This whole “My Mom has MS thing” is not easy. I know nobody ever said it would be but it is seriously not easy. It’s not easy to think about. It’s not easy to talk about. It’s not easy.
I have hesitated to come here and write these thoughts down. I think I have mentioned this before but many times the act of writing down my thoughts about Mom’s MS makes it more real. It was one thing when her MS was secured in a tight neat little box that I felt we as a family had some control over. It is very different now that I feel we have no control over and sometimes I feel like we can’t even get a grip on it.
First Mom couldn’t walk. Now Mom can’t stand. Her handwriting seems to be slipping. I know this because I always loved her handwriting. She sent me a package in the mail and just getting the package out of my mailbox was emotional upon seeing the handwriting that had addressed it to me. I didn’t recognize it. Much like I am having trouble recognizing Mom.
It all goes back to writing things down. In this case receiving this package was a written statement to me that Mom is different. Our conversations on the phone…the lunchtime chats I have been having with her practically everyday on my lunch hour for the past five years are different. They are full of lots of the same conversations we have already had, simple thoughts, simple topics, nothing too complex and they are quick. They too make me sad.
None of this is easy and coming here to share it isn’t easy either. But I am because I think it’s important. This is part of my journey in dealing with Mom’s MS and unfortunately a lot of that involves the path Mom’s MS is taking compared to others. So I can’t promise I can talk openly about this everyday like I used to because part of my coping involves talking about it and the other part involves not talking about these changes and the evolution of our family with it. Sister K told me the other day on the phone: “I think we just have to accept Mom the way she is now and realize we are never going back.” It was profound and a simple thought but it was true. We are never going back- we are only going forward and that forward is into a place of unknown.
Thanks for reading as always. It means so much to have my space that is mine where I can come and share my thoughts.
“When it gets bad enough he will ask for help.”
Those words were told to me awhile ago by a friend when I shared my concerns with Dad being spread too thin between working and caring for Mom full-time. But sometimes I believe God forces you to make a decision you have been putting off by making other parts of your life begin to spin and that is exactly what has happened to Dad the past few weeks.
Dad was recently promoted which is really exciting but it also means more demands at work. At the same time, Mom seems to be digressing. She is having a harder time moving around lately and her MS is demanding more from Dad. I have been worried about Dad for some time but like I said above, I realized at some point I had to stop voicing my concerns and realize it was not my place to demand Dad get help with caring for Mom. The relationship between Mom and me verses Mom and Dad is different. They are married. They are husband and wife and I believe Dad is trying to do everything he can to fulfill his vow to be there for Mom in sickness and in health. I can’t get in the middle and force him into making decisions he isn’t ready to make.
But Sunday Mom seemed to be struggling and Monday she woke up with excruciating pain in her leg. Dad needed to be at work. This has happened before but this time his work demands are greater and he realized it was the beginning of being unable to be in two places at once. He was stuck. He called the nurse who had come to our house to administer Mom’s steroid infusion. She had spoken with Dad awhile back about staff she has that will come out and assist around the house. The nurse came out to meet with him and she and Dad began to move forward with making arrangements for someone to come out to be with Mom during the day.
So when I spoke with Mom during lunch yesterday, her new home helper/nurse/assistant…for blog purposes I’ll call her Nurse B…Nurse B was at our house with Dad getting acquainted with everything. I tried to talk to Mom like everything was normal but she was tired and explaining she was frustrated because she preferred to be by herself.
Even after all the time I have spent trying to get Dad to make this decision, I have to admit it was strange to think Nurse B was there. She was there to take care of Mom. My mom who has always taken care of us needed someone to take care of her. This is reality now and it made me sad and full of a mix of emotions…a big one being acceptance that this is my family now. It’s just strange. It feels strange. And even though Mom needs this, I feel sorry for her. I can’t help but struggle that her independence has been taken away and I played a part in that. Even though Dad ultimately made the decision I agreed with him. I don’t know why but I’m struggling with that realization because secretly I never thought it would happen- I never really thought we’d need to bring someone in to help Dad; I thought Mom would get better; Dad would figure out some magical way to manage it better. I just didn’t think it would happen and it has now.
Have you ever dealt with getting help for a family member that maybe impacted their independence? Have you ever felt the guilt of feeling responsible for taking it away? Do you believe sometimes life may force you to make a difficult decision?
MS has changed my family in a lot of ways and it is continuing to change my family in a lot of ways. My family that I have always been fiercely proud of and very protective over is changing in ways I cannot control. It is changing Mom, Dad, Sister K and me. Changing the way we interact, changing our dynamic at home, changing our activities- it is changing us.
This past weekend really shed a light on those changes as Sister K brought her boyfriend home for the weekend to celebrate Easter. All weekend I tried hard to fill in the holes that Mom should’ve been responsible for with a guest at our house. I didn’t mind but it made me realize even more that this is my role now and I needed to step into it for Sister K. I feel like I am doing that a lot in many capacities in my family- filling in the holes of where Mom cannot anymore.
But as the weekend ended and we were heading back in the car I was talking to Husband and I got upset. I felt uneasy after the weekend and couldn’t figure out why- and then it hit me…I was mourning in many ways the loss of my family as we were and realizing what we have become. I was sad because Sister K’s boyfriend will never know us without Mom’s MS. Because Husband and I started dating in college, he knew Mom before her MS and knew our family dynamic without all the extra added stress. At this point in my life I can define all relationships into two categories- those who knew my family before MS and those who knew us after MS. There are pros and cons to being on both sides of the line but I know that those who knew us before knew who were were- knew how we operated- they knew our true family. Those who know us now I am not so confident of the picture they get. I don’t know what they take away after meeting all of us in our current dynamic.
I still love my family very much and I am still obsessed with the people I am blessed to call parents, grandparents and of course Sister K…I would not change them for a minute. But I still feel like I am mourning the loss of my family as we were and realizing with both eyes open the family we are becoming.
Have you ever experienced changes in your family that make you aware your family dynamic is changing? Are there people in your life who know your family in the past as opposed to who they are in the present? Does what I am talking about even make any sense?
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?
I survived a very rewarding but exhausting weekend filled with coats, coat distribution, and coats clean-up. I survived lots of being on my feet, waking up early, physical activity and not enough sleep. I was going to blog yesterday but I couldn’t get the site to work. I could’ve tried harder but I was tired. So I didn’t.
As you know Husband is in school working on his MBA. Throughout his program I have gotten to know some of the wives in it. Well, this being December marks the end of a semester which also means time to say good-bye for a little while. One difference though is a lot of the people in Husband’s program are studying abroad next semester. We are not but a lot of our good friends will be in Europe beginning in January. I realized this yesterday after what had been a crazy weekend and what is already shaping up to be a crazy week. December always seems to be such a busy time. So I had a bit of a dilemma yesterday- do I try to send an email making plans for a little last minute get-together today or do I just forget it. I thought about it. Something inside said yes and pushed me to do it. That something (or someone I should say) was the voice of Mom. Mom would say “go for it!” So I did. I composed the email, sent it to my friends and pressed send. And then I sat nervously, unsure if anyone would be available or be interested. As it turns out they all were except for a few who were busy. We even changed it from a dinner to a lunch. So that is where I was this afternoon. Because of my lunch break I didn’t have enough time to stay and eat but I got an iced tea, sat and visited until I needed to leave.
As I was driving away, I felt happy. I was smiling. Smiling because this all started with an email I sent out. An email I was a little nervous to send but did anyways because it’s what Mom would tell me to do. Mom who is always planning get-togethers for her own friends. A talent and art form she has taught me whether she knows it or not throughout my entire life. Something I am now pushing and encouraging her to do in spite of her MS. She turned me into the person I am- the self proclaimed planner…but unlike Sister K, I often need Mom’s push too. And in a way she needs mine. Yesterday she pushed me and today I am spending the afternoon happy and smiling because of it. Thanks, Mom. You’re getting pushed next.
Do you ever feel nervous to plan social get-togethers? Do you have a voice inside that tells you to “go for it” when you are feeling nervous? Do you require mid-day caffeine to make it through the day like I do?
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’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?