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?
My family is not a big Whole Foods shopping family. We have never been big on organic foods, ingredients in foods, etc. There is nothing wrong with it, but it hasn’t been our frame of mind…until recently. Last week Mom and Dad’s therapist suggested to them that they try juicing to help with relieving some of the pain and symptoms of Mom’s MS. Dad is really interested in this because he is also willing to try anything to help Mom. Mom not so much.
I have taken a step back from the disagreement because I am not sure which end of the spectrum I fall on. I understand the want and the need to try whatever you can, but I also understand it’s Mom’s body and she is the one who has to do it. We can’t command her to do things and take over in a way that says her opinion doesn’t matter. But at the same time, she has yet to be very realistic about her treatment or where she is regarding her MS forcing us to take over in certain situations.
But more important than the debate involved in getting Mom to try it, I am first wondering if the suggestion to try juicing has some weight or not? There are a few things I read online but then I thought I really need to come here and see what you think. I honestly trust all of you who I have met through this blog more than any research out there. Real people with real stories that I can relate to is what I have found here.
So given the topic of juicing, what do you know? Have you tried it? Have you noticed any improvements in your health? Are there any juice recipes that aren’t bad tasting that you recommend to potentially ease Mom into this? What kind of juicer do you have?
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!
People apparently like to stare. I don’t know why. I don’t know what inside of a person makes them want to stare but they do. They tend to stare specifically at my family and how we move Mom around. I would love to say this doesn’t bother me but it does. It especially bothers me more when it is happening at a family gathering or a party with friends. Why do people stare?
As a child I can remember distinctly Mom telling Sister K and me the phrase “Don’t stare.” She would say this when we would see someone who might have some sort of disability or may be different from us. She would say this because as children our instinct is to stare. It was one of what I would call Mom’s cardinal rules. I figured everyone knew this rule. Naively I especially figured adults knew this rule, but I am finding out they don’t.
We were at a family birthday party this past summer and everyone was lining up for a family picture. We were the last to get situated. The rest of our extended family seemed to move rather quickly to get in place. Then they just stood there and stared as Mom moved slowly with her walker and we followed around across the living room floor. Later that night when we had said good-bye in front of the house they just stood there again. Stood there and stared as Mom walked slowly to the car. Stared as we got her into the car. They didn’t speak. They just stared.
Similar things happen at parties we go to. There is a lot to maneuver and manage quickly without trying to draw attention to us. All while keeping a calm happy look on our face. It’s tough. We wait for the right moment when no one seems to be looking, then we move Mom from her wheelchair to a chair at the table. We shift her legs. Sometimes we literally move them. Sometimes we literally have to bend them. We help her stand. We help her balance. Then we do it again at the end. Even if she stays in her wheelchair there is always getting her into the car. The bottom line is there is always something. At the same time there seems to always be someone staring.
A word to society: Stop staring. As a family we are under enough internal stress in these situations ourselves and it would be helpful if you would just leave us alone and continue on as if nothing different is happening. Continue on in whatever else is happening and stop staring at us. How would you feel if you were in our shoes and we were staring at you? I am curious what people would say if I asked them that question. Maybe I should start.
Do you have any experience with people staring in difficult situations? Do you think there is a reason people do this? Were you ever taught not to stare? Do you think I could just be more sensitive to this and need to get over it?
I can’t put into words the love and respect I feel for my Dad. I believe deep down he is the reason our family is surviving Mom’s battle with MS. I have watched and continue to watch a transition as my father has become a caretaker. It brings back unsettling memories because I just watched my Grandpa go throught he same thing with my Grandmother as she battled Alzheimer’s. I watched as he became a caregiver to her and feel now I am watching Dad go through the same transition. And it is hard to watch.
Since this transition began I have felt my mind sharpened to the reality of marriage. My family is not large and up until I got married these two men, were the biggest male influences in my life. They still continue to be large influences as well. As I got married in 2010 and said my marriage vows, they really meant something very personal to me because I felt I was watchingthe tough parts of those vows lived out everyday. I understood the meanings behind the powerful words “for better of worse, in sickness and in health.” I understood the meaning of a committment and what it can mean through the tough times.
But I struggle with Dad’s transition in becoming a caretaker. He basically is one but I prefer to believe he is transitioning because it is difficult to think of Dad and Mom’s relationship that way. It is something I never gave much thought and if I did think about it, they were thoughts that this would not occur for many years from now. I also struggle because this level of responsibility and constant caretaking can take a toll on anyone. Dad will talk to me sometimes about what is going on and I don’t know what to say. I don’t know how to offer support. What I want to do is pack up and move back home. I want to find a way to be there for my parents all the time. I want to help him with Mom, be an extra set of hands for him and just provide extra help. But this hasn’t been in the cards for me up until this point and I don’t think it is.
So what can I do. I feel helpless again. I continue to feel helpless. I feel helpless because the best way to offer assistance in this situation is to be there. I also feel helpless because there is no way for me to be there except for brief visits home on the weekends. In the past year my husband began graduate school for his MBA so we moved about an hour and a half away closer to my hometown. We were 4 hours away before. This was a step. But without physically being there, how do you offer assistance. How do you help someone who is doing everything and you are doing nothing. And he does it all- he takes care of Mom full-time day/night and works full-time. He balances both of those responsibilities and he never complains. So I complain for him because I know he must be exhausted. I know he must struggle. How does he do it I wonder. How.
I think it’s love that makes him do it. It’s love that keeps him going, keeps him supporting Mom. Love is powerful but is it enough? I still struggle with how I can help him. How can I be there for him. Going home more weekends, calling to give him a sounding board to talk to, reassuring him that what he is doing is so important and we are all here for him. The struggle continues and it’s something I think I will struggle with for a long time. But it’s a struggle because of the love I have for my family. It’s a struggle because I want to be there for them as much as possible. So while it is a struggle, it is a struggle worth having and one I should feel fortunate to feel at all.