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.
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?
Mom is coming home. Saturday to be exact. This is good. I am telling myself this is good. But it’s not without some worry. She is moving around but still having challenges getting in and out of bed. She isn’t moving around perfectly but better than she was. The doctors are hopeful if she continues on her phsyical therapy her walking will continue to improve. I listen to Dad say these things. I sound enthusiastic and optimistic. But secretly, I am nervous.
Dad was beginning to have issues taking care of Mom by himself at home before her relapse occurred. I guess I am worried she will return home and all the same problems will exist. My family will have just been put through the ringer for the past month yet will not see any major improvements. It will have been as if we went through all of this for nothing. These are my secret fears.
Dad, Sister K and I are already talking quietly about back up plans. For what we will do if the next week or two are a struggle. If Mom is not as self sufficient as she needs to be. If Dad can’t handle it all again. We may need to bring someone into our house to help. I know that is a reality but it is a tough one. It is also one that won’t happen overnight. It also isn’t something happening tomorrow. But it is sitting there, secretly in the back of my mind.
I feel like I am on a hamster wheel. A giant circle. I go round and round and everything goes back to the same thing. Take life one day at a time. A good friend of mine whose Mom passed away from ALS texted me yesterday and said “Day by day is the only way to do it.” I know deep down she is right.
But I struggle. How do I do it? Do I trick my mind? Shut off thoughts about the future. Shut off my plans. Live today and today only. It is tough. Really tough. I struggle with this everyday. I struggle because of another secret- I don’t really know how to live day by day.
Have you heard of the expression taking life one day at a time? Do you put up a brave front but keep a list of secret worries? Is it just me or does anyone else not know how to take life one day at a time?
I have to have faith in Dad. I think Sister K and I like to jump the gun, think we know best and take over. And we can’t. I had a nice talk with Dad last night on the phone which he said, I need you both to trust me that if and when the time comes that we need more help I fully intend to go get it. I am not going to wear myself out and I will know when that time comes. He also told me that unless Sister K and I intend to go back to school to get our nursing licenses we can’t help at the level that may be needed. That kind of made me laugh.
So Sister K and I are still working through things, we are still figuring them out but we are realizing we have to have faith in Dad. Faith that as Mom’s best friend he’ll know when, if it ever becomes necessary, to make the decision about getting extra help at home. He’ll know what he needs to do to take care of Mom and himself and we’ll be there to support him through it.
Sister K and I were talking at lunch today. We don’t know what our role needs to be going forward to help out with Mom’s MS. We also don’t know what is in Mom’s head regarding her MS. We wonder if Mom is doing everything she can? We wonder if our approach is correct? We wonder what phase Mom is at with this disease? Has she experienced acceptance of it or something else? We are confused and unsure. We don’t understand. We also just feel like we are at a loss for what we are supposed to do. At the same time, how much can we do? The help and support Mom needs is on a daily basis. It is not in our power to move back in at home and be there everyday to help out. I also don’t think physically we can provide the assistance she needs.
Once again we are beating our head against a wall about this. And it’s frustrating. It’s almost like we need a plan. But what’s the plan? A schedule of weekends we will go home and do what we can- clean, run errands, grocery shop, whatever we can do to help out. Is that the most we can do? What else can we do? And then the questions begin again.
Today I am confused. I am overwhelmed and confused. I need guidance. Mom is stubborn. We all have qualities in us that would make dealing with issues difficult and this is hers. It’s easy for people to say “tell your Mom to do this, tell her to do that” but they don’t know her. Sister K does and that is why she is my main support in all of this. We can support each other but together we can’t figure out how we are supposed to support Mom. Once again I feel like I am 20 years too early for these discussions. I feel like we don’t know enough or have the resources available to us for these decisions. It’s hard. It’s a big, overwhelming picture. It’s a lot of things at once.
The only thing I can wrap my head around right now is we need a plan. A realistic plan given our limitations in life right now. Even if all we can think of right now is to start small with a plan of weekends we will go home and run errands. We have to start somewhere. I don’t know where else to begin. This is ironic because I love to plan. I am a self-proclaimed planner. But this kind of planning causes something inside of me to mentally shut down. I am going to have to learn to fight that in order to be the person I need to be to fight Mom’s MS.
When it comes to MS, how do you share responsibility? Do you have any other ideas of what we should add to our plan?
Today I am trying to be more present. Live in the here and now. Not allow my thoughts to drift to the future or to the past.
As a declared planner this is hard for me. I like to plan the future and make plans for it. I also like to think, and rethink a lot. But in training myself to be present in my thoughts I can also be more present with thoughts about Mom. I can refuse to let my mind wander off to ideas of where MS may take us, therefore making me scared. I can refuse to let my mind wander to memories of my past with Mom before MS, therefore making me sad. I can wander in the present and might find it’s actually more fun than the past or future.
I feel overwhelmed. Overwhelmed by Mom’s MS. Overwhelmed by my thoughts about Mom’s MS. Overwhelmed with my inability to focus on one particular thought and come up with a way to fix it. So I think I am going to rattle. Rattle my thoughts off and see if I can come to some sort of plan for myself. A plan to mentally deal with this because it’s becoming a lot.
I wish there were a more direct path with solutions to fighting MS. I feel like everyone has tried something different. You could try this but this worked for me. Maybe you should try this. Lately Dad is talking a lot about considering stem cell research for Mom. He is researching it, talking to people about it but Mom doesn’t want to talk about it. I understand both points of view. But I think we will try anything because we all feel helpless. I feel helpless as I live my life and watch Mom get worse. I think the MS is not only impacting her physically but it’s changing who she is, how she sees the world, how she lives her life. It’s changing all of our lives. It is putting an added stress on our family and on each of us. What is the best treatment, how do we continue living our daily lives trying to keep them as normal as possible, how do we encourage her, how do we live with a disease where we take 1 step forward as a family and shortly after are forced 2 steps back. And we continue this dance as we continue our lives.
I guess I need need to start taking things day by day. Everyone says to just live life day by day, take it one day at a time, and I agree with them but I never believe it in my heart. That’s where the life of a planner comes into play. I like plans. I like to make them. I struggle with taking things one day at a time. But what if I didn’t. What if I could just not think too far into the future but just into my day’s future. What if Mom’s good days and bad days were just that…a good day was reason to smile and a bad day was not a reason to panic that things are getting worse. They were simply just a good day and a bad day. Because I tend to not enjoy the good days as much as I wish I could could because I am focused on the bad day that recently passed or worried for the next bad day to come.
So how do I do it? How do I train myself to take things one day at a time? To not jump to the worst conclusion in a bad moment and to celebrate the good moments more.
I took a flight last weekend and before take off I watched and listened as the flight attendants did their emergency monologue. They alerted me to all the details of the aircraft, pointed to the location of restrooms and showed me what to do with an oxygen mask in the event of an emergency. The message is simple if you really listen: be 2 steps ahead, be aware of your surroundings and be ready if there is an emergency. While listening this time I began to think about the amount of pressure I place on myself to be 2 steps ahead, to be aware of my surroundings and to be ready when I am with my mom outside of our home.
My mom now walks with a walker which has given a new dyanmic to our adventures outside the home. No matter where we are- the mall, a grocery store, a restaurant, a concert, even a football game, from the moment I get out of the car I immediately feel like I am on the lookout. I am aware. I am ready. I am looking for the easiest way for her to get inside, I am looking at the sidewalk to see where it slopes down so she can wheel herself up, I am watching out for cars to determine a nice gap that won’t make my mom uncomfortable when crossing the street. I am mentally 2 steps ahead. But it doesnt end there. Once we get inside I start over with a new list- the best way to leave when we are done, the easiest way to our table at the restaurant, which seat at the table is best for her, where can she sit on her walker in the store so she’s not in anyone’s way.
It’s a lot to think about constantly and I become overwhelmed at times. I really do mean well but I have an ability to stress everyone else around me because of it. My sister manages this better than me. She has always been better at managing the unknown in life, dealing with things as they come up. Not me. I am the planner and if I can’t be 2 steps ahead it is even scarier to live it in real life and dare I say feel 2 steps behind. Sometimes I think it’s ironic that I am a planner and the entire nature of MS mocks me because of it. Constantly. I am realizing the constant planning and constant thinking is exhausting. The only thing I can successfully predict is that I can’t predict how an afternoon at the mall is going to go. Regardless of my mom having MS, I will never be able to predict life.
So I try really hard to mentally relax, try to be more “go with the flow,” try to become comfortable with being 2 steps behind. I try to focus on the moment and not 10 moments from now. My mom having MS is teaching me this. Instead of one day at a time I need to take things one moment at a time. Easier said than done. I fail at this regularly. I fail at this more than I’d like to admit. But sometimes I don’t. Sometimes there is a day or a moment where I am successful. When I am I can see the happiness on my mom’s face and I can feel my own happiness in my bones. Not only did I make things easier on my mom but I made them easier on myself. I am learning to be more flexible and finding myself gaining greater peace of mind in the process. I’m trying to stay 2 steps behind one moment at a time.