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?
On December 23, Sister K, Mom and I all headed to the mall…Husband and Dad headed to the movies together. It was girl time/best friend time/mother-daughter time/all of the above. We were done with our holiday shopping but went to enjoy the sales, soak up the frenzy of the pre-Christmas chaos and spend time together.
As I was there I saw other families together, other mothers and daughters but for the first time I didn’t feel the instant twinge of jealousy I used to feel. Sure Sister K and I pushed our Mom around the mall instead of walking beside her…but instead of focusing on the differences between our Mom and other Moms…I just focused on being with Mom. We had a wonderful day. We wandered around, in and out of the stores, showing Mom things, trying clothes on, stopping to grab something to eat, and to insert a line from a familiar Christmas tune “laughing all the way.” It was a special time and the perfect way to leave the cares of my life behind and become focused on being home with my family for Christmas.
I felt very blessed by the relationship I have with Mom and Sister K. I felt blessed that I “wanted to go home to spend time with them” as I listened to people complain about being home with their parents for holidays. Instead of thinking of the frustrating cards we have been dealt with Mom’s MS I thought about the good cards I have been dealt with my family. I am learning to take all the cards I’ve been dealt, the good and the bad, and to make it work. And if it means taking turns pushing Mom around the mall in her wheelchair, sometimes having some minor issues with navigating through doors, and sometimes taking up too much space- I’ll do it. I’ll do it because as I sit here today I don’t remember those things, I just remember the time spent with Mom.
So a week after Christmas and with the holidays behind, here are some pictures of
Sister K and Mom “rolling” around the mall:
Enjoying the lights of the season
Avoiding the cobble stones to the left- we learned Mom isn’t a fan
We also learned Mom’s wheelchair doubles as shopping bag storage
Did you do anything special with your family over the holiday season? Do you ever focus on the negative cards you’ve been dealt and overlook the positives in the process? Does anyone else enjoy going to the mall to enjoy the pre-Christmas chaos or are you among those still doing last minute holiday shopping up until Christmas Eve?
Happy New Year blogging friends- after a bit of a holiday hiatus I am back!
I am also curious…Do you make New Year’s resolutions? I am not big on them. The main reason is because I feel like if you want to make a change in your life do it, don’t wait for a new year to do it. But with that being said, there are a few I am making this year just because I am feeling like the timing aligns well with some changes I want to make in my life.
I thought I’d share these too since I figure that if you are reading this blog you know me pretty well even if we’ve never met in person:
My Superficial Resolution:
1. Stop picking/biting finger nails. This has been a looming issue for me. I actually think I picked it up from Mom which is kind of comical. But as a reward for stopping I made an agreement with myself that I’d treat myself to a manicure.
My Carry over from Last Year Resolution:
2. Cherish the Moments. I have talked a lot about this on here and it was a central theme throughout my holidays. Really trying to be present and almost take a mental snapshot of my time with loved ones or memories with myself that I let slip by or not appreciate. I felt like I really soaked up my time at home with Mom over the holidays, but I also really cherished my time at home. I cherished the little moments with Mom and with my family. I really want to strive to be better at this rather than always thinking two steps ahead or not being fully present.
My Epiphany Resolution:
3. “Evacuate MY dance floor.” I love to dance. This is no secret and I have talked about this many times on this blog. New Year’s Eve as I was staring at a football bowl game Husband was forcing me to watch by taking over our TV, I had a thought- I have really struggled with letting people bother me. The kicker is these are people who in no way directly influence my life on a daily basis. They are people from my past, people I only know about through Facebook or people who used to be friends and I am working through the ending of that friendship. The point though is I allow these people who I never interact with to control my moods sometimes. I allow myself to ruminate on their actions or words that were hurtful to me and in effect I end up in a downward funk. I am realizing though that my family is facing and is going to continue to face some trying times with Mom. And using her as my focus, if there are people in my life who I don’t think I can pick up the phone just to say “I am having a hard time” then those are people who should not be in my life. So in effect I will be asking them to “evacuate my dance floor.” I will not literally be informing them of my decision but I am going to internally hold myself accountable to evacuating them from my dance floor and therefore my thoughts. This is going to be my motto of 2013. Because I do believe I am hitting a point where friendships are harder to maintain, life is throwing bigger curve balls my way and I need to surround myself with people who I want to be surrounded by whether it is being in their company or thinking about them in my mind.
So here we go. Thank you for sticking with me as I kick off 2013. I love this blog and am so thankful for the people who have found it and read it- more than you know. I look forward to navigating 2013 with you by my side and knowing that no matter what life throws at me this year, I am lucky to have this place to come and deal with life.
How were your holidays? Do you believe in New Year’s resolutions? Do you think it’s important to take the time to “cherish the moment” everyday, not just during the holidays? Did you know there is a song called “Evacuate the dance floor”?…it may or may not be my new anthem 🙂
I have mentioned before, I am a cat person and a dog person- all rolled into one.
Husband only grew up with dogs because his Mom is allergic to cats. Therefore he doesn’t know if he is allergic. This has placed a nice little wedge in any plans of ours for a pet. We could get a dog, but until we live in a house we just don’t think we have the time to devote to it. Recently though someone in his grad program mentioned she was looking for someone to “cat sit” while she was studying abroad for the next few months and we offered. We have our own motives too because it is a true test of whether Husband is or is not allergic to cats.
Well, Chloe arrived last night. It was a funny evening with her getting used to us and us getting used to her. Especially Husband just because he has never been around cats. But I called Mom to tell her about our new furry friend and I could sense some nostalgia for both of us. It made me feel like a little girl again with our own cat. It transported me back in time to our old house…growing up with Sister K, two little girls and our cat we loved to put in baby strollers, carry around the house in the oddest of positions, or even snuggle with to take naps. It’s taken me mentally back in time- a time filled with Mom and her minivan, carting us to lots of activities, volunteering at school, talking on the phone in the kitchen, all sprinkled with memories of my cat throughout. Almost as if I am appreciating childhood and memorializing the memories of it just a little bit more thanks to our new furry friend. My lesson of the day, sometimes it is nice to be nostalgic and to get lost in memories.
Do you allow yourself to get lost in old memories? Do you think it’s difficult to not be sad when you think of a time without illness in your life? Are you a cat person/dog person/neither person/both person/or alternate animal person?
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?
Alright I am back. Not that I every left, but over the past month I’ve had a lot going on that had nothing to do with Mom’s MS. In a way Mom having MS took a backseat to everything else going on in my life. Maybe that is good from time to time. Maybe it is necessary to help me to keep things in perspective and continue to live my life. But things are resolved, I am feeling back to normal (after you read this post you may change your opinion of that comment..ha), and I am ready to share my words regularly once again.
Oct. 25 was Mom’s 60th Birthday. I posted about our plans for her birthday here. What I didn’t post about was the performance that Sister K and I conducted for her when we got home after her family birthday dinner. We ran upstairs in our house and raided our childhood bedrooms trying to find and piece together old dance recital costumes that may somewhat fit in one way or another. We were going for poodle skirts. We only found one poodle skirt and sequin jacket. Sister K took that outfit. Just as we felt we were about to fail at our mission we discovered the ultimate in past costumes:
My California Raisin Halloween costume circa 1992
Let’s just say it was amazing. Sister K and I put on the song “Welcome to the 60s” from the musical turned movie Hairspray and began just randomly dancing and serenading Mom in the kitchen. The dogs were barking at me the entire time. Mom and Grandpa sat at the kitchen table watching. Dad on a bar stool wondering where exactly he went wrong with raising us and Husband rolled his eyes continuously because nothing surprises him anymore.
But the point of all this- the costumes, the music, the dancing- this is how we survive. This is how we cope with MS. We remember to not take life seriously. We realize the importance of laughter. And we have no shame and will do whatever is necessary to bring a laugh and a smile to our family, especially Mom. We will do whatever we can to distract our family from the dark place we can easily find ourselves in because of MS.
Have you ever done something silly to get a laugh out of an otherwise tough situation? Do you think it’s important to not take life too seriously sometimes as a way to cope? Were you a fan of the California Raisins? Did you hear that I got an iPhone Friday night? Lots of tweets and more pictures to come now that I have officially entered the real world. Be on the lookout.
My family is evolving. Our dynamic is evolving. Part of this is a natural evolution and part of this is on account of Mom’s MS. I have mentioned before that my family has never exactly been the most punctual family in the world. But these days we move very very slow. It can take Mom a good 15 to 20 minutes to get from the living room into the garage and into the car. That is assuming everything is ready to go. Sometimes it can take longer. We are all learning to adjust to this. We are also learning the many definitions of the phrase “time to go.”
There are now 3 steps to planning when we want to go somewhere: 1) Determine what time we want to arrive at our location 2) Determine what time to leave 3) Determine what time we need Mom to be ready and how long it will take to get her in the car. It is a process to put it in the simplest terms. There is no more rushing out the door anymore. We don’t rush. If we are running late than we take a deep breath and realize we are going to be really late. That is how things go.
Sister K and I are getting more used to this. More used to just hanging out, not rushing to get out the door, realizing that going out to lunch may mean we are eating lunch at 2:00. It may also mean we are eating lunch at 3:00. Going out to dinner could happen at 8:00 or 9:00. Things are just on our own time now. Our own schedule. But, I also have another person in my life I am balancing who this does not come so natural to…Husband.
It is one thing to be experiencing the waiting and being late when it is your immediate family. I believe Sister K and my tolerance for the situation is higher because it is our Mom. We also weren’t raised in a very punctual family to begin with so in many ways this is just a bigger extension. Husband on the other hand comes from the polar opposite. Where my family would be 10 minutes late, his is 10 minutes early. His Dad is always in a hurry to get out the door to get somewhere not on time, but early. When I visit his family if we say we are leaving at a certain time I know I have to be ready at this time. This is part of being married. Adjusting to other families. But in many ways it is a little easier for me to adjust to his family norm when it involves time than him adjusting to mine.
We had a little tiff because of this over the weekend. Husband and I drove in for a quick visit to see my parents Saturday morning because Husband needed a haircut. Then we were going to go to a quick lunch with my parents and head back because Husband had some things he needed to do later in the afternoon. We only had a short time to be home. We began to have issues though when it was taking Mom awhile to get out the door, therefore pushing lunch back a little bit, and making Husband a little uneasy because he had study plans in the afternoon. I feel very caught in the middle when this happens. I am caught between my husband and my family. Caught between two situations that both make sense. Husband is working on his patience but I realize it is a lot to ask of anyone. He also realizes this is what he signed on for when we got married. But it’s difficult because this requires him to be the one to change because my family simply cannot meet him halfway on this. Mom cannot move any faster and we are truly going the fastest we can.
I guess what I am saying is the nature of my parent having MS is one thing. I tolerate more as I should because it is after all my Mom. But when you add additional people into the situation it requires tolerance and patience from them too. It is not necessarily a natural transition. I know we will get there, but I also know it isn’t easy. We like to say Mom doesn’t have MS, but we have MS. But that becomes a little more complex when the dynamics of the family grow and new people have to interact with our MS. MS affects everyone, not just Mom. It affects all aspects of our lives and it will continue to impact new areas of my life just as I think I have a hold on them.
Do you think it is natural to have more patience with your own family than others? Do you see how this could be a difficult situation for Husband? Do you find it interesting when you find a new situation being impacted by MS in your life?
My parents house is an escape from my 28 year old life. But at the same time it is also a place of the glaring reality of my life as a 28 year old daughter. I don’t live in the same city as my parents, therefore I don’t see Mom everyday. I don’t even see her every weekend for that matter. Because of that I talk to her very frequently, but it also means I am not visually seeing the effects of MS on her life everyday.
So when I go home it is sometimes a tough experience. Tough because it forces me to wake up from this fantasy I am in and enter reality. This reality isn’t the positive phrases we so often rattle off to people when they ask how Mom is: “Mom’s doing so much better;” “Her walking is really improving;” Instead, I can see with my own eyes her struggle to walk, her struggle to move, her cognitive issues that we don’t talk about and the reality that maybe she really isn’t improving. But, the fantasy of Mom in my head is sometimes better than the reality. It is that fantasy that allows me to hope, even if it is just for a short time. Because my harsh reality tells me my Mom has MS and it may be headed somewhere bad.
I am not sure if this is a coping mechanism or just me- but my mind thinks of Mom one way only to find out in person she is different from what I envision. I don’t know if it is okay to live in that fantasy or if I need to focus more on living in the reality.
Do you ever find yourself struggling to deal with the reality of a situation verses the fantasy of it? Have you ever had an issue with envisioning someone close to you as being healthier than they are when you see them in person? Do you think you always need to live in reality or sometimes you need to live in the fantasy to allow yourself to hope?
Good days and bad days. I struggle with this saying even though it puts things into perspective. In my mind this is the kind of phrase said about my Grandmother with Alzheimer’s, not my Mom with MS. It is a phrase people use to speak about their elderly relatives, their aging grandparents, not my 59 year old Mom. But at the same time, it works. It is an easy way to sum up this life I am living with Mom’s MS. It is an easy phrase for me to focus on, so I don’t get frustrated by the turn of events that can occur in one day.
I was home visiting my parents this past weekend. Friday night when I arrived Mom was doing great. Her physical therapist Coach C was there and she was doing her exercises and in a good mood. On Saturday, Dad, Mom and I went to lunch and then Grandpa came over for pizza and to watch college football. Our college team won in a 4th quarter finish after playing horrible the entire time. It was an exciting and fun evening.
But, Sunday was different. From the moment Mom woke up Sunday she seemed off. She seemed to not be moving around very well. Very tired. Just “out of it.” We picked up lunch and took it to my Grandpa’s house to eat before I left town. She was very tired and wanted to lay down. She didn’t talk too much. It was just strange and tough and weird. I was thinking how did we go from yesterday’s great day to this barely 24 hours later.
The only explanation- good days and bad days. I don’t want to admit Mom has good days and bad days. To me it means everyday there is a chance it could be a bad day. I can’t assume it will be a good day. I also have to learn to deal with the bad days. Learn to react, not let them bother me,and not take them so personally. It all ties back to taking life “one day at a time.” By saying there are good days and bad days you are essentially making a commitment to taking life one day at a time. Because you don’t know if it will be a good day or a bad day. But I am selfish and I want all good days. I don’t want the possibility of bad days. I also don’t want to use the same phrase so often associated with people’s elderly relatives. I don’t like Mom being lumped into that category because people so often do it. But unfortunately for me, the bottom line is that’s what this was- it was a bad day.
I need to find a way to not only tell myself this to believe it – Mom had a bad day. It’s going to happen and it’s okay when it does. It’s not the end of the world, it’s just a bad day. There will be more good days just like there will be more bad days. Take it one day at a time.
Have you every struggled with the phrase “good days and bad days”? Do you believe it’s important to remember to keep things in perspective when dealing with a disease like MS? Do you find yourself prone to catastrophic thinking sometimes…where one bad day means a million more bad days? Are you as frustrated with me as I am that I can’t seem to just take life “one day at a time”?