Backing Off

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?

I Feel Sad

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?

Acceptance or Giving Up?

I believe deep down that when the going gets tough we all have two options- to give up or to fight even harder. You like to believe that when presented with a tough situation you would fight. But what do you do when it isn’t you? When the person you want to fight won’t fight? Do you continue fighting with them about fighting harder or begin to accept they may be done fighting?

I just worked through these thoughts on the phone with Dad. Mom has another doctor’s appointment tomorrow with her neurologist. Based on the last one, it is no wonder why these would now give us all reason to squirm. He’d like to talk to her doctor privately beforehand but isn’t sure he will be able to for legal reasons. He also thinks if things get uncomfortable again with the topics we force her to bring up with her doctor she will stop us in the room during her appointments. At which point it allows Mom to speak with the doctor about her reality which isn’t reality at all.

But as I sat listening to Dad, for the thousandth time about the exact same issues we continue having…for the first time I stopped him and really got my words together in a succinct way. I said I think we may be at a point where we have to stop. We can’t continue letting Mom’s MS and her lack of caring about it cast a shadow over our lives. Mom is lucky in ways she doesn’t realize. Lucky she has such a resilient family that when she pushes us we don’t turn away but continue loving her. Sister K and I continue going home to visit. We continue to be there. We continue to fight for our family. But the biggest person this impacts is Dad. He is the one there day in and day out. The one who is most hurt by Mom’s unwillingness to try harder or to care more. I think he believes he has failed her if he gives up. If he begins to accommodate her needs rather than continue to push her.

I am rambling and I am not sure what my point is here. But I do believe you have to meet people where they are at. I was told once that people speak two ways, with their actions and words, and how they speak with their actions is usually more honest than their words. So I have to sit back and look at Mom’s actions. Her complacency with being helpless. Her lack of initiative with anything that could improve her MS. I have to sit back and think that maybe there is an underlying message here and whether we like it or not, maybe it is a message we as a family need to begin to come to grips with and accept.

Have you every been in a situation where you wish someone close to you would fight harder than they do? Do you believe this is “acceptance” or “giving up?” Have you ever had a time where you have had to accept someone’s choices even though you didn’t want to? Do you believe people speak differently with their actions and words?

A Broken Record

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.

Mom isn’t dealing with her MS.

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?

My Two Moms

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

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.

Stop Staring.

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?

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.

“It Bothers Me”

To start I have to say if you have been impacted by Hurricane Sandy in any way please know you are in my thoughts and prayers. I have been following the pictures of the devastation and flooding on twitter today and words can’t describe it. It is truly unimaginable. 

Weather is interesting in that regard. The storms of the weather and the storms of our personal lives. I think I could describe my family’s relationship with MS in that way. We go from blue skies to a turbulent thunderstorm in a split second. As I mentioned, Friday evening we were going to celebrate Mom’s 60th birthday with a nice family dinner. After Husband, Sister K and I arrived home we quickly changed clothes and got ready to leave. Husband left separately to go pick up Grandpa and meet us at the restaurant. Everything seemed to be going smoothly, until the rest of us needed to get in the car.

Getting Mom into the car has become a very stressful exercise. I think Dad is more used to it because he is around it all the time and deals with it everyday, but to be honest it unnerves me. I have to shut my mind down and exit the situation. Not allow myself to think about what is actually happening: Mom holding on to the car and struggling to angle herself the correct direction to sit down. Mom plopping/falling/finding a way to seat herself in the front seat of our family Camry. Then comes the real challenge of getting Mom’s legs into the car. Dad is bent over grunting as he lifts Mom’s legs and tries to swing them into the car. Mom yelling at him at certain points because it hurts, he is doing it wrong, etc. Dad getting frustrated. Mom getting frustrated. Feelings of distress and irritation at the situation. Then they have to do the other leg. Sister K stood by frustrated because she believes Mom isn’t trying to assist Dad and could do more. I just zoned out. Then it’s over and we move on as if nothing has happened.

But it did happen. I watched the entire thing play out. I could try to assist but sometimes it almost makes it more difficult. Mom gets more frustrated. We don’t know the “routine” involved. So we wait and let them do it. Then we move on until the next time. And then the same thing happens again.

I don’t really know what to think about all of this. I know families have their own routines of dealing with various things like this. Mom and Dad seem to have theirs figured out. But the fact that Mom’s ability to get in/out of the car doesn’t seem to be improving bothers me. It bothers me that my parents aren’t taking the SUV they were so proud to drive. It bothers me that these struggles extend beyond the car. It bothers me to watch Mom really struggle walking around the house, having issues picking up her foot just to take a step. Basically I feel like none of this is getting better because in all honesty, I don’t believe it is. To other people I give my canned fake answer that Mom is improving, doing physical therapy, she’s doing great. I say it all with a smile. But here, I can tell the truth and the truth is I don’t believe it’s getting better. I honestly think it may be getting worse. And it bothers me..for so many reasons I can’t put into words…and at the same time can’t figure out how to handle all of this. Because Saturday evening after dinner I got frustrated watching Mom walk around the living room and had to go upstairs. I had to leave the room. It appears my current way of dealing with this is mentally or physically escaping. I know that is wrong, but I don’t know what is right.

Do you think there is a better thought process I should have in these situations? Do you ever struggle to put into words things that bother you? Do you think it’s tough to admit that sometimes people aren’t getting better? Have you been impacted by Hurricane Sandy?

A Loss and a Twinge

This past weekend I had a little reunion with my college best friends/roommates. One of them recently had a baby (recent as in a week ago), so while we were getting together we arranged to stop by and see her. When we stopped by her house, my friend’s Mom was also there since she had come in for the birth of her new granddaughter to help out.

As I watched her Mom there, moving around, helping out and telling stories about the day her daughter delivered, I couldn’t help but feel a twinge of something. It wasn’t jealousy and it wasn’t anger, but it was something. A strange feeling. A feeling of knowing deep down that someday if Husband and I have children, it won’t be the same way for me. Mom won’t be able to just come and stay for awhile by herself. She won’t be driving herself to see me at the hospital. I don’t think she’ll be able to carry a baby or get up to help with things by herself. Little things. Little things that are not on my radar right now but someday they will be.

I know having children works differently for everyone. Some people have parents who are very involved and others are not. I come from a long line of women whose moms came and assisted once their babies were born. But for Sister K and me, I am not sure if this will be the case. I am not sure how it will work. I know it bothers Mom because she has mentioned it to me hypothetically before. We are a ways off from it being a real life issue, so I blow it off when she talks about it. But yesterday as I sat in my friend’s house looking at her Mom and her baby I couldn’t help but feel it. Almost like a twinge of loss. Mourning the loss of something that hasn’t even happened yet- the loss of a vision of Mom helping me take care of a baby someday that always sat in my mind. Now I am trying to dispel this dream from my mind as I embrace the new reality I have been given. I know it’s impossible to prepare for but I feel as though maybe in thinking about it now if that day comes I will be more ready for it.

Have you ever dealt with the reality of an idea you had for the future changing?  Have you ever felt the same twinge in life when you are around other people?  Does my twinge even make sense?