Tag Archives: mind

To Care or Not Care What Others Think

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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?

Checklist Stress

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My family just returned from a week long vacation in Las Vegas. Dad, Mom, Sister K, Grandpa and I all went and flew together from home. Husband wasn’t able to make it because of work. This trip has given me so many thoughts, feelings and emotions I need to flush through. The biggest of all- the lack of control and anxiety that comes along with traveling with Mom who right now for all purposes is essentially handicapped. Mom cannot physically stand or walk therefore she needed wheelchair assistance from the beginning to end.

Monday came, our official travel day, and I woke up early and just felt stressed. On top of everything else it was also pouring rain which also added another item to the list of things I cannot control- weather.  I felt like the entire day was a long check list and I would finally be able to let my guard down once we were physically in our hotel rooms and I knew we had made it.

What was on the checklist?

  1. Get Mom in the car to the airport.
  2. Get Mom out of the car at the airport and into a wheelchair. Get Papa a wheelchair too.
  3. Get luggage checked and boarding passes printed.
  4. Get Mom and Papa through security.
  5. Get to the gate early enough for pre-board.
  6. Get Mom on to the plane with special assistance of the aisle chair on the plane.
  7. Get Mom off the plane in Las Vegas.
  8. Get Mom back into her wheelchair.
  9. Get our bags.
  10. Get a car to drive us to the hotel.
  11. Transfer Mom from wheelchair to car.
  12. Transfer Mom back from car to wheelchair at the hotel.
  13. Check into hotel and hope we were able to get adjoining rooms.
  14. Arrive in hotel room and figure out how to get Mom into a different bed.
  15. Get food for everyone.

And that concluded Travel Day.

I would say this was the most stressful day of the entire trip. Even traveling home was not nearly as stressful. But I felt like the entire day I had a check list in my head and I was checking items off as we went along. Monday evening Dad, Sister K and I all went downstairs to get food for everyone and we all had a cocktail while we waited for our food. I felt like in that moment of cheers it was to think we did it! We made it.

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I keep running everything through my mind wondering how I could’ve had less anxiety or less nerves about the situation. Sister K seemed fine. Dad seemed a little stressed but is much more deal with the challenge as it comes. Do I think about it wrong? Do I need to stop thinking about the overview and go one step at a time? Can a person change how they deal with things like this? I know Sister K didn’t have a running to do list in her head on travel day. I don’t know.

We did make it though and it all worked out great. But now in hindsight there were important lessons I want to remember for the future.

Lesson #1: Try not to let the overview of the entire travel experience overload your emotions. In my case there were honestly moments in the morning before we left for the airport that I felt so stressed and overwhelmed that I secretly felt borderline sick. That’s not good and I need to find a way to process that better.

Important to Remember: It always somehow all works out. It is stressful in the moment but in the end it figures itself out. You can’t predict every bad scenario and the outcome. You also can’t have a back up plan for every plan.

I learned a lot on this trip and plan to spend the next few weeks processing all these lessons…but overall:

  • Did my family bite off more than we could chew taking Mom with MS and Papa who is 86 to Las Vegas? Maybe.
  • But was it worth it because of the memories we have given them and now have? Yes.
  • Will we do it again? I don’t know.
  • Am I glad we did it this time even with the additional stress? Absolutely. 

How do you handle stress of the unknown in these kinds of situations? Do you ever find the task at hand daunting because of all the to do list items it involves? Do you have experience traveling with someone handicapped and managing the additional items involved there? 

Same Ol’ Same Ol’

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It’s amazing how the mind works. I am beginning to think that when I look back on how I am mentally able to process everything going on with Mom and its impact on my family, I will someday wonder how I did it. I will someday be on the other side of it and look back and think how did I function through all of that? I most likely don’t give my mind enough credit, instead questioning its reactions to everything.

Mom is going home from the rehab facility tomorrow. Sister K and I talked to her about it Wednesday night in a conversation that went in circles. Circles in the fact that we talked about the same thing several times and we both weren’t sure where it was going. We got disconnected in the middle from Mom, Sister K called me back before calling Mom and all we could do was laugh and say “whatttt is going on right now???” Moments like that I can honestly say with every ounce of my being I do not know what I would do without my sister.

I talked to Dad about it a little yesterday and some more today. He told me he had gotten the file from the place and it said Mom had been “self limiting.” An interesting choice of words…taken to mean she isn’t pushing herself like she should. Other charts revealed she had not improved very much. Basically she will be returning home and after one month, we are exactly where we were a month ago. My exact thoughts about all of this initially have been realized. So what next?

Dad said he is bringing in a new company and people to stay with Mom during the day/night. Bringing in a physical therapist to work with her 1 hour a day. He’s going to explain she has to get improve because this is the last option we have…last option before what? I thought rehab was the last option? Now this is the last option?

I realized something on the phone. I could’ve said exactly all of that to Dad on the phone but I didn’t. My conversations on this topic are having to shift a little with Dad because I am having to listen but stay quiet and supportive…even though deep down I really feel very differently and have my own very different thoughts. The words used have become something of a “same ol same ol” in our house. I feel very same ol same ol right now about everything. People ask how Mom is doing? How was rehab? Same ol same ol. This is a big reason I think why I kept this so quiet from everyone…because I wondered deep down if this would happen. I’d rather have never said anything then have to say we are back to same ol same ol.

But what happens when you get tired of this never ending circle we seem to be in called same ol same ol? Is it bad to wonder how much longer your family will be stuck in this never ending space of same ol same ol? Because I wonder. And as someone who hates change, I am beginning to wonder if we are ever going to see any…and dare I say I am actually beginning to pray for change. Because the lack of anything is beginning to wear all of us out. I see Dad trying to keep his spirits up. Taking any hope he gets from anyone as the end all, be all word. I just don’t react the same. Instead when he talks to me and tells me these plans for Mom, I just think same ol same ol. Maybe its bad or maybe it is how my mind is coping with it. The brain is an interesting place and I can’t imagine it is easy to process all of this…maybe instead it has decided this portion of my life is going to be stuck in same ol same ol, so I can remain the support system my family needs without really acknowledging everything going on…I have to trust my mind because it may have decided that if it stops to acknowledge everything going on, it will be overwhelming on levels even it cannot handle.

So how am I today? Same ol same ol. How are you?

 

I Am Having A Bad Daughter Moment

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Confession: I feel like such a bad daughter. Last night Dad called and he was so excited because Mom was able to stand for a few minutes holding on to these bars at her rehab facility. I was on the phone and for whatever reason I just didn’t want to hear it. It is a mix between struggling to care and struggling to hope. I think my exact response in my head (not out loud) was thinking that’s great, is she going to stand tomorrow? My exact response out loud was “that’s so great Dad. Wow. That is amazing.”

I mean I feel awful that I had this thought. That I continue to have thoughts like this. Sister K said, we have to let Dad just be Dad with all this because maybe he needs this so he can get a better idea of where Mom is at and how she will or will not improve. She is probably right. But I just feel like I have really limited patience or ability to “fake” excitement right now. So instead I have kind of pulled back from checking in on Mom’s progress or getting updates as often.

Don’t get me wrong. I am not struggling with my relationship with my family…I am just feeling off about everything going on right now.

I feel bad about it. I continue to feel bad about it. I don’t know why I am feeling this way right now but I am. I just needed to come here and say it. I needed to tell someone.

Thank you for being my someones. 

A Lot To Talk About

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I have to admit that I think I have been avoiding this blog. Not because I don’t have a lot to talk about but because I have a lot to talk about and in talking about it, it all becomes more real.

The past few months have been tough with Mom. Basically she is pretty much bedridden or in a wheelchair. She cannot stand on her own or walk. I am sure you can imagine the challenge this has created within my family..more specifically Dad. We have had two women caring for Mom for the past 6 months, one during the day and one at night. Dad has been doing it on his own on the weekends.

One weekend in January I went home and took care of Mom on my own. Dad was on a work trip and Sister K and I wanted him to stay an extra day so he could just have some time to himself. In order to do this, one of us needed to go home and be with Mom. It worked out better for my schedule so I did. I was happy to do it but it was mentally and physically exhausting at the same time. I just kept thinking I can’t believe Dad does this on his own every weekend on top of managing life- running errands, grocery shopping and taking care of everything else. I had taken home my computer, books and movies thinking we’d have lots of down time but that was not the case. I am not sure how but it just was not the case.

To make a long update short, at the recommendation of Mom’s physical therapist and Mom’s doctor, Mom has entered a rehab facility for intense physical therapy for a few weeks. She has been there about two weeks and going on her third week. It was a battle to get her in there in the first place because of insurance since this is different from last time when she went from the hospital to rehab.

How is she doing? Has there been improvement? Sorta. But she isn’t standing or walking yet and a big part of me wonders if she will ever stand or walk again. I am having some serious internal struggling with this since Dad is so hopeful that she will and I don’t want to see like the family pessimist. At the same time, I have read a lot on MS and I just don’t know. No one knows I guess.

So I guess you could say I am struggling right now. MS continues to be something our family is dealing with and it continues to be something that will never give us a break. Even Mom being in rehab hasn’t been a “break” for Dad because he is having to stay on top of her care, on top of the doctors, physical therapists and go to visit her when he isn’t at work. It has actually added more to the work load than less like he originally thought.

I will continue to write more on all of these topics. I need to. I think it is helpful on a lot of levels and I am going to force myself to do it. The bottom line is writing about it is like my own therapy and writing about it amidst this community has become a way and a place for me to know that my family is not alone in our struggles. Thanks for continuing to read as I come and go from time to time. I am beginning to think it is reflective of how I am managing everything, how much I want to talk about it and deal with it and how much I prefer to remain quiet. But there is a lot to talk about and I am going to continue to do it.

We Never Stop Learning From Our Mom

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Going home is always interesting right now. Always. I feel like new challenges emerge, new themes within myself and new themes within our family. Everytime. As I am managing Mom’s MS I am also managing myself. I am learning a lot about myself in the process- learning that there are some things I have to improve upon to make me a better daughter but in another way to make me a better person. It is almost as if Mom is still teaching me even though she thinks she isn’t. She is still molding me as Mom even when she doesn’t realize it.

Slowing down: It is no lie that when Sister K and I go home we are forced (not necessarily by choice) to slow down. Our family moves slow, we can’t go anywhere quickly, we run late to everything and we don’t do nearly as many activities as we once did on the weekends. There is a lot of lounging around. A lot of just being.

Slow Down.

Being Present: At home it seems we are constantly multitasking. Constantly. I feel this a lot especially internally. I am looking at what we need to get done during the day. Looking at the point we are at currently. Trying to rush to get errands run, feeling stressed and uneasy about things that need to get done…and in the process my body is present but my mind is not. When every time and I do mean every time we somehow get it all done. And if we don’t get it all done we manage to figure out an alternative. It is like I can’t just have faith that it will all work out, knowing in the past that it will all work out and just chill out. Maybe it is a control thing or the inner planner in me…I am not sure…but I do know I become so fixated on the tasks we need to achieve instead of being present for the moment happening right now. A moment I probably won’t get back.

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Enjoying Moments: I have got to find a way to calm the voices inside of my mind, calm the negative thoughts, calm the worries and just focus on and enjoy my moments at home. I am not saying everything is perfect and that ever moment is enjoyable. We deal with a lot when we are home and do a lot to help Mom in order to give Dad a break. We are not perfect. There are moments where it is too much for Sister K and I step in or vice versa…or moments we notice Dad struggling and we step in. We read each other very well and I do consider that a major blessing. But at the end of the day, these moments regardless of how mundane or boring they may seem to other people, they are our family moments right now. This is the time we have been given to spend with Mom and I need to be present for them and enjoy them. I need to put aside my phone, put my thoughts or worries aside knowing they will all get done and just be present.

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It is amazing to me but Mom is still teaching me through this, she just doesn’t realize it. She is teaching me to be still and to be present to better enjoy moments like the above- an afternoon movie with Mom, Sister K and our dogs. Mom’s MS is full of tough times, special moments and lessons learned. The journey I am taking as being a part of this is molding and shaping me in new ways everyday…I just need to take a step back when I get overwhelmed and remember that.

Do you have trouble with being still and present in life? How do you allow yourself to quiet your mind and enjoy moments? Do you think sometimes the smallest and simplest moments are also the most special? 

Thinking Small Picture

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This past summer Husband and I moved to a new city. In the midst of a new city, starting a new job, unpacking in a new apartment…I was a bit on new overload. One of the only things that was stable was that I could run. Then all of a sudden I started having this sharp pain in my knee as I ran- a pain that tells you something is wrong. I thought I’d torn my meniscus, Husband thought I had tendonitis and after getting to find an orthopedist in a new city with my new insurance, I was told I had IT Band Syndrome. What?

That was my response. Maybe you have heard of it but I didn’t even know I had an IT Band. I was prescribed Physical Therapy 2-3 times a week for 6 weeks. I was a bit on overload with all of these changes and now this was slowly sending me over the edge. Frustration. Defeat. Frustration. Defeat. The feelings rolled back and forth for about 4 weeks. I also didn’t believe I would ever be “fixed.” I didn’t know IT Band Syndrome made any sense. As someone who isn’t even that big of a runner but just does it as a work out, I felt extremely helpless.

Slowly though, my Physical Therapist got me running. He started with this fancy machine that “de-weights” you. Have you ever seen this? I put on these fancy biker shorts that zipped me into the top of this machine, then the machine fills with air and I am only running on 80% of my weight. It was crazy. I was describing it to my new boss and she demanded to see a picture of the “fat suit.” Since I have no shame, I figured I owed it to all of you to show you a picture too:

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The reason I tell this story that has gone way off track is that there were many moments throughout this process where I wondered if this defeat and frustration is what Mom feels. I know she feels helpless. The task of just running without pain felt like a huge obstacle I would never overcome. I imagine that is how Mom feels about standing, about walking, about regaining her strength, about all of it. I have tried to remember that and tried to think how I can help her overcome it. Overcome the huge feelings of defeat, overcome what seems like this huge challenge that you will never overcome, basically overcome your thoughts- because in life and in MS it’s not just a battle of the body but also a battle of the mind. Where do you begin? I say it doesn’t matter, you just have to throw everything you’ve got at it, don’t think big picture but instead think small picture and begin anywhere.

Have you ever had a challenge that seems so big you don’t know where to begin? Can you relate to thoughts of being overwhelmed like you will never improve? What do you think of my anti-gravity running “fat suit?”

I Need To Talk

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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? 

 

 

 

My Head is Full of Nothing

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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?

Empty-Handed

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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?