A Secret Struggle

I have been having trouble writing recently. I think because (knock on wood) things seem to be going well with Mom. We seem to have reached a bit of a rhythm with all of this. I have also had a lot going on personally that was independent of Mom’s MS.

But one thing I haven’t been sharing and feel nervous discussing is the effect Mom’s MS is having on her cognitively. I have said before that this symptom is the hardest one for me to deal with- I can deal with Mom’s exhaustion, her trouble walking, her physical changes but the mental changes, they really bother me.

They bother me in a lot of ways. They are also one of the symptoms I don’t share with anyone. I am not sure why. Everyone seems to have opinions on Mom’s health these days. And they aren’t just opinions, they are strong words. Words that are heavy implying in many ways that we aren’t doing enough. These words though relate to the physical changes they are seeing in Mom. What people don’t realize is that there are many layers to this battle with MS and the physical is only the surface. In many ways it is only the beginning.

I also don’t like to talk about the mental changes because it is very sad for me. I am not sure how people on this blog would react to how I have been handling it…how Sister K and I handle it in order to keep ourselves moving forward. I am not even sure I am allowing myself to fully process and accept it. In many ways I think I am “masking my mourning.” I think Sister K and I possibly both are. Sister K has told me we can’t take this seriously and we have to laugh about it. And we do. After a conversation with Mom that doesn’t go in the right direction and pretty much goes in no direction, I call Sister K and we laugh. People may disagree with that approach. We aren’t making fun of the situation but in laughing about it, I think it makes it seem not so real.

These cognitive changes though, they are there. They are also tough. They are tough because I am someone who calls Mom everyday, typically on my lunch break. These phone calls though are becoming more fluffy in nature and more of a struggle for me as I am having trouble talking to Mom. I think she struggles to fully understand everything going on in my life. I am not sure she is fully focused and listening. In plain words, I feel like I am drifting apart from her. I find it incredibly unfair.

I also am 28. When my friends talk about their Moms it’s not like there is someone else in the group who also shares what I am going through. It’s not like other Moms may also have cognitive issues at this point. I hear about the advice their Mom may have given them, things they have done with their Mom, basically no matter what they say I am hearing their Mom is “normal” and mine is not. And I mask my emotions. I stay quiet. I engage about their Mom. I don’t engage about my own. It’s hard.

I know many people have different stories of things they have experienced with their parents. I feel blessed to have the Mom I have. I am in no way complaining or making fun of a tough situation. I am just expressing my sadness…mourning what I think is beginning to be the loss of Mom the way she once was…and finding a way to express this in order to accept the Mom she is becoming. I am also wanting to share this with you because this is part of my journey- another chapter in dealing with Mom’s MS.

Are there any struggles your loved ones have faced where certain symptoms bother you more than others? Do you have any experience dealing with cognitive issues as a result of an illness? Do you think it’s okay to laugh to deal with serious issues sometimes?

5 thoughts on “A Secret Struggle

  1. Everyone has their own way of dealing with things. And one is no more right then the other. Like you said, you are not making fun of her or the situation. It is just you and your sister’s way of getting through it. I remember once being at the funeral of my grandmother’s boyfriend. I hate funerals; they make me very uncomfortable. And me and my sister just started to get the giggles. Our nervousness over the funeral just made us start laughing. In no way did we think it was funny at all, it was just our way of dealing with a situation that was to much for us to bear.

    You both will find your own ways of dealing with this. And no one really has a right to tell you what you are doing is either okay or not. When my father was dying of cancer, he started having problems cognitively. And it was very difficult to witness. So in a way I understand where you are coming from. And with me myself having MS, thankfully I am doing well (knock on wood) but the times I begin to forget words or where I put my phone, keys, etc….puts me in a panic for a second.

    With your mom, do you notice her cognitive issues more when she is tired or overheated? Do they have her on anything for the fatigue?

    Don’t be so hard on yourself. You are doing what you can under very difficult circumstances.

    • Thank you for your words of support and encouragement. It is nice to hear stories of other people and how everyone deals with things differently. I definitely notice her cognitive issues more when she is tired or at the end of the day. But recently I have noticed them a bit more throughout the day and I can’t tell if it’s lack of paying attention/focus or something else. I need to start paying attention to it more because if I could find some sort of pattern it would probably help me in learning to deal with it.

      • I’m sure you’ll find your way with it and you’ll notice more of a pattern. Sometimes it happens so subtely that we don’t notice at the beginning. But your feelings are so normal and you are doing a wonderful job!

  2. For what it is worth … when we first started noticing cognitive symptoms we were told MS did not have such symptoms, long ago – denial was the first line of neurological and MS Society defense. At least now what you are seeing and experiencing is accepted. Plus you hit on a critical point. You as a 20 something obviously interact with other 20 somethings and your Mom’s MS and MS symptoms begin to isolate you by not engaging. Imagine if this occurred when you were in Elementary School? I have long felt the role of MS in this parent child relationship is lost in all the noise of MS, but it will ripple longer than the MS.

    • This post resonated in so many ways. I have been trying to pinpoint why this bothers me and bothers me more when I am around other friends and you are right- it is the isolation. I am having trouble with it now and could not imagine it happening at a younger age…and there are so many children who are dealing with it at a younger age. You are right that the role of MS in the parent child relationship will have an impact that will last longer than the MS. Because it impacts who you become as a person because of the effect it has. Thank you for sharing your thoughts and background on the cognitive symptoms. I didn’t realize there was a point when it wasn’t considered to be a symptom. Interesting what you said about the word denial- being a defense on both sides of the issue. I am really struggling with the cognitive portion of this as it seems to be impacting my Mom more than I think it used to. It is just tough. I am still thinking about your words above and could say so much more- thank you for your thoughts.

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