read it because of the English literature. But once I am focused and reading I am absorbed. The feeling of being absorbed continues when I am not reading. I am not thinking about Mom’s MS in my spare thoughts but Elizabeth Bennett. Her mother’s love for her daughters and crazy antics reminds me of a sillier version of Mom. It makes me think of Mom as my Mom and not Mom with MS.

So tonight I am going to head home from work and transport myself to the Bennet family’s home filled with sisters, love and laughter. In a sense I will be wrapping myself up with the qualities I love most about my family. And on this dreary day thinking of that makes me smile.

My Escape

Posted on April 16, 2012 by AG

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?

Fighting Thoughts

Posted on April 13, 2012 by AG

It’s Friday and my head feels full. Full of thoughts of the week, full of plans for the weekend, full of life. I got frustrated with Mom last night for no reason. I had tried to talk on the phone to her the other evening but she was too tired from her rehab classes. I tried again last night but my Grandpa was over at our house for the evening because Dad is out of town. I was frustrated. Husband said I was being too hard on Mom. Sister K said I needed to relax. It was just hard. Knowing I needed to talk to her but she was tired and then she was busy. Two days in a row. But now here I am. About the same time on a Friday afternoon feeling a similar way and I am only tired from a work week. Not from a rehab class, not from trying to get into a car without falling, not from pushing a walker everywhere I go. No, I am just tired from the work week. Mom has all of this to deal with everyday plus thoughts. Thoughts about MS. Thoughts about her daughters. Thoughts about life.

Mom is still the same Mom but she does have a couple extra things going on inside of her mind. A couple extra things to worry about that are really not that little. They are actually bigger than I give them credit for. I don’t even know the full extent of what she worries about because I don’t know her innermost fears and thoughts.

So on this Friday as I sit here tired with a full head of thoughts, I think of Mom. I think of how I am blessed by the way she tries her hardest to keep up with us but sometimes she just can’t. I need to learn to recognize that. I think about ways I need to be more understanding in those times. I need to not be so hard on her and realize she is fighting to be Mom and fighting MS all at the same time. I need to not give her something else to fight with like me. Instead I need to learn how to fight my own thoughts. I need to fight to be more patient. I need to fight to be more understanding. I need to recognize this is part of my mom has MS.

Have a Happy Friday and a wonderful weekend. Hope you take a second to fight your own negative thoughts, whatever they may be. Thank you for coming here and reading this week.

Shoe Me Your Strength

Posted on April 12, 2012 by AG

When Mom got diagnosed with MS she had to get some special shoes to help with her walking. As you can imagine they aren’t exactly a designer shoe. To put it bluntly (which I don’t think I have ever done when talking about her shoes), they are glorified black velcro shoes. They are also a necessity for Mom’s life. They get the job done which is helping Mom stay balanced. But no matter how fashion conscious a person is that is tough. And Mom loved, still loves shoes. Cute little sandals in the summers or boots in the winter or even going without shoes around the house. These were now all things of the past. Her shoes, these shoes are a necessity now.

That being said, we try to focus on other fun accessories for Mom that will make her feel like a million bucks. A trendy purse to have set out even though she has a walker or some beautiful jewelry. I know people would say it’s not that big of a deal not wearing cute shoes but I doubt they’ve ever really thought about it. Never really thought about a simple item of clothing that seems irrelevent having that big of an impact on your everyday life. How would you feel if you were dressed head to toe in a beautiful formal gown and then had to put on a pair of black velcro sandals? That was Mom on my wedding day. A day that was as big for her in importance as it was for me. Her gown was a little extra long and you never noticed her shoes. She looked beautiful. But she knew she was wearing those shoes. She knew.

You have to be a strong person to put on these shoes and ignore them, especially in a society so focused on appearance and fashion. Putting on these shoes is not for the weak. Mom may not be able to run a marathon but I bet she is stronger than any marathon runner out there.

Just Call Me Mrs. Fix It

Posted on March 14, 2012 by AG

When there is something that I think I need to fix, I want to fix it right now. I could rattle off a list at any moment of things I think need to be fixed not only in my life but also my mom’s life. But then reality sets in and I have to get a grip. I have to realize I can’t fix everything and I especially can’t fix it all at once. Especially not with MS. It’s quite the opposite actually. It feels like just as I’ve gotten a handle on solving one issue another one comes up and then another comes up. It’s like the game at theme parks where you try to hit the weasels back down in their holes but just as you hit one another one pops up. This is my life, MS or not this is how I feel these days. It especially seems like in the midst of my own “life weasels” there is always something I am trying to solve for my mom.

The biggest kicker in all of this is she doesn’t ask me to solve anything for her. She takes it in stride. She is comfortable with her good days and bad days. She has found a way to cope with the MS weasel but I seem to think I know how she could handle it better. How is that even possible? How is it possible that I would know how she should handle her life with a disability better? I am not my mom and I don’t understand what she is going through. She is the one with MS, not me. She is the one living with this disease everyday, not me. I also can only imagine how exhausting it must be to constantly have MS in your life, like a pebble in your shoe that you can’t take out. I can’t imagine what it’s like. But what I do know is what it’s like to have a mom who has MS. What it’s like to be the daughter in this scenario. I need to better focus on my role of support but not my role of taking over. I can’t fix this and I can’t fix every issue. The one I can fix is how I act, how I respond, how I give support. I don’t plan on standing by and watching this disease take over. But I do plan on trying not to take over my mom’s decisions and instead take over my own decisions to show her the support she needs.

MS recess

because life didn't give me a manual when it gave my mom ms

Tag Archives: mind