Mom is on a lot of medications. I also know that cognitive issues can result because of MS. I go back and forth on whether Mom’s changes mentally are from MS or from medications. Dad seems to think medications. I think it is easier for him to think that way. I tend to think in the middle.
One thing that makes this tough this is the invention of a little thing called Facebook. Sometimes Mom will comment on people’s walls several times in an hour not realizing she already did that…or not realizing it is strange. It is difficult for me because Mom is the person who taught me my social cues, taught me how to behave and how to act and now I am watching her change in that manner.
Specifically yesterday I logged on to Facebook and saw she had commented on a family friend’s wall three times in less than an hour. It came up on my news feed so I can only imagine how many other people’s news feeds it came up on too. Normally I am good with ignoring these things but this time I wasn’t. I called home and Dad answered. I explained what had happened and he just responded by first defending Mom saying “I don’t think that is that big of a deal.” And then when I got further into it he said “look I just don’t care. If people want to think things let them think things. I am not going to go in there and tell your Mom something and embarrass her.” Which I get…yes. But still it bothered me. I think we are fighting several battles right now and one is in the court of public opinion of Mom and our family. I don’t like when people are around Mom and talk to her like they would if she was an elderly Grandmother. I don’t like when Mom’s friends talk to me about their own Moms who are in their 80s and compare my Mom to them. It all upsets me. So when I see things like this happen it frustrates me since it means this is just one more instance for people to see.
Maybe it is something I need to come to terms with…I can’t fix any of this or make it go away. I especially cannot control Mom. I can’t change people’s opinions. But it’s hard. And sometimes I snap. Sometimes I can’t make a joke of this situation and sometimes it bothers me. Last night was one of those instances.
How do you manage people’s opinions? Do you worry what other people think or are you how I aspire to be and don’t care? Does it bother you when people treat you or a loved one differently than they should be treated?
I am having a hard time. There I said it. I am having a hard time. I don’t have a handle on this and feel like instead of getting better at handling Mom’s MS I am getting worse at it. To the outside world I tend to seem like I have it all together. I talk positively, I say all the right things, sure it’s tough, I am dealing with it, I am fine, etc etc.
Inside I am feeling differently.
Inside I am struggling. Inside I feel lonely. Inside I miss my Mom even though she is very much still here. For the past five years since I started working Mom and I have spent the majority of my lunch hours on the phone. Lunchtime chats is what we fondly referred to these conversations. I wandered around outside, talking about my morning, talking about life, just talking and then when my lunch hour was over I went back to work and Mom continued on with her day. These carefree conversations were something I never gave much thought but I could depend on them no matter what kind of day I was having- and in the course of starting new jobs, changing cities, managing challenging situations there were many moments where these conversations were what got me through the day.
But now things are different. Mom isn’t as sharp as she once was and I am not sure if that is the MS, the amount of medicine she is on or a combination of both. But regardless our conversations are not the same. There is a lot of repetition and a lot of simple topics that are not too complex. There are times where I just need some advice but I can’t get Mom to understand the story and in those moments I feel frustrated. There are times I call and Mom may be having a bad day or be in pain and in those moments I feel sad. There are times when we are having the exact same conversation we have already had before and in those moments I feel stressed.
When I get off the phone I am typically not in a better frame of mind than I was before and I need to shut it off and go back to work or go back to life….and that is hard. I feel like I am living a double life in my head- the person who has it all together / the daughter who feels like she has nothing together…and I am having a hard time managing it.
I need to come here and talk about this. I need to continue to talk about this. I have faith I’ll find a way to positively handle this new chapter in my journey with Mom’s MS…and I think a big part will be holding myself accountable about my true feelings here so I can begin to manage them.
How do you manage multiple emotions and situations going on in your life? How do you manage the tough parts while living the good parts?
Mom is undergoing a steroid infusion this week. Every evening someone from home healthcare has been coming to our house to give Mom an infusion. Becuase of her decline the past few weeks, her physical therapist thought she may be having an MS exacerbation. My parents quickly made an appointment with her doctor who prescribed the steroid infusion to get her strength back.
I have to be honest, I didn’t think much of this. I didn’t think this would really make much of a difference and had started trying to reason my way through the changes in Mom. I am continuing to do this. But something strange happened this week- the steroid infusion began and I have felt through phone calls with Mom that her presence and spirit are back.
Today at lunch I was going to go run some errands and just called to check on her really quick. Really quick turned into 45 minutes….she was so tuned in, talkative and upbeat that I couldn’t bring myself to get off the phone. I soaked up every one of those minutes as I wandered around outside. We talked about the same things, she was rambling repeated comments a few times but I really didn’t care. It was just so nice to be able to talk to Mom…really talk. She wasn’t loopy or tired or out of it. She was Mom.
I know this may not last. I am very aware that this is most likely a result of the steroid in her body right now. But I also don’t care. I enjoyed this afternoon so much and felt so revived coming back for the second half of my day. It all ties back into living in the moment with Mom. I have been having tough moments the past few weeks. But today was a good one. It was one that I want to cherish.
I am heading home this evening to actually see Mom and Dad. Husband and I are attending a wedding with them tomorrow and then I will be staying there until Wednesday morning because Dad has to go out of town. He likes for either Sister K or I to stay with Mom if he is traveling overnight. I know we most likely won’t be able to do this forever but for right now we are both in situations that allow us to, so we do. It will be nice to be home and nice to spend some more time with Mom. More time working on my patience and working on living in the moment. Hope you have a great weekend!
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’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?
Do you tend to think positively? Are you immediately optimistic when life throws you a curve ball? This is not my best trait I must admit. I tend to think a little more pessimistic than optimistic. It is something I would like to change and sometimes I am good at my efforts to change and sometimes I am not.
One area that I seem to struggle with positive thinking is where Mom is concerned. Dad and Mom are meeting with their therapist tonight. Dad called me today and left me a real uplifting message about how he had spoken with the therapist and he had some great ideas and he felt good about everything. His outlook was better than this time yesterday afternoon when he felt frustrated. I must admit I struggle with this. I don’t know if I am just being pessimistic, if Dad is being overly optimistic…or if one of us is being realistic and the other isn’t. But I have my doubts. I guess I just feel like not much is going to change where Mom is concerned because she doesn’t want things to change. And I feel I am admitting that to myself. But when I talk to Dad and hear him so optimistic about Mom improving I begin to feel like I am just being negative. Like I am not thinking positively. I feel wrong for thinking in this way but I don’t know how to change it…or the big question of if I really should change it.
Do you ever struggle to think positive about something after so many negative moments in the past? Do you think sometimes we can mistake negative thinking with realistic thinking? Do you think we should always strive to think positively?
I am working through a lot of feelings in my mind over the past 24 hours. I am trying to find a way to somehow get a grip on the changes going on with Mom. As I sat in Mom’s doctor’s office yesterday while she was getting upset at Dad and me I had this realization- this is not Mom speaking, this is MS speaking. It reminded me of what I used to say to my Grandpa when my Grandmother who had Alzheimer’s would be so mean to him- it’s not her, it’s the Alzheimer’s.
It is incredibly difficult for me to on one side be so angry at Mom but then on the other side I am laughing and talking about meaningless stuff. I can’t hate her. She is my Mom. I am not going to cut her out of my life. She is my Mom. I’m not going to stop speaking to her. She is my Mom. But in the same breath, as I sat there yesterday and watched her I couldn’t help but think, this isn’t my Mom.
In a perfect world I wouldn’t have to split these two identities up. In a perfect world Mom would cope with the fact that she has MS and start to accept it and deal with it instead of lashing out with such anger and borderline depression. But I don’t live in that perfect world. In my world I have a Mom who sometimes is the most wonderful Mom in the world and is the woman who is one of my best friends and confidante. Then it flips and I have a Mom who is angry, depressed, hurting, upset and creates a person who I don’t recognize. A person who I struggle to understand and a person who makes me angry in return.
I am not sure if it is the right frame of mind to take or not, but for the next few days I am going to try it out. Try to rationalize my two Moms to see if it can help me get a grip on the mix of emotions I am currently feeling.
**I can’t thank you enough for the support I received from such wonderful readers yesterday. Your comments, feedback and support meant the world to me. I pour my heart out on this blog and I never know how it will be received or how it will be taken by others. I am finding that I have made my own friends here in this virtual world as I navigate this sticky part of my life. You come here to listen to me share and not to judge. It means so much. I wanted to say thank you for being part of my journey in dealing with my Mom’s MS.**
Have you ever seen two distinct and conflicting personalities in someone you love because of a disease? Do you think this is a good or bad approach to try to take?