Is there a way to walk your Mom with MS into a social gathering and not be the center of attention amongst friends? Or is this just something that is going to come with the territory now? It is something I am sitting here wondering today after a wedding this past weekend.
Halfway through, Mom needed to move from the table to her wheelchair to go to the restroom. So people gathered to help but really we didn’t need it. And the extra people just stared. Finally Dad said, why don’t ya’ll go dance or something and they quickly walked away.
Later Sister K took Mom into the restroom and after being gone for awhile I went in to help out. But people wondered where we were. Our absence created attention.
People wanted to ask Sister K, Dad and Me how Mom was- and that created attention. For the first time though, that part didn’t bother me. Maybe you could call it growth…but I didn’t get angry or irritated. I talked honestly to two of Mom’s close friends and one of their daughters. And they listened. They heard what I had to say- they admitted it is a lot for Sister K and I to be dealing with, they expressed they are worried, they wondered if there was more to be done, and I listened and I answered…I was honest.
But now today I can’t help but wonder if I shouldn’t have said anything at all. My family is a tight circle and a quiet bunch..and we are getting quieter as far as Mom’s MS is concerned. But at the same time, MS is not exactly a disease you can keep quiet- especially when people witness the changes in Mom with their own eyes and how those changes seem bigger every time they see her. So what do you do? What do you say? These friends of Mom’s are close to her and important to her, therefore it gets sticky. I don’t walk around telling anyone and everyone- and sometimes I don’t believe people’s intentions for wanting to know are good. But in this case I did.
So I struggle with how much do you say/how much do you reveal. Dad has said he doesn’t want Mom to be stuck at home forever…but if we are going to do things where we take Mom to events like this are we then also opening ourselves up for questions. Maybe we invite it upon ourselves. I am not sure exactly.
Does your family have any similar experiences with this or do you think it could just be a symptom of my family? Is it possible to hide what is really happening with a progressive version of MS or are people just going to ask questions? Do we possibly just need to understand this is what comes with the territory of taking Mom out considering the stage her MS is in currently?
Mom has been having some issues this week with what the home health doctor thinks is her sciatic nerve. Dad had to practically commit an “act of God” to get someone from her doctor’s office to call him back with some pain medicine on Monday and Tuesday. I am learning that you literally have to take the motto “the squeaky wheel gets the grease” when it comes to dealing with neurologists. Maybe the ones where we live just are not that great or maybe it is the field of neurology- I’d be curious what your experiences have been? We are already on our second one and I don’t think there are very many others to choose from unfortunately. The doctor is good, it’s just the process involved if you have an issue outside of your appointment and the lack of communication follow through.
But I bring all of this up because this coming weekend Mom and Dad were supposed to come visit because we have a family wedding to attend. With Mom not doing so well, Dad has discussed with me several times the likely decision of not going to it. This is difficult because it involves Mom’s friends from college and one of their daughters. Going to the wedding is in many ways more for her than for us.
Aside from just the logistics of getting her here right now, I know Mom is not in the best shape and I don’t want her friends to see her like this right now. I was talking to Dad about how after awhile you just get tired of being seen as the “special needs family.” You get tired of the extra effort involved in getting Mom to these things, get tired of everyone treating us differently, the stares, people telling you how they think Mom is getting worse, wanting to get into your business about what you could be doing better….it goes on and on…
I know Mom has MS and I know this is just the card our family has been dealt. But that doesn’t mean I don’t get tired of dealing with the extra issues that come with the territory- the struggle to get easily in and out of places; the stares that come with this struggle; the comments that follow. It’s just frustrating, especially while I get to stand by and watch all of her other friends get around just fine. I have heard before it takes a special family to deal with everything we have going on and I know we are truly one of a kind to be able to handle it- but that doesn’t mean that I don’t get tired of it and wish it would all just go away. That’s how I am feeling lately as MS seems to be throwing more curve balls and I am struggling to keep up.
Do you think I am awful for admitting I get tired of being a “special needs family”? Do you ever struggle with how others treat you because of a disability either to you or to a loved one? Have you had issues with doctors being responsive outside of a scheduled appointment?
“When it gets bad enough he will ask for help.”
Those words were told to me awhile ago by a friend when I shared my concerns with Dad being spread too thin between working and caring for Mom full-time. But sometimes I believe God forces you to make a decision you have been putting off by making other parts of your life begin to spin and that is exactly what has happened to Dad the past few weeks.
Dad was recently promoted which is really exciting but it also means more demands at work. At the same time, Mom seems to be digressing. She is having a harder time moving around lately and her MS is demanding more from Dad. I have been worried about Dad for some time but like I said above, I realized at some point I had to stop voicing my concerns and realize it was not my place to demand Dad get help with caring for Mom. The relationship between Mom and me verses Mom and Dad is different. They are married. They are husband and wife and I believe Dad is trying to do everything he can to fulfill his vow to be there for Mom in sickness and in health. I can’t get in the middle and force him into making decisions he isn’t ready to make.
But Sunday Mom seemed to be struggling and Monday she woke up with excruciating pain in her leg. Dad needed to be at work. This has happened before but this time his work demands are greater and he realized it was the beginning of being unable to be in two places at once. He was stuck. He called the nurse who had come to our house to administer Mom’s steroid infusion. She had spoken with Dad awhile back about staff she has that will come out and assist around the house. The nurse came out to meet with him and she and Dad began to move forward with making arrangements for someone to come out to be with Mom during the day.
So when I spoke with Mom during lunch yesterday, her new home helper/nurse/assistant…for blog purposes I’ll call her Nurse B…Nurse B was at our house with Dad getting acquainted with everything. I tried to talk to Mom like everything was normal but she was tired and explaining she was frustrated because she preferred to be by herself.
Even after all the time I have spent trying to get Dad to make this decision, I have to admit it was strange to think Nurse B was there. She was there to take care of Mom. My mom who has always taken care of us needed someone to take care of her. This is reality now and it made me sad and full of a mix of emotions…a big one being acceptance that this is my family now. It’s just strange. It feels strange. And even though Mom needs this, I feel sorry for her. I can’t help but struggle that her independence has been taken away and I played a part in that. Even though Dad ultimately made the decision I agreed with him. I don’t know why but I’m struggling with that realization because secretly I never thought it would happen- I never really thought we’d need to bring someone in to help Dad; I thought Mom would get better; Dad would figure out some magical way to manage it better. I just didn’t think it would happen and it has now.
Have you ever dealt with getting help for a family member that maybe impacted their independence? Have you ever felt the guilt of feeling responsible for taking it away? Do you believe sometimes life may force you to make a difficult decision?
MS has changed my family in a lot of ways and it is continuing to change my family in a lot of ways. My family that I have always been fiercely proud of and very protective over is changing in ways I cannot control. It is changing Mom, Dad, Sister K and me. Changing the way we interact, changing our dynamic at home, changing our activities- it is changing us.
This past weekend really shed a light on those changes as Sister K brought her boyfriend home for the weekend to celebrate Easter. All weekend I tried hard to fill in the holes that Mom should’ve been responsible for with a guest at our house. I didn’t mind but it made me realize even more that this is my role now and I needed to step into it for Sister K. I feel like I am doing that a lot in many capacities in my family- filling in the holes of where Mom cannot anymore.
But as the weekend ended and we were heading back in the car I was talking to Husband and I got upset. I felt uneasy after the weekend and couldn’t figure out why- and then it hit me…I was mourning in many ways the loss of my family as we were and realizing what we have become. I was sad because Sister K’s boyfriend will never know us without Mom’s MS. Because Husband and I started dating in college, he knew Mom before her MS and knew our family dynamic without all the extra added stress. At this point in my life I can define all relationships into two categories- those who knew my family before MS and those who knew us after MS. There are pros and cons to being on both sides of the line but I know that those who knew us before knew who were were- knew how we operated- they knew our true family. Those who know us now I am not so confident of the picture they get. I don’t know what they take away after meeting all of us in our current dynamic.
I still love my family very much and I am still obsessed with the people I am blessed to call parents, grandparents and of course Sister K…I would not change them for a minute. But I still feel like I am mourning the loss of my family as we were and realizing with both eyes open the family we are becoming.
Have you ever experienced changes in your family that make you aware your family dynamic is changing? Are there people in your life who know your family in the past as opposed to who they are in the present? Does what I am talking about even make any sense?
I always knew MS would cause plans to change and to some extent I have experienced it. Running late to events, changing “dinner out” to “dinner in,” canceling a planned outing….but I have never experienced it when it involves plans with other people outside of my family.
A few weeks ago Husband and I went home for the weekend to attend a wedding with Mom and Dad. Sister K was unable to make it so Husband and I were going to drive with my parents on Saturday. The trip from home was about 2 1/2 hours up and 2 1/2 hours back to the city the wedding was going to be held. Initially we were thinking of staying overnight but Dad had plans to go out of town for work the following day so that didn’t work out.
That morning I had a feeling Mom might be struggling. She had just finished her steroid infusion and seemed to be moving slow. But after a bit of an argument with Dad about if we should go at all, he told me “this is how we roll with MS and if we have to come back we’ll come back.” I don’t think either of us really thought that statement would come true just a few hours later.
About an hour into our drive Mom needed to use the restroom so we pulled off at a gas station. I helped get Mom into the restroom and for the next hour I was in and out with Mom. That’s as far as I’ll go into those details. The point though is there I was in a black dress, black tights..pretty much dressed for a wedding helping Mom in and out of a restroom stall repeatedly. It was exhausting. It was draining. I had no mental capacity to think of what other people may be thinking. I had no extra mental space. Everytime I thought we were done, we weren’t. Husband and Dad hung out next door in a gift shop and even though I felt bad for leaving Husband in this predicament, I also realized I had no choice. My priority was to Mom in this moment.
At a certain point Dad decided, we can’t continue driving and make it to this wedding. Mom was upset but understood. This was her friend’s daughter getting married and our old next door neighbors. I texted one of the kids to tell them Mom was sick and we wouldn’t be coming. We got in the car and drove an hour back home.
It was a strange feeling having to text message someone to tell them Mom was sick and we wouldn’t be able to make it. I felt in many ways like this private world I like to shield the ugly parts of MS was being exposed to someone else. I also couldn’t believe that for the first time our plans were really getting flipped on their head…just like everyone had been telling me would happen eventually. This is what they meant. Getting all dressed up for a wedding only to spend your afternoon at a gas station. Getting home and thinking what was the point of that? The emotional exhaustion that comes from going through that experience. The thoughts that circulate through your mind. It’s a lot.
I know this is most likely going to happen more often and has probably already happened to many of you, but it was my first time to “get it.” To in many ways really see where we are at with all of this and it was a hard realization. Maybe these experiences will get easier and maybe they won’t…but it’s very humbling to have to expose these tough moments to not only close friends but also to all of you. At the same time I think it’s important because it is helping me to not be ashamed. This is who we are now and these things can happen. Our family really is changing and evolving and these experiences are all playing a part in the evolution of who we are becoming.
Have you ever had plans “derailed” by MS? Have you ever struggled having to admit the truth to friends? Do you struggle with thinking what others are thinking about you?
I was home for a few days two weeks ago to stay with Mom while Dad was out of town. I had a love/hate relationship with those two days. I loved being home. I loved staying with Mom and spending time with her. I hated everything that had to do with MS. I hated how it tested my patience.
It gave me a great sense of appreciation for everything Dad is dealing with when it comes to Mom. It also made me feel like a failure because I can’t seem to handle everything as smoothly as he or Sister K does.
After quite a bit of soul searching, I think I may have found the root of part of this- I need to slow down. I like to go-go-go. I am a planner. I am always one step ahead and thinking one step ahead. This way of living, feeling and thinking does not work when your Mom has MS. Because these tendencies are pretty heavily intertwined in who I am…in may ways Mom’s MS is fighting constantly with who I am.
I came to this realization about halfway through. I then felt really frustrated with myself. I spent the rest of my time home trying to mentally slow down. Physically slowing down is one thing. But mentally slowing down and focusing on the present with Mom is tough. But I tried. And I was successful for a day. I know it’s a day, but it is some sort of proof to myself that I can do this…baby steps.
So here comes my new challenge, the mental slow down.
When I am in the presence of Mom I need to make a conscious effort to mentally slow down. Fight my urges to speed through our time together and get lots of things accomplished. Instead slow down. Realize I am not going to accomplish that many things. Most importantly realize that is okay and realize the important part is the moment with Mom.
Do you ever had a tendency to try to speed through life? Is it easier to physically slow down than mentally slow down? Do you ever get the two confused?
Mom is undergoing a steroid infusion this week. Every evening someone from home healthcare has been coming to our house to give Mom an infusion. Becuase of her decline the past few weeks, her physical therapist thought she may be having an MS exacerbation. My parents quickly made an appointment with her doctor who prescribed the steroid infusion to get her strength back.
I have to be honest, I didn’t think much of this. I didn’t think this would really make much of a difference and had started trying to reason my way through the changes in Mom. I am continuing to do this. But something strange happened this week- the steroid infusion began and I have felt through phone calls with Mom that her presence and spirit are back.
Today at lunch I was going to go run some errands and just called to check on her really quick. Really quick turned into 45 minutes….she was so tuned in, talkative and upbeat that I couldn’t bring myself to get off the phone. I soaked up every one of those minutes as I wandered around outside. We talked about the same things, she was rambling repeated comments a few times but I really didn’t care. It was just so nice to be able to talk to Mom…really talk. She wasn’t loopy or tired or out of it. She was Mom.
I know this may not last. I am very aware that this is most likely a result of the steroid in her body right now. But I also don’t care. I enjoyed this afternoon so much and felt so revived coming back for the second half of my day. It all ties back into living in the moment with Mom. I have been having tough moments the past few weeks. But today was a good one. It was one that I want to cherish.
I am heading home this evening to actually see Mom and Dad. Husband and I are attending a wedding with them tomorrow and then I will be staying there until Wednesday morning because Dad has to go out of town. He likes for either Sister K or I to stay with Mom if he is traveling overnight. I know we most likely won’t be able to do this forever but for right now we are both in situations that allow us to, so we do. It will be nice to be home and nice to spend some more time with Mom. More time working on my patience and working on living in the moment. Hope you have a great weekend!