Mom is on a lot of medications. I also know that cognitive issues can result because of MS. I go back and forth on whether Mom’s changes mentally are from MS or from medications. Dad seems to think medications. I think it is easier for him to think that way. I tend to think in the middle.
One thing that makes this tough this is the invention of a little thing called Facebook. Sometimes Mom will comment on people’s walls several times in an hour not realizing she already did that…or not realizing it is strange. It is difficult for me because Mom is the person who taught me my social cues, taught me how to behave and how to act and now I am watching her change in that manner.
Specifically yesterday I logged on to Facebook and saw she had commented on a family friend’s wall three times in less than an hour. It came up on my news feed so I can only imagine how many other people’s news feeds it came up on too. Normally I am good with ignoring these things but this time I wasn’t. I called home and Dad answered. I explained what had happened and he just responded by first defending Mom saying “I don’t think that is that big of a deal.” And then when I got further into it he said “look I just don’t care. If people want to think things let them think things. I am not going to go in there and tell your Mom something and embarrass her.” Which I get…yes. But still it bothered me. I think we are fighting several battles right now and one is in the court of public opinion of Mom and our family. I don’t like when people are around Mom and talk to her like they would if she was an elderly Grandmother. I don’t like when Mom’s friends talk to me about their own Moms who are in their 80s and compare my Mom to them. It all upsets me. So when I see things like this happen it frustrates me since it means this is just one more instance for people to see.
Maybe it is something I need to come to terms with…I can’t fix any of this or make it go away. I especially cannot control Mom. I can’t change people’s opinions. But it’s hard. And sometimes I snap. Sometimes I can’t make a joke of this situation and sometimes it bothers me. Last night was one of those instances.
How do you manage people’s opinions? Do you worry what other people think or are you how I aspire to be and don’t care? Does it bother you when people treat you or a loved one differently than they should be treated?
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?
This whole “My Mom has MS thing” is not easy. I know nobody ever said it would be but it is seriously not easy. It’s not easy to think about. It’s not easy to talk about. It’s not easy.
I have hesitated to come here and write these thoughts down. I think I have mentioned this before but many times the act of writing down my thoughts about Mom’s MS makes it more real. It was one thing when her MS was secured in a tight neat little box that I felt we as a family had some control over. It is very different now that I feel we have no control over and sometimes I feel like we can’t even get a grip on it.
First Mom couldn’t walk. Now Mom can’t stand. Her handwriting seems to be slipping. I know this because I always loved her handwriting. She sent me a package in the mail and just getting the package out of my mailbox was emotional upon seeing the handwriting that had addressed it to me. I didn’t recognize it. Much like I am having trouble recognizing Mom.
It all goes back to writing things down. In this case receiving this package was a written statement to me that Mom is different. Our conversations on the phone…the lunchtime chats I have been having with her practically everyday on my lunch hour for the past five years are different. They are full of lots of the same conversations we have already had, simple thoughts, simple topics, nothing too complex and they are quick. They too make me sad.
None of this is easy and coming here to share it isn’t easy either. But I am because I think it’s important. This is part of my journey in dealing with Mom’s MS and unfortunately a lot of that involves the path Mom’s MS is taking compared to others. So I can’t promise I can talk openly about this everyday like I used to because part of my coping involves talking about it and the other part involves not talking about these changes and the evolution of our family with it. Sister K told me the other day on the phone: “I think we just have to accept Mom the way she is now and realize we are never going back.” It was profound and a simple thought but it was true. We are never going back- we are only going forward and that forward is into a place of unknown.
Thanks for reading as always. It means so much to have my space that is mine where I can come and share my thoughts.
Maybe I am naive but I really thought finding a way to deal with Mom’s MS would get easier. She has had it for 3 1/2 years, I have seen the highs and lows firsthand and I thought at some point my mind and my heart would find a way to kick it into gear with coping mechanisms. For awhile I felt that was the case. Now I not only feel like I am struggling with coping, I am not even sure how I can cope.
I went home this past weekend with Husband to attend a wedding of a childhood family friend of ours. We only went for one night, Saturday to Sunday, but by the time I left I felt like I had been home for much longer. I was really struggling with Mom and where she is at right now. She is on some very strong medicines which I think are messing with her mind combined with increased physical difficulty over the past few months. But for some reason, even knowing all of this going into the weekend, it was rough for me.
I had trouble carrying on full conversations with Mom where she was fully present and interacting. I felt like as long as we were being silly or laughing things were fine but if we shifted the conversation to something more serious or stimulating she couldn’t contribute. I struggled with having Husband there through all of this. I felt like I was half hosting him at our house and half dealing with my emotions about Mom secretly. In a way maybe I was trying to mask certain things because I know they are there but having Husband notice them makes them more real. It was overwhelming and tough.
I got in the car with Husband to drive back and I cried. I just wanted to cry. I felt like the woman I had just spent the past 48 hours with, the woman who is Mom was not Mom. With all the changes that have occurred with Mom throughout the course of this, the one that I am struggling with the most is clearly the cognitive changes. I believe all of this may be part cognitive changes but also part medicine side effects. Regardless, it doesn’t change the situation I am left with- I am left with a Mom who isn’t quite herself. In a situation where communicating is one of the few things we have left and we are now struggling with that…I feel very helpless. I feel overwhelmingly sad. I feel like no one can understand. Even Dad and Sister K do not seem as affected or bothered by this as I do. For Dad in many ways he cannot allow this to effect him because he is Mom’s full-time care taker. For Sister K, we are different people who handle situations like this differently. At the end of the day though I am left feeling very alone and trying to find a way to cope. And I am coming up empty-handed.
Do you struggle more seeing family members lose physical or cognitive abilities? Do you believe we ever truly cope with a situation or do we learn to mask our emotions? Do you ever wonder why some people have a harder time coping with tough times like this than others?
It’s been a strange week of talking to Dad on the phone about MS, Mom, how we are dealing with it, how we are handling it. There is a lot of frustration, a lot of questions, a lot of sadness. I think the main question that keeps coming up is “Why?” Why is this happening to us? Why was our family chosen to deal with this? Why doesn’t Mom want to try harder to fight this? Why can’t Mom improve like other people we hear about who have MS? Why is this so hard on my parents? Why does Dad have to be dealing with this along with everything else? Why.
We want to know why because this journey we are on with MS is painful. It is painful to watch and painful to live. Today was painful. I called Mom as I usually do on my lunch break around noon and she answered. She sounded a little out of it. I tried carrying on a conversation with her but felt like I couldn’t get her to focus. She asked me a question or two but I knew she wasn’t really listening to my response. Twice I couldn’t even understand what she was saying because her words almost sounded slurred. She said she was laying down and it seemed like she was literally dozing off- so I got off the phone. The conversation hurt me. It hurt me because it shines a bright reality light into my eyes that Mom very much has MS and she is actually not getting better. It’s easier for me to not focus on MS when I can call Mom and we can chat somewhat normally…when she is having a good day. But today was not a good day and with that comes the reminder of the pain of this disease for all of us. Mom is changing. It is reality.
I called Sister K to tell her about this and Sister K told me she was sorry and that Mom was probably tired. She seemed a bit frustrated because she felt I was seeking more of a response from her…I honestly wasn’t. But when I got off the phone I was left wondering what did I want? Why had I called Sister K to share this with her? She can’t fix it and make it go away…did I secretly want her to? Or did I just want to tell someone what had happened because I felt sad. I didn’t feel angry; I wasn’t asking why me; I just felt sad.
It is one thing to talk to Dad about Mom’s decline but it is another to experience it. It feels even bigger to experience it all alone on the phone. I was surrounded by people walking on the streets, yet I felt all alone. I think the person I really wanted to talk to was Mom and I was painfully realizing in many ways, at that moment, she wasn’t there.
Have you ever been surrounded by people yet feel all alone? Have you ever called someone after something tough but not really understanding why you called them at all? Do you experience moments where the light of a reality you try to conquer is shined brightly in your face?
I believe deep down that when the going gets tough we all have two options- to give up or to fight even harder. You like to believe that when presented with a tough situation you would fight. But what do you do when it isn’t you? When the person you want to fight won’t fight? Do you continue fighting with them about fighting harder or begin to accept they may be done fighting?
I just worked through these thoughts on the phone with Dad. Mom has another doctor’s appointment tomorrow with her neurologist. Based on the last one, it is no wonder why these would now give us all reason to squirm. He’d like to talk to her doctor privately beforehand but isn’t sure he will be able to for legal reasons. He also thinks if things get uncomfortable again with the topics we force her to bring up with her doctor she will stop us in the room during her appointments. At which point it allows Mom to speak with the doctor about her reality which isn’t reality at all.
But as I sat listening to Dad, for the thousandth time about the exact same issues we continue having…for the first time I stopped him and really got my words together in a succinct way. I said I think we may be at a point where we have to stop. We can’t continue letting Mom’s MS and her lack of caring about it cast a shadow over our lives. Mom is lucky in ways she doesn’t realize. Lucky she has such a resilient family that when she pushes us we don’t turn away but continue loving her. Sister K and I continue going home to visit. We continue to be there. We continue to fight for our family. But the biggest person this impacts is Dad. He is the one there day in and day out. The one who is most hurt by Mom’s unwillingness to try harder or to care more. I think he believes he has failed her if he gives up. If he begins to accommodate her needs rather than continue to push her.
I am rambling and I am not sure what my point is here. But I do believe you have to meet people where they are at. I was told once that people speak two ways, with their actions and words, and how they speak with their actions is usually more honest than their words. So I have to sit back and look at Mom’s actions. Her complacency with being helpless. Her lack of initiative with anything that could improve her MS. I have to sit back and think that maybe there is an underlying message here and whether we like it or not, maybe it is a message we as a family need to begin to come to grips with and accept.
Have you every been in a situation where you wish someone close to you would fight harder than they do? Do you believe this is “acceptance” or “giving up?” Have you ever had a time where you have had to accept someone’s choices even though you didn’t want to? Do you believe people speak differently with their actions and words?
I love gloves. I notoriously have cold hands and gloves provide the ultimate in warmth. I wish you could wear them year round but it is only really acceptable to wear them in winter. But I was thinking today how gloves provide me the ultimate cover up, enabling my hands to stay warm and function. It got me thinking about how we cover up things in our own lives.
Dad called me today because he and Mom are going to meet with a therapist again tomorrow night. It was advised to Mom and Dad after her last doctor’s visit that they needed to see someone. The main reason is Mom is not admitting to herself or dealing with her MS diagnosis. They met with someone in December and will meet with the person again tomorrow night. I had been asking Dad if they had another appointment scheduled but he thought that with the holidays things seemed to be improving. But now in the second week of January it seems as though we still have the same issues, just a new year.
Dad mentioned Mom’s MS doesn’t seem to be improving and her mobility seems to be getting slower. It is also becoming a little more difficult for him to assist her. These are little things but little things that are big things. He asked if I had noticed anything over Christmas and I said honestly, I think Sister K and I are just turning our head the other way. The holidays were not an appropriate time to bring up this argument again but in many ways I think Sister K and my days of bringing up this argument are gone. I think we have done everything we can and now it is up to Mom.
Someone gave me some good advice once: She said people speak verbally and non-verbally and their non-verbal actions typically mean more than their verbal actions. Mom’s non-verbal actions are very honest and when I stop to think about and look at them they tell a very honest story. The avoidance, the lack of initiative, the negative attitude at times, the contentment with where things are- they tell a lot. A lot that I can’t really write about because I am still working it out in my mind. It’s a cover-up. A cover-up that allows Mom to stay warm and cozy within the life she wants without getting out in the cold and beginning to deal with things. It’s a cover-up that I am not sure any of us have any tools left to uncover. I think Mom may be the only one who can do it.
Do you ever cover things up or not deal with issues in your life? Do you think at a certain point you just can’t push someone to deal with things anymore? What is your favorite thing to wear to keep warm during winter?
I had trouble sleeping last night. I was lying in bed and commanding myself to go to sleep. Go to sleep. Go to sleep. Instead my mind swirled with worry. Swirled with uneasiness about the future. Swirled with imagined “what if” scenarios. None of the “what ifs” were ever good…all bad. All stressful. I felt a lot of anxiety. Then I did fall asleep and would wake up and something would trigger another anxious thought again. I still don’t know why last night caused this or what the root of the issue was…Was it just an isolated sleepless night of worrying or did it mean more than that?
But in the midst of it all I was trying to just lay there and calm myself into a relaxed state instead of the wide awake and stressful state my body felt like. I laid on my back, I put my hands on my stomach and pretended one of my hands was someone else as they held each other, and I envisioned Mom. I envisioned her saying “everything will be okay; everything will be okay.” As I did this, I seemed to move into a more relaxed state. Eventually my mind stopped racing and I drifted off to sleep.
It was a frustrating night to say the least…especially being a Sunday night. I am a little tired today but not as tired as I should be based on the low amounts of sleep I got last night. But the thing I found most interesting in all of it was that at 28, the thought of Mom, my Mom, being there with me calmed me down…in the same way it would have if I was a little kid. And in those moments when I was thinking of Mom, I wasn’t thinking of Mom who has MS, I was just thinking of Mom. This was something MS couldn’t impact because it can’t. It can’t impact the feeling I get from the comfort of feeling or envisioning the presence of my Mom.
Do you ever have trouble sleeping because your mind won’t stop racing? Does it ever happen to you more on a Sunday night with a looming new week ahead? What calms you down or relaxes you? How was your weekend?
I have a little bit of a routine when it comes to calling Mom. I do it everyday at lunch as I have pointed out and talked about before. Today I called her while I was walking to run an errand. She didn’t answer the first time I tried so I figured she was just a little farther from the phone. So then I tried Dad’s phone and he didn’t answer. I’ve been trying to call Dad periodically just to check on him and see how things are going.
Mom called back and we chatted for a little bit but then I needed to get off the phone. When I got done, I noticed I had a missed call from Dad, so I called him back. We talked while I walked back to work. I have to take advantage of this time because typically he is around Mom and isn’t free to discuss everything. I never called Mom back. I told her I was going to, but I didn’t. I had just a few minutes and was debating if I should call Mom quickly but then I had this awful thought- Mom is probably not even going to remember I told her I’d call her back…or if we get on the phone we aren’t going to have anything left to talk about…so I didn’t call her back. I didn’t think much of this. Normally I might have but today I just didn’t.
Fast forward to 3:00 today, my phone rings and it’s Mom. She said “I thought you were going to call me back? I wanted to hear about your trip and the wedding this weekend.” She didn’t sound upset but just friendly and cheery. I was able to talk to her a little bit at my desk but then I had to get back to work. I also immediately felt bad because in my eyes she was having a good day/a good moment and I missed it.
It’s tough. I feel bad because I usually do have those thoughts but I ignore them. I push them away and do what I know is right. Today though I listened to those thoughts and in listening to those thoughts I pushed aside Mom. Pushed her aside like she didn’t matter and she does. I also don’t think I realize how important our daily chats are to her. Sister K has told me this as well. She said you don’t know how much Mom looks forward to those conversations. Today I ignored that thought as well. I feel like I was a little selfish and that’s not how I want to act. I don’t want Mom’s MS to interfere with my relationship with Mom and today I let it win. Lesson learned. I now know what it feels like to let those thoughts win and I don’t like it. I’ll do better next time.
*I guess I felt I needed to come here and be honest- and confess these thoughts to someone. Thanks for being that someone.*
Have you ever had moments where you don’t realize the importance of your actions? Have you ever felt bad for something as simple as not making a phone call? Do you like to talk on the phone while you walk around?
Do you ever ride elevators? I do…everyday. It’s how I get in and out of my office. I have often thought of them as the connection between two worlds. I board the elevator en route to my “working self.” In the evening I board the elevator en route to my “real self.” But while I am in the elevator it’s just quiet and mindless time with myself as I transition and switch gears. This morning I really felt that transition, and in a way, I didn’t want it to end.
I called Dad’s cell phone this morning while I was driving to work just to see how everything was going. It was off so for the next 5 minutes I debated calling home- Dad was either still home getting ready for work or he was at work and in a meeting. So I called….it rang about 6 times, I nearly hung up figuring Mom was there but sleeping and then Dad answered. Dad got on the phone and said he was just sitting at the kitchen table praying for help with everything and I called…it was strange.
On Monday Mom’s doctor switched her spasm medication to Baclofen. Beginning yesterday, Mom and Dad started seeing real improvements with Mom’s walking and her muscle ability. Then last night Mom was sick and my parents had a tough night. Dad doesn’t think Mom ate enough yesterday and that mixed with an active day seems to make Mom’s systems go very out of whack. But regardless, it was a very tough night. I have had those nights before with Mom and they can be exhausting in ways you don’t even realize. To put a complicated experience simply, they are draining.
Dad knows he has some tough decisions to make regarding Mom. He has found a counselor and is going to approach the topic with Mom. Regardless of Mom’s decision, Dad said he needs to see someone. The person he found deals primarily with people diagnosed with diseases like MS and he comes to your house. We’ll see how it goes, but I don’t predict Mom will take this well. I am realizing though that Mom’s MS is impacting each of us differently. Dad, Sister K and I are each impacted by this and the two people whose experiences are the most similar are Sister K and me. While we can relate to Dad, we also cannot because this is his wife he is going through this with, not his Mom. Even though we are all in the same family, the relationship is different. The stress involved is different and the emotions are different.
I talked to Dad pretty much until I got to work and then I stood outside my building talking to him a little longer. I then walked inside and got into the elevator. I stood there with my head leaned back against the wall and just let my mind go numb. I told myself that when those doors opened the thoughts associated with Mom’s MS needed to move to the back of my mind and the positive, friendly and happy employee that I am needed to move to the front. When I leave work today I will shift my mind again. But this morning I was thankful for my quiet and alone time in the elevator. I was able to give myself a pep talk and give my mind a rest behind the doors of the elevator. It gave me a space to be completely alone as I moved both physically and mentally between places.
Do you ride elevators often? Have you ever seen an elevator as a transition place between two different places? Do you get a secret joy when the elevator goes the entire distance you need without stopping? Now for the fun one, have you ever gotten stuck in an elevator?? (I have…) Hope you have a great weekend!