Tag Archives: Multiple Sclerosis

Can You Keep A Secret?

Posted on by
2

Mom is coming home. Saturday to be exact. This is good. I am telling myself this is good. But it’s not without some worry. She is moving around but still having challenges getting in and out of bed. She isn’t moving around perfectly but better than she was. The doctors are hopeful if she continues on her phsyical therapy her walking will continue to improve. I listen to Dad say these things. I sound enthusiastic and optimistic. But secretly, I am nervous.

Dad was beginning to have issues taking care of Mom by himself at home before her relapse occurred. I guess I am worried she will return home and all the same problems will exist. My family will have just been put through the ringer for the past month yet will not see any major improvements. It will have been as if we went through all of this for nothing. These are my secret fears.

Dad, Sister K and I are already talking quietly about back up plans. For what we will do if the next week or two are a struggle. If Mom is not as self sufficient as she needs to be. If Dad can’t handle it all again. We may need to bring someone into our house to help. I know that is a reality but it is a tough one. It is also one that won’t happen overnight. It also isn’t something happening tomorrow. But it is sitting there, secretly in the back of my mind.

I feel like I am on a hamster wheel. A giant circle. I go round and round and everything goes back to the same thing. Take life one day at a time. A good friend of mine whose Mom passed away from ALS texted me yesterday and said “Day by day is the only way to do it.” I know deep down she is right.

But I struggle. How do I do it? Do I trick my mind? Shut off thoughts about the future. Shut off my plans. Live today and today only. It is tough. Really tough. I struggle with this everyday. I struggle because of another secret- I don’t really know how to live day by day.  

Have you heard of the expression taking life one day at a time? Do you put up a brave front but keep a list of secret worries? Is it just me or does anyone else not know how to take life one day at a time?

A Simple Break

Posted on by
Reply


Meet Sister K.

Today Sister K and I met up for “lunch.” I say “lunch” because this consisted of meeting for TCBY yogurt and then walking down the street for a McDonalds iced tea. But regardless it lifted my spirits. It perked me up. It always does. I was making fun of her in her backpack with umbrella and water bottle. So I snapped a picture, using Sister K’s iPhone. My poor blackberry photo quality is limited.

A simple lunch break. A simple pleasure. Right now life is a little upside down. But we can meet for a moment and do something simple. Simple and cheap. Sitting on a bench. She asked if I’d talked to Dad. I asked if she’d talked to Mom. We compared notes. We seem to do a lot of this lately. We talk to each of our parents separately. Then we compare notes. We give each other updates. Did Mom sound happy? Did Dad sound overwhelmed? How did Mom say the doctor went? How did Dad say the doctor went?

I told her I called Dad this morning. I told her I had started calling him in the mornings to check on him on my way to work. Not really sure why, but I am wondering if it will become a habit. Sister K told me I am turning into our “family manager.” In some ways I feel like I am. I feel like all of our roles are changing a bit. I have noticed changes in Sister K, noticed changes in Dad, even noticed changes in Mom. There is a subtle and quiet evolution going on within the walls of our family. Each of us picking up new responsibilities, settling into shifted roles, figuring out how we can help, etc.

One new thing I started doing this week is trying to help Dad from far away. I know I can’t be there physically to help him with everything but it occurred to me I could make phone calls and help with little administrative tasks. I made a phone call about getting Mom’s doctor to request her medical records, I followed up on some airline flights, I got a question answered from our house title company, I even helped Sister K fill out her W-2 form for her new job so Dad didn’t have to worry about it. I think people may look at me like I am crazy or think my family is helpless. This is not the case at all. These things make me feel useful. They make me feel like I am doing something. Like I am helping in some way. If I can’t be there physically at least I can help take some things off Dad’s plate right now so he has less to worry about besides Mom. The moments I feel the most crazy in my mind are the moments when I feel absolutely helpless. I am learning the best way for me to deal with this is to feel useful- no matter how large or small the task may seem.

Do you struggle when you feel like there is nothing you can do to help in a situation? Do you ever assist your family in administrative tasks that may seem odd to others? Do you enjoy frozen yogurt as much as Sister K and me?

Did I Ask For Your Advice?

Posted on by
Reply

Have you ever noticed that everyone has an opinion? They really do. Positive. Negative. Everyone has one. Some people keep them to themselves. But a lot of people do not. That’s fine, I tell myself. I understand. They are only worried. They are concerned. 

But then I stopped to think about it. Really stopped to think about it and it’s not fine. I don’t understand. I never just offer my opinions about how people are running their lives the way people do to my family. And I don’t understand. Do we have a sign that says we don’t have control of the situation? The situation being Mom’s MS. 

Well, you are right. We don’t have control. We get close to having control. Then we have a million curve balls thrown at us at once. We are currently trying desperately to regain control. Dad, Sister K, Mom and I. Each in our own way but as a family. We are doing the best we can with what we have been given. The tough part is that I don’t think people realize this nor care. They just want to issue judgment. Tell us what we should be doing. What we should be making Mom do. How Mom should think. This has gone on long before the past few weeks. This has gone on since Mom was diagnosed with MS.

“Your Mom should walk with a cane.” “Your Mom needs to work out more.” “Your Mom needs to lose weight.” “Your Mom is running your Dad down.” “Your Mom isn’t telling you everything going on.” “Your Mom is depressed.” And it goes on, and on, and on…

And all of a sudden it has occurred to me…This is just rude.   

Aside from your care and concern, I would never and I mean never make comments to your children about you like this. Dad would never make comments to other men about their wives like this. But people do it to us all the time. Constantly. We have started dreading get togethers. We cannot escape it. I can’t even come up with an appropriate response it’s so ridiculous. Do I say thank you and chime in with my thoughts as I have been doing? {I think that may be wrong} Do I say something like we are doing the best we can? {That may be better} Do I say what I really want to and reply could you please keep your opinions to yourself because they are rude?

I was brought up with good manners. Sometimes I feel like it is one of my downfalls. Sister K and I say what we are supposed to say, we do what we are supposed to do, even when others don’t return the courtesy. But Mom’s MS is conflicting with these good manners. I am sure people mean well, they don’t know what else to say, they are only trying to be there for us. But I am tired. Exhausted by the comments. I am 28. Sister K is 25. You are much older than us. Maybe that is why you feel you have a license to comment. Maybe you secretly enjoy watching my family deal with a hurdle. Maybe you just want the juicy gossip. Maybe you legitimately care. I do not know but I also no longer care. If you really had any clue how hard this is on us you would put yourself in my shoes for a minute before speaking. How does it feel to be watching your Mom’s ability to walk deteriorate while your other friends are at the mall with their Moms? How does it feel to have your entire family’s world turned upside down? How does it feel to have no control over your Mom’s health, no straight path to getting better, nothing except trial and error- but don’t trial and error too long or you lose your window to improve? Do you think your comments help my stress about this? Do you think you make me feel any better with your comments? Oh yes, you dealt with something similar with your Mom when she was in her 80s. My mom is 59. Yet again, not the same.

Please stop giving Dad, Sister K and I advice. Let us deal with this ourselves. You have no idea how hard this is on us. You don’t understand. We didn’t ask for your advice so please don’t give it.

Do you ever have issues with the way people try to offer advice? Why do people feel entitled to offer advice when it wasn’t asked for? Am I being too hard on the world? Any advice on how you would respond to these comments?

We’re Gonna Dance

Posted on by
Reply

This past Saturday provided a small but much needed “life break.” We had a wedding to attend for D, the daughter of one of Mom’s college friends. Mom’s college friends are her best friends and these get togethers are always ridiculous and full of laughter. They all have kids around the same age so needless to say there have been a lot of weddings the past few years between everyone’s kids. They are always fun and we always look forward to these occasions.

But this wedding weekend felt a bit different because of everything that had gone on the past 2 weeks. My family was tired. We were nervous. A Saturday day trip brought a lot of unknowns. I wasn’t sure how everything would work with Mom. Sister K kept telling me I shouldn’t worry about it, I just needed to let it come. She said if I worried I would work myself up before anything even happens. In hindsight she was right. I shouldn’t have been so worried about it, but I still was. 

With the rules of Mom’s rehab facility she can leave during the day after PT/OTbut has to be back by midnight. D’s wedding was taking place here, where Sister K and I live. What was going to be a fun weekend trip became a day trip. The original plan changed. With Sister K’s help, Mom planned a big lunch for everyone at a restaurant in the afternoon so we could all spend time together before the wedding. Mom is the planner of her group. That is where I get it from.

Mom and Dad arrived in town, we met everone for lunch, Mom went and rested, then we met back up with everyone at the church for the wedding and reception that evening. As usual we were late for lunch, barely on time for the wedding. I now say that with a smile on my face. A smile because we are doing the best we can and I am learning to roll with that. If we are only 30 minutes late then we have succeeded. We may be late but we do make it and that is all that matters. Mom used her wheelchair Saturday and we took turns pushing her around. Her friends were so excited to see her and you could feel the energy change when she showed up. They all took turns sitting next to her at the reception, sharing stories, gossiping and laughing. Dad loved that they kept sitting in his seat to talk to her. This night was important for Mom in more ways than we know. It revitalized her. She got dressed up. She did her hair and put on make up. She had on her nice jewelry. She looked very pretty. I was so proud. I knew she felt good. Look good, feel good. Our whole family needed it. 

There was a moment during the reception though when Maroon 5 Moves Like Jagger came on. Sister K and I were already on the dance floor. Sister K knows how much everyone in our small family loves this song (even though she does not) and proclaimed, “We gotta go get Dad!” So we ran over to the table, interrupted Dad’s conversation and made him come out on the dance floor with us. Sidenote regarding my family: This isn’t exactly an odd thing to happen. We are a dancing family. Dad and I danced to Abba’s Dancing Queen at my wedding as our Father/Daughter dance. We love to dance. In fact Sister K and I had already decided ahead of time the best way to avoid having to talk to other people about Mom was to never leave the dance floor. We had decided “We’re going to avoid everything and we’re just going to dance.”

But this moment of dancing and smiling felt different. I had an overwhelming feeling of admiration for my family.  Here were three people who have had their lives turned upside down in the past 2 weeks. And it’s not over. Things will still continue to be a rollercoaster. But in that moment we were full of smiles. Holding hands with Dad on the dance floor. Acting goofy. Full of life.  

This weekend was not without its stressful moments. We haven’t been given a magic wand to make life stress free just yet. There was the trickiness of moving Mom around in her wheelchair, getting her in and out of the car, trying to appear that everything was seamless to others, making sure Mom was feeling comfortable, etc. But even with the tiny moments of stress, the memory and the feelings associated with Dad out on the dance floor felt like a small reward for the tough moments of the past few weeks. It also reminded me that my family is tough. We are strong.

I believe only the strongest families can handle MS. I think everyone needs to remind themselves of that when things get tough. MS families each have their own qualities that bond them together. MS doesn’t break them but makes them stronger. Everyone pulls this strength from their own unique family personality. In their own ways everyday. For us, some days it is from laughter. Some days it is from random comments. But on Saturday night it was from dancing. I looked at Dad and Sister K and I said we are going to make it. We are going to get through this.

And we will.

How does your family cope with tough moments? Do you find strength in things as simple as laughter or dancing? Do you love a good wedding reception dance floor as much as I do? Have you ever caught a bouquet? Sister K actually tried instead of hiding in the back for the first time ever, and she failed miserably…  

Warning: I Am Angry

Posted on by
Reply

Since I returned Monday I have noticed something. I am a little more short fused. I am letting my negative thoughts consume my mind. My fights are escalating. I am losing my cool easier.

I am angry.

I am. I am admitting it right here for the first time to myself. It has occurred to me maybe I am going through the “Stages of Grief” again. As if I haven’t already gone through them or continue to go through them with Mom’s MS. That makes me angry too. The fact that I feel like just as I feel I have reached “Acceptance” I am back behind in one of the other stages again. I am angry.

Tuesday night Sister K and I got into a big fight. Sure we fight from time to time but typically they are silly and one of us can snap the other out of it pretty quickly. We are fighting experts. I have to say I have been fighting with her longer than anyone else in the world. That’s the beauty of having a sister who is also your best friend. We fight we make up. The cycle continues. But Tuesday night I felt differently. I felt full of a different kind of anger and it wasn’t even directed at Sister K. I was just mad. And she was mad too. 

Then come Wednesday night I got into a fight with Husband on the phone. We still haven’t received our tax return we filed in March which is becoming a source of stress in our lives. With him being in school and me supporting us this is probably the one time in our entire lives where we really need the money. After a frustrating morning on the phone with the IRS they said there had been an error processing it, it was corrected April 15 and now it was being processed. We should be receiving it in 4-6 weeks which would have been last week. Husband is really mad about this as he should be. I just figure we can’t do anything about it. Literally we can’t do anything. There is no one you complain to about the IRS and it is pointless anger. We are just going to have to live until we get it. But the point is, we got into a huge fight.

Then yesterday at work I received a note from someone asking about Mom that rubbed me the wrong way. Implying Mom wasn’t telling her the truth. I was so mad. Then I got mad about some of the people we have in our lives who are nowhere to be seen. Then last night I got mad at Husband again on the phone. He told me I can’t expect that much out of people when they probably aren’t even sure what they should do themselves. This made me mad. As you can see, I am angry. But I think I am misdirecting all of my anger. It’s all coming out at all the wrong people and issues. 

Why am I angry? Or who am I angry at? I don’t know. I am mad at MS. I am mad that Mom went into the hospital for a week, is in rehab now but I am not sure she is having any major improvements. I am mad because I am not sure whose fault that is- MS or Mom? I am mad that this is all consuming in our family. I am mad because other families don’t have these issues with their Mom. I am mad that Mom had to be the one to get this. I am mad because I don’t think Mom is strong enough mentally and enough of a fighter to handle this. I am mad because my family needs a break. I am mad because there is no cure. There is no end in sight to this. I am mad because I am trying to take things one day at a time and my mind won’t let me. I am mad that all of this is so hard on Dad. I am mad that Dad is having to go through all of this. I am mad at the unknown of all of this. I am mad that Mom really may not improve very much while she is at rehab. I am mad because I am trying so hard to be optimistic about Mom’s health and struggling badly right now. I am mad because the reality of home health care is a little scarier than just the idea of it. I am mad because I am scared Mom is changing. I am mad because I see my relationship with Mom changing. I am mad because I feel like MS is slowly taking away who she is, especially the part of her that makes her Mom. I am mad because I want it to all go away. 

I want it to all go away. And it won’t. It’s never going away. Things are never going back to the way they were. My acceptance of this will come. I know it will. But right now I am angry.

To put it bluntly, this sucks.

The Irky Reality of Friends

Posted on by
Reply

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

Posted on by
Reply

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.

Posted on by
Reply

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.

It’s Happening.

Posted on by
Reply

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

Posted on by
Reply

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.