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 is endless grieving on both sides. That is the tragedy of chronic degenerative disease. I am so sorry.
Hi. I’ve just happened on your blog, and am sorry that you and your family are having such a tough time.
It’s been very interesting, sometimes quite difficult, to read through your entries, because I’m the Mom with MS. My kids are 22, 25 and 27, and I worry that they are just as scared, frustrated and angry as you are. There are some big differences between our situations – I was diagnosed almost 20 years ago, when my children were 4, 6 and 8, so it’s not as new and raw for them as it is for you. And while I use a wheelchair full time, I’ve been fortunate that the cognitive side of MS hasn’t affected me very much, and that I’m still able to function pretty independently.
Thank you for your honesty and willingness to expose your feelings to strangers.
Hi Katja, Thank you so much for your comment. I really appreciate it. It brings to mind a big fear I have when I write the posts I do that are raw and very honest about the tough times. I don’t want people with MS who may also have children to fear this is how others think about them. I have often thought and continue to think about my Mom’s diagnosis later in life. That mixed with factors of my Mom’s personality can be rather challenging as we navigate it. Sometimes I feel like everything needed for a person to fight against MS are traits that are not my Mom’s strong suit. It is also still very new…very raw and not something I grew up with. Rather than just knowing my mom as this way and growing up, I am faced with looking back at how she was and comparing her to how she is now. But I do know one thing- I have learned more and am a better person for having dealt with this at any age and in any form. The thought of this has actually inspired my post for today so thank you.
Thank you for this comment, it means so much. You sound like a wonderful Mom and I am honored you are reading my blog. Take care!
MS caregiving NEVER gets easier because no one’s life will ever return to what you remember. Don’t take this as flippant but be grateful with progression of MS dementia that your Mom at least still remembers you.
Caregivingly Yours, Patrick
…and there lies what I think is a big root of everything…still dealing internally with knowing things are never going to return to what I remember them as being.