The Irky Reality of Friends

As I get older I am realizing how important certain friendships are in my life. At the same time I am also becoming more disappointed by certain friendships in my life. Growing up and friendships are a double edged sword.

I am not a person who has a million friends. I have a few close friends. But I would do anything for them. My friends are like my family. I know I can call on them when I need something and expect them to call on me when they need something. This is both good and bad. These are my friendship expectations. I have a problem with expectations as I admitted yesterday. When these expectations aren’t met I not only become upset but I feel deeply hurt. It takes me awhile to recover from it. To put it behind me. I am not saying this is a healthy approach. I am trying to actually work on this approach. Trying to allow myself to “let things go” easier than I do. But it’s hard. The “letting go”- that is a post for another day.

The point though is that I have been very private lately about Mom’s health. Especially with everything that began happening last week. At first I really didn’t want to tell anyone. I think in telling people other than Sister K, Dad, and Husband it became more real. I had to explain what was going on at a time when we didn’t know what was going on. I had to verbalize it. Then came Wednesday and I thought, you know I should probably update my friends on this. If they were in my shoes I would want to know if something had happened to one of their Moms. I’ll just send a few emails and then won’t think much of it. What I didn’t expect though is how good it would feel to read their responses. It was like a big email hug from friends who live anywhere from 2 hours away to hundreds of miles away. I read these emails and I let myself feel. It felt good to feel this love.

I am not a person who the second Mom went into the hospital I was updating my facebook status. That is not how I wanted to handle this. I wanted to handle it in my own way. I am dealing with something new to me and wanted to deal with it privately without a lot of outside attention. But I am also realizing it is nice to have support from other people outside of my family.

There is also a double edge to this. There are also the people who I thought would be there and be supportive that don’t step up. That part hurts. I think my mind tends to focus more on the half empty part. But the point is I need to find a way to block those thoughts out. I don’t need to think about them. I need to remember that. I need to stop the negative thoughts. I have so much going on in my life that if you are going to bring negativity to my mind I will block you out. 

Simply stated, I don’t have time for negative. In reality no one should put up with negative thoughts or negative people in their life. It’s not worth it. But it’s especially not worth it in a time of crisis. It is in a time of crisis when you realize who those true friends really are. The ones who make you laugh, the ones who pray for you, the ones who say let me know what I can do, the ones who you can ask to send your Mom cards. Those are my friends. I need to focus more on these people. In the end these friends are the only ones that matter. It’s these friends who I can lean on and these friends who are going to rally behind me, support me, and get me through this.

Have you ever faced a crisis and realized the love and support you do have from your friends? Have you ever felt disappointed by a friend? Do you ever struggle with keeping the negative thoughts out?

Baby Step Expectations

I am having a fight in my mind. A fight with expectations. I have noticed in the past year that I have trouble with expectations. I expect people to treat me the way I would treat them. I expect life to go a certain way because I obeyed the rules. The problem is that is not how life works. And now I am having a fight with expectations for Mom’s health. In the simplest definition, I have been taught that when you are sick you go to the hospital. But you go there to get better. Once you are better you go home. That is an expectation I have of how a visit to the hospital is supposed to work.

This time though is different.  Mom was in the hospital. She did go there to get better.  But today I realized something. I think in some weird way I thought this hospital visit was going to cure her MS or make her greatly improve. Then that thought shifted. It became about the rehab facility. Mom will go to rehab for a few weeks and and she will be walking out of there greatly improved. The problem with these thoughts is that’s not how this is going to work.

I know Mom is going to improve. She is improving more and more everyday. But these are very little improvements. They are big improvements but little at the same time. She is walking around with her walker little by little. She is doing physical therapy and doing what she can do. From where I sat writing this a week ago, these are major improvements.

The problem though is in my mind. I think I almost feel disappointed. Then I feel awful admitting that I feel disappointed because I should feel thankful for how far we’ve come.  And I do feel thankful. But I still feel disappointed because I thought Mom would immediately just bounce back. Sure she’d still need her walker but she’d be moving much faster. She’d start physical therapy and her mobility would improve to where she was at the onset of the diease. She’d be “better.”

I am trying to remind myself that is not how this is going to work. This is not how MS works.  MS is not going to magically leave our lives. Mom is not going to be magically cured. Mom’s recovery is going to be a process filled with baby steps. Literally and figuratively. 

I feel a bit like I am on an emotional rollercoaster. Monday night driving back I was so happy and thankful that Mom was settled in a better place. But I think these were tricky thoughts to have. I think deep down I thought she’d be automatically recovering too. Today I am settling into the reality that this is not the case. It’s going to be a slow process. I am fighting my mind’s natural inclination to slip into a funk. I am consciously making myself remain hopful for the baby step improvements. I am telling myself if you take enough baby steps you will see a big step. This is yet another reminder that I need to be patient. Learn to take life one day at a time.

Do you have trouble taking life one day at at a time? Do you think it’s hard when you realize sometimes a visit to the hospital is not as simple as just being sick and getting better? Have you ever had trouble with expectations?

Exhausted.

I am exhausted.

Physically exhausted. Emotionally exhausted. Every level of exhaustion you could be I feel it. The past 4 days since I last posted have been a rollercoaster. Highs and lows. Good and bad. I have lots of thoughts. Thoughts that are going to be evolving everyday. It’s been a lot. A lot to experience without a lot of sleep.

It was a strange Memorial Day weekend. It did not involve boats but involved wheelchairs. It did not involve fun drinks but involved hospital food. It involved staying up all night but not by choice. It was not relaxing but stressful.

My family moved Mom to a rehabilitation facility on Friday. I stayed with her every night at this facility. Dad and Grandpa came to visit often. We were not very happy with the place but also did not think much of it. Monday morning I realized enough was enough at this place. I told Dad we couldn’t leave her there because the care was so poor quality. I was worried that when I left I wasn’t sure how everything would work when she was by herself.  No one was friendly. Everything seemed disorganized. The food was awful. No one was helfpul. The decor was depressing. The walls were brown and green. The furniture was old. I kept waiting until Monday. Hoping that this was just the result of a holiday weekend staff. On Monday it would get better. Well Monday came and nothing improved. In fact it got worse. I told Dad that she needed to be moved. This began a stressful day of phone calls, Dad touring other facilities, waiting for insurance approval, finding out if if the other place could accept her.  By Monday afternoon at 4pm she was being moved to a different facility. Last night at 9:30pm she was finally settled in and I finally began my hour and a half drive back here. 

I was exhausted but felt good. I felt much better saying good bye to her than if I had at the other place.  Dad stayed with her last night and will again tonight. Sister K will head down and stay the rest of the week. Mom has come a long way since just a week ago. She is up and moving around. Not perfectly but is able to walk on her walker. Due to the amount of steroids she was on and possibly other factors her legs and ankles are very swollen. She keeps saying she feels like a marshmallow man. That has been the next hurdle to cross. This limits what she can do in therapy. I have learned what compression socks and water pills are now. I am hoping they will miraculously begin to go down. They just have to. We can’t take anymore setbacks. I can’t mentally handle them. So I am staying hopeful. The swelling will go down. She will get a lot out of phsyical therapy. And she will leave there more mobile than she was before this began.

I have many more thoughts. They are swirling around. But my exhaustion is preventing me from keeping them straight. I do know I learned a lot this weekend. I have mastered how to operate a hospital bed. I have learned how to navigate a hospital with nurses. I have learned all about pain medicine. I have also learned how to function on little sleep- sometimes I was successful and sometimes I was a disaster. Most importantly though I have learned how to find the positive in the little, sweet moments with Mom. How much a kiss on the cheek, an “I love you” or a smile will perk someone up as they lay in a hospital bed scared. I learned that as family you are each other’s greatest advocate. I also felt a shift in my role in our Mother/Daughter relationship. I took care of Mom the past 6 days. I stayed with her so she wasn’t scared. I fought for her. In a way these are things she has been doing for me my entire life. It was my turn to do them for her. I was exhausted but still found energy. It was love that kept me going. The love I have for Mom and the love I know she has for me. I learned there is nothing more powerful.

Forgetful Me

I am sitting in a hospital room typing on Dad’s iPad. Why am I doing a blogpost on an iPad when I had my computer, Husband’s iPad and my new kindle all packed and ready to go? Because I literally left our apartment without the bag that contained them. As I was halfway home I had a sneaky suspicion I might have forgotten it, pulled off at a gas station, realized I had and started crying. I called Dad. I couldn’t believe I had done this. I don’t do stuff like this. This is actually the second time this week I’ve done this. On Monday I was leaving a bible study and got home before realizing I had forgotten my bag there. More forgetting.

He told me not to worry about it. He’d loan me his iPad. It’d be fine and we’d figure it out. I was crying. Essentially crying over forgotten electronic devices. What was wrong with me? Why had I forgotten these things and why was I now crying driving down the road? He said we are all under extreme stress right now. A stress level that I don’t think we realize. He was right. He is right. It is a stress I have never felt before. Not a stress of how am I going to get everything done, work projects, deadlines. This is life stress. This is life.

So today I am sitting in a hospital room with Mom. It’s my turn to take care of her. Our family has bonded together in ways I cannot put into words. Bonded more than I ever thought we could. Sister K and I have spent the last week making decisions, making choices, doing what we need to do for our family right now. To support Mom. To support Dad.

Mom still has a ways to go. It looks like tomorrow she will be moving to a rehabilitation center temporarily for a week and then we will take it from there. I am working on taking all of this one day at a time. This is hard. It goes against who I am. I am a planner and I am having to fight my mind’s desire to plan. Because if I look at the past week Mom has made small but big improvements everyday. One day at a time.

I apologize for any weird formatting, misspellings, etc. IPad blogging is harder than it looks!

Messy Post, Messy Mind

My head feels a bit all over the place. Dad is finally back from DC and accidentally called me last night around 11pm insted of Sister K. It was nice to hear from him. It honestly felt good to know he was back, even though he really wasn’t that far away.  I told him I am glad you’re back.  This has been a traumatic week.  He said I think this has been the toughest week this family has ever had to go through. I think I knew that deep inside but hadn’t thought of it that way.  For some reason hearing it verbalized from Dad meant more. Dads aren’t dramatic. They don’t make things a bigger deal than they are. If Dad says it has been a tough week it means it really has been a tough week.

Mom was able to walk to the hall last night. This is a really BIG step. Sister K said she is pretty much dragging her feet to move but she did move. I am heading there for the next few days. I am a bit nervous. I don’t want to get emotional about this. I feel some anxiety about this inside. For a lot of different reasons that I can’t put completely into words. I just keep thinking this is Mom. My Mom. They are most likely moving her to a rehabilitation facility when she is released from the hospital. That’s another tough one. Mom won’t be going home but going somewhere else. Temporarily. But still, Mom is supposed to be at home. That’s where she is always supposed to be. 

This post is a bit messy but that is how my mind feels right now. A bit messy. I have honestly felt like a bit of a zombie. On the outside everything is fine. I am still friendly me. Chatting about life. Nothing is wrong. On the inside I feel like a mess. My head is filled with scary thoughts. Everything is wrong. Even today as I have told a few people I will be out the next 2 days they reply, “Have a great weekend,” “Enjoy your time off.” I smile and enthusiastically say thanks. Inside I think how opposite my time off will be.  I’ve only told a few people like my manager and boss what is going on- people that need to know. Other than that I don’t really want to talk about it. I don’t want any get well cards or people asking how Mom is doing because I can’t handle it. I am barely handling this myself.

Thank you for reading my messy post. For being here this week reading my words. It means a lot.

It’s Happening.

Sister K is 25. She is an adult. She is not so little anymore. But to me, the big sister, she is still my little sister. But for the past day she has been Mom’s warrior at the hospital. I have had to come back to work, Dad had to go to DC for one night last night so Sister K has been holding down the hospital room with Mom. Managing what doctor’s are saying, making sure things are getting done, and being a bit out of her comfort zone at times. Last night though she stepped over the comfort zone line and the hospital better watch out because I don’t think she is going back. 

At about 1:30 am I woke up to the sound of a few text messages. Dad didn’t answer his cell phone so Sister K was seeking my advice.  

Sister K: In case you’re awake, have a question- Mom’s about to do MRI and we were just told it may take 3 hrs. She said I don’t need to go down and go in with her but I feel bad.

Dad usually goes in and sits with Mom, holding her hand during her MRIs. After a few quick minutes of texting about this she called me. She was irritated. A nurse had just come in to tell her that they may delay Mom’s MRI. The doctor had told Mom at 5pm he wanted her to have the MRI done and now at 1:30am it was finally her turn and they were wanting to delay it more. Ridiculous. I sat on the phone with her encouraging her. Telling her she could handle this. Be firm but they need to know Mom needs this MRI.  The rude nurse told her things like “the hospital is short staffed to get your Mom down there, why wasn’t this already done, etc.”  All good questions/issues except as Dad likes to say at times “that’s not my problem, fix it.”  I sat there on the phone as I heard the nurse in there. I couldn’t make out what she was saying but it was a rude, know it all voice. There was a scuttle of commotion. She made another comment about the MRI and that’s when Sister K showed this nurse she wasn’t just some little sister hanging out with her Mom.  Sister K very politely, yet very firmly said: “Well, it’s happening. Mom has lesions on her brain that the doctor wants to look at to determine the course of treatment and what is going on. This was ordered at 5pm today. It’s happening”

And they backed down.  I sat there on the phone with her. Encouraging her as she spoke. Reassuring her.  You’re doing great. Don’t second guess. Stay strong.  You’re doing really well. I’m so proud of you. As the big sister I was holding her hand as best as I could through that phone.

They got Mom situated and wheeled her down. We hung up the phone. She then called me back once Mom was in the MRI and she was heading back to the hospital room. By this time it was about 2:30am. I told her I was so proud of her. Thanks to her Mom was getting the MRI. She had really advocated for Mom when she needed it most. We talked for a few minutes and then both went to sleep.

Or at least I thought I could sleep. I layed there in bed just thinking about everything going on right now. My mind was racing with thoughts. Scared thoughts. Sad thoughts. I also just felt sorry for Mom and everything she is going through. I don’t think I slept much. There are too many unknowns right now and too many of them are scary. I am trying to manage my mind and not let it “go there.” But hearing the commotion of the hospital room, being on the phone while all this was going on, it made it real again. As if all of this isn’t real enough. It felt more real. Living in the real is scary right now. Life, it’s happening.

It’s a Corner Built for Two

All I want to do today is crawl into a corner.  That’s what sister K texted me this morning as I was getting ready for work.

I responded: Can I be in the corner too? 

She texted: Of course. It’s a corner built for two.

This weekend has been traumatic. I am still processing it. I realize to a lot of people what I write may not sound traumatic but to me this was a really big step in the wrong direction with Mom’s MS. It was a scary step. In some ways I feel like I had figured out how to deal with Mom’s MS. I had it in a nice box, tucked away and I was learning to deal with it and manage it. Then this weekend happened. I feel the like the box lid is off and there are things just pouring out. Faster than I can process them. Faster than I can think about them.

Mom had been having trouble last week with shooting pain in her leg. By Friday she had been diagnosed with what we thought was a herniated disc. Saturday and Sunday though she was just growing progressively worse.  No longer in pain because she was on such strong pain medications, but on Saturday she had lost the use of her left leg.  We thought this was related to the herniated disc. But then on Sunday she lost the use of her right leg. Dad started making decisions. Fast ones. Phone calls. Initially he pulled me aside to tell me he was thinking Mom may need to move into a rehabilitation center temporarily because someone needs to be working with her legs. He said given that he had pratically been up all night Saturday (in addition to the other nights prior with little sleep), he couldn’t continue to provide the level of care she needed right now. This was becoming an issue of quality of life for her. I watched as Mom just sat in her wheelchair sleeping with her head slunched over. It was sad. The only word I can use to describe it. Sad.

I always said I would be strong. I could be strong. He told me this and I started crying. This all of a sudden was becoming real. Facing the reality of what was going on. He then made a few more phone calls. Her doctor was concerned because she had lost the use of her right leg. That may be the MS and unrelated to the disc. Her body may be having an MS flare up. He wanted the MRI done asap.

While all this was going on Sister K was driving home. I was updating her on the phone. We were both scared, shocked, and leaning on each other. I needed her there. I didn’t realize how much I needed her there until she walked in the door. She got it. Without saying a word but just giving me a hug she understood everything I was feeling.

Dad called an ambulance company who came to get Mom. No sirens, no flashing lights but she needed to be taken in on a stretcher. She was essentially paralyzed. Dad told me to come back here. Sister K would stay. He said there was literally nothing I could do at this point. As annoying as it was, he was right. 

The MRI revealed Mom doesn’t have a herniated disc. Everything was normal. Sister K texted me the update this morning. The doctors didn’t read the MRI until about 1am. This wasn’t good. This was all MS. I tried to fight the tears and the panic. This is when Sister K decided she wanted to move to a corner.  And I wanted to go too.

Later this morning Dad called. He said Mom is having an MS flare up and they have started her on a steroid IV. He said she has to stay in the hospital 72 hours and then they are likely going to transport her to a rehabilitation facility. Luckily it is one that is affiliated with the one she goes to. She will see familiar faces. Maybe it won’t be so hard.

For now though she is in the hospital. Sister K is with her. I talked to them on speakerphone at lunch. Mom seemed in good spirits. She was cracking jokes. Sister K said every once in awhile she says something wacky or just falls asleep.  That’s where we are now physically.

But mentally. Mentally I am all over the place. I am scared. I couldn’t stop crying yesterday. I was trying to keep my mind in a good place and not let it drift to the world of the “what ifs” and “unknowns.” But it’s hard. I just want Mom back. I want her back mentally. It was so depressing to see the state she was in this weekend. To watch her debilitate like that. It was cruel. I just went through this with my Grandmother who passed away from Alzheimer’s in 2010. But that was different. I don’t know why. But then again I do. That was my Grandmother.  This is my Mom. It’s just a lot. I am even getting teary eyed writing this. It’s hard. And it’s sad.

I want to thank you for walking this journey with me. I had many thoughts yesterday that I knew somehow I wasn’t alone. I had those thoughts because of this blog. So thank you for being in the back of mind as my support team.