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?
People love drama. Not everyone, but some people really do. Just an observation I have made and one that is becoming a bigger one to Sister K and me recently. People complain of so much going on- X, Y and Z…and we just look at them. We empathize. We are sympathetic. We then share our own daily stresses…and we don’t get irritated in any way because the issues they describe are valid. Everyone has issues. It’s part of life.
But lately I am feeling a bit lost when I stop to think about how much is truly going on- I felt this way this past weekend while I was sitting at home at our kitchen table talking to Dad. He told me he just feels worn out. He has gotten help during the days for Mom but at night as soon as he gets home he said he literally has no time for himself. He goes all evening and all night long. He is a full-time caretaker. In some ways this would work if this was all he did but he also runs a major company during the day. He has the added stress of a full-time job on top of this. Then on top of that he is the head of our household. He is Dad- the one who is supposed to know everything and fix everything.
And now, in light of events from last week he now has the added weight of Papa’s hip replacement recovery. He is not responsible for the recovery and Papa really seems to be doing well- but Mom wants to get to the hospital to see Papa, therefore time now has to be allotted for that too. The process of getting Mom just out the door is a lengthy one, then getting her in/out of the car and back inside…it is not easy and it’s not quick. He told me that when he got the call in the middle of the night about Papa’s fall Mom was upset that he wasn’t more upset- and he said he just sat and stared thinking, how am I going to take on another thing right now?
He’s doing it though. Somehow he is doing it. But it worries me too. You can read between the lines and see why that would worry a daughter about her father. At the same time it frustrates me with Mom’s MS because quite honestly I don’t understand it. We have been told often by people the MS sort of ebbs and flows; you experience relapses; then recover; but Mom just seems to ebb. She doesn’t seem to go back to where she was before, she just gets worse– and I don’t understand why? Is that how this works? Is that how this is going to work for her? What is going on?
I have a lot of questions. Questions that are sitting right below the surface for me. Questions and concerns about all of this. I also feel helpless. I want to do more. I wish I could do more. I can listen but that’s all I feel like I can do- I can’t even think of advice to offer. Yesterday as I listened to Dad I just sat there with my head feeling blank…thinking how much more can you seriously take. I didn’t think this about myself- I thought this about Dad. And he doesn’t complain, he doesn’t get upset, he just takes it on- but I can see how it is wearing on him. I can see how he is tired. I can see how all of this is becoming too much…but then I am left with the question of how do you even fix that? How do you make it less? I don’t know how you do.
I feel like all I can do personally is not add to the stress. But beyond that I am at a loss. A head full of thoughts but no words and no way to fix anything.
Do you ever feel helpless that you can’t help a loved one more? How do you handle your MS with either yourself or as a caretaker? How do you stay positive and keep going? Does anyone even understand the path of MS?
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?
I know I am about to sound like a broken record. To be honest I feel like a broken record. I feel like this is the same thing I have blogged about a hundred times. The same issue my family has been dealing with and we continue to be dealing with..we aren’t going anywhere with it and pretty much staying in the same spot. You are probably just as frustrated hearing about it as I am talking about it. But I have to talk about it. I have to because that is what this blog is for me- it’s where I talk about Mom’s MS, the issues that result from it and sometimes it is the exact same issue but a new day.
Sister K called me this afternoon to tell me Dad was frustrated once more with Mom and her lack of initiative regarding her MS. Their new therapist suggested Mom look into juice drinks that you would make in the blender to help with her spasms. Dad thinks that turned Mom off and she told Dad she didn’t think their therapist needed to come every week. Dad listened and rescheduled for 2 weeks from now. The problem with this is Dad listened and is giving Mom what she wants.Dad had a frustrating night with Mom needing him periodically. We have talked to Dad about getting some outside help. Dad didn’t listen and hasn’t acted on this issue.
Dad then vented to Sister K about all of this. Dad did the same thing with me a few weeks ago. Sister K and I are a bit dumbfounded by the entire thing thinking we don’t know what else to say or do. We realize we are in a tricky spot. Dad doesn’t have much family to talk share this with so we are pretty much it. We don’t want to discourage him from talking to us but we are also at a loss for words or advice. We feel we have given all the advice or suggestions we can and he is the only one who can choose to act on them. It is also difficult because one week Dad is optimistic and a few weeks later he is the polar opposite. It puts Sister K and I on a bit of an emotional roller coaster, unsure of when it will stop.
Part of this may be that the relationship between Dad and Mom is husband and wife. It may be Dad admitting to himself what is happening just as much as Mom needs to admit what is happening to herself. I am not sure what needs to happen or what to even say. But I do know I am seeing the same themes consistently appearing lately. I realize this isn’t a more unique topic or unique situation. It is the same issue I have talked about many times before. But it is an issue that I need to talk about. So here I am. Trying to find a way to deal with this and realizing I still don’t have the answer or the power to do so.
Have you ever had an issue come up repeatedly in your own life that makes you feel like a broken record? Do you believe in the concept that when something gets bad enough people will change? Have you ever had a situation where a caretaker is having trouble but won’t seek the help they need? Do you even understand the phrase “broken record” because I am not sure I do?
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 love gloves. I notoriously have cold hands and gloves provide the ultimate in warmth. I wish you could wear them year round but it is only really acceptable to wear them in winter. But I was thinking today how gloves provide me the ultimate cover up, enabling my hands to stay warm and function. It got me thinking about how we cover up things in our own lives.
Dad called me today because he and Mom are going to meet with a therapist again tomorrow night. It was advised to Mom and Dad after her last doctor’s visit that they needed to see someone. The main reason is Mom is not admitting to herself or dealing with her MS diagnosis. They met with someone in December and will meet with the person again tomorrow night. I had been asking Dad if they had another appointment scheduled but he thought that with the holidays things seemed to be improving. But now in the second week of January it seems as though we still have the same issues, just a new year.
Dad mentioned Mom’s MS doesn’t seem to be improving and her mobility seems to be getting slower. It is also becoming a little more difficult for him to assist her. These are little things but little things that are big things. He asked if I had noticed anything over Christmas and I said honestly, I think Sister K and I are just turning our head the other way. The holidays were not an appropriate time to bring up this argument again but in many ways I think Sister K and my days of bringing up this argument are gone. I think we have done everything we can and now it is up to Mom.
Someone gave me some good advice once: She said people speak verbally and non-verbally and their non-verbal actions typically mean more than their verbal actions. Mom’s non-verbal actions are very honest and when I stop to think about and look at them they tell a very honest story. The avoidance, the lack of initiative, the negative attitude at times, the contentment with where things are- they tell a lot. A lot that I can’t really write about because I am still working it out in my mind. It’s a cover-up. A cover-up that allows Mom to stay warm and cozy within the life she wants without getting out in the cold and beginning to deal with things. It’s a cover-up that I am not sure any of us have any tools left to uncover. I think Mom may be the only one who can do it.
Do you ever cover things up or not deal with issues in your life? Do you think at a certain point you just can’t push someone to deal with things anymore? What is your favorite thing to wear to keep warm during winter?