We’re Going To Hug Her

Posted on May 9, 2012 by AG

I called Sister K on my lunch break today. We talked as I wandered the streets to get my mid-day iced tea from McDonald’s. I’ll admit that I have one just about everyday. I’ll also admit for $1.08 there are worse things I could be addicted to.

I had called Mom first but she was rushing to eat lunch so Dad could pick her up and take her to rehab. She mentioned her leg was in pain again. She was frustrated and down. We didn’t talk much about it and got off the phone quickly. So I called Sister K instead to inform her of this. We talked about it for a minute and then Sister K sighed and in a silly way said, “What are we gonna do?” And I paused for a minute and laughed to myself because there was such truth behind the question yet we both had no idea what the answer was. I also realized in this instant I could begin to get sad and down. I could begin to wallow in these circumstances. How things keep coming up with Mom and she can’t shake this leg pain. Instead though I caught myself. I was focused on positive thoughts just as Sister K said “We’re gonna hug her.” I couldn’t have said it better myself. Yes. That is exactly what we are going to do. Then I chimed in with my own list- we’re going to tell her we love her, we’re going to call her, we’re going to listen, we’re even going to surprise her on Sunday for Mother’s Day.

We wish we could fix this but we can’t. Sometimes the pain is too great, the medicines are not working fast enough, the symptoms are beyond our comprehension and all we can do is hug Mom. It’s those hugs that will say so much while at the same time saying nothing not all.

So we’re going to hug her and we’re not going to stop.

Have you ever thought about the power of a hug? Do you ever hug someone when you don’t know what else to say? Do you love a good hug as much as I do?

Dear Wasps, Thank you.

Posted on May 7, 2012 by AG

This past weekend Sister K, Husband and I drove home for the weekend. It was “Celebration Station” as my sister called it at our house- a belated birthday for me with my family, Cinco de Mayo and the Kentucky Derby all rolled into one.

Our Plan: Sister K and I began the afternoon pulling the cover off our patio table and chairs. Mom had bought a new one and wanted us to change them out. This was a very small task that took less than 5 minutes. We were then going to wipe the table off and spend the day relaxing with the family outside by the pool with homemade margaritas. For dinner we were planning to grill steaks and eat outside for the first time this year. Sister K and I had told Mom we would take care of getting everything out there because we know that usually is a stresser on Mom to deal with moving things from the kitchen to outside. Eating outside is relaxing and creates a positive mood for everyone that it is worth the extra effort.

Reality: My family is learning to go with the flow becuase of MS. I say my family, really I am learning more to go with the flow. Plans change on a whim, things don’t work out and you have to roll with it. Well our plans got turned upside down but this had nothing to do with MS. It had to do with wasps.

After taking off the table cover we were setting up the lawnchairs and I began to notice 2 bugs flying around. They seemed to be almost circling the table. I thought they were moths and didn’t pay much attention but then Sister K said, I think those are wasps. We were confused and then thought to ourselves, is there a wasp nest on the table cover? So what do two girls who are grown adults in their 20s do? Try to solve this for themselves? Absolutely not. We yelled inside for Dad.

He comes out and upon further inspection of the cover we realize there is in fact a tiny wasp nest attached to it. There weren’t any wasps near it because we had already moved it away so Dad crushed it. But, we still had the issue of what we thought were 2 wasps. A typical family is probably prepared for these things and has RAID or some other powerful product laying around. Not mine. But determined to not ruin pool day Sister K begins googling and realizes furniture cleaner will kill them as well as most household cleaners. So we get a bottle of Windex. We then proceed to corral our dogs and watch as Dad kills these 2 wasps. Success. We are in the clear. Let’s resume pool day.

No sooner have we layed one towel on a lawnchair does another one appear. Once again, what do we do? Yell inside for Dad. He reappears, Windex in hand. We kill another one. We go back to lay out our towels. Another one appears. We call for Dad again. This time he and Papa (our Grandpa was also over for Celebration Day) both come out. Sister K turns on the camera of her iPhone just as it disappears. So instead of just going back inside, I begin interviewing Dad about this experience and “mid-interview” a wasp appears. He goes after it. I am sitting here starting to laugh just remembering the sight of Dad strategically moving with a Windex bottle. All of this while Papa just sits silently with a little smile. A chuckle. A chuckle I think he has because he knows we can do this all day. The wasps are going to keep coming back. This was their home base. There will constantly be another one. Finally we declare pool day has been a bust. We go inside to eat chips and queso, drink our margaritas and laugh.

While all of this was going on Mom was asleep because she is on some strong medicine for the spasms in her legs that have been causing her painful leg cramps. The medicine makes her very dizzy, tired and sort of “out of it” for lack of a better description. She knew there was something going on with wasps because she couldn’t help but hear it from the bedroom but she was in and out of sleep during this.

At our steak dinner (in the kitchen, not outside) we were describing the afternoon to Mom when we remembered we had the live video Sister K had taken. It was the most special thing in the world watching her see it, reliving it and laughing hard with her over how funny it was: Picture a 28 year old girl with a sombrero on her head and blue mumu dress (that would be me) interviewing her Dad, then watching him with a can of windex trying to kill wasps and chasing them around, strategizing about where they are going. It was a sight to see.

The point though is we live day in and day out with Mom’s MS being in the background of our thoughts at different points everyday. We are concerned she is struggling in so much pain. We could focus on this. Sometimes we do. We actually had been discussing it Saturday morning. But Saturday afternoon we chose to focus on laughter. Today as I am reminded of my weekend, I am not sitting here sad because Mom didn’t feel well this weekend. I am sitting here smiling and laughing because of wasps. I am sitting here feeling a large amount of love for my family. I may even have a little love for wasps, as twisted as that sounds.

Lesson learned: Be silly. Be funny. Remember to laugh and laugh hard. Take advantage of technology. Record these funny moments when Mom may not be there to take part . She can relive them later. Today she is reliving this memory. She feels just as much involved in it as she would’ve had she been standing out on the patio seeing it firsthand.

At lunch today we had gotten off the phone and I was reading for a little bit before my lunch break was over. Mom called back and said, “You are never going to believe what I just saw while I was sitting here at the kitchen table- a wasp just flew by on the patio.” And we both laughed.

Do you ever have days of celebration that end up in a series of funny calamities? Are you good at going with the flow when plans change? Does your family keep a spare bottle of RAID around?

A Clear Head

Posted on April 26, 2012 by AG

At some point Dad, Sister K and Me have to realize Mom’s MS is her MS. It is our battle to fight but at the same time it is not. We can’t make her have a fighting spirit if she doesn’t want to have one. Regarding treatments, regarding medicines, regarding our plans….we are pushing and pushing and not having much success. The other day I had a thought- while this is our battle to fight it is ultimately Mom’s decisions what path it takes.

We will never be able to force her to do anything. Because of that we have to listen to her. We have to find out what her plan is and respect that even if it’s not what our plan would be. We are all exhausting so much energy coming up with ideas, discussing plans, alternative medicine ideas, doctors, etc that we are in a sense driving ourselves crazy. It is consuming us.

I have tried to blog everyday but I think that’s why yesterday I had to take a break. There may be other days when I have to take a break. Tuesday was a tough day and night with some tough conversations with Dad. I started to feel overwhelmed and overcome with stress from all of this. I also felt very frustrated with Mom. So yesterday I needed a break. I didn’t want to think about MS. When I talked to Mom on the phone at lunch, I didn’t bring up how she was feeling and we just talked. It was nice.

I think I learned a lesson, I can’t just sit and let my worries consume me, especially when its an issue that can’t be solved. I need to take a step back and come back to it later with a clear head and a better attitude.

Gotta Have Faith

Posted on April 24, 2012 by AG

I have to have faith in Dad. I think Sister K and I like to jump the gun, think we know best and take over. And we can’t. I had a nice talk with Dad last night on the phone which he said, I need you both to trust me that if and when the time comes that we need more help I fully intend to go get it. I am not going to wear myself out and I will know when that time comes. He also told me that unless Sister K and I intend to go back to school to get our nursing licenses we can’t help at the level that may be needed. That kind of made me laugh.

So Sister K and I are still working through things, we are still figuring them out but we are realizing we have to have faith in Dad. Faith that as Mom’s best friend he’ll know when, if it ever becomes necessary, to make the decision about getting extra help at home. He’ll know what he needs to do to take care of Mom and himself and we’ll be there to support him through it.

Listening and Loquats

Posted on April 19, 2012 by AG

I take for granted my ability to just straighten things up or do things around the house. My ability to have a “to do list” that if I avoid procrastinating I can get everything done in a timely manner. It isn’t until I go home do I realize how much I take this for granted. As a woman your natural instinct is to make things presentable and as a Mom even more so. I think this is why Mom gets even more frustrated over the “chores” around the house that she can’t do. The past week she was upset because her loquat plants were overgrown and needed to be cut back. She had no way of getting to them because if she got out there with her walker she couldn’t balance to cut them.

So yesterday Sister K went home just for the night. She had to pick up some things and was there less than 24 hours. But Sister K didn’t just go home and sit around and relax. We both have realized there are certain items Mom mentions that she really needs help getting done. Certain items that are just going to make her feel better knowing they are accomplished. We also know that if we don’t step up to do these things it will all rest on Dad’s shoulders in addition to the other things he does.

So Sister K stepped up. She ran some errands to a craft store to get some supplies Mom needed, she painted Mom’s toe nails (this is their thing, everytime Sister K comes home…and it’s sweet) and she cut back the loquats in the back yard. Just knowing how much these specific items mean to Mom I know she is already feeling better about life today. Sister K didn’t leave empty handed either, Mom sent her home with some tuna salad she got up early to prepare. A way Mom can still be Mom, sending us home with food after our visits.

We are learning that we need to help around the house in ways we might have overlooked before or in ways we might not have needed to before because Mom did those things herself. We also need to listen to what Mom needs. We need to listen because we can’t do everything but we can do a few things that will lift up her spirits and make her feel accomplished. Feel accomplished in the same way I feel when I have crossed off the items off my “to do list.”

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.

Finding Strength

Posted on April 10, 2012 by AG

I am 27, my sister is 25. We are handling a situation with our Mom that most people our age will not handle for another 20 years or so. When they do their parents will most likely already be grandparents. Sister K and I barely know who we are as adults. We are still trying to settle into being adults, still trying to deal with the life changes that occur in your 20s post college, still trying to figure out who we are and how to function in this world. I have been married just about a year and a half and am still trying to figure out being married. Sister K is working on her Masters degree and looking for jobs. But we aren’t having a chance to completely process all of these changes in our lives. There’s not a lot of time to deal with it or a lot of space in our minds. Instead we are being handed the ultimate in responsibility people go through in life, caring for a sick parent. We are watching Dad become a caregiver at a time when we thought we’d be watching our parents travel the world. We are seeing changes in our parents’ lives, seeing changes in them as people and seeing the changes in ourselves.

Sister K and I argue about the best approaches with Mom. We defend different issues. We take turns defending Mom, defending Dad, defending life, defending our approach. We are trying to get on the same page, really any page we can figure out. Most of the time we find a page, but we aren’t perfect. We both still feel like kids. In a sense we are. I know we are 27 and 25 but we both feel like we are only 7 and 5. Mom was supposed to be immortal. If issues like this were going to arise we thought we had many years until they did. We have been handed a circumstance that would shock most people if they knew everything. But they don’t. We deal with most of it on our own. Together, but on our own.

What have I learned in all of this? Sister K is the greatest gift I was ever given. The gift of not just any sister, but my sister gives me strength in all of this. There is no way I would survive this without Sister K. I am aware of that everyday. She is the only person in the world who truly gets what I am going through. She understands every issue, every fear, every thought becuase it’s her Mom too. In moments where I look at who we have become and our relationship, I wonder if God has been preparing us for this moment our entire lives.

Get Mad, Get Really Mad

Posted on April 5, 2012 by AG

“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.

Weekend Lessons

Posted on March 26, 2012 by AG

This weekend Mom came up to visit Sister K and me. Dad brought her up Friday evening and my Grandpa tagged along for the ride. On Saturday afternoon after the wedding shower Sister K and I drove Mom to meet Dad at a halway point. A lot happened this weekend in a short amount of time. We had incredible highs and incredible lows. But, that’s how it always seems. It was also a lot to process in approximately 24 hours of a visit. I plan to write more about the weekend and the lessons learned. For now, some general weekend lessons:

1. Stress and MS are not friends. Neither are helpful under a perfect scenario and together they are full blown enemies. They antagonize each other and they do it at Mom’s expense.

2. I know MS is awful but I forget how much this has truly hindered Mom’s life. How it has been a big blow to her plans and dreams for this stage in her life.

3. My family is full of not only love but committment. Committment to Mom and committment that we will not allow MS to hinder her life or our family’s life anymore than it already has.

4. There is a big fear of the unknown for Mom. I need to find ways to eliminate that fear.

5. Laughter is an amazing medicine. It can calm nerves, make people smile and even eliminate pain for a brief period.

This weekend two things happened. Simultaneously. Without me being aware. My hatred for MS grew while at the same time my love, admiration and respect for Mom grew.

2 Steps Ahead, 2 Steps Behind

Posted on March 13, 2012 by AG

I took a flight last weekend and before take off I watched and listened as the flight attendants did their emergency monologue. They alerted me to all the details of the aircraft, pointed to the location of restrooms and showed me what to do with an oxygen mask in the event of an emergency. The message is simple if you really listen: be 2 steps ahead, be aware of your surroundings and be ready if there is an emergency. While listening this time I began to think about the amount of pressure I place on myself to be 2 steps ahead, to be aware of my surroundings and to be ready when I am with my mom outside of our home.

My mom now walks with a walker which has given a new dyanmic to our adventures outside the home. No matter where we are- the mall, a grocery store, a restaurant, a concert, even a football game, from the moment I get out of the car I immediately feel like I am on the lookout. I am aware. I am ready. I am looking for the easiest way for her to get inside, I am looking at the sidewalk to see where it slopes down so she can wheel herself up, I am watching out for cars to determine a nice gap that won’t make my mom uncomfortable when crossing the street. I am mentally 2 steps ahead. But it doesnt end there. Once we get inside I start over with a new list- the best way to leave when we are done, the easiest way to our table at the restaurant, which seat at the table is best for her, where can she sit on her walker in the store so she’s not in anyone’s way.

It’s a lot to think about constantly and I become overwhelmed at times. I really do mean well but I have an ability to stress everyone else around me because of it. My sister manages this better than me. She has always been better at managing the unknown in life, dealing with things as they come up. Not me. I am the planner and if I can’t be 2 steps ahead it is even scarier to live it in real life and dare I say feel 2 steps behind. Sometimes I think it’s ironic that I am a planner and the entire nature of MS mocks me because of it. Constantly. I am realizing the constant planning and constant thinking is exhausting. The only thing I can successfully predict is that I can’t predict how an afternoon at the mall is going to go. Regardless of my mom having MS, I will never be able to predict life.

So I try really hard to mentally relax, try to be more “go with the flow,” try to become comfortable with being 2 steps behind. I try to focus on the moment and not 10 moments from now. My mom having MS is teaching me this. Instead of one day at a time I need to take things one moment at a time. Easier said than done. I fail at this regularly. I fail at this more than I’d like to admit. But sometimes I don’t. Sometimes there is a day or a moment where I am successful. When I am I can see the happiness on my mom’s face and I can feel my own happiness in my bones. Not only did I make things easier on my mom but I made them easier on myself. I am learning to be more flexible and finding myself gaining greater peace of mind in the process. I’m trying to stay 2 steps behind one moment at a time.

MS recess

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

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