I mentioned last week my family is planning a big cruise vacation for next summer. I knew the planning would be an interesting and somewhat challenging process- I just didn’t realize it would happen so soon. There have been many decisions to be made- picking an itinerary, selecting the best cruise line, selecting accessible rooms, etc. We have never done a cruise so it is already a new experience but doing it with Mom’s MS adds another level of new to this as well.
We decided to work with a travel agent who is also a family friend. This has been a lifesaver already. She knows Mom’s situation personally so I know she is personally looking out for her. She has brought up issues and ideas that I had not thought of and is working through ways to solve them.
For instance we have to purchase insurance. An insurance policy that covers not only health insurance but a sort of protection since everything is prepaid in case we have to cancel our trip, lose luggage, miss our flights, etc. But you have to read the fine print. Some policies will only cover cancellations because of illness if they occurred 60 days prior and are not a pre-existing condition. If Mom has a flare up or relapse right before, some policies won’t cover it. Through our travel agent we have found a policy that meets these requirements but with a little extra cost. Check. We had to book rooms to reserve the cruise. The rooms need to not only accomodate Mom’s needs but also accomodate our family too. After searching around on the cruise layout I found an accessible room that connects to another standard room. There is only one option like this on board. The cruise line did not offer this up initially but after some extra work on my part I was able to find it. Check. Next up will be contacting a scooter assistance company. I was unaware but there are services that will drop off a scooter for Mom at the pier of the ship and pick it up at the end.
Because Mom’s MS is fairly new to our family we don’t have this down to a science like I am sure many other families do. It is new to us and requires a step back and lots of thought. I am enjoying the planning but want to make sure I have everything figured out the best way for Mom. It is definitely presenting some new challenges I hadn’t thought of- at the same time it is good for me to know that I can work through these challenges and successfully find a solution. It’s empowering and makes me feel like we have control over our fight with MS when I struggle so often feeling the other way around.
There have been a couple moments when I have this small worried voice inside saying “Are we taking on too much? Is this worth it?” Then I fight it back down by saying yes, yes it is. This is not only important for Mom but it is important for our family. It is our way of not only saying but showing that our life and activities will not come to a halt because of MS.
To say this will be a great learning experience is an understatement but I am looking forward to sharing what I learn with all of you. I think that’s the best way to support each other- showing how we not only deal with the challenges of MS as a family but how we overcome them.
Do you ever feel overwhelmed by trying to not let MS prevent you from doing the things you and your loved ones enjoy? How do you fight through that and quiet the voice of worry inside? Thank you for reading and for your comments, they mean so much. I feel as though I have a virtual support team out there of people nodding along with my words.
My family attended the Michael Jackson The Immortal World Tour by Cirque Du Soleil recently.
Sister K and Mom sitting in the handicap accessible seats
We have always enjoyed going to shows but this was the first time we had done something like this with Mom’s MS the way it is now. Mom falls much more under the handicap accessible category than she used to and that presents new challenges for all of us. We purchased tickets in the handicap accessible seating for the first time. There were 2 tickets there and then 3 a few rows behind together. Dad dropped us off at the entrance to the venue. The handicap parking was full so he had to park elsewhere. Sister K and I got Mom inside and situated only to find the handicap bathroom stall was out of order. At this point it literally seemed like there was one thing after another. There was a moment when I saw some women in the bathroom line watching Sister K and I assist Mom into a normal stall- I was filled with envy. How easy for you to be here tonight. To walk in, find your seats and just relax and enjoy a fun-filled evening. Of course we had the exact same experience but just had a few obstacles getting to that point. I am disappointed I even had that thought at all. I have to stop comparing our situation to other people’s in moments like this. It isn’t healthy and it makes me more irrtated inside.
Sister K sat with Mom during the performance. I sat in the other seats with Dad and Husband. It was easier in case Mom needed anything for Sister K to help. In the end it was a wonderful night that ended with us playing Michael Jackson songs the entire way home along with stopping for some drive through ice cream. Most importantly it was very uplifting to get Mom out of the house and go do something different with her.
But it is tough. It definitely takes some effort to remain active as a family with Mom’s MS. Nothing is easy anymore and nothing is done quickly anymore. You have to anticipate and expect the unexpected and know things will most likely not run smoothly. Plus we are new to the phrase handicap accessible. New to knowing what our rights are, what we can demand, etc. For instance when we realized the handicap stall was broken we were told we could use the family restroom. There was a line for it but later after waiting in the line we were told we have priority. Now we know. We also now understand how handicap accessible seats work at an arena. (They are great by the way. I was really impressed.) Everytime we do something like this we learn new tricks which make next time easier. It is hard though because it requires me to be very “go with the flow,” to adapt quickly to any changes and not let it bother me. I have said it over and over on here- I am a planner. “Go with the flow” is hard for me. These situations also require me to fight urges to get stressed or uneasy and keep things calm and steady for Mom. I know she watches closely for my reaction in certain situations. I think she knows I am the first to break if there is something to really be stressed about. I wear my emotions on my face. Sometimes that is a positive but sometimes it is a real negative.
My family has made a committment to not passing up opportunities like this because Mom has MS, even though it may be more difficult on us. These moments and memories are as important for Mom as they are for us. They change things up, they are a break from her same routine and they get us all out of our comfort zone. I think in many ways conquering nights like these teaches me a lesson too. Just because you may encounter one minor setback doesn’t mean a domino effect of setbacks is about to occur. It is teaching me to keep my cool, to think quickly and calmly under pressure and to just live in the moment. Focus on Mom and focus on the fun. I need to tell any axiety inside to Beat It.
How do you react when you are stressed? How do you handle minor setbacks when you are in a situation where you have little control? Do you believe it is important to not let MS control our lives and continue doing the activities we want to do? Have you seen the Michael Jackson Immortal Tour?
Recently Sister K and I attended the Gavin Degraw and Colbie Caillat concert. It was at an outdoor venue where you sit on blankets enjoying food and drinks. These tickets were my birthday gift from Sister K and we had been anxiously awaiting this concert for awhile. It was a lot of fun and if you have a chance to attend wherever you live I highly recommend it.
Sister K on our blanket aka my freshmen year college dorm room comforter. Gotta love denim.
Enjoying my margarita and listening to some tunes.
Gavin Degraw has a song on his new cd called “Soldier.” You can find the lyrics here. The song has a lot of meaning for anyone but Sister K and I have found it has a lot of meaning for us right now. It has to do with being there for someone but moreso than that it has to do with living up to the promise of being there. There is a line when he says that’s why it’s called the moment of truth.
Lately I have given some thought to the relationship Sister K and I have. We get asked by parents of girls how we became so close, what was the secret? The secret is I don’t know. We fight harder but love harder than anyone I know. We have always been this way. But looking at the way our life has gone up until this point I have to wonder if in many ways we were given each other as siblings and our relationship was being prepared for the greatest challenge we would face together, Mom’s MS. Being a child of someone with MS is not for the weak. It’s only reserved for the strongest of families and the strongest of children. No matter how old I get, I know that the spirit and heart of a family resides in its children. This also means that our family needs Sister K and Me now more than ever. To bring some spunk, to bring some laughter, to bring a distraction, to bring energy when Dad is spread too thin and Mom is feeling like she can’t do it. In many ways we have become our family’s “soldier.”
Sister K and I stood up and belted out these words at the concert. We have listened to this song repeatedly on the cd and practically have them memorized. It is a song that couldn’t have come along at a better time for us. In a sense this song is us.
Do you have any relationships where you are a “soldier” to someone else, whether it’s family or friends? Do you believe in the power of children no matter what age to add a particular energy to a family? Have you heard this song and listened to the lyrics? Do you like Gavin Degraw and Colbie Caillat?
Encouragement. I think it is one of the biggest pieces to helping Mom deal with MS. But it is also one of the biggest puzzle pieces too. What is the right way to encourage Mom? What do we say to keep her going? To keep her working hard? To in a sense keep her moving?
After Mom returned home from rehab, her doctor ordered 4 weeks of home healthcare coming out to our house. A physical therapist comes 3 days a week and a nurse also comes to check her blood pressure. It is a tedious process because people run late, times get changed or canceled, plus we have these 2 dogs at home that we have to corral while we have these people in our house working with Mom, not there to play with them. It is an ordeal for everyone. It is part of the reason Sister K and I went home last Friday so we could help out while the therapist was there.
But it’s been hard on Mom. She does her physical therapy and then ends up in pain in the evenings. She described it as a strong aching. It is a pain though that makes her want to quit. To quit physical therapy and just have Dad work with her. Dad has discussed that this is not an option while we have these services available. He is simply spread too thin to also be responsible for this. But the point is Mom has to keep moving. She wants to see faster and bigger results. When she doesn’t she wants to quit. It is hard for me to relate to because typically if you work out everyday you get stronger and stronger. She isn’t seeing this level of progress. She has improved greatly from where she was just 3 weeks ago but it is still small, baby step improvements.
All of this is tough though. Sister K and I were on the phone last night just thinking now we get to deal with this hurdle. It’s as if the hurdles with MS do not end. You just bounce from one to the next. I also don’t know what the right thing to say is, what does she need to hear. The strength she has to find has to come from within. We all know that. I wish she was naturally more of a fighter in these situations but she isn’t. It’s not her fault but she has never had to be and that’s not in her nature. But it makes it even harder when we hear about people who have MS and are fighting through it. Even though we also know MS and the people it affects cannot be compared. There is no comparison in them, no two cases are alike. But as a daughter it is hard to sit by and watch Mom not have the fighting spirit she needs. Sometimes it is there but sometimes it is not. And when it is not there, it is not fun.
So add motivational speaker to the many hats Sister K and I are wearing. Sometimes it is a positive conversation and sometimes it is a really tough one. All we can do is pick up and move forward. Each day is a new day. Some of these days will be easier on Mom than others. That’s just that way it is.
What keeps you fighting? What makes you feel encouraged? Do you believe a fighting spirit has to come from within or is it something that can be influenced by others? How do you encourage people in your life?
I didn’t post on Friday. I tried. But I couldn’t figure out how to express how I felt. I was home with Sister K and Mom. Dad was out of town and asked if one of us could come in Thursday night to stay with Mom while he was gone. Well one of us quickly became both of us. We were quickly calling it a sleepover. Mom is okay by herself for periods of time but nighttime can be more challenging with getting back into bed. Plus it is just nice knowing someone is there with her in case she needs something.
But Friday I was feeling frustrated. Frustrated with Mom. I couldn’t figure out how to express it. I knew it wasn’t Mom’s fault. I knew it was just the nature of MS but Sister K and I were frustrated. We really wanted to take Mom shopping with us. We thought it would do her so much good to get her out of the house. We had strategized and devised a plan to make this as simple as possible. We would only go to one store, Loft. It is a big store, very comfortable for Mom to be in and plus they were having big sales. We thought we could take Mom in her wheelchair just to have a fun experience out of the house. Keep it simple. But when it came time for it on Friday Mom didn’t want to go.
It was tough. Mom was tired from her physical therapy. She was also nervous about getting out of the house without Dad around. It was hard on us because we had been looking forward to this. I know this is one of the tough parts of MS- how tired it makes Mom feel. But it’s just so frustrating. Sister K and I don’t know how much of this is that and how much is fear. We assume it is a combination of both. We respect that and we are trying really hard to go with the flow on all of this. Coming up with new activities, making our time around the house together more fun but the hard part is adapting to Mom not being around for the activities she has always done with us. In a way our time spent with Mom has always been “on the go.” She was a stay at home Mom so to say she was there for everything would be an understatement. It is hard not having her around for these simple things she has always done with us. People might think it is odd that at 28 and 25 we still want our Mom around to go shopping with, but we do. It’s harder when we know she is at home and we are out without her too. And it is hard watching MS take that away from us. It is hard dealing with it. We ended up inviting Papa over and we picked up pizza and salads. We are becoming more of a food to go instead of a restaurant family these days too. Another transition.
These may seem mundane things to be sad about missing out on but to Sister K and me they are tough. Shopping and restaurants. These are two things we have always really enjoyed doing with Mom and they are two things that are tough on Mom right now too. Simple activities I took for granted that have changed. I don’t want to sound selfish. I struggle with how to not come across that way. I am trying to go with the flow with these changes, but some moments are harder than others. Friday was one of those days.
How do you accept changes in what your family members are capable of doing compared to what they used to do? Do I need to truly embrace a “go with the flow” attitude in order to truly embrace these changes? How are you staying cool today? It is 100+ where I am.
I love to travel. I wish I had an unlimited amount of money AND an unlimited amount of vacation time to do it. Both are big hinderances to the actual travel part. My family enjoys taking vacations together. Even to this day, Sister K and I still share a hotel room with my parents. The only thing that altered this was the addition of Husband into the family. Now we get two rooms. I think Dad’s reasoning was always why would he pay for two rooms when we all fit into one. Sister K and I laugh about this when we hear about our friends whose parents don’t share rooms with them anymore. But my memories of all of us sharing one hotel room are some of my favorite vacation moments. Waking up Mom in the middle of the night for snoring, getting mad at Dad when he can’t do anything right surrounded by a small room of women, and the mountain of clothes Sister K and I accumulate on top of our luggage.
My family is talking about taking a big family vacation next summer. We haven’t taken one in awhile and next summer seems like an opportune time to do it. There is a catch though. We have more factors to consider now. We don’t allow Mom’s MS to inhibit our abilities on vacations but for the past few years we have been going to the same places that are familiar. The same city, the same hotel, the same environment. It limits the stress that can occur when you are dealing with the unknown of your surroundings. It lessens the need to stay two steps ahead at all times.
But, this time we are looking at something different. We are looking at a European cruise. We have never done a cruise but I think it could be very relaxing and simple for Mom. It’s difficult though because while we do not consider Mom to fall 100% into the handicap accessible category she does about 75% right now. This makes things tough because in our minds there are things she can do, but in reality with the way cruises and trips to various cities are designed it may not be the case. We also realistically just don’t know where she will be with her MS a year from now. Our hope is for improvement. The dream is to be walking without a walker. For now our immediate goal is to get her walking back on “Pinky” her 4 wheeled pink walker.
Dad told me I was going to be the one planning the vacation. I typically am the “planner” of my family but this time I have official responsibility. Normally I just self-appoint myself to this role. I have started doing some research. MS though adds another layer to the planning that I am not used to. Typically I would get online to explore and not think much about the landscape of places, how to get around or potential mobility issues. I am now finding myself asking these very questions. I have been told a cruise can be very relaxing, handicap accessible and Mom would most likely really enjoy it. I also know cruise passengers come in all shapes and sizes and they have assistance to accomodate those needs. I am sure it will all be fine. But these are just thoughts I am having. New concerns. New issues. New things I haven’t had to deal with before.
I have researched online about tips and advice on cruises and people with disabilities, specifically MS. There isn’t a ton out there from people who have gone through it. The information I have found doesn’t seem very relatable given the the unique aspects of MS.
So today I come to you for advice:
Do you have any experience vacationing with a disability or with someone who has a disability? Do you have any experience with this on cruises? Things to avoid, things to look for? And most importantly regardless of a disability, have you ever gone on a cruise- Do you have any recommendations?
6.16.12 This is a visual into Father’s Day. A day of relaxing and fun and enjoying our time together at home. In a way this is a visual of how we live with MS.
Mom sitting on the patio chatting with Sister K. Next to her you can see our spoiled dachsund Lucy floating on a raft as Dad swims by.
Dad, Papa and Me devising a dinner strategy. Dad pouring drinks, Papa grilling and Me bringing out our not so homemade side dishes.
Here is a glimpse into my family. A glimpse into our spirit. A glimpse into where it comes from and the energy it gives us. Energy that keeps us laughing and keeps things fun. Our high maintence dachsund who enjoys floating on a raft. My blue mumu dress seen on me above. Dresses that Sister K and I have recently started wearing when we are hanging out at home. They add a festive element to whatever we may be doing regardless of it being Father’s Day. Mom’s mailbox- the name I have given the basket attached to Mom’s new walker “Walkie” because it carries things around for her.
These things may seem dumb. They may not even be funny to anyone else but they symbolize the heart of my family. They are silly but important moments that keep us laughing and prevent us from taking life too seriously at times. Because at times the topic of MS is serious. It is so serious it can become overwhelming. It can bring us down. Instead we use these small things to keep us laughing, keep things light and keep our energy up. That walker in the picture above, a walker I was nervous about entering our family at one time- it may seem odd to say this but it is right at home in the middle of our family. Something we accept and look past with a smile. But I am proud because to me these pictures show we are still the same family regardless of MS- craziness and all.
Does your family do silly things to keep the energy positive? How have you adapted to changes in lifestyle because of MS? Do your dogs float on rafts?
I have had an outpouring of support on my blog today that I have not seen before. I am so thankful. I owe a lot of that to my regular readers out there. I also owe a lot of that to Patrick at Caregivingly Yours for the wonderful post he wrote about my blog today. A blog that has become more than a blog to me. A blog that has become a safe place to share my feelings, express the tough moments and remember the importance of the fun times.
When Mom was diagnosed with MS I headed straight to google. I am from the Millenial Generation meaning all of my problems and questions are supposed to be solved via google. But for the first time I couldn’t find what I wanted. I would google my mom has ms, help my mom has ms, what do I do my mom has MS, how do I cope with my mom’s MS and I could never find what I wanted. What did I want? I wanted to find someone I could relate to. I wanted to find someone who was similar to me. Someone who was close to their family, someone who understood the impacts of this disease on a family but also someone who was dealing with it. I wanted to know how they got through it? What did they do? Had they ever felt the way I did? In a sense I wanted a manual. Because like the phrase at the top of my blog says, “life didn’t give me a manual when it gave my Mom MS.” I would find resources for people with MS, people who had spouses with MS but nothing from children whose parents had MS. I was frustrated. If I did find something it was an angry message board post about how much they hated this disease and the awful impact it had on their family. I could relate to those feelings but there was nothing else. No sign of hope. No message of here’s how my family is dealing with it. It made me feel even more alone than I already did.
I didn’t want to feel alone anymore. I thought surely there has to be other people out there like me. People who are close to their family and just want someone else who can relate to what they are going through. The challenges and the tough moments but without forgetting about the laughs and the fun moments. My hope when I started this blog was to find a way to positively express my feelings. To show the tough moments but to also show the fun moments. To talk about how I was feeling or how things were going honestly and openly. Deep down I thought that maybe along the way I would meet someone who could relate or understand. I hoped that my blog would find its way to other people who may feel like I do. I think it may be doing that. I am so thankful. I sit here today feeling less alone with a big heart and a big thank you.
Thank you for reading and for coming back here to read again. Thank you for believing in my words enough to read past a first paragraph. Most importantly thank you for helping me to know I am not alone. Sister K and I are not alone and there are lot of other people going through the same feelings and emotions. I wish there was a bigger word to use but there isn’t. So I’ll say it again today: Thank you.
Have I started ignoring Mom’s MS when I am home? Is choosing to focus on other things the same as ignoring my feelings on the issue?
This thought has been on my mind since yesterday evening as Sister K and I drove back here together. We had a wonderful weekend at home celebrating Dad. It was simple but it was wonderful. Saturday we had a relaxing pool day in the backyard with oldies music and margaritas, Mom came out to sit in the shade for a little while, and we had a delicious dinner outside. The hysterical highlight: the moment Sister K and Dad decided to demonstrate that they can still do cannonballs (no one ended up in the hospital). I took pictures and hope to post those up a little later this week.
Sunday afternoon Sister K was working on grad school homework, Mom was resting and Dad was filling out some paperwork on the computer. I decided to try to make myself useful somehow. That is my new goal everyime I am home- to do something that would make Dad’s life easier during the week. I swept the house, I did the laundry, I did the dishes. In a sense I did chores. I felt good doing these things. I felt helpful.
But last night as we drove back, Sister K shared with me her concers about Mom. Her concerns about where her MS is heading. For instance Mom used to walk with her 4-wheeled pink walker “Pinky,” now she is walking with “Walkie:” a grey walker that only has 2 wheels in the front so she can have better control. Sister K said it best when she said I feel like just the mere fact that she is on a different walker is a big step in the wrong direction post-relapse. Sister K told me through her tears how she was fearful of the future with Mom and MS. Fearful of Mom changing. Fearful of Mom being here but being different. I could understand. I have felt all these same emotions before. But as I listened and we talked, I wasn’t feeling them in that moment. And I am not sure why. Have I finally in some way accepted what is going on? Is Sister K entering the beginning stages of this grieving process that I have felt like I have been in for quite some time? Or am I simply beginning to ignore the basics of Mom’s MS and choosing to focus elsewhere? Focus on something simple such as straightening the house, an area when I can actually see results?
I don’t know. I mean I have acknowledged that I have to keep living. I can’t focus on Mom’s MS 100% of the time. I am not pretending as if it doesn’t exist. But instead I am just shifting my focus when I am home to the things I know I can change. The ways I know I can help. Laundry, washing dishes, sweeping, straightening up. Chores that don’t carry the same negative connotation they did when I lived at home. Today I sit here thinking how good it feels to do chores at home. How uplifted I feel when I leave knowing I’ve made a difference. At the same time, I know Mom’s MS still exists. It is still there. There are still a number of feelings and emotions tied to it. So I continue to ask myself, are you ignoring the problem or are you just using these chores to help cope? I don’t know.
Do you have any certain things you use as coping mechanisms to deal with certain stresses? Do you ever ignore problems or pretend they don’t exist? How was your Father’s Day weekend? Anyone else out there still doing cannonballs? I, for one, am not.
Father’s Day is Sunday. Sister K and I are heading home this weekend to celebrate Dad. And celebrate Dad we will. We think he deserves an extra special celebration this year and Sister K and I want to make sure it is just that. He selected the menu- tomorrow we will swim in the pool, Papa will grill steaks and we will have corn, cole slaw and potato salad. Will these dishes be homemade? Ha. Nope. We are not exactly big chefs in my family. We will then eat an ice cream cake from Baskin Robbins. Pralines ‘n Creme, vanilla cake and Happy Father’s Day on top. Sunday we’re going to take him out to breakfast. That’s the plan. It’s a simple plan. But given the state of our “un-simple” life, it is a much welcome simple plan.
I was thinking about it and realized this is the first time we will all be together at home since Mom’s relapse issues began. Sure we have all been home but Mom was sick, or in the hospital or rehab and we were staying with her. It marks a big moment for us. A moment of moving forward. A moment of accepting the changes, adjusting to them and moving forward. Dad referred to this stage the other day as “posititvely moving uphill.”
I credit Dad with the positive element of this. He has held us together through all of this. He kept us moving. He was Mom’s advocate. He has been in two places at once. He has worn the many hats of husband, father, caregiver and then boss for his job. He never faltered. He never seemed shaken. And that was a comfort. We instinctively know when things are a big deal by Dad’s reaction. We look to him to gauge the severity of the situation. He continues to be the rock for Sister K and me. We continue positively moving forward because we see Dad positively moving forward. Dad has always been the greatest father in every sense of the word but over the past few months, especially the past few weeks he held us up. I admire him for his strength and faith. And I want to thank him for it. Hoping this Father’s Day brings a day of celebrating him as a father the way he deserves for everything he has done for us.
Hoping your family has a wonderful Father’s Day. What are your plans this weekend? Do you think sometimes the simplest celebrations are often the most fun? Do you like ice cream cakes? Dad is obsessed. I prefer a cookie cake 🙂