Have I started ignoring Mom’s MS when I am home? Is choosing to focus on other things the same as ignoring my feelings on the issue?
This thought has been on my mind since yesterday evening as Sister K and I drove back here together. We had a wonderful weekend at home celebrating Dad. It was simple but it was wonderful. Saturday we had a relaxing pool day in the backyard with oldies music and margaritas, Mom came out to sit in the shade for a little while, and we had a delicious dinner outside. The hysterical highlight: the moment Sister K and Dad decided to demonstrate that they can still do cannonballs (no one ended up in the hospital). I took pictures and hope to post those up a little later this week.
Sunday afternoon Sister K was working on grad school homework, Mom was resting and Dad was filling out some paperwork on the computer. I decided to try to make myself useful somehow. That is my new goal everyime I am home- to do something that would make Dad’s life easier during the week. I swept the house, I did the laundry, I did the dishes. In a sense I did chores. I felt good doing these things. I felt helpful.
But last night as we drove back, Sister K shared with me her concers about Mom. Her concerns about where her MS is heading. For instance Mom used to walk with her 4-wheeled pink walker “Pinky,” now she is walking with “Walkie:” a grey walker that only has 2 wheels in the front so she can have better control. Sister K said it best when she said I feel like just the mere fact that she is on a different walker is a big step in the wrong direction post-relapse. Sister K told me through her tears how she was fearful of the future with Mom and MS. Fearful of Mom changing. Fearful of Mom being here but being different. I could understand. I have felt all these same emotions before. But as I listened and we talked, I wasn’t feeling them in that moment. And I am not sure why. Have I finally in some way accepted what is going on? Is Sister K entering the beginning stages of this grieving process that I have felt like I have been in for quite some time? Or am I simply beginning to ignore the basics of Mom’s MS and choosing to focus elsewhere? Focus on something simple such as straightening the house, an area when I can actually see results?
I don’t know. I mean I have acknowledged that I have to keep living. I can’t focus on Mom’s MS 100% of the time. I am not pretending as if it doesn’t exist. But instead I am just shifting my focus when I am home to the things I know I can change. The ways I know I can help. Laundry, washing dishes, sweeping, straightening up. Chores that don’t carry the same negative connotation they did when I lived at home. Today I sit here thinking how good it feels to do chores at home. How uplifted I feel when I leave knowing I’ve made a difference. At the same time, I know Mom’s MS still exists. It is still there. There are still a number of feelings and emotions tied to it. So I continue to ask myself, are you ignoring the problem or are you just using these chores to help cope? I don’t know.
Do you have any certain things you use as coping mechanisms to deal with certain stresses? Do you ever ignore problems or pretend they don’t exist? How was your Father’s Day weekend? Anyone else out there still doing cannonballs? I, for one, am not.
I have MS, and I can tell you that your mother probably appreciates that you focus on something other than MS. The illness is already potentially all-consuming, and she is probably trying to hold on to the self which is her truest self. MS should not force her to deny everything that has defined her for so long, though it will absolutely try to do that. At the same time, it is okay to acknowledge to yourself and to her that she has MS because “not seeing her” is also not productive. But recognizing that life is more than MS is also good.
Hi Judy, This is so true. Mom would like for me to see her as Mom and not see the MS first and then my Mom behind that. It is important that I remember to not allow this to be all consuming. At the same time it is a balance that you described between seeing the MS and seeing her. It is important to do both but most importantly remember she is Mom at the end of the day first and foremost. Thank you for stopping by and commenting here!
First time visiting and commenting on your blog; I can’t imagine what you/family are going through with the diagnosis of MS in your mom and the changes in her health that you see; I am sure it is very hard to deal with it all. But I think you are being realistic in what you are doing with realizing that your mom does have it and trying to cope with it the best you can by seeing what you can do to help your dad as well as to be there for your mom the best you can. I think you aren’t ignoring it. Ignoring it would mean that you would expect your mom to be the way she was before the diagnosis or not acknowledging the fact that she has it. Hubby’s mom had Parkinson’s disease with the dementia associated with it; they all kind of ignored it, kind of like the elephant that is in the room but no one wants to acknowledge it is in there instead of tackling it and dealing with it the best they could with decisions to be made, etc. So I think you are very realistic in your approach with what you are doing, as hard as it might be to be doing so. I hope this made a little bit of sense and that today is a kind one for you.
Hi Betty, Thank you for your kind words. Watching the changes in my Mom as a result of her MS has been one of the most difficult things I have gone through. As I have mentioned before just as we think we have a handle on it there are new challenges or issues. Thank you for for reaffirming I am being realistic with my approach to it all. You seem to have a good understanding of how it would be to ignore a big issue so I appreciate your support. Thank you for stopping by and reading today!
After reading your post, I tried to look at my own MS through the eyes of my adult children. I’m sure they want nothing more than to have the old totally capable mom available to them rather than this disabled imposter! However, we still enjoy the same laughter and good times as we always did. My grandchild (and the new one coming) will only know me as disabled, but that’s not necessarily a bad thing, because they’ll know me as ME, then attach the disabled label afterwards. Your mom is still the same person, just with a little extra baggage.
Hi Muff, This really resonated with me because one big fear that silently exists right now is how all of this will work someday when I have children and Mom has grandchildren. She is very nervous about that. While I do not have an children yet someday I hope to and when that time comes I am unsure of what it may bring. You make me hopeful it will be a very natural transition and my children will love their time with her just as much regardless of her disability. I also love your comment “disabled impsoter!” It reminds me of something my own mom would say. Thank you for reading today and commenting. It means so much!
Over the decades we have used the phrase “living with MS”. MS became part of our family, though of course dramatically differently than yours in that our daughter never knew family without MS. Sooo I guess to us it is neither coping nor ignoring, more accepting.
PS I hope the ‘shout out’ for MS Recess has sent some new readers your way.
Caregivingly Yours, Patrick
You are so right. Your family, especially your daughter knows her Mom having MS as the norm so she is not fighting a past of when things may be have been different. You have also all dealt with the new changes or challenges and are most lkely better equipped because you have always been. Your comments really bring a different thought to my mind about how different this would have been if my Mom had always had MS as opposed to being diagnosed later in life. It has given me a good topic to reflect on one of these days. Thank you also for the “shout out.” I have gotten some new readers today and I am so appreciative! Support like yours from someone established within the MS community means so much.
My mom was diagnosed with lupus in 1996. The family didn’t understand or sympathize. I was away in graduate school and didn’t see the changes first hand. It took quite a while to really begin to understand and accept her diagnosis. Then my mother moved East and I moved in with her in 1998. We have shared housing since that time (very hard to believe it’s been 14 years now).
Since 1998 I’ve seen my mom change dramatically. She’s been dx with scleroderma which has caused pulmonary arterial hypertension (both which will shorten her life). I’ve become her caregiver and it’s hard to watch (and deal with) the changes. In fact since she retired last December, she probably spends more time sleeping/resting than being active.
Of course, I want her to be like she was just a few years ago, but that won’t happen. It makes me angry sometimes and if I really think about it, my eyes get hot and begin to tear. But one way we cope sometimes is to joke that between the two of us, we make one mostly healthy person. LOL.
It can be difficult at times, but it is important to focus on things other than the disease or disability. Continue to look for the person your mother is and continues to be. She is the same person with a changing body.
Thank you for sharing your story Lisa. You and your mother have such a fighting spirit that is inspirational. I do need to remember to continue to see my mom as just mom and forget about the MS at times because she is the same person just with a changing body. Thank you as always for reading and for your support!
My Father’s Day was great too! My children (16, 20 and 22) seem to ignore my MS and that is just fine with me. You are coping as they are. They know it’s there, I know it’s there, there is no need to dwell on it. I definitley don’t want to focus on it anymore than I want them to. Your mom appreciates your help and hopefully your sister can get to the same place as you at some point. I know I would not want my family crying over this. I think you, like my children, are dealing with it in a healthy way.
It is nice to hear about other people with children similar ages and how they are coping. I think you said it best when you said “they know it’s there, I know it’s there, there is no need to dwell on it.” We have had an intense month with Mom’s relapse, hospital/rehab stay and now back at home and trying to readjust to the new challenges which is why it is at the forefront of our minds right now. It’s all been a bit overwhelming-we felt like we had it nicely managed in a little box and then someone pulled the lid off the box. Now we are trying to manage our emotions about the changes again. It’s funny because we each have our moments where one of us is managing it better than the other. The goal for us is to stay at the healthy point your children are at once again. Thank you for stopping by and for commenting!