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?

 

Advertisements

I Can’t Fix This. (and I am slowly becoming okay with that)

There are two sides to MS in my life- there is what Mom is going through and there is what Dad is going through. I see both sides. Or I should say I hear both sides. More specifically I heard both sides on the phone yesterday.

Mom is in pain. A lot of pain. She is also pretty much bedridden right now. It’s the first time I have said it that way but that is what it is- Mom is pretty much confined to her bed. Her physical therapist has recommended she possibly go back to the rehab facility she was in post-hospital in May 2012. She thinks it will do more for Mom than she can do with just a couple hour visits a couple times a week. Mom feels helpless. Mom feels bad for the burden she is placing on Dad. She feels sad that this is happening. And I get it.

Dad is overwhelmed. Rightfully so. He is going nonstop these days. He does have someone in our house both during the day and at night to help Mom. But on the weekends he is on his own. He’s also just mentally going nonstop. Running his company. Running our house. Also managing Papa’s life. It’s a lot. I have known this for awhile and unfortunately instead of getting better with the addition of help in our house it kind of seems to just be a small band-aid.

But for the first time I really didn’t get overwhelmed/depressed/stressed by this. I listened to Mom and talked to her. I listened to Dad and talked to him. Then I got off the phone and just sort of let it all just settle into the back of my mind. I am not avoiding the issues but I am also not focusing on them. I am beginning to believe we are reaching a cross roads with all of this. A cross roads which I am not sure what the result is going to be because for once I am finally admitting I not only don’t have control but I also can’t fix it. The two biggest things I struggle with I am slowly realizing to let go of them. Call it growth. Call it faith. Whatever it is, I need to trust it to guide my family and me through the challenges we continue to face.

Thanks to this place for listening. And thank you for being a place for me to share my struggles. I think I have experienced this little thing called growth thanks to this other little thing called my MSRecess.

Have you ever had a challenge or struggle that you finally just let go of? Have you ever experienced issues with trying to control or fix things in life and finally realized you just can’t? I’m not an expert yet but I hope I am slowly getting there. I’d love to hear your tips when you feel challenged by life.

Thinking Small Picture

This past summer Husband and I moved to a new city. In the midst of a new city, starting a new job, unpacking in a new apartment…I was a bit on new overload. One of the only things that was stable was that I could run. Then all of a sudden I started having this sharp pain in my knee as I ran- a pain that tells you something is wrong. I thought I’d torn my meniscus, Husband thought I had tendonitis and after getting to find an orthopedist in a new city with my new insurance, I was told I had IT Band Syndrome. What?

That was my response. Maybe you have heard of it but I didn’t even know I had an IT Band. I was prescribed Physical Therapy 2-3 times a week for 6 weeks. I was a bit on overload with all of these changes and now this was slowly sending me over the edge. Frustration. Defeat. Frustration. Defeat. The feelings rolled back and forth for about 4 weeks. I also didn’t believe I would ever be “fixed.” I didn’t know IT Band Syndrome made any sense. As someone who isn’t even that big of a runner but just does it as a work out, I felt extremely helpless.

Slowly though, my Physical Therapist got me running. He started with this fancy machine that “de-weights” you. Have you ever seen this? I put on these fancy biker shorts that zipped me into the top of this machine, then the machine fills with air and I am only running on 80% of my weight. It was crazy. I was describing it to my new boss and she demanded to see a picture of the “fat suit.” Since I have no shame, I figured I owed it to all of you to show you a picture too:

IMG_1358

The reason I tell this story that has gone way off track is that there were many moments throughout this process where I wondered if this defeat and frustration is what Mom feels. I know she feels helpless. The task of just running without pain felt like a huge obstacle I would never overcome. I imagine that is how Mom feels about standing, about walking, about regaining her strength, about all of it. I have tried to remember that and tried to think how I can help her overcome it. Overcome the huge feelings of defeat, overcome what seems like this huge challenge that you will never overcome, basically overcome your thoughts- because in life and in MS it’s not just a battle of the body but also a battle of the mind. Where do you begin? I say it doesn’t matter, you just have to throw everything you’ve got at it, don’t think big picture but instead think small picture and begin anywhere.

Have you ever had a challenge that seems so big you don’t know where to begin? Can you relate to thoughts of being overwhelmed like you will never improve? What do you think of my anti-gravity running “fat suit?”

I Need To Talk

Aside

I am having a hard time. There I said it. I am having a hard time. I don’t have a handle on this and feel like instead of getting better at handling Mom’s MS I am getting worse at it. To the outside world I tend to seem like I have it all together. I talk positively, I say all the right things, sure it’s tough, I am dealing with it, I am fine, etc etc.

Inside I am feeling differently.

Inside I am struggling. Inside I feel lonely. Inside I miss my Mom even though she is very much still here. For the past five years since I started working Mom and I have spent the majority of my lunch hours on the phone. Lunchtime chats is what we fondly referred to these conversations. I wandered around outside, talking about my morning, talking about life, just talking and then when my lunch hour was over I went back to work and Mom continued on with her day. These carefree conversations were something I never gave much thought but I could depend on them no matter what kind of day I was having- and in the course of starting new jobs, changing cities, managing challenging situations there were many moments where these conversations were what got me through the day.

But now things are different. Mom isn’t as sharp as she once was and I am not sure if that is the MS, the amount of medicine she is on or a combination of both. But regardless our conversations are not the same. There is a lot of repetition and a lot of simple topics that are not too complex. There are times where I just need some advice but I can’t get Mom to understand the story and in those moments I feel frustrated. There are times I call and Mom may be having a bad day or be in pain and in those moments I feel sad. There are times when we are having the exact same conversation we have already had before and in those moments I feel stressed.

When I get off the phone I am typically not in a better frame of mind than I was before and I need to shut it off and go back to work or go back to life….and that is hard. I feel like I am living a double life in my head- the person who has it all together / the daughter who feels like she has nothing together…and I am having a hard time managing it.

I need to come here and talk about this. I need to continue to talk about this. I have faith I’ll find a way to positively handle this new chapter in my journey with Mom’s MS…and I think a big part will be holding myself accountable about my true feelings here so I can begin to manage them.

How do you manage multiple emotions and situations going on in your life? How do you manage the tough parts while living the good parts? 

 

 

 

Change of Plans

I know it’s been awhile. A lot has happened. For those of you who follow my blog and for those of you who pop in every once in awhile here is a simple but long update:

Canceled Plans:
Last summer I began talking about a cruise my family was going to take. We were going to go on Royal Caribbean Cruise Line, we had booked accessible rooms, I had booked scooter rentals, I had spoken with American Airlines about special needs issues on the plane, everything was rolling on normally…but I was nervous. I kept wondering if we were taking on too much. Taking on too much with this vacation- to put it simply, Mom has lost the ability to walk. As we got closer and closer to the cruise departure day, departure day being next Friday June 7, I kept having this small voice inside wondering if it was too much…I would then quiet the voice by rationalizing my way out of it…then the voice would re-emerge…and I would quiet it again. But in the midst of this I was praying. Praying that if we weren’t supposed to go on this cruise it would be revealed to us and without that we would just keep moving ahead.

Last Saturday that decision was made. Our Grandpa (Papa) fell in the middle of the night in his house, broke his hip and to have a partial hip replacement. His doctor said he could not go on the cruise. This then set off a sort of chain reaction where Mom did not want to go, Dad could not go if Mom was staying behind and then for Husband, Sister K and me to still go did not seem right. It seemed like a different vacation and it would be sad to go thinking of all of us not together. I also could not stop thinking, we are supposed to cancel. We are being told we need to cancel. It’s too much. Obviously too much for Papa but silently too much for Mom.

I am not in any way saying this happened on purpose, but I do believe it gave us an answer we had all been fighting out of our heads for awhile – We are not supposed to go on the cruise. Luckily our travel agent had convinced us to get travel insurance. I am in the process of gathering invoices, payments, etc but we will submit them and be able to get our money back.

But the lesson in all of this and Mom’s MS has been very clear to me- I can no longer plan ahead a year in advance. No longer assume Mom will remain the exact same. A year ago Mom had just gotten out of the hospital and was going into a rehab facility. Our goal at that point was to get her back to walking on her old 4 wheeled walker ‘Pinky’ from the standard walker she was using. A year later our goal is simply to get her walking.

Understanding While Not Understanding MS
Seeing that part of MS has been difficult to me- difficult because part of me believes she could try harder and walk because people tell us all the time of stories of this happening. The other part of me does not know if that is how this works and not walking is just another step. Regardless it is difficult to see the added stress this has added to Dad. It worries me in many ways. The amount of effort being exerted, the lack of sleep to help Mom up multiple times in the night, the nonstop nature of his days- not even ending when he sleeps. It’s difficult.

Process Overload
As you can see it’s been a lot. A lot I am processing and this is the first time I am writing it all out. The cruise cancellation is very fresh..less than a week to be exact. The reality of not going mixed with the reality of the unpredictable nature and path of MS is all slowly coming into place.

A Quick Life Update on Me

  • Husband graduated with his MBA, was offered a job and we are moving to a new city- still in the same state, about 3 hours from home instead of the 1.5 I enjoy now. Sister K will continue to live here so this will be adjustment for us.
  • I recently got a job offer in our new city and am going to be the new Public Relations Manager for a nonprofit organization. I start in three weeks and I am very excited! Knowing how difficult job searching is and having gone through the difficulties of it every other time I have searched for jobs before, I feel incredibly fortunate and blessed.
  • Also Husband and I adopted a 6 year old cat named Chloe. She will probably make an appearance on here at some point- we are pretty obsessed with her 🙂

I thank you for continuing to read as I sort through Mom’s MS.

Have you ever had any vacations canceled? Do you have any thoughts on the path of MS? How have you ever all of a sudden had a big reminder that life really is day to day, especially with MS? 

The Reality of Needing Help

“When it gets bad enough he will ask for help.”

Those words were told to me awhile ago by a friend when I shared my concerns with Dad being spread too thin between working and caring for Mom full-time. But sometimes I believe God forces you to make a decision you have been putting off by making other parts of your life begin to spin and that is exactly what has happened to Dad the past few weeks.

Dad was recently promoted which is really exciting but it also means more demands at work. At the same time, Mom seems to be digressing. She is having a harder time moving around lately and her MS is demanding more from Dad. I have been worried about Dad for some time but like I said above, I realized at some point I had to stop voicing my concerns and realize it was not my place to demand Dad get help with caring for Mom. The relationship between Mom and me verses Mom and Dad is different. They are married. They are husband and wife and I believe Dad is trying to do everything he can to fulfill his vow to be there for Mom in sickness and in health. I can’t get in the middle and force him into making decisions he isn’t ready to make.

But Sunday Mom seemed to be struggling and Monday she woke up with excruciating pain in her leg. Dad needed to be at work. This has happened before but this time his work demands are greater and he realized it was the beginning of being unable to be in two places at once. He was stuck. He called the nurse who had come to our house to administer Mom’s steroid infusion. She had spoken with Dad awhile back about staff she has that will come out and assist around the house. The nurse came out to meet with him and she and Dad began to move forward with making arrangements for someone to come out to be with Mom during the day.

So when I spoke with Mom during lunch yesterday, her new home helper/nurse/assistant…for blog purposes I’ll call her Nurse B…Nurse B was at our house with Dad getting acquainted with everything. I tried to talk to Mom like everything was normal but she was tired and explaining she was frustrated because she preferred to be by herself.

Even after all the time I have spent trying to get Dad to make this decision, I have to admit it was strange to think Nurse B was there. She was there to take care of Mom. My mom who has always taken care of us needed someone to take care of her. This is reality now and it made me sad and full of a mix of emotions…a big one being acceptance that this is my family now. It’s just strange. It feels strange. And even though Mom needs this, I feel sorry for her. I can’t help but struggle that her independence has been taken away and I played a part in that. Even though Dad ultimately made the decision I agreed with him. I don’t know why but I’m struggling with that realization because secretly I never thought it would happen- I never really thought we’d need to bring someone in to help Dad; I thought Mom would get better; Dad would figure out some magical way to manage it better. I just didn’t think it would happen and it has now.

Have you ever dealt with getting help for a family member that maybe impacted their independence? Have you ever felt the guilt of feeling responsible for taking it away? Do you believe sometimes life may force you to make a difficult decision?

Pushing Through

I am having a tough time blogging lately. I am pushing through it though because I love this blog. I love writing and having a place to come share my thoughts about everything going on with Mom. But my thoughts lately are cloudy and they are tough. I feel overwhelmed but the challenges being presented before my family. I feel overwhelmed about how much there is to this story that I cannot fix. I am trying to accept these complex thoughts but it is hard. It is hard because they are not easy to accept and I am not sure if accepting them is the right thing to do. I feel like a lot of the time I am thinking myself into circles about everything…only to realize nothing is resolved and the only way to cope is to mentally move on to something else.

To put it bluntly, I feel tired of MS. Tired of the impact it is having on my family and Mom. Tired of the way it is seeping its way into our dynamic and forcing us to accomodate and find new ways to get on balance. I feel like we’ll never figure it out. A big part of me wants to give up but a bigger part of me knows that isn’t what you do. To that part of me I tell myself- this is your family. These are your people. These people make up the biggest blessings in your life. You have to focus on them. You have to focus on the love you feel for these members of your family and focus on your relationships. You have to cherish the good moments and really cherish the memories of those moments. You have to remember the bond Mom has with you. A bond that can’t be broken by a disease. A bond that makes Mom the only person you want to call when you are upset and a bond that in the same way tells Mom just from your tone of “hello” over the phone that you are upset. She knows you. She knew you before anyone else knew you.

It’s not easy and in fact I think it is getting more complicated. Life is throwing bigger curve balls at us. I am worrying more about my parents. I feel older. I feel less like a kid. I guess that was going to happen eventually but I also feel alone in the process. I don’t have anyone who can share this except Sister K. No one else understands that I am now thinking for both Mom and me- Trying to manage our family, keep up with buying people presents, rsvp’ing for events, planning events, but all making it look like Mom is still doing it. I have always been a planner and always been organized with life tasks like this so it’s not that far of a stretch but it doesn’t make it easier. In many ways perhaps God was preparing me to assume this role my entire life…and now that time is here. Do I mind, no. But does it make things very real, yes.

I am not sure where I am heading with this as it seems to be a bit of a rambling post. But I wanted you to know where I am at these days. I am still around. I am still blogging. But some days I can’t bring myself to think about MS and do it…and some days all I want is to have a blank white screen to ramble about MS. But thanks for sticking with me and continuing to read as I charter through. Maybe this is all part of it. The ebbs and flows of life and the ebbs and flows of MS. Like my blog says, I don’t have a manual and I am just navigating it the best way I know how.

Do you ever feel like you need to ramble? Have you every struggled with blogging about tough things? Have you struggled with ups and downs with a family member and a disease?

Wishing you a Happy Valentine’s Day!