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 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?
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?
I had trouble sleeping last night. I was lying in bed and commanding myself to go to sleep. Go to sleep. Go to sleep. Instead my mind swirled with worry. Swirled with uneasiness about the future. Swirled with imagined “what if” scenarios. None of the “what ifs” were ever good…all bad. All stressful. I felt a lot of anxiety. Then I did fall asleep and would wake up and something would trigger another anxious thought again. I still don’t know why last night caused this or what the root of the issue was…Was it just an isolated sleepless night of worrying or did it mean more than that?
But in the midst of it all I was trying to just lay there and calm myself into a relaxed state instead of the wide awake and stressful state my body felt like. I laid on my back, I put my hands on my stomach and pretended one of my hands was someone else as they held each other, and I envisioned Mom. I envisioned her saying “everything will be okay; everything will be okay.” As I did this, I seemed to move into a more relaxed state. Eventually my mind stopped racing and I drifted off to sleep.
It was a frustrating night to say the least…especially being a Sunday night. I am a little tired today but not as tired as I should be based on the low amounts of sleep I got last night. But the thing I found most interesting in all of it was that at 28, the thought of Mom, my Mom, being there with me calmed me down…in the same way it would have if I was a little kid. And in those moments when I was thinking of Mom, I wasn’t thinking of Mom who has MS, I was just thinking of Mom. This was something MS couldn’t impact because it can’t. It can’t impact the feeling I get from the comfort of feeling or envisioning the presence of my Mom.
Do you ever have trouble sleeping because your mind won’t stop racing? Does it ever happen to you more on a Sunday night with a looming new week ahead? What calms you down or relaxes you? How was your weekend?
I am having a bit of a frustrating day. They are silly reasons but I think the root of them lie in expectations and plans. Two themes in my life that when messed with cause big issues for me. I also realize the things I am upset about today stem from tiny changes to plans and expectations compared to some much bigger issues with plans and expectations I deal with everyday…cue Mom’s MS.
Let’s see if you can follow this: Originally I was going to host my bible study over for a cookie exchange last night. I had to change this because I had a work holiday party come up. Then I rescheduled it for tonight. All was well until a get-together I was supposed to go to last week got rescheduled for tonight. So I moved the cookie exchange to Thursday night….but literally at this point I am still not sure anyone can come. Now my get-together that got rescheduled for tonight has been canceled again…
So here I sit. My plans have gotten changed in all directions. My expectations for my evening and my week have gotten trampled on and I am struggling with how to react.
I mean the bottom line is there is nothing I can do. I have to just roll with it. It kind of reminds me in a far fetched comparison to how I feel about Mom having MS right now. I had all these plans and expectations and because of MS my plans and expectations have gotten trampled on….and I am still figuring out how to react.
It’s just one of those things I guess. But the question remains of how I can better handle these little stampedes life likes to throw at me from time to time. Mom’s MS has provided a permanent stampede everyday but on top of that I have these little ones that like to pop up every once in awhile. I guess I just need to embrace the stampede. Embrace my new plans that will involve spending the evening with Husband and our cat visitor. Spend some time doing laundry and getting caught up on things before the holidays. Spend some time on me. I will embrace the stampede.
Do you ever get frustrated when your plans change– big or small? How do you handle unexpected last minute changes? Have you ever thrown a party you legitimately thought no one may come to? If it happens stay tuned for what may be a Bah Humbug post come Friday!
I have mentioned before, I am a cat person and a dog person- all rolled into one.
Husband only grew up with dogs because his Mom is allergic to cats. Therefore he doesn’t know if he is allergic. This has placed a nice little wedge in any plans of ours for a pet. We could get a dog, but until we live in a house we just don’t think we have the time to devote to it. Recently though someone in his grad program mentioned she was looking for someone to “cat sit” while she was studying abroad for the next few months and we offered. We have our own motives too because it is a true test of whether Husband is or is not allergic to cats.
Well, Chloe arrived last night. It was a funny evening with her getting used to us and us getting used to her. Especially Husband just because he has never been around cats. But I called Mom to tell her about our new furry friend and I could sense some nostalgia for both of us. It made me feel like a little girl again with our own cat. It transported me back in time to our old house…growing up with Sister K, two little girls and our cat we loved to put in baby strollers, carry around the house in the oddest of positions, or even snuggle with to take naps. It’s taken me mentally back in time- a time filled with Mom and her minivan, carting us to lots of activities, volunteering at school, talking on the phone in the kitchen, all sprinkled with memories of my cat throughout. Almost as if I am appreciating childhood and memorializing the memories of it just a little bit more thanks to our new furry friend. My lesson of the day, sometimes it is nice to be nostalgic and to get lost in memories.
Do you allow yourself to get lost in old memories? Do you think it’s difficult to not be sad when you think of a time without illness in your life? Are you a cat person/dog person/neither person/both person/or alternate animal person?
I survived a very rewarding but exhausting weekend filled with coats, coat distribution, and coats clean-up. I survived lots of being on my feet, waking up early, physical activity and not enough sleep. I was going to blog yesterday but I couldn’t get the site to work. I could’ve tried harder but I was tired. So I didn’t.
As you know Husband is in school working on his MBA. Throughout his program I have gotten to know some of the wives in it. Well, this being December marks the end of a semester which also means time to say good-bye for a little while. One difference though is a lot of the people in Husband’s program are studying abroad next semester. We are not but a lot of our good friends will be in Europe beginning in January. I realized this yesterday after what had been a crazy weekend and what is already shaping up to be a crazy week. December always seems to be such a busy time. So I had a bit of a dilemma yesterday- do I try to send an email making plans for a little last minute get-together today or do I just forget it. I thought about it. Something inside said yes and pushed me to do it. That something (or someone I should say) was the voice of Mom. Mom would say “go for it!” So I did. I composed the email, sent it to my friends and pressed send. And then I sat nervously, unsure if anyone would be available or be interested. As it turns out they all were except for a few who were busy. We even changed it from a dinner to a lunch. So that is where I was this afternoon. Because of my lunch break I didn’t have enough time to stay and eat but I got an iced tea, sat and visited until I needed to leave.
As I was driving away, I felt happy. I was smiling. Smiling because this all started with an email I sent out. An email I was a little nervous to send but did anyways because it’s what Mom would tell me to do. Mom who is always planning get-togethers for her own friends. A talent and art form she has taught me whether she knows it or not throughout my entire life. Something I am now pushing and encouraging her to do in spite of her MS. She turned me into the person I am- the self proclaimed planner…but unlike Sister K, I often need Mom’s push too. And in a way she needs mine. Yesterday she pushed me and today I am spending the afternoon happy and smiling because of it. Thanks, Mom. You’re getting pushed next.
Do you ever feel nervous to plan social get-togethers? Do you have a voice inside that tells you to “go for it” when you are feeling nervous? Do you require mid-day caffeine to make it through the day like I do?
Do you love Starbucks? I do. Even though I am not coffee obsessed, I do love a Starbucks drink. I especially love a Starbucks drink when I am feeling exhausted…like right now.
I was talking to Mom this afternoon at lunch and telling her about everything I’d been up to with volunteering for this coat drive. While I was talking to her she was engaged, listening and really taking everything in- this may not seem like a big deal to most people, but it was a big deal to me. It meant Mom was having a good day. It made me smile.
I told Sister K about it later and she was excited too. It’s not because we never have good days or good moments with Mom; however, we realize that when we do have a good conversation, where everything seems to be clicking and aligned, it is important to cherish that moment. To truly appreciate it. To not take it for granted.
One of the biggest lessons I have learned through dealing with Mom’s MS has been don’t take any moments for granted. Cherish the good ones and remember them. Allow yourself to be happy and really feel it when something positive occurs. So today when I got off the phone, I allowed myself to smile and to soak up the happiness from that smile- to smile a smile that said I may be 28, but I just had a great conversation with my Mom and she is proud of me!
Do you allow yourself to truly cherish moments of happiness? Have you ever found yourself taking good moments for granted? Do you enjoy a Starbucks “pick me up” from time to time too?
I am currently on a committee that is helping to plan a big coat drive for the city. The portion I am in charge of involved a coat drive competition between schools and business to see who could raise the most coats. This morning I got to be at a live radio remote at 5:30am where we announced the winners and presented them with banners. Needless to say I am a little tired this afternoon after waking up at 4:30am. It’s been a long day. If this post doesn’t make any sense, that is why.
I am curious if you all send out holiday cards? I have always loved Christmas cards. Ever since I was little Mom has sent them out every year with a picture of our family or Sister K and Me. As I got older I helped her design and address them. Now I have taken on the task of being the main creator of the Christmas card and Christmas letter, getting input from Mom on the picture and design and taking the reins from there. I don’t mind since I happen to love Christmas cards.
But I also think they are interesting. They are a split second, a moment in time when my family takes a picture and sends an image to say “look world, we’re doing okay.” This has become important since Mom got MS. Maybe even more so than it should be. It’s become a way my family makes a visual statement to say we are still smiling. Some people who receive Christmas cards don’t know Mom even has MS. But I think that’s also why I love them so much. It is a way we make a statement not through our actions but through a picture. Behind the smiles no one can see that Mom was struggling to walk to that moment to take this picture; no one can see we were arguing as we tried to get Mom in the car; no one is questioning how we are handling Mom’s MS; no one is watching our every move; we are just sending a stamped smile. A big fat “no comment” to all of your comments and opinions surrounding our life right now. And I enjoy that. I enjoy moments where I am able to “tell off” the world with a smile…instead of using the “words and phrases” I’d really like to use sometimes that are not so nice.
Do you send holiday cards? Do you enjoy sending/receiving them? Do you agree that sometimes it is a way to show a moment in time where your family appears to have it all together? Have you ever told someone off with a smile instead of not so nice words? Do you believe 4:30am is entirely too early to begin anything?