I always knew MS would cause plans to change and to some extent I have experienced it. Running late to events, changing “dinner out” to “dinner in,” canceling a planned outing….but I have never experienced it when it involves plans with other people outside of my family.
A few weeks ago Husband and I went home for the weekend to attend a wedding with Mom and Dad. Sister K was unable to make it so Husband and I were going to drive with my parents on Saturday. The trip from home was about 2 1/2 hours up and 2 1/2 hours back to the city the wedding was going to be held. Initially we were thinking of staying overnight but Dad had plans to go out of town for work the following day so that didn’t work out.
That morning I had a feeling Mom might be struggling. She had just finished her steroid infusion and seemed to be moving slow. But after a bit of an argument with Dad about if we should go at all, he told me “this is how we roll with MS and if we have to come back we’ll come back.” I don’t think either of us really thought that statement would come true just a few hours later.
About an hour into our drive Mom needed to use the restroom so we pulled off at a gas station. I helped get Mom into the restroom and for the next hour I was in and out with Mom. That’s as far as I’ll go into those details. The point though is there I was in a black dress, black tights..pretty much dressed for a wedding helping Mom in and out of a restroom stall repeatedly. It was exhausting. It was draining. I had no mental capacity to think of what other people may be thinking. I had no extra mental space. Everytime I thought we were done, we weren’t. Husband and Dad hung out next door in a gift shop and even though I felt bad for leaving Husband in this predicament, I also realized I had no choice. My priority was to Mom in this moment.
At a certain point Dad decided, we can’t continue driving and make it to this wedding. Mom was upset but understood. This was her friend’s daughter getting married and our old next door neighbors. I texted one of the kids to tell them Mom was sick and we wouldn’t be coming. We got in the car and drove an hour back home.
It was a strange feeling having to text message someone to tell them Mom was sick and we wouldn’t be able to make it. I felt in many ways like this private world I like to shield the ugly parts of MS was being exposed to someone else. I also couldn’t believe that for the first time our plans were really getting flipped on their head…just like everyone had been telling me would happen eventually. This is what they meant. Getting all dressed up for a wedding only to spend your afternoon at a gas station. Getting home and thinking what was the point of that? The emotional exhaustion that comes from going through that experience. The thoughts that circulate through your mind. It’s a lot.
I know this is most likely going to happen more often and has probably already happened to many of you, but it was my first time to “get it.” To in many ways really see where we are at with all of this and it was a hard realization. Maybe these experiences will get easier and maybe they won’t…but it’s very humbling to have to expose these tough moments to not only close friends but also to all of you. At the same time I think it’s important because it is helping me to not be ashamed. This is who we are now and these things can happen. Our family really is changing and evolving and these experiences are all playing a part in the evolution of who we are becoming.
Have you ever had plans “derailed” by MS? Have you ever struggled having to admit the truth to friends? Do you struggle with thinking what others are thinking about you?
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?
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?
I worry about Dad. This is nothing new. I worry he is taking on too much between his responsibilities at work, his responsibilities with Mom, his responsibilities within our family, a lot of responsibilities that don’t leave a lot of time for himself.
I have had quite a few conversations with him about this. Conversations where he admits it’s tough taking care of everything for Mom and how he never has any time for himself. I know it’s not my responsibility to make sure he gets time for himself. I know I can’t control this situation. I also know that it is Dad’s life. He has to be the one to institute the changes. To make time for himself a priority. To take on less. I can’t do these things for him. But I tend to blame Mom. I get angry and blame Mom for not getting it. For not seeing everything he does and still making him take on more. Little things like picking up shower invitations because she can’t drive…grocery shopping…dropping things off at someone’s house…but that’s what these things are…they are little things. Little things that add up and become big things.
Mom and Dad have been going to church at a local hospital on Sundays instead of our usual church because it is easier for them to get in/out of and easier to make the service. The problem though is there are two times, one at 1:30pm and one at 3:30pm. Well yesterday they missed the 1:30 so they had to go at 3:30. So by the time they are out of there it is 4:00 at the earliest and because Mom taks so long getting ready their entire Sunday has pretty much been wasted…and now Dad has other errands to do on top of this. I got upset. I snapped at Mom. I was mad at her. Mad for what she is doing to Dad. I know he is a grown man. I know he doesn’t need me saving the day but I was mad. I got off the phone and was mad. I felt really upset. I felt helpless. Like I can’t fix anything, I can’t help anything and I feel all alone in my thoughts. No one seems to want to improve this situation. Mom doesn’t get it. Dad won’t stick up for himself. Am I just supposed to stand by and pretend this doesn’t exist? I was mad. I am still sort of frustrated about it. I just feel helpless.
Do you think sometimes you just have to take a step back and “let people be” even though you know it isn’t what’s best? Have you ever found yourself defending a family member who probably didn’t really need defending? Do you think I probably just have to “back off” no matter how hard it is to do?
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 know I am about to sound like a broken record. To be honest I feel like a broken record. I feel like this is the same thing I have blogged about a hundred times. The same issue my family has been dealing with and we continue to be dealing with..we aren’t going anywhere with it and pretty much staying in the same spot. You are probably just as frustrated hearing about it as I am talking about it. But I have to talk about it. I have to because that is what this blog is for me- it’s where I talk about Mom’s MS, the issues that result from it and sometimes it is the exact same issue but a new day.
Sister K called me this afternoon to tell me Dad was frustrated once more with Mom and her lack of initiative regarding her MS. Their new therapist suggested Mom look into juice drinks that you would make in the blender to help with her spasms. Dad thinks that turned Mom off and she told Dad she didn’t think their therapist needed to come every week. Dad listened and rescheduled for 2 weeks from now. The problem with this is Dad listened and is giving Mom what she wants.Dad had a frustrating night with Mom needing him periodically. We have talked to Dad about getting some outside help. Dad didn’t listen and hasn’t acted on this issue.
Dad then vented to Sister K about all of this. Dad did the same thing with me a few weeks ago. Sister K and I are a bit dumbfounded by the entire thing thinking we don’t know what else to say or do. We realize we are in a tricky spot. Dad doesn’t have much family to talk share this with so we are pretty much it. We don’t want to discourage him from talking to us but we are also at a loss for words or advice. We feel we have given all the advice or suggestions we can and he is the only one who can choose to act on them. It is also difficult because one week Dad is optimistic and a few weeks later he is the polar opposite. It puts Sister K and I on a bit of an emotional roller coaster, unsure of when it will stop.
Part of this may be that the relationship between Dad and Mom is husband and wife. It may be Dad admitting to himself what is happening just as much as Mom needs to admit what is happening to herself. I am not sure what needs to happen or what to even say. But I do know I am seeing the same themes consistently appearing lately. I realize this isn’t a more unique topic or unique situation. It is the same issue I have talked about many times before. But it is an issue that I need to talk about. So here I am. Trying to find a way to deal with this and realizing I still don’t have the answer or the power to do so.
Have you ever had an issue come up repeatedly in your own life that makes you feel like a broken record? Do you believe in the concept that when something gets bad enough people will change? Have you ever had a situation where a caretaker is having trouble but won’t seek the help they need? Do you even understand the phrase “broken record” because I am not sure I do?