Tag Archives: family

Not Crossing The Line

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It’s been a bit of a tough week. Thoughts in my head. Words being spoken. Concerns being raised. Its all had me thinking a lot. Thinking about my relationship with Mom. She is still Mom and I don’t want to treat her any differently. I don’t want to give her a free pass when we argue because she has MS and I don’t want to just give in to things because she has MS. At the same time I don’t want to seem like a heartless daughter who doesnt empathize with what she is going through. That’s the part where it gets tough. At what point does the line get drawn. At what point does an argument go from a simple mother/daughter one to a more complicated mother/daughter argument. The kind where if I am not careful I could really hurt Mom’s feelings and become insensitive to the changes going on with her. Changes that I need to learn to accept instead of causing my frustration with them to add one more thing to her plate to be down about. The kind of argument where you forget what the issue is because you are both trying to make a point. I think I am in the midst of walking that line right now.

I am far from perfect. My family is far from perfect. And adding MS to our lives has complicated our family dynamic in ways I can’t even fully articulate. It has also complicated my relationship with Mom. Mom and I had an argument Tuesday. Tuesday was also the day my phone decided to die. I then didn’t talk to her Wednesday and Thursday. Part of that was caused by legitimately being busy but I also knew I could’ve made the time to call if I wanted. I didn’t feel the motivation. I felt I needed a little time to myself to figure out my thoughts. I needed to chill out from our argument. If I got on the phone there was a good chance I wouldn’t be able to let it go.

Today I realized I needed to call Mom. I realized as I was walking to Starbucks today (for free Starbucks refreshers from 12-3) that calling Mom to say hi and catch up was a bigger deal than resolving our argument. I don’t really think our argument will be resolved for awhile. It involves lots of convoluted issues. She has some points, I have some points, some of it has to do with MS, some of it is just life but at the heart of it I don’t think there is going to be a big, grand resolution anytime soon. At the same time it is not such a big issue that it has earned the right to impact communicating with Mom. To impact a part of her life that she really depends on and if I had to admit to myself, I do too. In many ways communicating is one of the biggest things we have right now. I need to put aside my stubborn tendencies to make a point and just move forward.

So today I did. I called Mom. We both acted like nothing had happened. In reality she may not really realize I am still bothered by what happened. Or she could be using her own Mom intuition to realize she needs to not bring it up either. The point though is by not calling Mom today I believe I would’ve crossed the line. Crossed the line into hurting her with my lack of communication. I didn’t want to be that person. I didn’t want to be that daughter. So I took a deep breath and called Mom. Had a great conversation and felt better when I was done. Let the unresolved items stay unresolved. They may stay messy and unresolved. Focus on the moment. And in that moment today I was having a good conversation with Mom.

Do you ever realize sometimes you have to just leave issues unresolved and move forward? Do you believe there is a line in dealing with loved ones between a simple argument and crossing into something that hurts much more? Did anyone else participate in free Starbucks today? What flavor did you try? I got the lime refresher…it was good but a little too lime flavored for my taste. Kinda wish I tried the berry.

Sometimes Patience isn’t a Virtue

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“Patience is a virtue.” I don’t remember when I first learned this phrase but it is one that resurfaces continuously, especially during moments where I am indeed lacking patience. The hard part is distinguishing when the time is up for patience. When it’s time to start forcing an issue a little more. When it’s time to stop standing by and patiently waiting anymore.

This is pretty much my natural inclination all the time. To not be patient. To get issues solved immediately. To get problems resolved as soon as possible. But Mom’s MS continues to force me to be a little more patient. Emphasis on the little. Ultimately I can make suggestions to Mom all day, we all can, but it is her body and her health. But there is a line. A line we teeter on the edge of constantly. When we have been patient. When we have waited for Mom to make a certain decision, come to a certain realization and it has not happened. A line that separates not saying anything and saying something. From ignoring an issue to bringing it up. Crossing this line immediately makes you the bad guy. It makes you more aggressive no matter how calm you are. It leads to difficult conversations. Difficult moments. Moments that bring out a mixture of emotions. Emotions in Mom and emotions in us. Moments where you don’t know what to say. Moments where you are fighting to stay calm. Fighting to remain rational. Trying not to give in but at the same time going round and round in a conversation. A conversation that ultimately still has no resolution. Other than explaining to Mom how you feel, it goes nowhere. It does not lead to a resolution. It takes us right back to where we started. It’s as if we never crossed the line to begin with. No positive result from all the effort put in.

Another expectation broken: If you put forth the effort, you will achieve a positive response. Lesson learned: That’s not always the case.    

I do not feel that “patience is a virtue” but I also do not know what to feel. I feel a mixture of emotions. Anger being the biggest one. Anger at this situation. Frustration that Mom won’t listen to what we are saying. Confusion as to where we go from here.

*In case you can’t tell we are approaching a tough issue with Mom. One which I struggle to reveal on here because I do not want this to become a place where I just vent frustrations directed personally at Mom. But I will say this sums up how I feel about it. I hope you can gather what I am trying to say from my mess of feelings today.

How do you approach tough conversations with family members? Do you believe in just accepting they are never going to do what you want them to do? Do you believe in continuing to push an issue? Do you believe sometimes patience isn’t a virtue?

The Art of Planning Ahead

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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.

Friday Frustration

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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.  

All Aboard

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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?

This is Us

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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?

A Simple Celebration

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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 🙂

Keepin’ It Light and Fluffy

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I love The Office. Husband and I are about 2 seasons behind. Our Office viewing goes something like this: we buy a season, we hole ourselves up at home to watch it on the weekends becoming somewhat addicted, we proceed to talk about it regularly as if these characters are our friends during this period and then we finish the season depressed until a new one comes out on dvd. We never watch it live. We then give the seasons to Mom and Dad who then catch up as well.  We are actually more behind than we used to be due to the mere fact of life. I plan to work on catching everyone up. As if this is a major life impacting goal to add to my to do list:
Catch everyone up on The Office: Check.

But it does make me think of the importance of tv shows and movies in brightening up my life sometimes. It is fun to sit around and quote movies at dinner or scenes from television shows we all love. It is like a big inside family joke. It gets everyone laughing. Instantly everyone’s head is transported to another time. They are with that character in their environment. Their head is filled with laughter thinking of it. Thus my head is filled with laughter and before I know it I am smiling and happy. As if happiness pulled a sneak attack on me.

It’s important to keep things light and fluffly sometimes. Conversations full of more laughter than content. Full of more television character quotes than news related stories. You know the moments where there isn’t much to say. The moments where looming in the background are the big overarching issues you are tired of talking about. In our case it is Mom’s MS. In these moments I have literally felt the tension lifted by just quoting a line from Wedding Crashers or a silly saying from Parent Trap. Stupid quotes are the bread and butter of my family. They bring the laughter which brings the smiles which brings the happiness. As insane as it may sound, these moments keep us sane.

Do you believe in fluffy conversation? Does your family enjoy quoting any particular tv shows or movies?  Does anyone love The Office dundies episodes as much as I do?        

Can You Keep A Secret?

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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?

Did I Ask For Your Advice?

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Have you ever noticed that everyone has an opinion? They really do. Positive. Negative. Everyone has one. Some people keep them to themselves. But a lot of people do not. That’s fine, I tell myself. I understand. They are only worried. They are concerned. 

But then I stopped to think about it. Really stopped to think about it and it’s not fine. I don’t understand. I never just offer my opinions about how people are running their lives the way people do to my family. And I don’t understand. Do we have a sign that says we don’t have control of the situation? The situation being Mom’s MS. 

Well, you are right. We don’t have control. We get close to having control. Then we have a million curve balls thrown at us at once. We are currently trying desperately to regain control. Dad, Sister K, Mom and I. Each in our own way but as a family. We are doing the best we can with what we have been given. The tough part is that I don’t think people realize this nor care. They just want to issue judgment. Tell us what we should be doing. What we should be making Mom do. How Mom should think. This has gone on long before the past few weeks. This has gone on since Mom was diagnosed with MS.

“Your Mom should walk with a cane.” “Your Mom needs to work out more.” “Your Mom needs to lose weight.” “Your Mom is running your Dad down.” “Your Mom isn’t telling you everything going on.” “Your Mom is depressed.” And it goes on, and on, and on…

And all of a sudden it has occurred to me…This is just rude.   

Aside from your care and concern, I would never and I mean never make comments to your children about you like this. Dad would never make comments to other men about their wives like this. But people do it to us all the time. Constantly. We have started dreading get togethers. We cannot escape it. I can’t even come up with an appropriate response it’s so ridiculous. Do I say thank you and chime in with my thoughts as I have been doing? {I think that may be wrong} Do I say something like we are doing the best we can? {That may be better} Do I say what I really want to and reply could you please keep your opinions to yourself because they are rude?

I was brought up with good manners. Sometimes I feel like it is one of my downfalls. Sister K and I say what we are supposed to say, we do what we are supposed to do, even when others don’t return the courtesy. But Mom’s MS is conflicting with these good manners. I am sure people mean well, they don’t know what else to say, they are only trying to be there for us. But I am tired. Exhausted by the comments. I am 28. Sister K is 25. You are much older than us. Maybe that is why you feel you have a license to comment. Maybe you secretly enjoy watching my family deal with a hurdle. Maybe you just want the juicy gossip. Maybe you legitimately care. I do not know but I also no longer care. If you really had any clue how hard this is on us you would put yourself in my shoes for a minute before speaking. How does it feel to be watching your Mom’s ability to walk deteriorate while your other friends are at the mall with their Moms? How does it feel to have your entire family’s world turned upside down? How does it feel to have no control over your Mom’s health, no straight path to getting better, nothing except trial and error- but don’t trial and error too long or you lose your window to improve? Do you think your comments help my stress about this? Do you think you make me feel any better with your comments? Oh yes, you dealt with something similar with your Mom when she was in her 80s. My mom is 59. Yet again, not the same.

Please stop giving Dad, Sister K and I advice. Let us deal with this ourselves. You have no idea how hard this is on us. You don’t understand. We didn’t ask for your advice so please don’t give it.

Do you ever have issues with the way people try to offer advice? Why do people feel entitled to offer advice when it wasn’t asked for? Am I being too hard on the world? Any advice on how you would respond to these comments?