Tag Archives: travel with ms

Be Aggressive. Be Be Aggressive.

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In a perfect world dealing with Mom’s MS would only be stressful because of MS. It would not be more stressful because of others. People around us would cooperate and be helpful everywhere we went, they wouldn’t make comments, give us looks or stand in our way. I learned a brutal reality while we were on vacation last week that it is very much not the case.

In the real world, people stepped in front of Mom as she tried to roll around in her scooter. They would sit and stare at us when we are trying to help move Mom. They slam doors on us. They say rude comments when we are trying to use the scooter through the lobby. People are rude.

The most shocking moment of the trip is when we boarded the airplane second in line behind someone who was so not handicapped the thought of it still makes my blood pressure rage. We flew Southwest Airlines and they select which wheelchair is going to board first based on what method I do not understand. Because if it was by need, we would have gone first. We informed the gate attendant that Mom was going to need a physical lift, aisle chair and assistance to get on the plane. The gate attendant took another woman who had her own wheelchair and her husband who followed behind and they rolled on to the plane and took the number one spot. Mom on the other hand needed to be the first on the plane because she had to use an aisle chair to get to the first row. These people just sat and stared while mom was wheeled in her aisle chair and had to sit in the second row because they had taken the first row on the left, the only side she can transfer to easily.

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I realize there are a lot of reasons I may not be able to see why someone may need a wheelchair. Allow me to explain- How do I know this woman didn’t need this extra assistance and position in line? Because my family was the last off the plane. And after everyone was off and we were waiting for assistance for Mom the flight attendant said, someone left their wheelchair. Someone used it to get on board and then left it. She was trying to figure out who it was and I knew exactly who it was because I had watched this same couple walk off the plane first without their wheelchair. I was livid and kept my mouth shut in offering up the information I had about the owner of the wheelchair. You needed to be the first on the plane in your own wheelchair yet you didn’t need it when you got off? Is this a joke?

The flight attendant also said it is interesting that they usually board about 9 people with wheelchairs and miraculously cure about 4 of them in the air and they walk off the plane. People who just want to be on the airplane first. Can you believe this? I would never even imagine doing something like this but it is happening all over the place on Southwest Airlines. I personally think it was to do with their boarding policy being first come first serve. I need to watch more closely the next time I fly a different airline to see if the same issue exists. As this was my first time flying with Mom, it was the first time I actively noticed this.

So where does Be Aggressive come in? Well in a few distinct instances:

  • The security guard wanted mom to take off her shoes to be wheeled through security. This is actually a big ordeal and painful for Mom- I should’ve said no.
  • We should’ve demanded Mom be the first on board. I guess the reason we couldn’t is because we were focused on about 500 other things at that moment and you are at the attendant’s mercy, Mom has MS- when you are actually handicapped nothing is easy and people should be respectful of that piece of your life. 
  • A man yelled at Mom to slow down in her scooter through the lobby when he was the one who stepped in front of her. I should’ve turned around and yelled back. 
  • On the return trip I was trying to get Mom’s medicine out of her overhead bag while people were boarding the plane, not blocking the aisle at all, and instead of giving me a minute the flight attendant yelled at me that there was no baggage space above. Get a grip jerk! I snapped back I am not trying to put a bag up I am trying to get my Mom’s medicine down and sat down- without the medicine.
  • The police officer yelled at me when I drove the car up when we had arrived home telling me I couldn’t leave the car parked there. I said I had two wheelchairs inside and he continued to be condescending, yelling at me to move it. I yelled (because we were communicating in a loud environment not even near each other) I’ve got a Mom with MS and an 86 year old Grandfather. They can’t physically get out here. So he backed off and said I could have a few minutes.

But still. It shouldn’t get to that. It is just the initial gut reaction society has that you are in the wrong, you aren’t telling the truth, you are taking advantage- guess what society, you could try to help us out just a little bit! Sometimes we are at our wits end with everything we are juggling and all we need is someone to be nice to us and our family. Someone to hold a door open. Someone to help me find room for my overhead bag. Someone to make a funny comment to Mom. Because those tiny things, they did happen during our trip and they may seem insignificant but they meant the world to me and made me feel like we were going to be okay. They made me feel like other people had our back.

I imagine it is because of people like I described above who are so clearly taking advantage of the systems in place for handicap people that those who truly need the assistance have to fight to have it. I say fight to have it because that is how I feel. Numerous times did Sister K and I have to get aggressive with our voices on the trip to get people to move, to get things done and to get some help. It is not in our nature to do that or to respond in that way. We were raised to be polite and not stir the waters until necessary. We are being forced to learn in a strange way how to stir the waters and how to quite honestly, BE AGGRESSIVE, BE-BE-AGGRESSIVE.

Lesson Learned: Look out for others when you are traveling or in daily life. Get out of your own bubble and recognize when someone may need some extra assistance or just an extra smile. It can be more powerful than you realize. And if you are on the receiving end of rude people or poor service with a loved one, get into the habit of fighting back for your loved one. Don’t think about it or think about if you are being rude. Just do it.

I am curious if other people have had similar issues with traveling, people taking advantage of handicap situations or people being rude? Or maybe you remember a distinct moment when all you needed was one person to show you some kindness in a very stressful situation and they did, reminding you that people are good? 

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? 

Change of Plans

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I know it’s been awhile. A lot has happened. For those of you who follow my blog and for those of you who pop in every once in awhile here is a simple but long update:

Canceled Plans:
Last summer I began talking about a cruise my family was going to take. We were going to go on Royal Caribbean Cruise Line, we had booked accessible rooms, I had booked scooter rentals, I had spoken with American Airlines about special needs issues on the plane, everything was rolling on normally…but I was nervous. I kept wondering if we were taking on too much. Taking on too much with this vacation- to put it simply, Mom has lost the ability to walk. As we got closer and closer to the cruise departure day, departure day being next Friday June 7, I kept having this small voice inside wondering if it was too much…I would then quiet the voice by rationalizing my way out of it…then the voice would re-emerge…and I would quiet it again. But in the midst of this I was praying. Praying that if we weren’t supposed to go on this cruise it would be revealed to us and without that we would just keep moving ahead.

Last Saturday that decision was made. Our Grandpa (Papa) fell in the middle of the night in his house, broke his hip and to have a partial hip replacement. His doctor said he could not go on the cruise. This then set off a sort of chain reaction where Mom did not want to go, Dad could not go if Mom was staying behind and then for Husband, Sister K and me to still go did not seem right. It seemed like a different vacation and it would be sad to go thinking of all of us not together. I also could not stop thinking, we are supposed to cancel. We are being told we need to cancel. It’s too much. Obviously too much for Papa but silently too much for Mom.

I am not in any way saying this happened on purpose, but I do believe it gave us an answer we had all been fighting out of our heads for awhile – We are not supposed to go on the cruise. Luckily our travel agent had convinced us to get travel insurance. I am in the process of gathering invoices, payments, etc but we will submit them and be able to get our money back.

But the lesson in all of this and Mom’s MS has been very clear to me- I can no longer plan ahead a year in advance. No longer assume Mom will remain the exact same. A year ago Mom had just gotten out of the hospital and was going into a rehab facility. Our goal at that point was to get her back to walking on her old 4 wheeled walker ‘Pinky’ from the standard walker she was using. A year later our goal is simply to get her walking.

Understanding While Not Understanding MS
Seeing that part of MS has been difficult to me- difficult because part of me believes she could try harder and walk because people tell us all the time of stories of this happening. The other part of me does not know if that is how this works and not walking is just another step. Regardless it is difficult to see the added stress this has added to Dad. It worries me in many ways. The amount of effort being exerted, the lack of sleep to help Mom up multiple times in the night, the nonstop nature of his days- not even ending when he sleeps. It’s difficult.

Process Overload
As you can see it’s been a lot. A lot I am processing and this is the first time I am writing it all out. The cruise cancellation is very fresh..less than a week to be exact. The reality of not going mixed with the reality of the unpredictable nature and path of MS is all slowly coming into place.

A Quick Life Update on Me

  • Husband graduated with his MBA, was offered a job and we are moving to a new city- still in the same state, about 3 hours from home instead of the 1.5 I enjoy now. Sister K will continue to live here so this will be adjustment for us.
  • I recently got a job offer in our new city and am going to be the new Public Relations Manager for a nonprofit organization. I start in three weeks and I am very excited! Knowing how difficult job searching is and having gone through the difficulties of it every other time I have searched for jobs before, I feel incredibly fortunate and blessed.
  • Also Husband and I adopted a 6 year old cat named Chloe. She will probably make an appearance on here at some point- we are pretty obsessed with her 🙂

I thank you for continuing to read as I sort through Mom’s MS.

Have you ever had any vacations canceled? Do you have any thoughts on the path of MS? How have you ever all of a sudden had a big reminder that life really is day to day, especially with MS? 

Is It Us or Is It MS?

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Is there a way to walk your Mom with MS into a social gathering and not be the center of attention amongst friends? Or is this just something that is going to come with the territory now? It is something I am sitting here wondering today after a wedding this past weekend.

Halfway through, Mom needed to move from the table to her wheelchair to go to the restroom. So people gathered to help but really we didn’t need it. And the extra people just stared. Finally Dad said, why don’t ya’ll go dance or something and they quickly walked away.

Later Sister K took Mom into the restroom and after being gone for awhile I went in to help out. But people wondered where we were. Our absence created attention.

People wanted to ask Sister K, Dad and Me how Mom was- and that created attention. For the first time though, that part didn’t bother me. Maybe you could call it growth…but I didn’t get angry or irritated. I talked honestly to two of Mom’s close friends and one of their daughters. And they listened. They heard what I had to say- they admitted it is a lot for Sister K and I to be dealing with, they expressed they are worried, they wondered if there was more to be done, and I listened and I answered…I was honest.

But now today I can’t help but wonder if I shouldn’t have said anything at all. My family is a tight circle and a quiet bunch..and we are getting quieter as far as Mom’s MS is concerned. But at the same time, MS is not exactly a disease you can keep quiet- especially when people witness the changes in Mom with their own eyes and how those changes seem bigger every time they see her. So what do you do? What do you say? These friends of Mom’s are close to her and important to her, therefore it gets sticky. I don’t walk around telling anyone and everyone- and sometimes I don’t believe people’s intentions for wanting to know are good. But in this case I did.
So I struggle with how much do you say/how much do you reveal. Dad has said he doesn’t want Mom to be stuck at home forever…but if we are going to do things where we take Mom to events like this are we then also opening ourselves up for questions. Maybe we invite it upon ourselves. I am not sure exactly.

Does your family have any similar experiences with this or do you think it could just be a symptom of my family? Is it possible to hide what is really happening with a progressive version of MS or are people just going to ask questions? Do we possibly just need to understand this is what comes with the territory of taking Mom out considering the stage her MS is in currently?

A Shower of Nerves

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It’s Friday and it’s a Friday where I am heading home to my parents house to visit for the weekend. Mom and I have a baby shower to attend tomorrow for a childhood friend of mine. It will be a solo event for us. Sister K is not coming into town and Dad doesn’t attend too many baby showers…

But I am a little nervous and I am not sure why. It is always strange to go to things like showers with Mom and see people from the past. They know Mom has MS but it’s still hard. I was figuring out what to wear and was even taking into consideration wearing heels vs flats since I would be pushing a wheelchair. I am going to be solo responsible for Mom and I am a little anxious about it.  Just the dynamics. Getting her into the restaurant, where we will sit, will people stare at us, how will this work, etc. Mobility is not as easy as it used to be for her making these things a little more complicated for us. I am sure it will all be fine, just like it always is; there will even be minor hiccups in the process but they will be fine too.

Today though, I can’t predict what will happen or how this will play out. This is a part of Mom’s MS I struggle with a lot. I struggle with my desire for the simplicity of how things used to be or how things are in comparison to other friends of mine attending showers with their Moms. I also get a little more nervous when I have to do these things on my own compared to doing them with Sister K and getting to “tag team” the situation.

So there it is. Here comes the weekend. I can see it on the horizon. Hope you have a great one! Thanks for sticking with me as I do my best to create my own manual for dealing with Mom’s MS.

Do you think I am thinking too much about the weekend ahead and need to try to just go with these things as they come? How do people react to you when your circumstances change from how they used to be? What do you have planned this weekend?

“It Bothers Me”

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To start I have to say if you have been impacted by Hurricane Sandy in any way please know you are in my thoughts and prayers. I have been following the pictures of the devastation and flooding on twitter today and words can’t describe it. It is truly unimaginable. 

Weather is interesting in that regard. The storms of the weather and the storms of our personal lives. I think I could describe my family’s relationship with MS in that way. We go from blue skies to a turbulent thunderstorm in a split second. As I mentioned, Friday evening we were going to celebrate Mom’s 60th birthday with a nice family dinner. After Husband, Sister K and I arrived home we quickly changed clothes and got ready to leave. Husband left separately to go pick up Grandpa and meet us at the restaurant. Everything seemed to be going smoothly, until the rest of us needed to get in the car.

Getting Mom into the car has become a very stressful exercise. I think Dad is more used to it because he is around it all the time and deals with it everyday, but to be honest it unnerves me. I have to shut my mind down and exit the situation. Not allow myself to think about what is actually happening: Mom holding on to the car and struggling to angle herself the correct direction to sit down. Mom plopping/falling/finding a way to seat herself in the front seat of our family Camry. Then comes the real challenge of getting Mom’s legs into the car. Dad is bent over grunting as he lifts Mom’s legs and tries to swing them into the car. Mom yelling at him at certain points because it hurts, he is doing it wrong, etc. Dad getting frustrated. Mom getting frustrated. Feelings of distress and irritation at the situation. Then they have to do the other leg. Sister K stood by frustrated because she believes Mom isn’t trying to assist Dad and could do more. I just zoned out. Then it’s over and we move on as if nothing has happened.

But it did happen. I watched the entire thing play out. I could try to assist but sometimes it almost makes it more difficult. Mom gets more frustrated. We don’t know the “routine” involved. So we wait and let them do it. Then we move on until the next time. And then the same thing happens again.

I don’t really know what to think about all of this. I know families have their own routines of dealing with various things like this. Mom and Dad seem to have theirs figured out. But the fact that Mom’s ability to get in/out of the car doesn’t seem to be improving bothers me. It bothers me that my parents aren’t taking the SUV they were so proud to drive. It bothers me that these struggles extend beyond the car. It bothers me to watch Mom really struggle walking around the house, having issues picking up her foot just to take a step. Basically I feel like none of this is getting better because in all honesty, I don’t believe it is. To other people I give my canned fake answer that Mom is improving, doing physical therapy, she’s doing great. I say it all with a smile. But here, I can tell the truth and the truth is I don’t believe it’s getting better. I honestly think it may be getting worse. And it bothers me..for so many reasons I can’t put into words…and at the same time can’t figure out how to handle all of this. Because Saturday evening after dinner I got frustrated watching Mom walk around the living room and had to go upstairs. I had to leave the room. It appears my current way of dealing with this is mentally or physically escaping. I know that is wrong, but I don’t know what is right.

Do you think there is a better thought process I should have in these situations? Do you ever struggle to put into words things that bother you? Do you think it’s tough to admit that sometimes people aren’t getting better? Have you been impacted by Hurricane Sandy?

A Family of Tortoises

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We move slow. Like really really slow. If you compared us to The Tortoise and The Hare, we are a family of tortoises. This requires patience. It requires me to shut my mind down and not be in a hurry. It requires some practice too because slowing down doesn’t just come naturally.

Saturday after our football game, Sister K and Husband headed back immediately. Husband had to study and Sister K had evening plans. I stayed behind with Mom, Dad and Grandpa because I didn’t have anything going on that evening. There are two ways for Mom and Dad to get home and one of them would pass through our city so they could drop me off en route home. This way I could drive the majority of the way back and give Dad a break.

As the four of us walked into a restaurant to meet up with my Godfather and his wife after the game, I noticed how slow we were moving. As I helped Mom to the restroom and back to our table, we moved slow. Then en route on the way back we made a restroom stop at McDonalds and this ended up being about a 30 minute break for us.

I did a good job of not getting frustrated. I think I mentally was just thinking, this is what it is. This is what it is. Getting frustrated is not going to make Mom move faster. Mom is moving as fast as she can. She was worn out by the time she had walked inside McDonald’s with her walker and back out to the car. I saw it in her face how much effort was involved for something that many people take for granted. But even though she is moving slow, in the world of MS the important piece is she is moving. And for that I am thankful.

But it’s still hard. It’s hard because you have to desensitize yourself to your surroundings. Stop watching the people who are able to get in and out of McDonald’s in 5 minutes. Stop thinking of the clock ticking by into the late night while you are tired and patiently walking slow with Mom. Making sure your face stays pleasant during all of this patient waiting. Continuing to small talk with Mom so she doesn’t feel awkward as she moves so slow. It is effort for everyone. For Mom and for all of us. In a way. it is more effort to move slow than to move fast.

But, no matter how slow we are moving, we are moving. Sometimes it allows you to really pause and absorb the moment. Sometimes you are fighting everything within you not to just throw your hands up in frustration. You have to control your mind and mentally let the thoughts that come along with regular day to day life disappear. The impulses you have to hurry up and move fast, you have to let them go. And I was proud of myself because Saturday evening I was able to let my inner controller/planner go and just exist. Knowing eventually we would leave McDonald’s. No matter how long it took eventually we’d be outside. But most importantly was that Mom was doing this on her own.

Do you consider yourself a tortoise or a hare? Do you struggle with moving slower when you are used to moving faster? Do you ever allow your mind to mentally zone out of a situation to better deal it?

Football and Accountability

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College football season has begun. I am not a huge football fan, even in college the games were more of a social event than an intense sports experience for me. I went to the same college my Grandpa went to. He and my Grandma had season tickets to the games all their lives and this became very special when I started there as well. The funny thing is I had never intended to go to this university- Mom and Dad didn’t go there and I was considering other schools. I had applied, was accepted and just decided in March of my senior year I would go. I based this on deciding one college I was considering was too close because it was in the same city as my parents and the other was in another state and too far away. This one seemed like the perfect compromise.

That decision began a series of memories I could not imagine my life without. When I started college I would visit with my Grandparents before the games. When Sister K decided she also wanted to go there Mom and Dad also bought season tickets. They would come up with my grandparents and visit with us before the games. I only experienced that for one year because Sister K and I only overlapped in college for one year- I was a senior and she was a freshman.

Two years ago my Grandmother passed away from Alzheimer’s and around that time Mom’s MS symptoms were making it more difficult to attend the games. So Sister K, Husband and I started going with my Grandfather. He would ride up on a bus chartered by the school or we would go home for the weekends and drive him up and back.

Last football season Mom and Dad didn’t go to any games. It became too much with all of the walking and our student center was being renovated so there wasn’t a place for her to sit and watch indoors with Dad. But now our student center is finished and tomorrow we are all going to the game. Mom, Dad, Grandpa, Husband, Sister K and Me. Mom and Dad won’t go to the game but will sit inside the student center to watch. We’ll wheel Mom around in her wheelchair and she will love being back in the middle of the game day atmosphere. More than anything we will be creating new memories.

The day will probably bring some challenges for us. I am sure there will be new things to learn as we navigate Mom around our college campus, figure out the best place to eat for everyone to feel most comfortable and get Mom and Dad a nice spot to sit and watch the game at…I have given it just a “little” thought. But at the same time I am excited to share this with everyone again. I am hoping I remain patient and am able to roll with any bumps in the road that may occur along the way. I am writing it here as a way to remind myself to be patient and avoid feeling overwhelmed and frustrated- to hold myself accountable.

What are you plans for the weekend? Do you like college football or ever go to any football games of any kind? How do you hold yourself accountable when trying to change?

“Ladies who lunch”

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A rollercoaster weekend. I am beginning to think I might slightly live a rollercoaster life. My weekend at home was filled with the highest of highs and the lowest of lows. Friday was lovely. Saturday night was tough. Sunday was a day of recovery. In that sense it was like a rollercoaster. Started out climbing the big dip, then fell down the big dip and then recovered on an easier curve.

Friday Sister K set out on a mission to have a wonderful and fun day with Mom. A day in which MS is there but not the center of attention. A day in which we focus on our relationship with Mom and what it has always been instead of focusing on the stress it is under at times. We wanted to have lunch and go shopping. Thinking through this there may have been a time where we would have gone one place for lunch and another for shopping. We realized the less we had to get Mom in and out of the car the easier everything would be on her and the more relaxed she would be. So we decided to have a delicious lunch at the Neiman Marcus cafe. Sister K and I ordered mimosas to celebrate the occasion. We settled in and all referred to ourselves as “ladies who lunch.” There was fun conversation but most importantly we were having a memorable day- just Mom out with her girls. Like she has done so many times before and like we fight so hard to continue to do. After salads and dessert we headed to shop- Forever 21 and Loft.

Forever 21 made me laugh. Sister K loves Forever 21. I do find good deals there on clothes but I can’t stay in there very long- the store stresses me out. But after selecting some tops/jackets to try on Sister K and I found a corner in the store that wasn’t crowded, parked Mom in her wheelchair and proceeded to try the clothes on over our own clothes. I laughed. Part of me felt embarassed. The other part of me didn’t care. That part of me said until someone comes over here and tells us otherwise we are going to continue layering on 3 layers of clothes and not going into a dressing room. With Mom’s MS we live by our own rules now and the rules we live by are all centered around what is easiest for us as far as Mom is concerned. It’s time I really begin to focus on that and not my embarrassment I am prone to at times.

Then we headed to Loft. It was almost like night and day. We wandered around the store collecting clothes to try on. We had them strung on Mom as she sat in her wheelchair since we needed our hands free to push. It was another sight to see. Loft was so accomodating and gave us a huge handicap accessible dressing room. Sister K, Mom and Me in a dressing room has always been a hilarious time and this proved to be no different.

It was a day of lunching and shopping. A day of doing our favorite activities we have always done but modifying them to fit our current situation and needs. I realized things are not going to be the same they were. Activities take more planning and more thought. They require more coordination in the moment. It wasn’t as stressful of a day as I think I had envisioned. I think the fact that Sister K and I were there together helped a lot. We tend to be a calming force for each other lately. But the main take away that I continue to need to be reminded of again and again: Mom is still Mom. Our mother/daughter relationship is still there. And because I know how these moments don’t come around everyday I know to cherish the memory of our “ladies who lunch” shopping day more than I might have before. In my mind it was a perfect day with Mom. A day which the puzzle pieces fit together perfectly. A day that in my heart I didn’t want to end.

Have you ever shared a perfect day with someone you didn’t want to end? Do you cherish memories of these days or tend to take for granted they will happen again? Ever felt a rollercoaster of emotions in a small 3 day time period? More on that later this week.

The Value of a Change of Scenery

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I visited the parentals this past weekend. I headed down Friday after work and returned yesterday. I debated going a little bit but in the end decided it’d be more fun than just hanging out by myself in my apartment for the weekend. I needed a change of scenery. I needed it for myself.

I also wanted to go to see Mom. I can understand more how she is really doing when I see her in person verses hearing about it from Dad. Saturday Mom had a hair cut so Dad and I went to lunch while waiting to go pick her up. When we picked up Mom she looked great and was in such good spirits as Dad wheeled her out. I always think it’s amazing what a hair cut can do to give a boost to anyone. To keep the good spirits going, I immediately suggested we go to Nordstrom’s because they were having their big Anniversary sale. I knew it would really be a good pick me up for Mom to go to the mall and wander around. So we did.

As I was pushing her inside we were surrounded by the shiny tile floor, the bright lights and the clothes…Mom immediately said, “Oh I could just cry, you don’t know how happy it makes me to be inside of a mall.” It was a moment that most people wouldn’t pay much attention to, just walking inside of Nordstrom’s and focused on their destination. But for us this moment wasn’t about the destination but about the experience. It made me pause and truly appreciate this moment with Mom. A moment I would have normally taken for granted and not even paid much attention to that turned out to be a moment that meant so much to Mom.

Mom has always been very active, running errands and driving us around from place to place. In many ways MS has taken that freedom from her. Losing that has been difficult and I am now realizing how difficult it truly is. We try to take Mom places but many times she would prefer to just stay home. There are a lot of variables in trips outside the house that make her nervous and all of these variables are eliminated simply by staying home. But at the same time staying home is not uplifting for Mom. It can in many ways put her in a cycle of being very down about life.

I am not going to lie and say that doing this is simple. The process of the mall and then going out to dinner afterwards was actually very involved. Getting mom in and out of the car, in and out of the store, in and out of the restroom, there is a lot there. It isn’t easy. It requires a strategic balance between different levels of concentration and still maintaining a fun relaxed mood at the same time. I am learning to navigate not only places but also how navigate my mind in a calm way under stressful moments to improve Mom’s experiences in places. I am also learning in a big way that sometimes the best things in life are the ones you have to work for the hardest. In a way some of the most positive memories I can create with Mom right now are the ones that require the most effort on my part. We still have a lot of fun inside our home but activities outside our home can really lift up the entire family.

In a round about way I realized that in the same way it is important for me to personally get out of my apartment and go places to socialize, it is equally if not more important to make sure Mom is also. It doesn’t have to be everyday or even every weekend but it needs to happen. It’s important for Mom and it’s important for us. The bottom line: it’s important.

Do you recognize in yourself the need for a chance of scenery sometimes? Do you understand the balance between making sure you are having a fun time and concentrating on the task at hand? Are you hitting up the Nordstroms Anniversary Sale?