Unknown Risks

Just as I think our list of lifestyle changes with Mom’s MS is set for awhile we get a new one we didn’t expect. When I called Mom today she sounded a little flustered but didn’t want to tell me why at first. When she finally did she said, well I had put some meat on the stove to warm up and left the room to do something real quick; but, while I was in the other room I thought to myself that really isn’t a good idea because I can’t get back there quickly if needed. Nothing bad happened and there was no panic situation- Mom’s food may have been a little browner than usual but that’s okay.

But this just reminded me Mom is still adapting to her own limitations because of MS. We are all still adapting. Simple things I used to take for granted like warming up a meal are complex and come with real risks that need to be thought through. I was thinking how do we approach the risks that come with different tasks, how do we prepare for them and know what to expect? In some ways you can’t know or don’t know until after something happens. But taking some time to stop and think to the worst possible outcome of an activity can help determine what the risks are- that is just scary sometimes to think about. I can’t live life in fear but also can’t live life pretending certain risks don’t exist. Something as simple as cooking meat now comes with a risk.

It’s hard in these conversations because while it is good for Mom to process all of this it is also tough to hear the slight defeat in her voice of “things aren’t how they used to be.” I was silently very thankful this topic had come up at all in her mind. The thought of Mom cooking or what could happen if she left the room and wasn’t able to make it back had never occurred to me. It scared me a bit to think about and then scared me that these risks had never occurred to me. I have been thinking of other situations that we may be missing- while they may seem obvious to others they are not obvious to us. It just goes to show we are all still adapting as a family and still adjusting to our new lifestyle with Mom’s MS in the same way she is still adjusting herself.

Have you ever been startled when you realize something could happen that you didn’t expect? How do you deal the unknown of risks in everyday life? What does everyone have planned for the weekend? As always I am very happy it is Friday! Have a great weekend!

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“Ladies who lunch”

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.

Seeing Sea World in a Different Way

7.6.12 Sea World Day

For the past few years, Dad and I have wanted to go to Sea World. We say this and then it never happens. This year I decided we were making it happen. I picked a day, I sent out an official “Save the Date” email to my family and we all had it on the calendar. Even Husband came for the day. I think halfway through he couldn’t believe he was actually at Sea World with his inlaws and no children but I know he secretly had a fun time.

Regardless of it being a silly day of family fun, I was a little anxious because of Mom. We needed to rent her a scooter and the website says they are first come first served. I knew try as we might we were not going to be there at 10am when the gates opened. We run about an hour late to everything we have planned and this would be no exception. Arriving around 11 we were right on time in my family’s world. But having never done this before, I wasn’t sure how fast they went or how difficult it was to get one.

I was also nervous because of the heat and the impact it can have on Mom’s MS. We made sure Mom stayed really hydrated during the day and we paid an extra $10 and got the covered umbrella hanger above her scooter which was the best investment we could have made. Sea World is unique in that you can stay out of the sun fairly easy. We saw every show and they are all held under covered areas. We sat in the handicap accessible seating at the top so there was also a nice breeze. We also made sure to spend lots of time inside indoor air conditioned exhibits.  Mom made it the entire day and we were all so proud of her by the end of it. I think she was even amazed with herself having told us she was trying to predict beforehand how long she would last before needing someone to take her home.

It was one of the most fun days my family has had this summer. It showed me that yes MS has made simple outings like this a little more challenging but we have to press on regardless. We have to keep living our life. We have to keep having our family adventures, going to different places and not just locking ourselves up at home. It requires more planning, it requires more organization and it also brings with it a lot more unknowns. These are all little things I struggle with. I am a planner and I really like to have my plan, know what’s going to happen and stick to it. I am “slowly” learning though that I am going to need to just roll with it. Roll with the changes, embrace the unexpected and just deal with it. Know going into things that there will be unexpected things that happen, changes that we can’t anticipate and get comfortable embracing this. In embracing the unexpected I am also growing as a person. How I handle Mom’s MS as we navigate the world outside of our house is teaching me how to better cope when plans don’t work out. It’s also teaching me the art of a back up plan created on the fly.

My family had such a great time at Sea World and the thought that we might not have gone because of MS taught me a big lesson. As a family we need to commit to retaining these fun moments and really enjoying them. I don’t know what tomorrow brings but I know that today brings a day of fun that needs to be cherished and embraced. 

Below are pictures from Sea World Day:

 Mom and Me strolling along to the Dolphins show. Check out Mom’s fancy Sea World scooter rental. These things are awesome.

Dad above and Sister K below feeding the ducks. A mandatory stop for my family because of Mom’s obsession with flamingos seen in the background. The ducks liked Dad a little more than Sister K….

 Inside the giant, air conditioned aquarium watching the fish with Mom. It was actually very relaxing.

 Dad has to have knee surgery in about a month because he has torn his meniscus. Becuase of this after walking around most of the day his knee was starting to bother him so we went and got Mom’s actual wheelchair (not the Sea World rental) to roll him around in. Sister K and I just had to laugh looking at both of our parents in wheelchairs.

*Only person not pictured in these is Husband. He was the one responsible for taking most of these pictures. I promise he was there..even if he can’t believe it himself.

How do you embrace the unexpected? Do you struggle with having no control in certain situations sometimes? Does your family enjoy silly family fun outings? When was the last time you went to Sea World?

 

The Art of Planning Ahead

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.

All Aboard

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?

Can You Keep A Secret?

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?

Gotta Have Faith

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.