My Two Moms

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I am working through a lot of feelings in my mind over the past 24 hours. I am trying to find a way to somehow get a grip on the changes going on with Mom. As I sat in Mom’s doctor’s office yesterday while she was getting upset at Dad and me I had this realization- this is not Mom speaking, this is MS speaking. It reminded me of what I used to say to my Grandpa when my Grandmother who had Alzheimer’s would be so mean to him- it’s not her, it’s the Alzheimer’s.

It is incredibly difficult for me to on one side be so angry at Mom but then on the other side I am laughing and talking about meaningless stuff. I can’t hate her. She is my Mom. I am not going to cut her out of my life. She is my Mom. I’m not going to stop speaking to her. She is my Mom. But in the same breath, as I sat there yesterday and watched her I couldn’t help but think, this isn’t my Mom.

In a perfect world I wouldn’t have to split these two identities up. In a perfect world Mom would cope with the fact that she has MS and start to accept it and deal with it instead of lashing out with such anger and borderline depression. But I don’t live in that perfect world. In my world I have a Mom who sometimes is the most wonderful Mom in the world and is the woman who is one of my best friends and confidante. Then it flips and I have a Mom who is angry, depressed, hurting, upset and creates a person who I don’t recognize. A person who I struggle to understand and a person who makes me angry in return.

I am not sure if it is the right frame of mind to take or not, but for the next few days I am going to try it out. Try to rationalize my two Moms to see if it can help me get a grip on the mix of emotions I am currently feeling.

**I can’t thank you enough for the support I received from such wonderful readers yesterday. Your comments, feedback and support meant the world to me. I pour my heart out on this blog and I never know how it will be received or how it will be taken by others. I am finding that I have made my own friends here in this virtual world as I navigate this sticky part of my life. You come here to listen to me share and not to judge. It means so much. I wanted to say thank you for being part of my journey in dealing with my Mom’s MS.**

Have you ever seen two distinct and conflicting personalities in someone you love because of a disease? Do you think this is a good or bad approach to try to take?

Officially at a Loss for Words

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I don’t even know where to begin to explain my day. Where to begin to explain my emotions. Where to begin to explain how I am processing my morning. So I am just going to jump right in…

Dad had knee surgery for a torn meniscus last Tuesday. As of today he can drive but he can’t help Mom in and out of the car. So this morning, I stayed at home to accompany Mom and Dad to one of Mom’s doctors appointments with her neurologist. Then I would drive back here and go to work this afternoon. To start Mom was frustrated her appointment was so early in the morning. She doesn’t like mornings. She made this known. The reason the appointment was early and had been moved up from her original slotted time is because we have been concerned she may be experiencing a relapse of some sort with her diminishing abilities to walk.

All is well once we get to the doctor’s office. The waiting room, the pre-exam room- Mom and I are looking at the new Oprah magazine and checking out Oprah’s favorite things. Then the doctor comes in and then my morning gets flipped on its head.

The doctor is asking Mom simple questions-

Have you fallen at all recently? Mom answers no. I stare at her stunned. Mom has fallen 4 times in the past 3 weeks. Dad politely explains she has fallen and we are concerned. Mom gives Dad a death look. She explains the reasons for every fall. Regardless of the reasons, she has still fallen.

How is your mobility? Mom answers fine- she uses a walker at home and the wheelchair out in public. This time I explain that is what we are concerned about. Her physical therapist has noticed significant decreases in her mobility from where she was a few months ago. We have noticed it as well. This time I get the death look.

At some point amidst all this discussion Mom begins to get very irritated with both Dad and me. We were being polite and not being aggressive. We were voicing our concerns as best as we knew how, knowing they would lead to irritation on her part. The following statements come out towards Dad: “There is no cure for this. You keep saying to work harder so I’ll be able to walk. I am not going to be able to walk. I have a disease. I wish you would just leave me alone. You both stress me out.”

The Doctor brings up taking another MRI to see if there are possibly more lesions causing the walking issues. Mom flips out about the MRI. Says she doesn’t like doing them. They are uncomfortable in the small confined space, she has to get a shot, she becomes very distressed and has to lay still and she can’t lay still.

I begin at another point to talk to the Doctor about the progression of MS. Where is this headed? Could Mom end up bedridden if she doesn’t do something or take a more proactive approach with her health? The Doctor tells Mom her main concern right now is Mom’s mood. She tells Mom she would like her to go see a counselor and there are some that have been recommended by the MS Society. She tells Mom she doesn’t think she has dealt with this…has admitted to herself that she has MS. She tells Mom the choice to get an MRI is up to her. It is her health. It is her body and her decision. She looks at Mom while she says this to reiterate that it is her choice. I respected that a lot. Mom is supposed to let her know what she decides. That’s where we left it.

I cannot even process all of that right now. I really can’t. Mom cried the entire way to the car. Didn’t speak to Dad or I. Fell asleep on the way home and went to lay down when we got home. We picked up Subway sandwiches, I loaded my car and drove an hour and a half straight to work. Amidst all of this I almost had a meltdown over a woman being snippy to me about a temporary parking permit because I am in Husband’s car today. I feel I am officially on overload. I am frustrated. I am angry. I am sad. I am irritated. I am also at a loss. I am mad my family is stuck dealing with this. I am mad it is easier for other people to deal with and not my Mom. I am mad I got the Mom who won’t be proactive in anything having to do with her health. I am mad because I don’t believe this has to be this hard. MS shouldn’t be this dark cloud hanging over our life. It should just be part of our life. And the biggest shock was when the Doctor brought up Mom’s mood I wanted to look at her and go what mood? This is Mom whenever we speak about MS. Her mood and anger didn’t even affect me. I am used to it. I shouldn’t be used to that. Ever.

I am also mad because I predict Mom will not have the MRI and she will not go to counseling. Dad may go but she won’t. And there will be no more discussion about this in her mind. So that just leaves all of us sitting here not knowing what we are supposed to do. Sitting here in our own loss as this dark cloud hangs over our lives as well.

What do you do when you feel emotionally overloaded? Have you ever almost cried when someone was rude to you when you’re having a bad day? Currently the only thing getting me through my day is a cup of Starbucks and knowing I get to watch the Dancing With The Stars finale tonight.

Thankful for Feeling Sad

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I stayed up very late last night making cake balls to take to Husband’s family’s Thanksgiving. So I am tired today and my head is not working properly. I can make the cake balls portion but it is the bark melted covering on the outside where I have issues making them look presentable and not a disaster.

Then Sister K called since she is home and we all used “Face Time” on the iPhone to late night chat. So one thing led to another and it was midnight before I went to sleep.

Being married is tough for me around the holidays because we have to split time between my family and Husband’s family. So far we have just been alternating Thanksgiving with his family, Christmas with mine, then switch the next year and so on….so this year it’s Thanksgiving with his family and Christmas with mine. But it doesn’t change this tiny feeling inside of me as I head off to celebrate a holiday without my family- I miss them. To put it even more simply- I miss my Mom. Mom has always had a way of making the holidays special. They have always been low-key occasions but special at the same time. A very come one, come all..you are not a guest in our home, you are automatic family. It’s hard to imagine everyone eating Thanksgiving without me. Sitting around our kitchen table in that green ivy filled kitchen. Getting recipes together, making drinks, snacking on appetizers, all of it.

I know these are simple memories. Our holidays have changed some in part because of Mom’s MS. We don’t make all of the food anymore but order some of it from a local restaurant. We have done this to make things easier…to make things less stressful on Mom and that is fine by us. We are easy to please. But the point though is even in its imperfect state, the holidays at home with my family are perfect to me. And today I have a tiny twinge of sadness that I am trying to mask with a smile on my face. But I am thankful for that sadness. Thankful I love my family enough to miss them at the holidays and thankful for the blessing of them this Thanksgiving.

What are your plans for Thanksgiving? How do you divide your time between families? Do you do all your own cooking or buy anything pre-made? So thankful for my readers! Wishing you a wonderful Thanksgiving!

My Twinkie Filled Childhood

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You have probably heard that the Twinkie is in trouble since the company that creates them is filing for bankruptcy. Thinking of Twinkie’s made me nostalgic thinking of my childhood. Thinking of Mom buying Twinkie’s for Sister K and me, as well as those cream-filled chocolate cupcakes with the white wirl on top. Nostalgia.

It seems hard these days to reminisce about the past when I look at where we are now. Finding the balance in my head adjusting to Mom from childhood and Mom now. How she has changed. How our roles have changed. I know growing up can be painful but I guess I never expected to be dealing with a Mom with MS in the midst of it. It goes back to my struggle with expectations. Setting expectations and the disappointment when the expectations don’t come to fruition.

But here I am in the present. Looking at an image of a Twinkie and thinking about my childhood house. Thinking about my childhood in general- a Barbie house in the dining room, a Fisher Price kitchen set in the kitchen, constant dance performances in the living room and never ending afternoons spent in dress-up clothes. My memories are magical. They are free of stress. They are blissful. They are the polar opposite of life today. But in many ways, maybe that is the way it was supposed to be. Maybe those care free afternoons at home were teaching Sister K and me valuable lessons in becoming good people- the kind of people who would one day help their Mom deal with MS. The kind of people who wouldn’t walk away from their Mom in the midst of distress but instead would run to her no matter how difficult it was at times.

Thank you Twinkie’s for being part of my childhood and part of my memories. Thank you for playing a part oh the journey that prepared me to be the person I am today.

Do you have any childhood snack treats you fondly remember? Do you find it painful to grow up sometimes? Are you a fan of Twinkie’s? Husband informed me he was more of a “Little Debbie guy.” I was shocked.

A Little Thing

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Every week Dad buys Mom a bouquet of flowers. Flowers are a little thing. A little thing, a small gesture but it brings a big smile.

Mom doesn’t leave the house a lot. She can’t unless one of us is going with her. She has been forced, not by her choosing, to give up a lot of her freedom. I need to remember to think about what that must be like. Losing the freedom to just get in the car and drive somewhere. Run a simple errand. Go to the post office. She can’t do any of it anymore. Dad realizes this. He realizes her house has now become her safety blanket. Her house is now her world. He knows he can’t do much to change this but the one small thing he can do is buy Mom flowers. Flowers to brighten her day. Flowers to brighten her kitchen. They are a little thing that makes a big difference.

What kind of little things do you do that may mean a lot to someone? Do you enjoy having fresh flowers in your house? What is your favorite flower?

Stop Staring.

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People apparently like to stare. I don’t know why. I don’t know what inside of a person makes them want to stare but they do. They tend to stare specifically at my family and how we move Mom around. I would love to say this doesn’t bother me but it does. It especially bothers me more when it is happening at a family gathering or a party with friends. Why do people stare?

As a child I can remember distinctly Mom telling Sister K and me the phrase “Don’t stare.” She would say this when we would see someone who might have some sort of disability or may be different from us. She would say this because as children our instinct is to stare. It was one of what I would call Mom’s cardinal rules. I figured everyone knew this rule. Naively I especially figured adults knew this rule, but I am finding out they don’t.

We were at a family birthday party this past summer and everyone was lining up for a family picture. We were the last to get situated. The rest of our extended family seemed to move rather quickly to get in place. Then they just stood there and stared as Mom moved slowly with her walker and we followed around across the living room floor. Later that night when we had said good-bye in front of the house they just stood there again. Stood there and stared as Mom walked slowly to the car. Stared as we got her into the car. They didn’t speak. They just stared.

Similar things happen at parties we go to. There is a lot to maneuver and manage quickly without trying to draw attention to us. All while keeping a calm happy look on our face. It’s tough. We wait for the right moment when no one seems to be looking, then we move Mom from her wheelchair to a chair at the table. We shift her legs. Sometimes we literally move them. Sometimes we literally have to bend them. We help her stand. We help her balance. Then we do it again at the end. Even if she stays in her wheelchair there is always getting her into the car. The bottom line is there is always something. At the same time there seems to always be someone staring.

A word to society: Stop staring. As a family we are under enough internal stress in these situations ourselves and it would be helpful if you would just leave us alone and continue on as if nothing different is happening. Continue on in whatever else is happening and stop staring at us. How would you feel if you were in our shoes and we were staring at you? I am curious what people would say if I asked them that question. Maybe I should start.

Do you have any experience with people staring in difficult situations? Do you think there is a reason people do this? Were you ever taught not to stare? Do you think I could just be more sensitive to this and need to get over it?

Is It a Relapse or Just MS?

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MS confuses me. I am no expert on it and the more I try to learn about it the more questions I have than answers. The other issue is Mom doesn’t take much initiative to learn about it herself so that’s tough since it involves her. I think Mom prefers to avoid dealing with it whether than learning about it…leaving the messy decision making and responsibilities part of this up to us. It’s just how this works. It’s how Mom works.

This past weekend I was home to visit Mom and Dad. The past few times I have seen Mom I have noticed she seems to be having more trouble than usual with walking. She is having issues bending her legs when she sits in the car. She is having trouble picking her legs up at times and we lift them for her. This past weekend she fell while we were at Grandpa’s house. It was a scary moment because she physically does not have the strength to get herself up off the ground or to push herself up. So there I was with Dad trying to get her up but again you are lifting dead weight which makes it more difficult. Dad told me she fell again last night walking to the bedroom.

There is definite cause for concern but I can’t determine how much. I don’t understand MS relapses. Mom has only had one and it occurred this past June. But in the weeks leading up to it we did not know it was a relapse that was occurring but thought it was a number of other issues to include a broken hip and herniated disc. It ended up being a relapse and we realized it once she was in the hospital because she had lost the ability to move both of her legs. We didn’t know what was causing this. The hospital determined it was a relapse.

This time seeing what is occurring I am wondering if we are entering the beginning stages of another relapse or if this is unfortunately the progression MS takes for certain individuals.

How do you know the difference? At what point should you be concerned and at what point should you begin to accept this is sadly the progression of MS? Any advice or thoughts you may have would be appreciated. Dad has called Mom’s doctor and is waiting for a callback to determine if she should move up her appointment to this week. But I also realize that sometimes the greatest things I have learned have been from other people I have met in the blogging world going through their own situations.

A Shower of Nerves

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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?

So Complicated

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As we get older there are traditional roles we fill. Parents take care of children. Then children get older and take care of their parents. The tough part of this equation is when you are the parent trying to take care of your own parent but you need to be taken care of too. Insert Mom.

Mom’s caught in a tough spot right now and I know she feels it. We don’t ever talk about it but I know it’s there. Her father, Papa as I call him on this blog, is our only grandparent living. He is 87 years old and still lives at his house about 15 minutes from my parent’s house. He is in great health and still very active. He still drives but there are certain occasions when it is better if we drive him around- a doctor’s appointment for his eyes, a longer trip out of town, or a night time activity.

In a perfect world this wouldn’t be a big deal because Mom would still be active as well and would be able to drive and pick him up for these appointments. But the world we live in right now Mom doesn’t drive, and to be honest, requires more assistance to be taken places than Papa. That is tough too. It goes against what is “supposed to happen.” Against what the “plan of life” tells us will happen.

So tonight I sit here struggling. We all are struggling. Struggling because there are times when this is not easy. The arrangements to be made, the sacrifices we each make and the way it all plays out- the way life is unfolding for us is tough and it seems every time we turn around it seems to be getting tougher.

Have you ever cared for an elderly parent? Do you make sacrifices for loved ones or struggle trying to make everyone happy? Do you ever stop and think this is not how this was supposed to be?

The Changing Faces of Shopping

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I know it’s a little early to begin talking about Christmas but I think it is acceptable to start talking about Christmas shopping. Specifically in my family, Christmas shopping has definitely evolved.

Mom has always loved Christmas and growing up I would hear her brag to her friends about how her Christmas shopping was done by July. I can envision her driving around in her minivan while we were at school buying things for people as she saw them and then hiding the gifts in the back of her closet. That vision seems like a long time ago. It makes me nostalgic but I find it important to remember those memories.

The point through is now instead of driving around, Mom opens her iPad and shops around all while sitting at the kitchen table. She tells us to email her “links” instead of the traditional handwritten Christmas list. And though the methods of obtaining the gifts may be different, she still feels useful and in charge of Christmas gifts just like she always was. This is important. It’s another way we fight to to continue living as we always have and another way thanks to modern technology Mom can still feel like Mom…especially at Christmas.

How do you holiday shop? Are there little responsibilities in your life like Christmas shopping that would be hard for you to have taken away? Do you prefer internet shopping? Have you started your Christmas shopping yet?