Same Ol’ Same Ol’

It’s amazing how the mind works. I am beginning to think that when I look back on how I am mentally able to process everything going on with Mom and its impact on my family, I will someday wonder how I did it. I will someday be on the other side of it and look back and think how did I function through all of that? I most likely don’t give my mind enough credit, instead questioning its reactions to everything.

Mom is going home from the rehab facility tomorrow. Sister K and I talked to her about it Wednesday night in a conversation that went in circles. Circles in the fact that we talked about the same thing several times and we both weren’t sure where it was going. We got disconnected in the middle from Mom, Sister K called me back before calling Mom and all we could do was laugh and say “whatttt is going on right now???” Moments like that I can honestly say with every ounce of my being I do not know what I would do without my sister.

I talked to Dad about it a little yesterday and some more today. He told me he had gotten the file from the place and it said Mom had been “self limiting.” An interesting choice of words…taken to mean she isn’t pushing herself like she should. Other charts revealed she had not improved very much. Basically she will be returning home and after one month, we are exactly where we were a month ago. My exact thoughts about all of this initially have been realized. So what next?

Dad said he is bringing in a new company and people to stay with Mom during the day/night. Bringing in a physical therapist to work with her 1 hour a day. He’s going to explain she has to get improve because this is the last option we have…last option before what? I thought rehab was the last option? Now this is the last option?

I realized something on the phone. I could’ve said exactly all of that to Dad on the phone but I didn’t. My conversations on this topic are having to shift a little with Dad because I am having to listen but stay quiet and supportive…even though deep down I really feel very differently and have my own very different thoughts. The words used have become something of a “same ol same ol” in our house. I feel very same ol same ol right now about everything. People ask how Mom is doing? How was rehab? Same ol same ol. This is a big reason I think why I kept this so quiet from everyone…because I wondered deep down if this would happen. I’d rather have never said anything then have to say we are back to same ol same ol.

But what happens when you get tired of this never ending circle we seem to be in called same ol same ol? Is it bad to wonder how much longer your family will be stuck in this never ending space of same ol same ol? Because I wonder. And as someone who hates change, I am beginning to wonder if we are ever going to see any…and dare I say I am actually beginning to pray for change. Because the lack of anything is beginning to wear all of us out. I see Dad trying to keep his spirits up. Taking any hope he gets from anyone as the end all, be all word. I just don’t react the same. Instead when he talks to me and tells me these plans for Mom, I just think same ol same ol. Maybe its bad or maybe it is how my mind is coping with it. The brain is an interesting place and I can’t imagine it is easy to process all of this…maybe instead it has decided this portion of my life is going to be stuck in same ol same ol, so I can remain the support system my family needs without really acknowledging everything going on…I have to trust my mind because it may have decided that if it stops to acknowledge everything going on, it will be overwhelming on levels even it cannot handle.

So how am I today? Same ol same ol. How are you?

 

A Monday Smile

We got Mom an iPhone for Christmas and it has been a hilarious undertaking trying to explain how to use it…especially via long distance. She’s got the phone and texting parts down but when it comes to fancier things, Sister K and I must take a “patience pill” before we start explaining.

The best thing about Mom getting an iPhone has been the addition of group text messages into our life. Sister K and I have had to learn to slow down our thoughts because Mom can’t keep up…slow down. Seems to be a growing theme with all things MS related. Another post for another day.

Last night, somehow, Mom managed to take a “selfie video” (as she called it) of herself watching the Oscars and of the decorations in her room at her rehab place courtesy of Sister K. It was a silly video but you could tell she was really trying to capture everything in and was so proud of it. She also said if we share the video we are dead…so unfortunately I won’t be sharing.

Sister K was the one who guided her through how to send it to us via text. Sister K seems to be better at explaining these technology things to Mom. I think I get overwhelmed and don’t even know where to begin with teaching her how to do it…it is probably because Sister K is a teacher and naturally thinks in teaching ways. I think big picture, I am overwhelmed and Sister K just dives in…although there are times when we flip roles and it is the reverse of this between us.

Regardless, it was a cute video and it was sweet to see Mom being so proud of what may seem like a little accomplishment to many. It is also another example of the power of technology in keeping people connected…I think people forget that many of these connections could be happening in hospital rooms/rehab rooms with people away from family all over the country. The video also made me smile when I watched it last night…and it just made me sit back and smile as I just watched it again…not for the content but for a Monday smile.

I hope something crosses your path today no matter how simple or silly it may seem that makes you smile too.

 

I Am Having A Bad Daughter Moment

Confession: I feel like such a bad daughter. Last night Dad called and he was so excited because Mom was able to stand for a few minutes holding on to these bars at her rehab facility. I was on the phone and for whatever reason I just didn’t want to hear it. It is a mix between struggling to care and struggling to hope. I think my exact response in my head (not out loud) was thinking that’s great, is she going to stand tomorrow? My exact response out loud was “that’s so great Dad. Wow. That is amazing.”

I mean I feel awful that I had this thought. That I continue to have thoughts like this. Sister K said, we have to let Dad just be Dad with all this because maybe he needs this so he can get a better idea of where Mom is at and how she will or will not improve. She is probably right. But I just feel like I have really limited patience or ability to “fake” excitement right now. So instead I have kind of pulled back from checking in on Mom’s progress or getting updates as often.

Don’t get me wrong. I am not struggling with my relationship with my family…I am just feeling off about everything going on right now.

I feel bad about it. I continue to feel bad about it. I don’t know why I am feeling this way right now but I am. I just needed to come here and say it. I needed to tell someone.

Thank you for being my someones. 

A Lot To Talk About

I have to admit that I think I have been avoiding this blog. Not because I don’t have a lot to talk about but because I have a lot to talk about and in talking about it, it all becomes more real.

The past few months have been tough with Mom. Basically she is pretty much bedridden or in a wheelchair. She cannot stand on her own or walk. I am sure you can imagine the challenge this has created within my family..more specifically Dad. We have had two women caring for Mom for the past 6 months, one during the day and one at night. Dad has been doing it on his own on the weekends.

One weekend in January I went home and took care of Mom on my own. Dad was on a work trip and Sister K and I wanted him to stay an extra day so he could just have some time to himself. In order to do this, one of us needed to go home and be with Mom. It worked out better for my schedule so I did. I was happy to do it but it was mentally and physically exhausting at the same time. I just kept thinking I can’t believe Dad does this on his own every weekend on top of managing life- running errands, grocery shopping and taking care of everything else. I had taken home my computer, books and movies thinking we’d have lots of down time but that was not the case. I am not sure how but it just was not the case.

To make a long update short, at the recommendation of Mom’s physical therapist and Mom’s doctor, Mom has entered a rehab facility for intense physical therapy for a few weeks. She has been there about two weeks and going on her third week. It was a battle to get her in there in the first place because of insurance since this is different from last time when she went from the hospital to rehab.

How is she doing? Has there been improvement? Sorta. But she isn’t standing or walking yet and a big part of me wonders if she will ever stand or walk again. I am having some serious internal struggling with this since Dad is so hopeful that she will and I don’t want to see like the family pessimist. At the same time, I have read a lot on MS and I just don’t know. No one knows I guess.

So I guess you could say I am struggling right now. MS continues to be something our family is dealing with and it continues to be something that will never give us a break. Even Mom being in rehab hasn’t been a “break” for Dad because he is having to stay on top of her care, on top of the doctors, physical therapists and go to visit her when he isn’t at work. It has actually added more to the work load than less like he originally thought.

I will continue to write more on all of these topics. I need to. I think it is helpful on a lot of levels and I am going to force myself to do it. The bottom line is writing about it is like my own therapy and writing about it amidst this community has become a way and a place for me to know that my family is not alone in our struggles. Thanks for continuing to read as I come and go from time to time. I am beginning to think it is reflective of how I am managing everything, how much I want to talk about it and deal with it and how much I prefer to remain quiet. But there is a lot to talk about and I am going to continue to do it.

We Never Stop Learning From Our Mom

Going home is always interesting right now. Always. I feel like new challenges emerge, new themes within myself and new themes within our family. Everytime. As I am managing Mom’s MS I am also managing myself. I am learning a lot about myself in the process- learning that there are some things I have to improve upon to make me a better daughter but in another way to make me a better person. It is almost as if Mom is still teaching me even though she thinks she isn’t. She is still molding me as Mom even when she doesn’t realize it.

Slowing down: It is no lie that when Sister K and I go home we are forced (not necessarily by choice) to slow down. Our family moves slow, we can’t go anywhere quickly, we run late to everything and we don’t do nearly as many activities as we once did on the weekends. There is a lot of lounging around. A lot of just being.

Slow Down.

Being Present: At home it seems we are constantly multitasking. Constantly. I feel this a lot especially internally. I am looking at what we need to get done during the day. Looking at the point we are at currently. Trying to rush to get errands run, feeling stressed and uneasy about things that need to get done…and in the process my body is present but my mind is not. When every time and I do mean every time we somehow get it all done. And if we don’t get it all done we manage to figure out an alternative. It is like I can’t just have faith that it will all work out, knowing in the past that it will all work out and just chill out. Maybe it is a control thing or the inner planner in me…I am not sure…but I do know I become so fixated on the tasks we need to achieve instead of being present for the moment happening right now. A moment I probably won’t get back.

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Enjoying Moments: I have got to find a way to calm the voices inside of my mind, calm the negative thoughts, calm the worries and just focus on and enjoy my moments at home. I am not saying everything is perfect and that ever moment is enjoyable. We deal with a lot when we are home and do a lot to help Mom in order to give Dad a break. We are not perfect. There are moments where it is too much for Sister K and I step in or vice versa…or moments we notice Dad struggling and we step in. We read each other very well and I do consider that a major blessing. But at the end of the day, these moments regardless of how mundane or boring they may seem to other people, they are our family moments right now. This is the time we have been given to spend with Mom and I need to be present for them and enjoy them. I need to put aside my phone, put my thoughts or worries aside knowing they will all get done and just be present.

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It is amazing to me but Mom is still teaching me through this, she just doesn’t realize it. She is teaching me to be still and to be present to better enjoy moments like the above- an afternoon movie with Mom, Sister K and our dogs. Mom’s MS is full of tough times, special moments and lessons learned. The journey I am taking as being a part of this is molding and shaping me in new ways everyday…I just need to take a step back when I get overwhelmed and remember that.

Do you have trouble with being still and present in life? How do you allow yourself to quiet your mind and enjoy moments? Do you think sometimes the smallest and simplest moments are also the most special? 

A Different Kind of New Year’s

New Year’s Day is usually synonymous with optimism for the new year, resolutions, relaxing, organizing, and enjoying a well deserved day off. This was my plan heading into 2014 but I soon realized that was not how I was going to spend the first day of 2014.

Husband and I traveled home to be with my parents for New Year’s Eve because we had a wedding for a family friend to attend. We were running late as usual because it takes Mom a long time to get ready. It then takes a long time to get in the car. And as I watch Dad do this I fear every time he is going to hurt himself. We missed the ceremony but showed up in time for the reception. I watched Mom as she repeated herself several times about a group picture she wanted to take. Not repeating to make sure it got done but repeating to because she thought it was the first time she said it. I started to cringe a little bit. We then had to maneuver her around across cobblestone rocks that hurt her legs. We then had to find a good spot inside for her to sit. And the list went on and on. I sat there at the table just kind of tired and mentally out of it. Thinking these used to be fun and care free events for my family and now they just aren’t.

But we rang in the New Year at home with Mom and Dad. We had champagne and chips and queso. Husband and I opened belated Christmas gifts. It was a nice ending to the year.

New Year’s Day was frustrating though. It was frustrating because Husband and I had planned to get up and leave early. I quickly realized after waking up that wasn’t going to happen. It wasn’t going to happen because Mom had invited Papa over for a big spaghetti lunch. She kept saying Dad could take care of getting everything ready but there was no way Dad could take care of everything because he was busy taking care of Mom. A whole separate issue going on right now too. I realized I had to stay. I had to stay to get lunch fixed. Mom had envisioned this lunch in her head and even though I felt it was unrealistic, it was too late and I needed to execute it. So I did. Husband and I stayed around and didn’t leave to drive back to our home until around 4 getting home around 7pm.

I felt happy I could step in for my parents and help them out. I also felt frustrated I had to step in to help them out. I also just felt defeated. I feel defeated by MS right now. I feel angry it is in our lives. I feel helpless about what to do. I feel sad for Dad and everything he is going through as Mom’s caregiver. I feel clueless about where it is going. I feel hopeless and then I feel guilty for feeling hopeless. I feel selfish for saying I miss Mom and I miss the way things used to be. I am feeling a lot right now. I don’t understand what 2014 holds. I know where we were a year ago and I know where we are today. I don’t know where we will be tomorrow. I am trying to take one day at a time but it’s hard. It’s hard when you can’t see a light at the end of the tunnel. You just see another day in the tunnel. And I am worried that 2014 is going to be a year of tunnel-filled days.

Wishing you health and happiness in the New Year! Thanks for sticking with me through 2013! 

A Thanksgiving Lesson

Husband and I traveled to my family’s house for Thanksgiving this year. Sister K spent Thanksgiving with her boyfriend’s family and with Mom primarily bedridden right now, I wasn’t sure how the holiday was going to go. I am big on traditions- the tradition of seeing Mom in the kitchen cooking, everyone together eating, etc etc. Because of this I was honestly a little nervous about Thanksgiving. But I realized a big Thanksgiving lesson- I realized at the end of the day, the purpose of the holiday is family, not food…and it is being thankful for present moments, not past traditions.

What am I talking about?

Well this year we ordered turkey and stuffing. We also ordered pies instead of baking them. Sister K is a teacher and was able to go home on Tuesday to help Mom cook some sides in preparation for Thanksgiving. Then on Thursday I cooked a few more sides and pretty much played hostess to our small family consisting of Papa, Husband and Dad plus Mom and me. Mom wasn’t able to cook anything like she wanted but I did have her cell phone and while I was in the kitchen trying to figure out sweet potatoes I was calling her (only 2 rooms away) to figure out what to do. Going into the weekend I was quite nervous- I was going to have Husband there and combine trying to make sure he is having a good time with a new dynamic in my family, a dynamic that is constantly changing. I had already talked to him about it a lot and he was totally fine as I deep down knew he would be…he reassured me constantly going into it saying we will just go with it.

And go with it we did. I am still processing the fact that in putting away any plans or expectations and “just going with it” I had a wonderful weekend. I also had a very eye opening weekend. I realized that Thanksgiving isn’t about traditional food, cooking together or Mom being in the kitchen. Thanksgiving is about being thankful. I made myself focus on the little moments of being thankful and I am so glad I did- because it was in those little moments that I found Thanksgiving and found the things for which I am most thankful.

And my favorite moment from the weekend- it didn’t involve Thanksgiving Day at all…

It involved Mom, me and Hallmark channel movies. Saturday night Husband and Dad went to go see a “shoot ‘em up guy movie” and Mom and I stayed home. We made Thanksgiving leftovers which we ate in Mom and Dad’s room and watched back to back Hallmark Christmas movies. There we were Mom in her hospital bed, me laying in Mom and Dad’s bed with my high school purple fuzzy slippers, Hallmark Christmas movies on the TV and a daughter whose eyes felt very opened to what family and holidays are all about- it was honestly one of those moments I wish I could have lived in forever.

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Hallmark Christmas movies with Mom

Did I learn a big lesson in what it means to be Thankful? Yes. Did I also learn a big lesson in the moments I am thankful for? Yes to that too. I am trying to focus on these little moments more and more…especially when I am home and especially considering Mom’s MS doesn’t seem to be getting any better. These moments are going to carry me to the next moment. These moments will get me through the tough moments. We are given these little moments to remember that this is it. This is life. It is in these moments that I find pure bliss. I am making an effort to focus on these moments more, moments that I know can’t physically last forever but moments that if I take a minute to appreciate will last forever in my mind. It is these moments that I am thankful for this Thanksgiving season.

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Bring it Aisle 17.

Also, just because I love all of you here is a picture of husband and me this Thanksgiving. After dropping off Papa on Thanksgiving evening, we headed to Target to see if there were any deals we could score and this photo-op happened. Another moment I am thankful for and want to remember forever.

What little moments did you have this Thanksgiving? Do you think sometimes there is too much emphasis on tradition and not enough emphasis on the present? I am thankful for each of you and wish each of you a wonderful holiday season. Thank you for reading and sharing while I try to navigate this new part of life.