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?
This past weekend Husband’s family visited. I struggle sometimes because it is difficult to have a mother-in-law who is healthy and active and then have my own mother who is struggling and not as active. It brings to mind a lot of challenges internally for me and has pretty much since we got married. But this weekend, I really put those aside and tried to just enjoy the time with Husband’s parents and I found that when I did that things worked smoothly. My mind was more at ease. When I just lived in the moment, not worrying about the future with my parents and inlaws but instead just enjoyed the weekend…things just worked.
One interesting thing did happen though. We took Husband’s parents to a university basketball game. My father-in-law is having issues with his hip and may have to get a hip replacement eventually. There was a quite a bit of walking to get into the stadium. We saw an area for accessible entry and Husband and I walked up to ask a question about how to get to our seats from outside. The thought went through my mind to ask if we could enter in this specific spot, but I held back since it wasn’t my own parent. In hindsight I should’ve just asked and next time I will. Later, Husband told me he wanted to ask but didn’t know how. He said he didn’t know how to word it. He said he was unsure what was appropriate to say or unsure what they would say in response. He also said he thought I would’ve known exactly what to say in this situation…I deal with this all the time…and I am years ahead of him on this topic.”
And he was right. It made me take a step back and think of the lessons I am learning in the process of dealing with MS. Sure there are tough moments. There are also good moments. There are also moments of complete failure and moments of complete success. But through all of them I am learning lessons. Life lessons.
In no particular order, I offer you a few of my own personal lessons learned:
Don’t be afraid to ask for anything. What is the worst that will happen? Someone will say no. They might..but most of the time they won’t.
Chivalry for Mom exists 100%. People hold doors. People get out of our way. People don’t mind stopping their cars while we cross the street. We force people to press pause in a very hectic world. They press pause and watch. Sometimes they are impatient and rude, but for the most part they are kind. Blow off the rude ones but embrace the feeling of the kind ones.
Also realize people are selfish and are not paying as much attention to you as you think. They are not staring at you pushing your Mom in a wheelchair or getting in and out of the car. Even if they are staring they will forget shortly. Because strangers don’t really care that much about you..and take comfort in that.
Assume your plans will fail. Something will go wrong. Learn to roll with the punches of MS and the punches of life.
Stay calm. Mom is watching me and waiting for my cue. If I get stressed it means Mom will get stressed. And a Mom with MS who is stressed is a full on recipe for disaster.
Cherish the moment. Cherish the phone call. Cherish the experience. If Mom is having a good day, cherish it. Take seconds to remember it and embrace it. Don’t assume these will come everyday. But cherish them because the memories of these are what gets you through the tough moments.
Life is going to bring people into your life. Wonderful people you never imagined meeting. Realize these people are your support team and they are gifts. At the same time, people in your life who you always thought would be your support team are going to disappoint you. You will have to find a way to “let them go” realizing at times we have to clean out the old to make room for the new.
Keep perspective. Don’t sweat the small stuff. Realize the importance of MS in your life and the large place it holds in managing your daily stress level. With that being said, little things don’t deserve a big place in your stress level. They don’t deserve a place at all. Anything unnecessary that contributes in a negative way to your daily stress- get rid of it.
Only the strongest families are given MS to deal with- and even more so than that, only the strongest children (no matter what your age) are given a parent with MS. Life is going to give you the tools you need to get through it, but it is figuring out what those tools are and how to apply them in your life is hard. Find your tools and embrace them. And above all, remember we are warriors.
What lessons have you learned from dealing with a disease such as MS in either yourself or a family member? Do you know a child who has a parent with MS? Take a minute sometime to recognize them for what they are- a warrior.
I am having a tough time blogging lately. I am pushing through it though because I love this blog. I love writing and having a place to come share my thoughts about everything going on with Mom. But my thoughts lately are cloudy and they are tough. I feel overwhelmed but the challenges being presented before my family. I feel overwhelmed about how much there is to this story that I cannot fix. I am trying to accept these complex thoughts but it is hard. It is hard because they are not easy to accept and I am not sure if accepting them is the right thing to do. I feel like a lot of the time I am thinking myself into circles about everything…only to realize nothing is resolved and the only way to cope is to mentally move on to something else.
To put it bluntly, I feel tired of MS. Tired of the impact it is having on my family and Mom. Tired of the way it is seeping its way into our dynamic and forcing us to accomodate and find new ways to get on balance. I feel like we’ll never figure it out. A big part of me wants to give up but a bigger part of me knows that isn’t what you do. To that part of me I tell myself- this is your family. These are your people. These people make up the biggest blessings in your life. You have to focus on them. You have to focus on the love you feel for these members of your family and focus on your relationships. You have to cherish the good moments and really cherish the memories of those moments. You have to remember the bond Mom has with you. A bond that can’t be broken by a disease. A bond that makes Mom the only person you want to call when you are upset and a bond that in the same way tells Mom just from your tone of “hello” over the phone that you are upset. She knows you. She knew you before anyone else knew you.
It’s not easy and in fact I think it is getting more complicated. Life is throwing bigger curve balls at us. I am worrying more about my parents. I feel older. I feel less like a kid. I guess that was going to happen eventually but I also feel alone in the process. I don’t have anyone who can share this except Sister K. No one else understands that I am now thinking for both Mom and me- Trying to manage our family, keep up with buying people presents, rsvp’ing for events, planning events, but all making it look like Mom is still doing it. I have always been a planner and always been organized with life tasks like this so it’s not that far of a stretch but it doesn’t make it easier. In many ways perhaps God was preparing me to assume this role my entire life…and now that time is here. Do I mind, no. But does it make things very real, yes.
I am not sure where I am heading with this as it seems to be a bit of a rambling post. But I wanted you to know where I am at these days. I am still around. I am still blogging. But some days I can’t bring myself to think about MS and do it…and some days all I want is to have a blank white screen to ramble about MS. But thanks for sticking with me and continuing to read as I charter through. Maybe this is all part of it. The ebbs and flows of life and the ebbs and flows of MS. Like my blog says, I don’t have a manual and I am just navigating it the best way I know how.
Do you ever feel like you need to ramble? Have you every struggled with blogging about tough things? Have you struggled with ups and downs with a family member and a disease?
It’s been a strange week of talking to Dad on the phone about MS, Mom, how we are dealing with it, how we are handling it. There is a lot of frustration, a lot of questions, a lot of sadness. I think the main question that keeps coming up is “Why?” Why is this happening to us? Why was our family chosen to deal with this? Why doesn’t Mom want to try harder to fight this? Why can’t Mom improve like other people we hear about who have MS? Why is this so hard on my parents? Why does Dad have to be dealing with this along with everything else? Why.
We want to know why because this journey we are on with MS is painful. It is painful to watch and painful to live. Today was painful. I called Mom as I usually do on my lunch break around noon and she answered. She sounded a little out of it. I tried carrying on a conversation with her but felt like I couldn’t get her to focus. She asked me a question or two but I knew she wasn’t really listening to my response. Twice I couldn’t even understand what she was saying because her words almost sounded slurred. She said she was laying down and it seemed like she was literally dozing off- so I got off the phone. The conversation hurt me. It hurt me because it shines a bright reality light into my eyes that Mom very much has MS and she is actually not getting better. It’s easier for me to not focus on MS when I can call Mom and we can chat somewhat normally…when she is having a good day. But today was not a good day and with that comes the reminder of the pain of this disease for all of us. Mom is changing. It is reality.
I called Sister K to tell her about this and Sister K told me she was sorry and that Mom was probably tired. She seemed a bit frustrated because she felt I was seeking more of a response from her…I honestly wasn’t. But when I got off the phone I was left wondering what did I want? Why had I called Sister K to share this with her? She can’t fix it and make it go away…did I secretly want her to? Or did I just want to tell someone what had happened because I felt sad. I didn’t feel angry; I wasn’t asking why me; I just felt sad.
It is one thing to talk to Dad about Mom’s decline but it is another to experience it. It feels even bigger to experience it all alone on the phone. I was surrounded by people walking on the streets, yet I felt all alone. I think the person I really wanted to talk to was Mom and I was painfully realizing in many ways, at that moment, she wasn’t there.
Have you ever been surrounded by people yet feel all alone? Have you ever called someone after something tough but not really understanding why you called them at all? Do you experience moments where the light of a reality you try to conquer is shined brightly in your face?
I believe deep down that when the going gets tough we all have two options- to give up or to fight even harder. You like to believe that when presented with a tough situation you would fight. But what do you do when it isn’t you? When the person you want to fight won’t fight? Do you continue fighting with them about fighting harder or begin to accept they may be done fighting?
I just worked through these thoughts on the phone with Dad. Mom has another doctor’s appointment tomorrow with her neurologist. Based on the last one, it is no wonder why these would now give us all reason to squirm. He’d like to talk to her doctor privately beforehand but isn’t sure he will be able to for legal reasons. He also thinks if things get uncomfortable again with the topics we force her to bring up with her doctor she will stop us in the room during her appointments. At which point it allows Mom to speak with the doctor about her reality which isn’t reality at all.
But as I sat listening to Dad, for the thousandth time about the exact same issues we continue having…for the first time I stopped him and really got my words together in a succinct way. I said I think we may be at a point where we have to stop. We can’t continue letting Mom’s MS and her lack of caring about it cast a shadow over our lives. Mom is lucky in ways she doesn’t realize. Lucky she has such a resilient family that when she pushes us we don’t turn away but continue loving her. Sister K and I continue going home to visit. We continue to be there. We continue to fight for our family. But the biggest person this impacts is Dad. He is the one there day in and day out. The one who is most hurt by Mom’s unwillingness to try harder or to care more. I think he believes he has failed her if he gives up. If he begins to accommodate her needs rather than continue to push her.
I am rambling and I am not sure what my point is here. But I do believe you have to meet people where they are at. I was told once that people speak two ways, with their actions and words, and how they speak with their actions is usually more honest than their words. So I have to sit back and look at Mom’s actions. Her complacency with being helpless. Her lack of initiative with anything that could improve her MS. I have to sit back and think that maybe there is an underlying message here and whether we like it or not, maybe it is a message we as a family need to begin to come to grips with and accept.
Have you every been in a situation where you wish someone close to you would fight harder than they do? Do you believe this is “acceptance” or “giving up?” Have you ever had a time where you have had to accept someone’s choices even though you didn’t want to? Do you believe people speak differently with their actions and words?
My family is not a big Whole Foods shopping family. We have never been big on organic foods, ingredients in foods, etc. There is nothing wrong with it, but it hasn’t been our frame of mind…until recently. Last week Mom and Dad’s therapist suggested to them that they try juicing to help with relieving some of the pain and symptoms of Mom’s MS. Dad is really interested in this because he is also willing to try anything to help Mom. Mom not so much.
I have taken a step back from the disagreement because I am not sure which end of the spectrum I fall on. I understand the want and the need to try whatever you can, but I also understand it’s Mom’s body and she is the one who has to do it. We can’t command her to do things and take over in a way that says her opinion doesn’t matter. But at the same time, she has yet to be very realistic about her treatment or where she is regarding her MS forcing us to take over in certain situations.
But more important than the debate involved in getting Mom to try it, I am first wondering if the suggestion to try juicing has some weight or not? There are a few things I read online but then I thought I really need to come here and see what you think. I honestly trust all of you who I have met through this blog more than any research out there. Real people with real stories that I can relate to is what I have found here.
So given the topic of juicing, what do you know? Have you tried it? Have you noticed any improvements in your health? Are there any juice recipes that aren’t bad tasting that you recommend to potentially ease Mom into this? What kind of juicer do you have?
Mom isn’t driving anymore because of her MS and consequently spends most of her weekdays at home. I think I have a tendency to overlook how limiting that would be or how much it could mess with your attitude or outlook on life. I also haven’t given much thought to how it may be a struggle for Mom to find happiness or joy in her daily life.
While I was home for a week over Christmas, I got to take part in one of Mom’s days at home and discovered she finds the joy in her daily life and she finds it in unexpected places. Sister K, Mom and I were sitting around the kitchen table working on Christmas cards when Mom started to get excited because it was time for the Steve Harvey Show. Seeing Mom excited made me excited and I thought I would humor her and watch. But something funny happened. I discovered something I didn’t expect- the Steve Harvey Show is really funny. I ended up loving it! The show is so much more than just a standard afternoon talk show. Steve Harvey is the host of a show geared towards issues and topics women face both good and bad…but no matter what the topic or advice is, he never makes them feel bad about themselves. More importantly though he offers advice in a comical yet very real way that gets to the heart of the issue. Then along the way he has these crazy moments (see below) where he is exercising on elevated shoes that are like walking on rubber hands..and as I sat there and watched this with Mom, we were laughing hysterically. Hysterically.
Steve Harvey 12.27.12
After the show was over, it made me thankful for silly moments like this and silly moments on a TV show like Steve Harvey. It honestly made me thankful for Steve Harvey. Thanks to him I know Mom finds a little bit of laughter everyday mixed in with a little bit of reality. His show lets her escape for an hour everyday from the pain and frustration of her MS and puts a smile on her face. At the end of the day, you have to laugh at life, and I have to laugh at the fact that Mom and I spent one Christmas afternoon bonding over Steve Harvey and his rubber band shoes. No talk of MS for miles. Just laughter. I learned a good lesson from Mom that you can really find joy anywhere if you look hard enough no matter what cards you have been dealt. She just happened to find it from Steve Harvey.
How do you find the joy in your daily life? Do you watch any TV shows that bring humor to your life? Have you ever thought about good or bad, how much TV can impact your world and your mood? Have you ever watched the Steve Harvey Show?
I know I am about to sound like a broken record. To be honest I feel like a broken record. I feel like this is the same thing I have blogged about a hundred times. The same issue my family has been dealing with and we continue to be dealing with..we aren’t going anywhere with it and pretty much staying in the same spot. You are probably just as frustrated hearing about it as I am talking about it. But I have to talk about it. I have to because that is what this blog is for me- it’s where I talk about Mom’s MS, the issues that result from it and sometimes it is the exact same issue but a new day.
Sister K called me this afternoon to tell me Dad was frustrated once more with Mom and her lack of initiative regarding her MS. Their new therapist suggested Mom look into juice drinks that you would make in the blender to help with her spasms. Dad thinks that turned Mom off and she told Dad she didn’t think their therapist needed to come every week. Dad listened and rescheduled for 2 weeks from now. The problem with this is Dad listened and is giving Mom what she wants.Dad had a frustrating night with Mom needing him periodically. We have talked to Dad about getting some outside help. Dad didn’t listen and hasn’t acted on this issue.
Dad then vented to Sister K about all of this. Dad did the same thing with me a few weeks ago. Sister K and I are a bit dumbfounded by the entire thing thinking we don’t know what else to say or do. We realize we are in a tricky spot. Dad doesn’t have much family to talk share this with so we are pretty much it. We don’t want to discourage him from talking to us but we are also at a loss for words or advice. We feel we have given all the advice or suggestions we can and he is the only one who can choose to act on them. It is also difficult because one week Dad is optimistic and a few weeks later he is the polar opposite. It puts Sister K and I on a bit of an emotional roller coaster, unsure of when it will stop.
Part of this may be that the relationship between Dad and Mom is husband and wife. It may be Dad admitting to himself what is happening just as much as Mom needs to admit what is happening to herself. I am not sure what needs to happen or what to even say. But I do know I am seeing the same themes consistently appearing lately. I realize this isn’t a more unique topic or unique situation. It is the same issue I have talked about many times before. But it is an issue that I need to talk about. So here I am. Trying to find a way to deal with this and realizing I still don’t have the answer or the power to do so.
Have you ever had an issue come up repeatedly in your own life that makes you feel like a broken record? Do you believe in the concept that when something gets bad enough people will change? Have you ever had a situation where a caretaker is having trouble but won’t seek the help they need? Do you even understand the phrase “broken record” because I am not sure I do?
Do you tend to think positively? Are you immediately optimistic when life throws you a curve ball? This is not my best trait I must admit. I tend to think a little more pessimistic than optimistic. It is something I would like to change and sometimes I am good at my efforts to change and sometimes I am not.
One area that I seem to struggle with positive thinking is where Mom is concerned. Dad and Mom are meeting with their therapist tonight. Dad called me today and left me a real uplifting message about how he had spoken with the therapist and he had some great ideas and he felt good about everything. His outlook was better than this time yesterday afternoon when he felt frustrated. I must admit I struggle with this. I don’t know if I am just being pessimistic, if Dad is being overly optimistic…or if one of us is being realistic and the other isn’t. But I have my doubts. I guess I just feel like not much is going to change where Mom is concerned because she doesn’t want things to change. And I feel I am admitting that to myself. But when I talk to Dad and hear him so optimistic about Mom improving I begin to feel like I am just being negative. Like I am not thinking positively. I feel wrong for thinking in this way but I don’t know how to change it…or the big question of if I really should change it.
Do you ever struggle to think positive about something after so many negative moments in the past? Do you think sometimes we can mistake negative thinking with realistic thinking? Do you think we should always strive to think positively?