A Secret Struggle

I have been having trouble writing recently. I think because (knock on wood) things seem to be going well with Mom. We seem to have reached a bit of a rhythm with all of this. I have also had a lot going on personally that was independent of Mom’s MS.

But one thing I haven’t been sharing and feel nervous discussing is the effect Mom’s MS is having on her cognitively. I have said before that this symptom is the hardest one for me to deal with- I can deal with Mom’s exhaustion, her trouble walking, her physical changes but the mental changes, they really bother me.

They bother me in a lot of ways. They are also one of the symptoms I don’t share with anyone. I am not sure why. Everyone seems to have opinions on Mom’s health these days. And they aren’t just opinions, they are strong words. Words that are heavy implying in many ways that we aren’t doing enough. These words though relate to the physical changes they are seeing in Mom. What people don’t realize is that there are many layers to this battle with MS and the physical is only the surface. In many ways it is only the beginning.

I also don’t like to talk about the mental changes because it is very sad for me. I am not sure how people on this blog would react to how I have been handling it…how Sister K and I handle it in order to keep ourselves moving forward. I am not even sure I am allowing myself to fully process and accept it. In many ways I think I am “masking my mourning.” I think Sister K and I possibly both are. Sister K has told me we can’t take this seriously and we have to laugh about it. And we do. After a conversation with Mom that doesn’t go in the right direction and pretty much goes in no direction, I call Sister K and we laugh. People may disagree with that approach. We aren’t making fun of the situation but in laughing about it, I think it makes it seem not so real.

These cognitive changes though, they are there. They are also tough. They are tough because I am someone who calls Mom everyday, typically on my lunch break. These phone calls though are becoming more fluffy in nature and more of a struggle for me as I am having trouble talking to Mom. I think she struggles to fully understand everything going on in my life. I am not sure she is fully focused and listening. In plain words, I feel like I am drifting apart from her. I find it incredibly unfair.

I also am 28. When my friends talk about their Moms it’s not like there is someone else in the group who also shares what I am going through. It’s not like other Moms may also have cognitive issues at this point. I hear about the advice their Mom may have given them, things they have done with their Mom, basically no matter what they say I am hearing their Mom is “normal” and mine is not. And I mask my emotions. I stay quiet. I engage about their Mom. I don’t engage about my own. It’s hard.

I know many people have different stories of things they have experienced with their parents. I feel blessed to have the Mom I have. I am in no way complaining or making fun of a tough situation. I am just expressing my sadness…mourning what I think is beginning to be the loss of Mom the way she once was…and finding a way to express this in order to accept the Mom she is becoming. I am also wanting to share this with you because this is part of my journey- another chapter in dealing with Mom’s MS.

Are there any struggles your loved ones have faced where certain symptoms bother you more than others? Do you have any experience dealing with cognitive issues as a result of an illness? Do you think it’s okay to laugh to deal with serious issues sometimes?

Hope for a Minute

I am having a tough week. Well more like a tough couple of weeks. It puts things into perspective because there was a time when this had to do with Mom’s MS and today my tough time has nothing to do with Mom’s MS. I suppose there is a silver lining in this. I wish I could take a break from “finding the silver lining” but that’s life.

I was talking to Dad yesterday and said I just feel hopeless. I feel like I have hoped and been optimistic and I am worn out. He gave me some good advice. He said don’t consider hope to be something you have to do forever. Just focus on the next hour and say, for the next hour I am going to be hopeful. When that hour is up you can go back to being down or can try another hour. Take it a minute at a time, an hour at a time, a day at a time and work up to feeling hopeful all the time.

I have to admit it is sort of working. Right now I am in increments of minutes. I’ve made it to about 5/10 today before I have my negativity resurface. It’s not much, but it’s a start.

How do you stay hopeful/optimistic when life seems to be leading you any way except positively? Have you ever tried to incorporate changes into your life on a smaller level to combat being overwhelmed? What is a positive escape when you need a “life break”? This is your weekly reminder- Dancing With The Stars is tonight! Let’s go Team Lachey- get out the reality tv vote tonight so he can live to see another week of dancing!

Hang In There

This is a blog about Mom and it’s also a blog about me. It’s about dealing with Mom’s MS but it’s about me dealing with Mom’s MS. Because of this you have to know a little about me. I have to share what’s going on in my life so you know where my head is at when things happen. Obviously when life is skipping by blissfully I am more equipped to handle Mom’s MS symptoms. When life is giving me nonstop lemons I have a shorter fuse for how I deal Mom’s MS.

Right now is tough because Husband is looking for jobs. He is a grad student getting his MBA and looking for jobs. It is competitive. He works so hard and it doesn’t seem to matter. It is just a tough job environment right now and he has been dealt a lot of rejections. The point though is I am down. It’s a lot to be dealing with for both of us. Yesterday was our 2 year anniversary and we had a wonderful dinner celebrating. Then I woke up this morning and felt like my 24 hour break from reality was over.

What’s interesting though is how much the importance of Mom’s MS has shifted in my mind as I deal with all of this. I call her, I tell her what’s going on and I don’t ask one thing about how she is feeling. But at the same time the MS is still very much there based on the comments she makes that are now very normal within conversation. Comments such as: “hold on a second, walking to the table and can’t walk and talk with the walker;” “trying to reach for an ingredient to make a brisket but Sister K rearranged everything in the pantry and now the items I need are high up and I can’t reach them;” “hold on had to let the dogs in and try not to fall geting the door open and bribing with treats.” All of these are little comments that have undertones of Mom’s MS sprinkled throughout. They are comments that in the past may have made me sad as I interpreted them to all signal a digression in Mom because of MS.

I think the point to all of this is there was a time when I thought I’d never be able to absorb all of this into my life and let everything intertwine naturally. But now I believe it has in many ways. Normal conversation with these sorts of comments mixed in doesn’t bother me, it’s just natural. Mom having a walker, that’s normal now too. It’s a new normal.

At the end of the conversation Mom said “hang in there, I love you” before she hung up. It meant a lot. Not sure why. In may ways it made me think of how I am dealing with Mom’s MS- I am hanging in there and I am handling it all better. So in thinking about this I am giving myself a pep talk too- hang in there with life and eventually things will turn around too.

How do you get through moments when it seems like you just can’t win in life? What are your magic words of support to give to others- is “hang in there” ever used? It’s a beautiful day where I am sitting or I should say sitting looking outside…how is your weather transitioning into fall?

A Little Rant

My mom walks with a walker. But aside from that, she is still the same person and would like to be treated the same way she has always been treated by friends and family. She doesn’t want a lot of attention drawn to her. In my head this logical train of thought makes sense.

For some reason though there is a disconnect between my thoughts on this and the way Mom is treated at gatherings with friends and family. People seem to insist that because Mom has a walker, she goes first. For example at a dinner gathering, people insist on Mom walking first to get to the table and they follow behind. They insist upon waiting on the driveway until we walk all the way to our car as a family and even watch us get Mom in the car. The biggest one recently was at a family birthday party gathering- they announced it was time to eat and then insisted Mom go first along with her 85 year old uncle who also has trouble walking to be followed by the other elderly grandparents present. This irritated me. I know they were trying to be nice but it was irritating. Irritating on a number of levels. First of all, I understand people giving respect to elderly relatives and allowing them to get their food first. However, Mom doesn’t want to be lumped into the same category as her elderly relatives just because she has a walker. It also takes Mom awhile to move around. Then she feels pressured because everyone is staring, waiting for her to move, waiting for her to get in her car or get to the restaurant table. On top of that, I was just going to get Mom’s plate of food for her so she didn’t have to drawn any attention to herself. So then I had to explain that instead of just doing it quietly. 

I have talked to Husband about how much this frustrates me. He said he thinks people just think they are being courteous and don’t know what else to do. What I would like to tell everyone else is to just be normal. Go walk to your table, go get in the car, go ahead and start the food line- we don’t mind. The fact that you are stopping to wait also means you are stopping to stare. This then adds pressure and stress to an already sometimes stressful situation. Becuase yes, it takes awhile for Mom to move. Sometimes we have to help her move. We don’t want a lot people standing there staring and waiting while this is happening.

This is kind of a bit of a rant. I do see both sides and understand the point of view everyone is taking. What I don’t know is how to fix this. I don’t know if in the moment I should suggest to people to go ahead and not wait for us. I just find it awkward and irritating. I think I take it more personally because in my eyes Mom isn’t an elderly grandparent, she is my 59 year old Mom. So don’t treat her like she is my grandmother, treat her like the person she is, my Mom.

Do you have any experiences where you think people may just be trying to be nice but in the process they are irritating you? Do you think people have a tendency to treat others with handicap needs like they are on an elderly level? Am I being too sensitive and need to blow this off?

Done Being Polite

Everyone has an opinion. I always knew this was true but am amazed at how this becomes even more of an issue when your Mom is diagnosed with MS. Everyone has an opinion about Mom’s MS- they have an opinion about to handle the disease, how we should act, how Mom should be treated, what we are doing right and what we are doing wrong.

I was told this weekend via someone else that a comment had been made referring to how we are handling Mom’s MS. Yes this would classify as gossip on their end and gossip on my end. I also don’t care. The comment: “Their Mom is just really not doing well and I don’t think any of them are taking it seriously.”

My initial reaction: Are you kidding me?

But as I write this, I have let it settle and I’ve given it some thought. There are a number of issues I have with this that I have been thinking about. First of all, why do people feel like they have a right to tell us how to handle our Mom? Is it because of our age? Yes Sister K and I are 25 and 28 but that doesn’t mean we are children. I personally think we have done a great job considering the circumstances we have been given and how all of this has happened. We have also been given a big choice in all of this. A choice I am not sure everyone would make the same way we are- We could choose to ignore this situation entirely and let it rip our family apart, or we could fight it. We fight it. But no one commeds us for that. They just look at whatever it is we aren’t doing.

Which brings me to another issue. What aren’t we doing and how exactly are we ignoring this? We have gotten Mom a physical therapist, she is improving little by little everyday, we are trying to keep her attitude as positive as possible but we cannot force her to do anything. I think people forget Mom is 60, not 85 with a disease like Alzheimer’s. She is still cognitively very aware of what is going on and we do not control her life. This is not a situation where you are dealing with an elderly grandparent. I am dealing with my middle aged Mom. The circumstances are completely different.

Mom and Dad are working through this together. We are all working through this together. We are doing our best. There is no manual yet everyone seems to think they have one. There is also no cure for MS. This isn’t going to magically disappear. While I am incredibly frustrated by this one comment it is really just representative of other comments that people mention to us wherever we go. I don’t understand what gives people the right to tell us what we should be doing that we aren’t already doing and why they seem to know all the answers when they haven’t even dealt with a situation like this. For the millionth time and I mean this as kindly as possible- your Mom having Alzheimer’s is in no way the same as my Mom having MS. Your 85 year old Mom is not the same as my 60 year old Mom.

I need to be more assertive when these comments are made to me. I have made a promise to myself that from now on as comments like this are made to me I am not going to just politely listen and pretend to appreciate their concern. I am going to respond in a manner explaining we are doing the best we can. I am going to respond in a manner that is not rude but also not nice. Implying I don’t want anymore advice that I never asked for in the first place.

Why do you think people offer opinions when you didn’t even ask for them? Do you think this is a lack of social skills or something greater? How would you respond? Would you be bothered by this or do you think I need to blow these comments off? Have people ever done this to you regarding issues in your own life?

My Secret Challenge

I am 28. This is not a newsflash around here. But the newsflash is I am 28 and still want my Mom’s attention and approval. I know it sounds selfish and whiny, I know it is selfish and whiny- I want to be able to call her and have her available to talk to me; I want Mom to respond to any issues by being on my side; I want my relationship with her to remain the same. No changes.

But there has been a change. But this part of MS doesn’t bring challenges as obvious as the other changes. It’s more of a secret challenge Sister K and I get to face. It’s the the challenge of communication- especially when the primary tool we use to communicate is the phone. This challenge peers its head when I call Mom wanting to talk to her but she is dizzy and laying down because of her spasm medicine. Or she is having difficulty focusing and following what I am saying. Or she can’t help me through my problem or issue by responding the way I want.

This happened last night. I was walking to my car to drive home from work. I wanted to chat with Mom. And we did briefly but then she had to go because she wasn’t feeling well and laying down. I felt kind of defeated. Frustrated. I know this is selfish. Very selfish. But it doesn’t make the feelings go away. It’s hard that Sister K and I comment to each other when we have a really good conversation with Mom now- When she is listening and paying attention and responding and we are interacting. This used to be the norm. It isn’t anymore and it’s difficult.

But this is the side of MS not everyone sees. It’s a side that not everyone notices. Don’t get me wrong, that is good. I personally don’t want everyone to have one more thing they decide to ask me about concerning Mom. But at the same time dealing with it makes me feel alone. It also makes me feel guilty for even being frustrated with the situation given what other circumstances could exist. I know avoiding this frustration goes directly back to taking life one day at a time. The frustration of having a good conversation one day but a bad one the next. It’s tough. It’s hard to deal with because there is already little predictability with MS and I feel like all I am trying to do is grab on to something constant and predictable. Instead I am finding myself adding one more item to the list of “things I cannot control” regarding my life now with Mom’s MS. And even moreso I never would have predicted “talking to Mom on the phone” would be on this list to begin with.

Do you face any communication challenges with people in your life? How do you cope with conversations not meeting your expectations? Do you think this ties into taking life one day at a time or just acceptance of change? Do you still seek your parent’s communication and approval?

The Kitchen

Our kitchen in my parent’s house seems to be the backdrop for all the serious family discussions we have ever had. They don’t take place on the couches in the living room, we never use the dining room, occasionally when we were younger and in trouble we had to go talk to my parents in their bedroom, but the kitchen has always been where all the action happens. It is where our family plays out. Where we eat, where we laugh, where we have spontaneous dance parties, where we yell, where we fight, where we make up, where we celebrate coming home, where we say good bye to our parents- it all takes place in the kitchen.

So Saturday night it only makes sense that when we needed to have a serious discussion with Mom, it took place in the kitchen. It was a conversation of sorts that had been on Sister K’s mind and my mind a lot recently. I knew there were things that needed to be said to both Mom and Dad. We were concerned about Dad being spread too thin, we were frustrated with Mom’s approach to everything, in a way we believe Mom isn’t admitting she has MS. She admitted that to us in so many words as we were discussing it Saturday night. It was a heated discussion. It was tough. A lot was said. I can’t even really remember all of it. Mom was very upset by the time we were done. She went to bed crying and didn’t sleep a lot. I don’t think any of us slept a lot. To say it again, it was a tough conversation.

When we were done, Mom and Dad left the room to get ready for bed. I stood in the kitchen with Sister K pouring myself a glass of water. She started crying. I gave her a hug. I didn’t cry though which was surprising. I did feel a surge of emotions though. I am sorry this had to come to this- I am sorry these thoughts have been brewing inside of our heads and we had to talk about them like this; I am sorry they couldn’t be solved without a big conversation like this; I am frustrated Mom and Dad haven’t taken the initiative to solve these issues without a big conversation like this; I am sad we made Mom so upset; I am sad Mom is so sad; I am nervous about what the future holds; I feel relief knowing I got a lot off of my chest about everything; I also feel worried we don’t know what we are doing or how to handle this; and, I still feel confused as to why all of this is happening to us. Why us. Why my family. Why can’t this all just go away. Where is all of this heading.

In 24 hours we had gone from having the best moments with Mom to having the worst moments with Mom. In the same way that the memory of our wonderful day will always be there, so will the memory of one of our darkest discussions. I think the reason it was so tough is because Mom just kept saying she had no idea we felt this way. Part of me thinks that may in fact be the case. If she isn’t admitting she has MS then she isn’t admitting any of these other issues exist. This is what we are facing now. But I reminded myself and reminded Sister K, if we didn’t care about our family we wouldn’t have had that discussion. We would’ve simply walked away from it all. We wouldn’t be fighting with our family for our family. We would have given up. We wouldn’t care anymore. And that is a situation neither of us could imagine.

Was there a resolution to all of this? Not really. Do I know if it will do any good? No I don’t. But what I do know is Sister K and I don’t feel this enormous weight of things left unsaid. Not making Mom aware of our fears regarding Dad and the stress he is under and not making her aware of the fears regarding herself. I don’t know where it will all head from here. That is where I realize even more so that none of this is in my control. The only thing I can control is my faith. It’s my faith that is going to give me what I need to get me through this. That and a kitchen that has seen my family through the smiles and the tears of my life. Our kitchen is like an old friend. It believe in us, believes in our family. I believe it knows we will get through this, that we will soon gather there again to laugh and commisserate as we continue to deal with all life throws at us, whether it is MS related or not.

Is there a room in your house that serves as the backdrop to the majority of your family moments? Do you have any experience confronting tough issues with loved ones? Would you believe we are not big cooks in my family even though we spend the majority of our time in the kitchen?  

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?

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?

It’s A Rambling Kind of Day

My post yesterday sparked a few comments that I loved. Comments that have had my thoughts flying. Flying in all directions. Leading me to think sometimes you need to just ramble. 

To paraphrase the two comments that really stood out to me:

“The real surprise would be if MS did not change your Mom.”
“The changes from MS are happening faster than you can keep up with them.”

I read these and just paused for a minute. They were right. They were spot on. Then a flood of thoughts hit me. A flood of mixed up thoughts.

I thought to myself, duh. Why am I even questioning if Mom is changing. She is obviously changing. MS is a powerful disease. Do I really think this isn’t going to change her? But then this makes me sad. Sad that MS is winning in a way. Changing her in ways I don’t want her to change. Changing her spirit. Changing her attitude. Changes I can’t control and can’t do anything about. Mad because I can’t do anything about these changes. Furstrated because yet again I feel helpless. I take one step forward mentally and then a week later I am taking two steps back. I feel like this is a never ending cycle. Maybe it is. But it is a frustrating one. How am I supposed to deal with this when I can’t get a grasp on what is happening.

Which leads me to the 2nd comment, the changes are happening faster than I can keep up with. Faster because they aren’t all physical. For every physical change there is a mental one. Just as I get a grip on the phsyical, here comes the mental. In the same breath I am beginning to feel like I can deal with the physical changes better than the mental ones. Take away Mom’s ability to walk but don’t take away Mom. Her spirit. Her personality. Start messing with that and I begin to feel like a bigger part of me is being messed with.

And I don’t know how to handle it. I know very few people who can relate. When I think of the other people in my life who are my age, I think of no one who understands what this is like. At the same time there also aren’t many people I would share this part with. This is the not so pretty side. The side that isn’t full of positive and uplifting thoughts. This is the cold truth of what is going on. This is my life. In many ways at times I feel like it is my secret life. A part of MS that I don’t want to share with many people because it is personal. And sad. And saying it out loud to someone other than my immediately family makes it even more real. To watch people’s faces. Watch them struggle for words. I don’t want to go through it. In the end the only other person who gets it from the same perspective is Sister K. She’s the one I can say the dark thoughts to, tell the frustrating conversations without editing any details. It’s Sister K and Me navigating these changes. These changes that are coming faster than we can keep up with. And won’t seem to stop.     

Do you ever feel like sometimes you need to ramble? Do you ever feel like your thoughts are happening faster than you can keep up with? Thank you for your comments. Thankful for the support I have received here.