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? 

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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?