I am having a tough time blogging lately. I am pushing through it though because I love this blog. I love writing and having a place to come share my thoughts about everything going on with Mom. But my thoughts lately are cloudy and they are tough. I feel overwhelmed but the challenges being presented before my family. I feel overwhelmed about how much there is to this story that I cannot fix. I am trying to accept these complex thoughts but it is hard. It is hard because they are not easy to accept and I am not sure if accepting them is the right thing to do. I feel like a lot of the time I am thinking myself into circles about everything…only to realize nothing is resolved and the only way to cope is to mentally move on to something else.
To put it bluntly, I feel tired of MS. Tired of the impact it is having on my family and Mom. Tired of the way it is seeping its way into our dynamic and forcing us to accomodate and find new ways to get on balance. I feel like we’ll never figure it out. A big part of me wants to give up but a bigger part of me knows that isn’t what you do. To that part of me I tell myself- this is your family. These are your people. These people make up the biggest blessings in your life. You have to focus on them. You have to focus on the love you feel for these members of your family and focus on your relationships. You have to cherish the good moments and really cherish the memories of those moments. You have to remember the bond Mom has with you. A bond that can’t be broken by a disease. A bond that makes Mom the only person you want to call when you are upset and a bond that in the same way tells Mom just from your tone of “hello” over the phone that you are upset. She knows you. She knew you before anyone else knew you.
It’s not easy and in fact I think it is getting more complicated. Life is throwing bigger curve balls at us. I am worrying more about my parents. I feel older. I feel less like a kid. I guess that was going to happen eventually but I also feel alone in the process. I don’t have anyone who can share this except Sister K. No one else understands that I am now thinking for both Mom and me- Trying to manage our family, keep up with buying people presents, rsvp’ing for events, planning events, but all making it look like Mom is still doing it. I have always been a planner and always been organized with life tasks like this so it’s not that far of a stretch but it doesn’t make it easier. In many ways perhaps God was preparing me to assume this role my entire life…and now that time is here. Do I mind, no. But does it make things very real, yes.
I am not sure where I am heading with this as it seems to be a bit of a rambling post. But I wanted you to know where I am at these days. I am still around. I am still blogging. But some days I can’t bring myself to think about MS and do it…and some days all I want is to have a blank white screen to ramble about MS. But thanks for sticking with me and continuing to read as I charter through. Maybe this is all part of it. The ebbs and flows of life and the ebbs and flows of MS. Like my blog says, I don’t have a manual and I am just navigating it the best way I know how.
Do you ever feel like you need to ramble? Have you every struggled with blogging about tough things? Have you struggled with ups and downs with a family member and a disease?
Wishing you a Happy Valentine’s Day!
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 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 family is evolving. Our dynamic is evolving. Part of this is a natural evolution and part of this is on account of Mom’s MS. I have mentioned before that my family has never exactly been the most punctual family in the world. But these days we move very very slow. It can take Mom a good 15 to 20 minutes to get from the living room into the garage and into the car. That is assuming everything is ready to go. Sometimes it can take longer. We are all learning to adjust to this. We are also learning the many definitions of the phrase “time to go.”
There are now 3 steps to planning when we want to go somewhere: 1) Determine what time we want to arrive at our location 2) Determine what time to leave 3) Determine what time we need Mom to be ready and how long it will take to get her in the car. It is a process to put it in the simplest terms. There is no more rushing out the door anymore. We don’t rush. If we are running late than we take a deep breath and realize we are going to be really late. That is how things go.
Sister K and I are getting more used to this. More used to just hanging out, not rushing to get out the door, realizing that going out to lunch may mean we are eating lunch at 2:00. It may also mean we are eating lunch at 3:00. Going out to dinner could happen at 8:00 or 9:00. Things are just on our own time now. Our own schedule. But, I also have another person in my life I am balancing who this does not come so natural to…Husband.
It is one thing to be experiencing the waiting and being late when it is your immediate family. I believe Sister K and my tolerance for the situation is higher because it is our Mom. We also weren’t raised in a very punctual family to begin with so in many ways this is just a bigger extension. Husband on the other hand comes from the polar opposite. Where my family would be 10 minutes late, his is 10 minutes early. His Dad is always in a hurry to get out the door to get somewhere not on time, but early. When I visit his family if we say we are leaving at a certain time I know I have to be ready at this time. This is part of being married. Adjusting to other families. But in many ways it is a little easier for me to adjust to his family norm when it involves time than him adjusting to mine.
We had a little tiff because of this over the weekend. Husband and I drove in for a quick visit to see my parents Saturday morning because Husband needed a haircut. Then we were going to go to a quick lunch with my parents and head back because Husband had some things he needed to do later in the afternoon. We only had a short time to be home. We began to have issues though when it was taking Mom awhile to get out the door, therefore pushing lunch back a little bit, and making Husband a little uneasy because he had study plans in the afternoon. I feel very caught in the middle when this happens. I am caught between my husband and my family. Caught between two situations that both make sense. Husband is working on his patience but I realize it is a lot to ask of anyone. He also realizes this is what he signed on for when we got married. But it’s difficult because this requires him to be the one to change because my family simply cannot meet him halfway on this. Mom cannot move any faster and we are truly going the fastest we can.
I guess what I am saying is the nature of my parent having MS is one thing. I tolerate more as I should because it is after all my Mom. But when you add additional people into the situation it requires tolerance and patience from them too. It is not necessarily a natural transition. I know we will get there, but I also know it isn’t easy. We like to say Mom doesn’t have MS, but we have MS. But that becomes a little more complex when the dynamics of the family grow and new people have to interact with our MS. MS affects everyone, not just Mom. It affects all aspects of our lives and it will continue to impact new areas of my life just as I think I have a hold on them.
Do you think it is natural to have more patience with your own family than others? Do you see how this could be a difficult situation for Husband? Do you find it interesting when you find a new situation being impacted by MS in your life?
I mentioned last week my family is planning a big cruise vacation for next summer. I knew the planning would be an interesting and somewhat challenging process- I just didn’t realize it would happen so soon. There have been many decisions to be made- picking an itinerary, selecting the best cruise line, selecting accessible rooms, etc. We have never done a cruise so it is already a new experience but doing it with Mom’s MS adds another level of new to this as well.
We decided to work with a travel agent who is also a family friend. This has been a lifesaver already. She knows Mom’s situation personally so I know she is personally looking out for her. She has brought up issues and ideas that I had not thought of and is working through ways to solve them.
For instance we have to purchase insurance. An insurance policy that covers not only health insurance but a sort of protection since everything is prepaid in case we have to cancel our trip, lose luggage, miss our flights, etc. But you have to read the fine print. Some policies will only cover cancellations because of illness if they occurred 60 days prior and are not a pre-existing condition. If Mom has a flare up or relapse right before, some policies won’t cover it. Through our travel agent we have found a policy that meets these requirements but with a little extra cost. Check. We had to book rooms to reserve the cruise. The rooms need to not only accomodate Mom’s needs but also accomodate our family too. After searching around on the cruise layout I found an accessible room that connects to another standard room. There is only one option like this on board. The cruise line did not offer this up initially but after some extra work on my part I was able to find it. Check. Next up will be contacting a scooter assistance company. I was unaware but there are services that will drop off a scooter for Mom at the pier of the ship and pick it up at the end.
Because Mom’s MS is fairly new to our family we don’t have this down to a science like I am sure many other families do. It is new to us and requires a step back and lots of thought. I am enjoying the planning but want to make sure I have everything figured out the best way for Mom. It is definitely presenting some new challenges I hadn’t thought of- at the same time it is good for me to know that I can work through these challenges and successfully find a solution. It’s empowering and makes me feel like we have control over our fight with MS when I struggle so often feeling the other way around.
There have been a couple moments when I have this small worried voice inside saying “Are we taking on too much? Is this worth it?” Then I fight it back down by saying yes, yes it is. This is not only important for Mom but it is important for our family. It is our way of not only saying but showing that our life and activities will not come to a halt because of MS.
To say this will be a great learning experience is an understatement but I am looking forward to sharing what I learn with all of you. I think that’s the best way to support each other- showing how we not only deal with the challenges of MS as a family but how we overcome them.
Do you ever feel overwhelmed by trying to not let MS prevent you from doing the things you and your loved ones enjoy? How do you fight through that and quiet the voice of worry inside? Thank you for reading and for your comments, they mean so much. I feel as though I have a virtual support team out there of people nodding along with my words.
“That’s so annoying.” Those were the words I found myself saying to Mom today on the phone while she talked about an issue she was having with her ankles today.
As I was talking to her, something happened. Instead of trying to solve her issues or getting sad myself, I told her “that’s so annoying, Mom.” And I just kept at it, like I was talking to a friend who was having a whole bunch of bad luck. Taking the MS out of the equation. I chimed in with her frustration and you could hear how frustrated I was for her in my voice. Strangely enough, I think it helped. In that moment I was on her side. I wasn’t saying you should do this, you should try this, Mom it could be worse. Instead I was on her side and I was mad at MS for her. I was mad at life for her.
If I think of when I am having a period of bad luck and people tell me “it will be okay”…sometimes you just really want them to get mad with you. Show you that you’re not alone and your feelings are justified. As a self proclaimed “problem solver” I have a tendency to try to fix these things before I allow myself to sometimes really understand what someone needs. Sometimes people don’t need a solution, they don’t need a positive spin, they just want someone to get mad at life with them. Without knowing this you actually help them more by not trying to fix their problem than fixing it.
So today I got mad at MS. I got mad with Mom. We chimed in together about how this is so annoying. How much this sucks. How Mom just can’t win. It felt good.
Lesson learned: I think I will get mad at MS more often.
Mom has developed trouble with a symptom called spasticity in her legs. I don’t exactly understand what it is or means. The only thing I do know is Sister K and I like to do a funny accent to make Mom laugh and say “spaaasticity.” I did some scholarly research which amounted to googling and found this at the National Multiple Sclerosis Society website. I don’t know much about spasticity but I know when Mom is having issues with it she describes it as tightening and occasional feelings of shocks sent through her legs.
I think her use of the word “shocks” is interesting because it is also a good word to describe how I feel about this too. Shock because MS and the symptoms that come along with it are never ending. Everything I read, everyone I talk to has a new one that I never knew existed. No two people experience it the exact same way. Personally, I hate this part of this disease. I think it makes coping with it more difficult because there is no way to predict what will or won’t happen to Mom. There is no direct path of what usually happens or which symptoms usually occur. There are some symptoms Mom doesn’t have and others she has had for awhile. Will other symptoms surface later or is this as bad as it could get? All these questions make researching and reading scary too. It makes it scary because sometimes I enjoy living in the “dark” on big issues like this. So I struggle. I struggle because people tell me to do the research and get informed. I struggle with how to find a balance between the known and the unknown. One of which is scarier for me than the other.
One thing I can do though is try to understand. When mom talks to me at lunchtime and starts opening up about how she is feeling on a particular day I ask questions. I try not to ask general/basic questions but specific questions. What does that feel like, describe it to me, does it hurt, etc. I am finding that by asking her these it is also getting her to talk about her MS and giving her a way to vent about it. It is also making me more aware of what is affecting her. I used to be inclined to think she was exaggerating things or making them sound worse. I had a tendency to brush off her comments about not feeling well and change the subject. I am not proud of that but if I am going to be honest it is true. In trying harder to understand the specifics of Mom’s symptoms I hope to be able to help her through them better.
A few weeks ago when Mom was visiting we were hanging out at Sister K’s apartment and her lower back was really hurting. In the past I might have just brushed this off but I really sat and listened and thought of ways to help. I remembered my chiropractor is always telling me to use ice- 10 minutes on, 10 minutes off. So I got up and headed to the fridge where I found a frozen bag of vegetables I knew full well would never be used by Sister K. So I came back and put the ice behind Mom’s back as she sat on the couch. For the rest of the evening while I was there I was taking it on and off to help her. She later said it really helped and she felt so much better. It made me feel good because I knew I had made a difference in helping to ease her feelings of pain for an evening.
I can’t help all the time but if I can every once in awhile it will make a big difference in helping not only Mom but also helping me not feel so helpless in our fight against MS.
I feel overwhelmed. Overwhelmed by Mom’s MS. Overwhelmed by my thoughts about Mom’s MS. Overwhelmed with my inability to focus on one particular thought and come up with a way to fix it. So I think I am going to rattle. Rattle my thoughts off and see if I can come to some sort of plan for myself. A plan to mentally deal with this because it’s becoming a lot.
I wish there were a more direct path with solutions to fighting MS. I feel like everyone has tried something different. You could try this but this worked for me. Maybe you should try this. Lately Dad is talking a lot about considering stem cell research for Mom. He is researching it, talking to people about it but Mom doesn’t want to talk about it. I understand both points of view. But I think we will try anything because we all feel helpless. I feel helpless as I live my life and watch Mom get worse. I think the MS is not only impacting her physically but it’s changing who she is, how she sees the world, how she lives her life. It’s changing all of our lives. It is putting an added stress on our family and on each of us. What is the best treatment, how do we continue living our daily lives trying to keep them as normal as possible, how do we encourage her, how do we live with a disease where we take 1 step forward as a family and shortly after are forced 2 steps back. And we continue this dance as we continue our lives.
I guess I need need to start taking things day by day. Everyone says to just live life day by day, take it one day at a time, and I agree with them but I never believe it in my heart. That’s where the life of a planner comes into play. I like plans. I like to make them. I struggle with taking things one day at a time. But what if I didn’t. What if I could just not think too far into the future but just into my day’s future. What if Mom’s good days and bad days were just that…a good day was reason to smile and a bad day was not a reason to panic that things are getting worse. They were simply just a good day and a bad day. Because I tend to not enjoy the good days as much as I wish I could could because I am focused on the bad day that recently passed or worried for the next bad day to come.
So how do I do it? How do I train myself to take things one day at a time? To not jump to the worst conclusion in a bad moment and to celebrate the good moments more.
Yesterday I wrote about Mom’s dilemma regarding leaving the house with a friend in the afternoon since she didn’t have her walker. I resisted every urge inside screaming at me to problem solve. Instead I just backed off. I hoped it would work out alright. I also knew I didn’t have a choice except to let it resolve itself. It did, but not without chaos for my mom.
She said she took the walker she normally has inside our house out into the garage to wait for her friend to pick her up. In the process she knocked over our recycling bin and bottles went rolling everywhere. One of those bottles was glass and went rolling out into the street and broke. When her friend arrived she didn’t mind at all picking up the bottles and even picked up the glass pieces. This is friendship at its finest. My family has learned a lot about who our friends are through Mom’s diagnosis of MS, who we can count on, who we can share our pure moments and who Mom isn’t afraid to call to ask for help.
The entire situation makes me want to scream out of frustration because this is not the first time a tiny issue because a large one. I feel like when MS is involved, it turns rain into pouring rain; molehills into mountains; you get the drift. It makes life difficult. A simple mishap like knocking over a box of bottles becomes a huge problem and one that cannot be taken care of easily when you are by yourself. The entire situation made Mom stressed and frazzled. And rightfully so. It would make me stressed and frazzled and I don’t have MS. In the end she was happy she had decided to leave the house and spend the afternoon with friends.
In hindsight, there are lots of lessons to learn. We need to plan better to make sure Mom has what she needs if she is planning to leave that day. It’s okay for me to back off and trust a situation can resolve itself on its own. Most importantly, Mom has some great friends, people who have become like family to us. These friends hold our hands and are there for Mom because Dad, Sister K and I can’t always be there. These friends are little blessings sprinkled throughout our lives.
I call my mom everyday at lunchtime. It’s our time and we fondly refer to this hour as “lunchtime chats.” These actually started when I began my first job and realized I had a lunch hour everyday but not necessarily someone to spend this hour with. My mom became just that person. During lunchtime chats she hangs out with me on the phone while I run errands, order coffee, go for an afternoon walk or sometimes even eat my lunch. Our conversations vary and I can usually tell by the tone of her voice, either carefree or a slight hint of stress that only a daughter could pick up on, how she is feeling on a certain day.
Today when I called she was a little uneasy. A friend was coming to pick her up and realized her walker was in my Dad’s car and she couldn’t get ahold of him. Mom also started talking about feeling nervous because she is just scared. She didn’t say what she is scared of but I know. We all know. It’s a silent understanding. She is afraid to fall and afraid of not being able to get up.
My mind almost felt paralyzed becuase I felt so sorry for her. I wanted to fix it. I wanted to solve this problem. I wanted to say the right thing so badly. This is the third day I have written these words and I am beginning to notice a pattern. But I can’t fix it. I can’t fix it because logistically I am not in the same city. I also just cannot fix this. I also had a hundred thoughts flooding my head because I didn’t know what to say. Do I try to comfort my mom, I tried rattling off the list of her worries and discussing each one but I knew that fear in the back of her mind was too great and preventing her from being rational. So instead of drawing it out and making both of us frustrated I got off the phone. It ended pleasantly, I told her it would all work out and not to worry. I did this because all I could think was I don’t know what to say or do, I should probably just get off the phone before I end up frustrated and stressing her out more. It has bugged me all afternoon because I don’t know if I did the right thing but I also don’t know that it was the wrong thing.
My mom’s fear of falling is very real because it has happened. I can feel her uneasiness when we are out in public, I watch as she is very careful and very focused, not moving too quick, making sure every movement is calculated. I can feel it and it makes me feel sad. Sad because she is sad. Sad because her life has changed. Sad because I can’t fix it.
But, I can continue to be there. Continue to have our treasured lunchtime chats and continue to talk about these things and help as much or as little as I can. Maybe I help more than I realize. It’s interesting how I never know when I am successful in helping but always definitely know when I am unsuccessful. I come from a loud family of all girls. There is never a question if someone is unsuccessful in helping. Everyone knows because they can hear it!