The “Special Needs Family”

Mom has been having some issues this week with what the home health doctor thinks is her sciatic nerve. Dad had to practically commit an “act of God” to get someone from her doctor’s office to call him back with some pain medicine on Monday and Tuesday. I am learning that you literally have to take the motto “the squeaky wheel gets the grease” when it comes to dealing with neurologists. Maybe the ones where we live just are not that great or maybe it is the field of neurology- I’d be curious what your experiences have been? We are already on our second one and I don’t think there are very many others to choose from unfortunately. The doctor is good, it’s just the process involved if you have an issue outside of your appointment and the lack of communication follow through.

But I bring all of this up because this coming weekend Mom and Dad were supposed to come visit because we have a family wedding to attend. With Mom not doing so well, Dad has discussed with me several times the likely decision of not going to it. This is difficult because it involves Mom’s friends from college and one of their daughters. Going to the wedding is in many ways more for her than for us.

Aside from just the logistics of getting her here right now, I know Mom is not in the best shape and I don’t want her friends to see her like this right now. I was talking to Dad about how after awhile you just get tired of being seen as the “special needs family.” You get tired of the extra effort involved in getting Mom to these things, get tired of everyone treating us differently, the stares, people telling you how they think Mom is getting worse, wanting to get into your business about what you could be doing better….it goes on and on…

I know Mom has MS and I know this is just the card our family has been dealt. But that doesn’t mean I don’t get tired of dealing with the extra issues that come with the territory- the struggle to get easily in and out of places; the stares that come with this struggle; the comments that follow. It’s just frustrating, especially while I get to stand by and watch all of her other friends get around just fine. I have heard before it takes a special family to deal with everything we have going on and I know we are truly one of a kind to be able to handle it- but that doesn’t mean that I don’t get tired of it and wish it would all just go away. That’s how I am feeling lately as MS seems to be throwing more curve balls and I am struggling to keep up.

Do you think I am awful for admitting I get tired of being a “special needs family”? Do you ever struggle with how others treat you because of a disability either to you or to a loved one? Have you had issues with doctors being responsive outside of a scheduled appointment?

To Juice or Not to Juice

My family is not a big Whole Foods shopping family. We have never been big on organic foods, ingredients in foods, etc. There is nothing wrong with it, but it hasn’t been our frame of mind…until recently. Last week Mom and Dad’s therapist suggested to them that they try juicing to help with relieving some of the pain and symptoms of Mom’s MS. Dad is really interested in this because he is also willing to try anything to help Mom. Mom not so much.

I have taken a step back from the disagreement because I am not sure which end of the spectrum I fall on. I understand the want and the need to try whatever you can, but I also understand it’s Mom’s body and she is the one who has to do it. We can’t command her to do things and take over in a way that says her opinion doesn’t matter. But at the same time, she has yet to be very realistic about her treatment or where she is regarding her MS forcing us to take over in certain situations.

But more important than the debate involved in getting Mom to try it, I am first wondering if the suggestion to try juicing has some weight or not? There are a few things I read online but then I thought I really need to come here and see what you think. I honestly trust all of you who I have met through this blog more than any research out there. Real people with real stories that I can relate to is what I have found here.

So given the topic of juicing, what do you know? Have you tried it? Have you noticed any improvements in your health? Are there any juice recipes that aren’t bad tasting that you recommend to potentially ease Mom into this? What kind of juicer do you have?

Up and Down

Do you ever ride elevators? I do…everyday. It’s how I get in and out of my office. I have often thought of them as the connection between two worlds. I board the elevator en route to my “working self.” In the evening I board the elevator en route to my “real self.” But while I am in the elevator it’s just quiet and mindless time with myself as I transition and switch gears. This morning I really felt that transition, and in a way, I didn’t want it to end.

I called Dad’s cell phone this morning while I was driving to work just to see how everything was going. It was off so for the next 5 minutes I debated calling home- Dad was either still home getting ready for work or he was at work and in a meeting. So I called….it rang about 6 times, I nearly hung up figuring Mom was there but sleeping and then Dad answered. Dad got on the phone and said he was just sitting at the kitchen table praying for help with everything and I called…it was strange.

On Monday Mom’s doctor switched her spasm medication to Baclofen. Beginning yesterday, Mom and Dad started seeing real improvements with Mom’s walking and her muscle ability. Then last night Mom was sick and my parents had a tough night. Dad doesn’t think Mom ate enough yesterday and that mixed with an active day seems to make Mom’s systems go very out of whack. But regardless, it was a very tough night. I have had those nights before with Mom and they can be exhausting in ways you don’t even realize. To put a complicated experience simply, they are draining.

Dad knows he has some tough decisions to make regarding Mom. He has found a counselor and is going to approach the topic with Mom. Regardless of Mom’s decision, Dad said he needs to see someone. The person he found deals primarily with people diagnosed with diseases like MS and he comes to your house. We’ll see how it goes, but I don’t predict Mom will take this well. I am realizing though that Mom’s MS is impacting each of us differently. Dad, Sister K and I are each impacted by this and the two people whose experiences are the most similar are Sister K and me. While we can relate to Dad, we also cannot because this is his wife he is going through this with, not his Mom. Even though we are all in the same family, the relationship is different. The stress involved is different and the emotions are different.

I talked to Dad pretty much until I got to work and then I stood outside my building talking to him a little longer. I then walked inside and got into the elevator. I stood there with my head leaned back against the wall and just let my mind go numb. I told myself that when those doors opened the thoughts associated with Mom’s MS needed to move to the back of my mind and the positive, friendly and happy employee that I am needed to move to the front. When I leave work today I will shift my mind again. But this morning I was thankful for my quiet and alone time in the elevator. I was able to give myself a pep talk and give my mind a rest behind the doors of the elevator. It gave me a space to be completely alone as I moved both physically and mentally between places.

Do you ride elevators often? Have you ever seen an elevator as a transition place between two different places? Do you get a secret joy when the elevator goes the entire distance you need without stopping? Now for the fun one, have you ever gotten stuck in an elevator?? (I have…) Hope you have a great weekend!

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.

“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?

Handling The Impossible

Dad is spread too thin. I have been thinking this in the back of my mind for awhile. This weekend it became more than a thought. I drove home for the weekend because we had a family friend in town. I had heard earlier in the day Dad’s back was hurting him very badly. He had said it was hurting the day before as a result of sleeping on Sister K’s couch bed. On Friday he went to the chiropractor. By Friday evening when I saw him I could tell he was in pain but was still moving around and functioning. In a sense he doesn’t have a choice not to. He was hunched over and I was concerned. It was one thing to have the thought in the back of my mind that Dad is taking on too much with work, social obligations and caring for Mom. It was another to see what can happen because of it.

It scared me. It continues to scare me. Saturday I took Mom for a few hours and we went to run some errands with Grandpa and went to lunch. I told Dad to stay home and relax. He even admitted he felt weird doing it but at the same time when I got back he admitted how nice it felt. How he hadn’t been in any pain all morning.

Saturday afternoon we talked about how he may need to bring in some extra help in some regard with Mom. He admitted it may be time. We tried to figure out the specific needs of our family. I think the consensus is right now he needs someone to assist in managing the house in some regard. Running errands, grocery shopping, straightening the house, etc. He is working a full day, then coming home at night and running errands and managing the house. He admits it is becoming too much.

But this doesn’t change the fact that I am scared. I am also scared because in a way I have known for some time this was going to happen. I have known Dad is spread too thin. I thought something may happen. And it did. It could have been worse but it wasn’t. But the point is it could have and it could be next time. Dad is the anchor of our family right now. A family that’s being hit with new challenges and changes everyday. Changes that I am struggling with more and more everyday. This weekend I struggled a lot. As I struggled I think I misplaced my anger, fear, and frustration. They came out with Mom even though I know it isn’t her fault. It is the nature of MS. It is how they are coping with the disease. But it still makes me mad. Mad and scared. It makes me feel like coping with all of this is impossible. Like I am going to struggle permanently so I better start getting used to it.

Curious if you have MS, what kind of additional support do you have if any? As a caretaker, what kind of additional support do you have? How do you handle not misplacing your frustration with a situation? How do you keep your cool when faced with constant pressure?

My Personal Olympic Trial

The Summer Olympics Opening Ceremony is tonight. I have been thinking about this a lot recently. Yes because of the Olympics but also because of Mom. It has made me think a lot about time. Specifically the passage of 4 years. What has transpired since the last time I watched a Summer Olympics Opening Ceremony.

It was July 2008. I had just finished graduate school and moved to the same city as my boyfriend to see if our relationship would work in the same city. We had been long distance for 2 years. That boyfriend is now Husband so I think you can fill in the blanks on if we succeeded. I was moving in with my college friend L. Mom was in town helping me unpack. My mom handled the movers arrival because I had just started working at my new job. The evening of the opening ceremonies she and I were shopping at Bed, Bath and Beyond for a few things I needed. We had dinner together at TGIFridays. Then Husband came over to my new apartment to assemble my bookcase and watch the opening ceremonies.

I am thinking a lot about Mom because so much has happened that I could have never predicted that evening as I walked around BB&B with her. The main difference, she was walking freely around BB&B. She was visiting me by herself. She was my fearless, independent Mom who arrived, took care of me, helped me unpack and then left.

Fast forward to today. Since then Mom has been diagnosed with MS (2009) and today is having incredible difficulty walking with her walker at home and using a wheelchair when we are out in public. I have been quitely thinking about this in the back of my mind over the past week almost in shock. In shock at how much life can change in 4 years. In good ways and bad ways. It makes me nervous for the next 4 years. I don’t know where Mom’s health is headed and it is scary. What form will life take as we watch the opening ceremonies of the next Summer Olympics.

So while the Olympics are a time of celebration and excitement together as a country, this time it has personally been a time of reflection about the past and the future as well as the present. It reiterates that I don’t know the course life will take. I cannot control the future. All I can do is prepare myself for the unexpected. I didn’t know then that I was preparing for today. The same way I don’t know how today is preparing me for 4 years from now. The future is an unknown. For all of us. But having seen how unknown it really is in comparison to 4 years ago I feel a little more nervous about it than I used to. A tough realization I am admitting to myself on this otherwise celebratory day.

Will you be watching the opening ceremonies of the Olympics tonight? Where were you 4 years ago for the Summer Oympics in Beijing? How do you handle the unknown of the future? Where do you hope to be 4 years from now?

Circling The Issues

Last night I flew home from a weekend of visiting my college best friends. I could have driven but got a good deal on a flight and since I am trying to preserve my car until Husband is done with school I thought why not save the miles and fly.

I was laughing about the irony of this decision last night as a huge rainstorm landed smack on top of the airport I was flying into causing us to have to circle the area in the air until we could land. After 30 minutes of circling and knowing Sister K was waiting in the cell phone lot for me worried, we landed safely and I was happy to be back on the ground.

I knew one way or another we would land, it was either going to be in my city or a city nearby. I was praying it would be my city becuase if it was another city I was just imagining the mess I was going to be in trying to make it back. Renting a car/continuing on the plane, how would that work. But when this is happening in a plane you don’t have any choice. You literally have to just “go with the flow.” That is what traveling amounts to most of the time, especially air travel. You have to “go with the flow” because you literally have no control. The pilot is in control and you are in the passenger seat. If you think about it the only thing you have control over is what kind of drink you would like and turning off your electronic devices.

I am feeling like that in life right now. In a way with Mom’s MS I am not in control. She isn’t either, but she has a little more control over how she handles it than I do. But the tricky part is at what point do I have to acknowledge that she may not be utilizing her control in the best manner? At what point do we begin taking part of the control? Realizing allowing her full control is not benefitting her anymore. I know those are dark sentences. Maybe even a bit unspoken territory. But it is there I struggle. There I begin to feel like a bad daughter. Most daughters deal with this battle when their parents are more elderly, their cognitive state more deteriorated, a point when it is more acceptable to take this control. I am a lot younger and so is Mom, yet at the same time Sister K and I feel like we are hitting a wall and needing to take some control. But we struggle because this is also our Mom. I want to respect her but at a certain point I am beginning to think you have to invoke “tough love.”

It’s messy. I am trying to figure that out right now. Talking to Dad about it quite a bit right now. Talking about how to handle certain issues also feels as though we are infringing upon my parents’ marriage. Their way of doing things. The dance they have been doing for the past 31 years. At the same time I also think MS changed the rules on this. This is not just about Mom and Dad but it’s about our entire family. All of us dealing with this together. And the control and the decisions Mom makes impact all of us in one form or another. I feel it’s time for some big decisions. I feel it’s time to stop circling the issues and to just land, as painful as it may be.

How do you handle decisions with your loved ones? Do you believe there is a fine line to be walked in “taking control?” Do you have any crazy stories from plane flights?

Baby Step Expectations

I am having a fight in my mind. A fight with expectations. I have noticed in the past year that I have trouble with expectations. I expect people to treat me the way I would treat them. I expect life to go a certain way because I obeyed the rules. The problem is that is not how life works. And now I am having a fight with expectations for Mom’s health. In the simplest definition, I have been taught that when you are sick you go to the hospital. But you go there to get better. Once you are better you go home. That is an expectation I have of how a visit to the hospital is supposed to work.

This time though is different.  Mom was in the hospital. She did go there to get better.  But today I realized something. I think in some weird way I thought this hospital visit was going to cure her MS or make her greatly improve. Then that thought shifted. It became about the rehab facility. Mom will go to rehab for a few weeks and and she will be walking out of there greatly improved. The problem with these thoughts is that’s not how this is going to work.

I know Mom is going to improve. She is improving more and more everyday. But these are very little improvements. They are big improvements but little at the same time. She is walking around with her walker little by little. She is doing physical therapy and doing what she can do. From where I sat writing this a week ago, these are major improvements.

The problem though is in my mind. I think I almost feel disappointed. Then I feel awful admitting that I feel disappointed because I should feel thankful for how far we’ve come.  And I do feel thankful. But I still feel disappointed because I thought Mom would immediately just bounce back. Sure she’d still need her walker but she’d be moving much faster. She’d start physical therapy and her mobility would improve to where she was at the onset of the diease. She’d be “better.”

I am trying to remind myself that is not how this is going to work. This is not how MS works.  MS is not going to magically leave our lives. Mom is not going to be magically cured. Mom’s recovery is going to be a process filled with baby steps. Literally and figuratively. 

I feel a bit like I am on an emotional rollercoaster. Monday night driving back I was so happy and thankful that Mom was settled in a better place. But I think these were tricky thoughts to have. I think deep down I thought she’d be automatically recovering too. Today I am settling into the reality that this is not the case. It’s going to be a slow process. I am fighting my mind’s natural inclination to slip into a funk. I am consciously making myself remain hopful for the baby step improvements. I am telling myself if you take enough baby steps you will see a big step. This is yet another reminder that I need to be patient. Learn to take life one day at a time.

Do you have trouble taking life one day at at a time? Do you think it’s hard when you realize sometimes a visit to the hospital is not as simple as just being sick and getting better? Have you ever had trouble with expectations?