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?
I worry about Dad. This is nothing new. I worry he is taking on too much between his responsibilities at work, his responsibilities with Mom, his responsibilities within our family, a lot of responsibilities that don’t leave a lot of time for himself.
I have had quite a few conversations with him about this. Conversations where he admits it’s tough taking care of everything for Mom and how he never has any time for himself. I know it’s not my responsibility to make sure he gets time for himself. I know I can’t control this situation. I also know that it is Dad’s life. He has to be the one to institute the changes. To make time for himself a priority. To take on less. I can’t do these things for him. But I tend to blame Mom. I get angry and blame Mom for not getting it. For not seeing everything he does and still making him take on more. Little things like picking up shower invitations because she can’t drive…grocery shopping…dropping things off at someone’s house…but that’s what these things are…they are little things. Little things that add up and become big things.
Mom and Dad have been going to church at a local hospital on Sundays instead of our usual church because it is easier for them to get in/out of and easier to make the service. The problem though is there are two times, one at 1:30pm and one at 3:30pm. Well yesterday they missed the 1:30 so they had to go at 3:30. So by the time they are out of there it is 4:00 at the earliest and because Mom taks so long getting ready their entire Sunday has pretty much been wasted…and now Dad has other errands to do on top of this. I got upset. I snapped at Mom. I was mad at her. Mad for what she is doing to Dad. I know he is a grown man. I know he doesn’t need me saving the day but I was mad. I got off the phone and was mad. I felt really upset. I felt helpless. Like I can’t fix anything, I can’t help anything and I feel all alone in my thoughts. No one seems to want to improve this situation. Mom doesn’t get it. Dad won’t stick up for himself. Am I just supposed to stand by and pretend this doesn’t exist? I was mad. I am still sort of frustrated about it. I just feel helpless.
Do you think sometimes you just have to take a step back and “let people be” even though you know it isn’t what’s best? Have you ever found yourself defending a family member who probably didn’t really need defending? Do you think I probably just have to “back off” no matter how hard it is to do?
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?
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?
I love gloves. I notoriously have cold hands and gloves provide the ultimate in warmth. I wish you could wear them year round but it is only really acceptable to wear them in winter. But I was thinking today how gloves provide me the ultimate cover up, enabling my hands to stay warm and function. It got me thinking about how we cover up things in our own lives.
Dad called me today because he and Mom are going to meet with a therapist again tomorrow night. It was advised to Mom and Dad after her last doctor’s visit that they needed to see someone. The main reason is Mom is not admitting to herself or dealing with her MS diagnosis. They met with someone in December and will meet with the person again tomorrow night. I had been asking Dad if they had another appointment scheduled but he thought that with the holidays things seemed to be improving. But now in the second week of January it seems as though we still have the same issues, just a new year.
Dad mentioned Mom’s MS doesn’t seem to be improving and her mobility seems to be getting slower. It is also becoming a little more difficult for him to assist her. These are little things but little things that are big things. He asked if I had noticed anything over Christmas and I said honestly, I think Sister K and I are just turning our head the other way. The holidays were not an appropriate time to bring up this argument again but in many ways I think Sister K and my days of bringing up this argument are gone. I think we have done everything we can and now it is up to Mom.
Someone gave me some good advice once: She said people speak verbally and non-verbally and their non-verbal actions typically mean more than their verbal actions. Mom’s non-verbal actions are very honest and when I stop to think about and look at them they tell a very honest story. The avoidance, the lack of initiative, the negative attitude at times, the contentment with where things are- they tell a lot. A lot that I can’t really write about because I am still working it out in my mind. It’s a cover-up. A cover-up that allows Mom to stay warm and cozy within the life she wants without getting out in the cold and beginning to deal with things. It’s a cover-up that I am not sure any of us have any tools left to uncover. I think Mom may be the only one who can do it.
Do you ever cover things up or not deal with issues in your life? Do you think at a certain point you just can’t push someone to deal with things anymore? What is your favorite thing to wear to keep warm during winter?
On December 23, Sister K, Mom and I all headed to the mall…Husband and Dad headed to the movies together. It was girl time/best friend time/mother-daughter time/all of the above. We were done with our holiday shopping but went to enjoy the sales, soak up the frenzy of the pre-Christmas chaos and spend time together.
As I was there I saw other families together, other mothers and daughters but for the first time I didn’t feel the instant twinge of jealousy I used to feel. Sure Sister K and I pushed our Mom around the mall instead of walking beside her…but instead of focusing on the differences between our Mom and other Moms…I just focused on being with Mom. We had a wonderful day. We wandered around, in and out of the stores, showing Mom things, trying clothes on, stopping to grab something to eat, and to insert a line from a familiar Christmas tune “laughing all the way.” It was a special time and the perfect way to leave the cares of my life behind and become focused on being home with my family for Christmas.
I felt very blessed by the relationship I have with Mom and Sister K. I felt blessed that I “wanted to go home to spend time with them” as I listened to people complain about being home with their parents for holidays. Instead of thinking of the frustrating cards we have been dealt with Mom’s MS I thought about the good cards I have been dealt with my family. I am learning to take all the cards I’ve been dealt, the good and the bad, and to make it work. And if it means taking turns pushing Mom around the mall in her wheelchair, sometimes having some minor issues with navigating through doors, and sometimes taking up too much space- I’ll do it. I’ll do it because as I sit here today I don’t remember those things, I just remember the time spent with Mom.
So a week after Christmas and with the holidays behind, here are some pictures of
Sister K and Mom “rolling” around the mall:
Enjoying the lights of the season
Avoiding the cobble stones to the left- we learned Mom isn’t a fan
We also learned Mom’s wheelchair doubles as shopping bag storage
Did you do anything special with your family over the holiday season? Do you ever focus on the negative cards you’ve been dealt and overlook the positives in the process? Does anyone else enjoy going to the mall to enjoy the pre-Christmas chaos or are you among those still doing last minute holiday shopping up until Christmas Eve?
I am old school and still love my hand written pocket calendar.I like to get out my pen and fill in the dates of a new year. I like to use my pen to cross of the days that have passed. It is how I keep appointments and keep my life organized. My calendar is one of my most favorite things I own. I also love watching my calendar fill up. I get a thrill out of a busy schedule..every once in awhile.
I noticed while I was home that Mom also seems to love calendars. She owns three. She has her Thomas Kinkade calendar which is more of a wall piece of art in the kitchen than actually used as a calendar. She has a white board calendar that sticks to the fridge that does most of our household managing. Last but not least she has has this wooden calendar she has been ordering paper refills to fill up for at least 20 years. This calendar organized our household activities for pretty much my entire childhood until we got the white board one. Now I feel really old.
But I think calendars are magical. Dreaming about the future. What kind of events or appointments will fill up the days. I have also noticed during times of high stress I don’t pay as much attention to mine because it tends to stress me out. I don’t anticipate the next activity or cross out the days as religiously as I normally would. I think I try to block out the passage of time.
With Mom’s MS I feel I have become increasingly more aware of the passage of time. I look towards future months and wonder how Mom will be doing. I look back a few months at how she was doing and where we are today. I can pinpoint her health by looking at events and remembering how she was health-wise when we attended them.The journey of MS can’t be chronicled into appointments and events. It lands on the unexpected. It can squash all other appointments and events in its path. Mom’s MS has a mind of its own and in no way respects or cares about my pocket calendar and my plans.
But I continue on dreaming filling in my calendar. And so does Mom. Because at the end of the day you have to live. I read a quote recently about travel but I think it also applies to my life: “You have to fail to plan and plan to fail.” So I sit here with my calendar knowing that it could all be flipped on its head in a split second…but for now, it is all organized neatly into its dates and times all wrapped up in its maroon cover.
Do you keep a paper calendar or an electronic one? Why do you prefer one over the other? Have you ever been excited about being busy with plans? Does looking at all the days of the year and all the changes that could happen ever overwhelm you? Do you enjoy filling in the dates of your calendar too?
Happy New Year blogging friends- after a bit of a holiday hiatus I am back!
I am also curious…Do you make New Year’s resolutions? I am not big on them. The main reason is because I feel like if you want to make a change in your life do it, don’t wait for a new year to do it. But with that being said, there are a few I am making this year just because I am feeling like the timing aligns well with some changes I want to make in my life.
I thought I’d share these too since I figure that if you are reading this blog you know me pretty well even if we’ve never met in person:
My Superficial Resolution:
1. Stop picking/biting finger nails. This has been a looming issue for me. I actually think I picked it up from Mom which is kind of comical. But as a reward for stopping I made an agreement with myself that I’d treat myself to a manicure.
My Carry over from Last Year Resolution:
2. Cherish the Moments. I have talked a lot about this on here and it was a central theme throughout my holidays. Really trying to be present and almost take a mental snapshot of my time with loved ones or memories with myself that I let slip by or not appreciate. I felt like I really soaked up my time at home with Mom over the holidays, but I also really cherished my time at home. I cherished the little moments with Mom and with my family. I really want to strive to be better at this rather than always thinking two steps ahead or not being fully present.
My Epiphany Resolution:
3. “Evacuate MY dance floor.” I love to dance. This is no secret and I have talked about this many times on this blog. New Year’s Eve as I was staring at a football bowl game Husband was forcing me to watch by taking over our TV, I had a thought- I have really struggled with letting people bother me. The kicker is these are people who in no way directly influence my life on a daily basis. They are people from my past, people I only know about through Facebook or people who used to be friends and I am working through the ending of that friendship. The point though is I allow these people who I never interact with to control my moods sometimes. I allow myself to ruminate on their actions or words that were hurtful to me and in effect I end up in a downward funk. I am realizing though that my family is facing and is going to continue to face some trying times with Mom. And using her as my focus, if there are people in my life who I don’t think I can pick up the phone just to say “I am having a hard time” then those are people who should not be in my life. So in effect I will be asking them to “evacuate my dance floor.” I will not literally be informing them of my decision but I am going to internally hold myself accountable to evacuating them from my dance floor and therefore my thoughts. This is going to be my motto of 2013. Because I do believe I am hitting a point where friendships are harder to maintain, life is throwing bigger curve balls my way and I need to surround myself with people who I want to be surrounded by whether it is being in their company or thinking about them in my mind.
So here we go. Thank you for sticking with me as I kick off 2013. I love this blog and am so thankful for the people who have found it and read it- more than you know. I look forward to navigating 2013 with you by my side and knowing that no matter what life throws at me this year, I am lucky to have this place to come and deal with life.
How were your holidays? Do you believe in New Year’s resolutions? Do you think it’s important to take the time to “cherish the moment” everyday, not just during the holidays? Did you know there is a song called “Evacuate the dance floor”?…it may or may not be my new anthem 🙂