The Disappearing Act

The number one thing people like to say to my family is “let me know if you need anything.”  I realize they probably have good intentions but I have also realized this is their key phrase for several reasons:

  • It gets it mentally “off their plate.” They can think of my family and then think to themselves that they need not worry because they said “let me know if you need anything.”
  • They care but do not know what else to say.
  • They care but do not know what to really offer to do.

Here’s the issue with this when your Mom has something like MS- MS is not temporary. It’s not like Mom is in the hospital for a little period of time and we need someone to feed the dogs. It’s not like Mom is going to get well and needing your help is temporary. MS is going to continue but I have noticed that the offers of “let me know if you need anything” tend to discontinue after awhile. Not that people do not offer, instead they disappear.

I have noticed recently that a lot of our family friends don’t call as much. Couples my parents used to get together with do not get together with Mom or Dad or call to check in on them. Instead they have just disappeared. Mom gets down thinking she doesn’t have any friends. The primary people in her life are Dad and her two care takers. She text messages her close group of friends from college on a daily basis on a big group text. She keeps up with people on Facebook. She essentially watches life go by as she sits still at home.

It is sad and something that is starting to bother me. I told Sister K from now on when people ask if they can do anything or ask how Mom is doing, instead of giving them an answer about her physical health, I am simply going to respond “She’s really lonely. It would be great if you would give her a call or stop by to say hi.”

I am curious what people’s responses would be in that scenario. Would they act? Would they call? Would they follow through? I think the sad part is I honestly do not know. People get busy. They forget. They don’t understand what our family is going through. They don’t understand what it is like to have a Mom in this situation.

What lesson have I learned in all of this? I have learned do not ask if people need anything. Instead insert yourself into their life and do something. Do not wait to be called. Take the initiative and make the call.

Choose not to disappear. Appear. Appear again. And appear again. I promise I am never going to forget who showed up during this time. I am also never going to forget those who disappeared.

What are your thoughts on the phrase “let me know if you need anything?” Has your family ever gone through something tough and people stepped up or people disappeared? How do you manage emotions of being disappointed by people in your life? 

To Care or Not Care What Others Think

Mom is on a lot of medications. I also know that cognitive issues can result because of MS. I go back and forth on whether Mom’s changes mentally are from MS or from medications. Dad seems to think medications. I think it is easier for him to think that way. I tend to think in the middle.

One thing that makes this tough this is the invention of a little thing called Facebook. Sometimes Mom will comment on people’s walls several times in an hour not realizing she already did that…or not realizing it is strange. It is difficult for me because Mom is the person who taught me my social cues, taught me how to behave and how to act and now I am watching her change in that manner.

Specifically yesterday I logged on to Facebook and saw she had commented on a family friend’s wall three times in less than an hour. It came up on my news feed so I can only imagine how many other people’s news feeds it came up on too. Normally I am good with ignoring these things but this time I wasn’t. I called home and Dad answered. I explained what had happened and he just responded by first defending Mom saying “I don’t think that is that big of a deal.” And then when I got further into it he said “look I just don’t care. If people want to think things let them think things. I am not going to go in there and tell your Mom something and embarrass her.” Which I get…yes. But still it bothered me. I think we are fighting several battles right now and one is in the court of public opinion of Mom and our family. I don’t like when people are around Mom and talk to her like they would if she was an elderly Grandmother. I don’t like when Mom’s friends talk to me about their own Moms who are in their 80s and compare my Mom to them. It all upsets me. So when I see things like this happen it frustrates me since it means this is just one more instance for people to see.

Maybe it is something I need to come to terms with…I can’t fix any of this or make it go away. I especially cannot control Mom. I can’t change people’s opinions. But it’s hard. And sometimes I snap. Sometimes I can’t make a joke of this situation and sometimes it bothers me. Last night was one of those instances.

How do you manage people’s opinions? Do you worry what other people think or are you how I aspire to be and don’t care? Does it bother you when people treat you or a loved one differently than they should be treated?

Is It Us or Is It MS?

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?

New Year, New Perspectives

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 🙂

Embrace the Stampede

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!

A Shower of Nerves

It’s Friday and it’s a Friday where I am heading home to my parents house to visit for the weekend. Mom and I have a baby shower to attend tomorrow for a childhood friend of mine. It will be a solo event for us. Sister K is not coming into town and Dad doesn’t attend too many baby showers…

But I am a little nervous and I am not sure why. It is always strange to go to things like showers with Mom and see people from the past. They know Mom has MS but it’s still hard. I was figuring out what to wear and was even taking into consideration wearing heels vs flats since I would be pushing a wheelchair. I am going to be solo responsible for Mom and I am a little anxious about it.  Just the dynamics. Getting her into the restaurant, where we will sit, will people stare at us, how will this work, etc. Mobility is not as easy as it used to be for her making these things a little more complicated for us. I am sure it will all be fine, just like it always is; there will even be minor hiccups in the process but they will be fine too.

Today though, I can’t predict what will happen or how this will play out. This is a part of Mom’s MS I struggle with a lot. I struggle with my desire for the simplicity of how things used to be or how things are in comparison to other friends of mine attending showers with their Moms. I also get a little more nervous when I have to do these things on my own compared to doing them with Sister K and getting to “tag team” the situation.

So there it is. Here comes the weekend. I can see it on the horizon. Hope you have a great one! Thanks for sticking with me as I do my best to create my own manual for dealing with Mom’s MS.

Do you think I am thinking too much about the weekend ahead and need to try to just go with these things as they come? How do people react to you when your circumstances change from how they used to be? What do you have planned this weekend?

Man’s Best Friend

When I was little we had a cat. It was a stray cat who we found in our backyard living under our deck and ended up adopting. Katie Cat was my best friend in the world and she was with us from when I was about 6 years old to 20 years old.

During that time period though we also adopted a dachshund named Lucy. Sister K really wanted a dog and a family we knew wasn’t able to care for their dachshund anymore. Then the Spring after Katie Cat passed away, Sister K wanted to get her best friend a dog for her birthday. Mom had spoken with the parents, they said it was fine and she went to the shelter to adopt a puppy. They gave it to Sister K’s best friend and 2 days later the parents returned with the dog saying their daughter was allergic. We don’t totally believe that but at the same time we didn’t know what else to do, so Daisy became part of the family too. And we became the owners of two dogs. We had gone from a family with one cat to a family of dogs. I find this funny because most people are either always cat people or always dog people, but we experienced this strange evolution to where we are today.

At the time though, I didn’t realize the intricate ways these two dogs would become such an important part of our lives. Mom didn’t have MS yet and we had no idea the diagnosis would be coming many years later. But now she does. She has MS and we still have these two dogs. Daisy and Lucy have become her companions in a house that could be sad and depressing since she spends most days there. In a way they keep her active and accountable requiring her to get up and let them outside, feed them or play ball with them. They keep her spirits up, make her laugh and in many ways I believe they look after her too.

When Mom had her relapse in May and was sick at home prior to it, they laid on the bed with her and did not want to leave. I believe they sensed something was wrong. And on most days they stay with her, following her around the house wherever she goes. Especially our dachshund Lucy. She walks directly in front of Mom wherever she goes. She also pauses to wait for Mom to catch up with her walker before walking further. We fondly refer to this as “the parade” at our house and refer to Lucy as the Grand Marshal.

It’s amazing how these four legged animals came into our lives expected and unexpectedly, yet I could not imagine life without them. I know I can never thank them for the companionship and important role they provide in Mom’s life, but I hope somehow they know this. They are more than pets to us- they are members of the family.

Do you have pets? Have they developed personalities making them a member of the family too? Do you believe pets have a way of knowing when things are wrong with their owners? Are you a dog person, cat person or other kind of animal person?

Unexpected “Emotional Dump”

Do you ever have moments where someone contacts you out of the blue- a text, an email a phone call…and before you know it you are thinking I didn’t know how badly I needed to talk to someone. You don’t realize how badly you are in need of an “emotional dump” and an encouraging word until after it’s over.

This happened yesterday to me. One of my best friends who was my roommate before Husband and I got married texted me out of the blue to say “Tomorrow is Friday!” It was a random text. And all of a sudden before I knew it words were pouring out of me over texts, I couldn’t keep up with my thoughts and I just let everything I was thinking out. Then I caught myself thinking I bet she thinks I am crazy or is wishing she had never texted me in the first place. But she responded and she kept responding. She was encouraging, she was saying all the right things, she was giving me a text message pep talk with exactly what I needed to hear at that moment. I later said it was so strange she just happened to message because I was en route to a happy hour and was in my post work exhausted state of mind…but the timing was perfect. She said, “I don’t know why I just felt like I needed to message you; I couldn’t think of anything to say so I just said something silly.”

I need to remember these moments. I think they happen to me more than I realize. They happen when I am worried about Mom, overwhelmed by life, stressed by my own life…they just happen. The thing is they don’t come in the form of a giant lightning bolt of wisdom, instead they come in very simple forms like a blog post comment or a silly text message from a friend. It’s a reminder of the power of friends. It’s also a reminder of the power of this blog. All of your comments and notes are not lost on me and I do believe each of you holds a purpose in my life bigger than you realize in why you come here and comment. I hope today I can be the cheerleader in a tough moment for you and all of my friends the way so many people are for me. Cheers to helping each other make it through the messy parts of life!

Have you ever had a moment where someone contacts you out of the blue but in hindsight you realize how much you needed to talk to someone? Do you like the phrase “emotional dump?” I just invented it yesterday. What are your plans for the weekend? Sister K and I are heading to another college football game tomorrow. Have a great weekend!

Friendship on Friday

Friends can be like family. But the difference is they can come and go. Some will stay with you for a lifetime and some will stay with you for a season. Leaving a mark on our heart no matter how long their stay.

I look at Mom and Dad and their friends. They have friends from all periods of life. Before kids, after kids, parents of our friends, work friends, church friends, the list goes on. What I think is interesting though is I believe certain people are brought in and out of our lives depending on when we need them. Sometimes I think people are placed in our lives before we even know the strong presence they will serve at a later time…and sadly when their presence is no longer beneficial, it can also be time to move on.

I am only 28 but I already have had many experiences like this with my own friends. Coming in and out. Certain ones having a stronger presence than others at certain times. Almost like they silently take turns. Like life is a play and they are being directed in and out of different acts of my life. But as I have dealt with some big challenges with Mom’s MS, I have also learned which friends I can depend on and which ones I can call. Sister K has learned the same lesson. You can’t predict how your friends will react when you are in a crisis until you are actually in a crisis. It is surprising in good ways and bad ways.

When Mom was in the hospital in May, Sister K and I sent an email to all of our close friends asking them to send Mom cards. We didn’t really know what to expect but we knew they would cheer her up. The end result was inspiring. Mom received stacks of cards- funny, uplifting, light-hearted, even musical. And with each card a message of inspiration. A message to let her know they were there for her because she was important to Sister K and me; since they were our friends that meant Mom was important to them too. Mom has a special relationship with our friends as well as us. She is like a second Mom to many of the friends in our lives. When things get tough, it is nice knowing that in addition to Sister K and me she has an entire network out there of second children waiting to send their love and support to her too.

I am off to visit one of my college best friends this weekend so I guess you could say I have friendship and nostalgia on my mind. What are you up to this weekend? Do you have friends from different periods of life? Have you ever been amazed at the support you receive from friends or surprised when they didn’t meet your expectations? Have a wonderful weekend!

Seeking Approval.

“Hell hath no fury like a mother scorned.”

This pretty much describes Mom and her role of defending Sister K and me in life. My happy go lucky, unassuming mother remained that way, until you messed with her child. Then she became a lion.

7th Grade was a tough year for me. I switched schools in middle school and had to deal with making new friends at a new school at a time when no one wanted to be my friend. I am not going to relive the experience here but will say it was awful. 17 years later it’s still difficult for me to think about. At the same time it showed me a different side of Mom. I had never seen her so upset and defensive of something I was going through. I learned very quickly you do not mess with Mom’s daughters.

Recently I have had an issue with a friend. The issue actually began during my wedding planning 2 years ago and I feel like it’s finally coming to closure. What is coming to closure is the fact that we are not friends anymore and will not be friends in the future. I won’t get into it but what I will say is it’s hard. The neutral notes: Something sad happened. I acted how I thought was best and would do it again based on the situation and based on everything I was managing at the time- wedding planning, dealing with a Mom newly diagnosed with MS slowly declining, and a Grandmother dying of Alzheimer’s. She didn’t realize the stress I was under. In her eyes, my response wasn’t enough for her. It’s almost a he said/she said situation now. Bottom line though is if it’s really a friendship it’s worth fighting for, forgiving and moving on, realizing we both probably made mistakes- I don’t think she sees it that way. That’s fine. I am working towards moving on realizing it is all I can do.

The point though is through talking with a mutual friend I realized the full extent of all of this on Friday night. I was upset and kind of defeated. As I updated Mom on the phone about it she rose her voice and defended me. Defended me to thin air. No one could hear except Dad who was in the kitchen, but she defended me. I don’t know why but it was nice. Knowing that in her eyes what I did wasn’t as bad as it was being made out to be made me feel less upset. I had her approval.

I know it may seem strange that at 28 I still want Mom’s approval, but I do. It’s also interesting to me because sometimes it is tough approval to get. Sometimes it is hard to talk to Mom. Sometimes I think she isn’t connecting what is happening or what I want her response to be the way she used to. This continues to be hard. I am having to in a sense move on from my quest for approval. Find a way to know I am not always going to have her approval. First of all I am an adult and our relationship is evolving as a result of this. But then mix in MS and how my role as Mom’s daughter is also changing and that makes this difficult too. It’s something I am wrestling with. Wanting approval- not getting the response I want- dealing with it.

Do you ever want approval from the people in your life? If you have children have you ever watched yourself turn into a lion to protect your cubs? Any tough moments realizing friendships are over? My hearts go out to the USA on the anniversary of 9-11 and all those who lost their lives.