It’s amazing how the mind works. I am beginning to think that when I look back on how I am mentally able to process everything going on with Mom and its impact on my family, I will someday wonder how I did it. I will someday be on the other side of it and look back and think how did I function through all of that? I most likely don’t give my mind enough credit, instead questioning its reactions to everything.
Mom is going home from the rehab facility tomorrow. Sister K and I talked to her about it Wednesday night in a conversation that went in circles. Circles in the fact that we talked about the same thing several times and we both weren’t sure where it was going. We got disconnected in the middle from Mom, Sister K called me back before calling Mom and all we could do was laugh and say “whatttt is going on right now???” Moments like that I can honestly say with every ounce of my being I do not know what I would do without my sister.
I talked to Dad about it a little yesterday and some more today. He told me he had gotten the file from the place and it said Mom had been “self limiting.” An interesting choice of words…taken to mean she isn’t pushing herself like she should. Other charts revealed she had not improved very much. Basically she will be returning home and after one month, we are exactly where we were a month ago. My exact thoughts about all of this initially have been realized. So what next?
Dad said he is bringing in a new company and people to stay with Mom during the day/night. Bringing in a physical therapist to work with her 1 hour a day. He’s going to explain she has to get improve because this is the last option we have…last option before what? I thought rehab was the last option? Now this is the last option?
I realized something on the phone. I could’ve said exactly all of that to Dad on the phone but I didn’t. My conversations on this topic are having to shift a little with Dad because I am having to listen but stay quiet and supportive…even though deep down I really feel very differently and have my own very different thoughts. The words used have become something of a “same ol same ol” in our house. I feel very same ol same ol right now about everything. People ask how Mom is doing? How was rehab? Same ol same ol. This is a big reason I think why I kept this so quiet from everyone…because I wondered deep down if this would happen. I’d rather have never said anything then have to say we are back to same ol same ol.
But what happens when you get tired of this never ending circle we seem to be in called same ol same ol? Is it bad to wonder how much longer your family will be stuck in this never ending space of same ol same ol? Because I wonder. And as someone who hates change, I am beginning to wonder if we are ever going to see any…and dare I say I am actually beginning to pray for change. Because the lack of anything is beginning to wear all of us out. I see Dad trying to keep his spirits up. Taking any hope he gets from anyone as the end all, be all word. I just don’t react the same. Instead when he talks to me and tells me these plans for Mom, I just think same ol same ol. Maybe its bad or maybe it is how my mind is coping with it. The brain is an interesting place and I can’t imagine it is easy to process all of this…maybe instead it has decided this portion of my life is going to be stuck in same ol same ol, so I can remain the support system my family needs without really acknowledging everything going on…I have to trust my mind because it may have decided that if it stops to acknowledge everything going on, it will be overwhelming on levels even it cannot handle.
So how am I today? Same ol same ol. How are you?
I have to admit that I think I have been avoiding this blog. Not because I don’t have a lot to talk about but because I have a lot to talk about and in talking about it, it all becomes more real.
The past few months have been tough with Mom. Basically she is pretty much bedridden or in a wheelchair. She cannot stand on her own or walk. I am sure you can imagine the challenge this has created within my family..more specifically Dad. We have had two women caring for Mom for the past 6 months, one during the day and one at night. Dad has been doing it on his own on the weekends.
One weekend in January I went home and took care of Mom on my own. Dad was on a work trip and Sister K and I wanted him to stay an extra day so he could just have some time to himself. In order to do this, one of us needed to go home and be with Mom. It worked out better for my schedule so I did. I was happy to do it but it was mentally and physically exhausting at the same time. I just kept thinking I can’t believe Dad does this on his own every weekend on top of managing life- running errands, grocery shopping and taking care of everything else. I had taken home my computer, books and movies thinking we’d have lots of down time but that was not the case. I am not sure how but it just was not the case.
To make a long update short, at the recommendation of Mom’s physical therapist and Mom’s doctor, Mom has entered a rehab facility for intense physical therapy for a few weeks. She has been there about two weeks and going on her third week. It was a battle to get her in there in the first place because of insurance since this is different from last time when she went from the hospital to rehab.
How is she doing? Has there been improvement? Sorta. But she isn’t standing or walking yet and a big part of me wonders if she will ever stand or walk again. I am having some serious internal struggling with this since Dad is so hopeful that she will and I don’t want to see like the family pessimist. At the same time, I have read a lot on MS and I just don’t know. No one knows I guess.
So I guess you could say I am struggling right now. MS continues to be something our family is dealing with and it continues to be something that will never give us a break. Even Mom being in rehab hasn’t been a “break” for Dad because he is having to stay on top of her care, on top of the doctors, physical therapists and go to visit her when he isn’t at work. It has actually added more to the work load than less like he originally thought.
I will continue to write more on all of these topics. I need to. I think it is helpful on a lot of levels and I am going to force myself to do it. The bottom line is writing about it is like my own therapy and writing about it amidst this community has become a way and a place for me to know that my family is not alone in our struggles. Thanks for continuing to read as I come and go from time to time. I am beginning to think it is reflective of how I am managing everything, how much I want to talk about it and deal with it and how much I prefer to remain quiet. But there is a lot to talk about and I am going to continue to do it.
People love drama. Not everyone, but some people really do. Just an observation I have made and one that is becoming a bigger one to Sister K and me recently. People complain of so much going on- X, Y and Z…and we just look at them. We empathize. We are sympathetic. We then share our own daily stresses…and we don’t get irritated in any way because the issues they describe are valid. Everyone has issues. It’s part of life.
But lately I am feeling a bit lost when I stop to think about how much is truly going on- I felt this way this past weekend while I was sitting at home at our kitchen table talking to Dad. He told me he just feels worn out. He has gotten help during the days for Mom but at night as soon as he gets home he said he literally has no time for himself. He goes all evening and all night long. He is a full-time caretaker. In some ways this would work if this was all he did but he also runs a major company during the day. He has the added stress of a full-time job on top of this. Then on top of that he is the head of our household. He is Dad- the one who is supposed to know everything and fix everything.
And now, in light of events from last week he now has the added weight of Papa’s hip replacement recovery. He is not responsible for the recovery and Papa really seems to be doing well- but Mom wants to get to the hospital to see Papa, therefore time now has to be allotted for that too. The process of getting Mom just out the door is a lengthy one, then getting her in/out of the car and back inside…it is not easy and it’s not quick. He told me that when he got the call in the middle of the night about Papa’s fall Mom was upset that he wasn’t more upset- and he said he just sat and stared thinking, how am I going to take on another thing right now?
He’s doing it though. Somehow he is doing it. But it worries me too. You can read between the lines and see why that would worry a daughter about her father. At the same time it frustrates me with Mom’s MS because quite honestly I don’t understand it. We have been told often by people the MS sort of ebbs and flows; you experience relapses; then recover; but Mom just seems to ebb. She doesn’t seem to go back to where she was before, she just gets worse– and I don’t understand why? Is that how this works? Is that how this is going to work for her? What is going on?
I have a lot of questions. Questions that are sitting right below the surface for me. Questions and concerns about all of this. I also feel helpless. I want to do more. I wish I could do more. I can listen but that’s all I feel like I can do- I can’t even think of advice to offer. Yesterday as I listened to Dad I just sat there with my head feeling blank…thinking how much more can you seriously take. I didn’t think this about myself- I thought this about Dad. And he doesn’t complain, he doesn’t get upset, he just takes it on- but I can see how it is wearing on him. I can see how he is tired. I can see how all of this is becoming too much…but then I am left with the question of how do you even fix that? How do you make it less? I don’t know how you do.
I feel like all I can do personally is not add to the stress. But beyond that I am at a loss. A head full of thoughts but no words and no way to fix anything.
Do you ever feel helpless that you can’t help a loved one more? How do you handle your MS with either yourself or as a caretaker? How do you stay positive and keep going? Does anyone even understand the path of MS?
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?
I always knew MS would cause plans to change and to some extent I have experienced it. Running late to events, changing “dinner out” to “dinner in,” canceling a planned outing….but I have never experienced it when it involves plans with other people outside of my family.
A few weeks ago Husband and I went home for the weekend to attend a wedding with Mom and Dad. Sister K was unable to make it so Husband and I were going to drive with my parents on Saturday. The trip from home was about 2 1/2 hours up and 2 1/2 hours back to the city the wedding was going to be held. Initially we were thinking of staying overnight but Dad had plans to go out of town for work the following day so that didn’t work out.
That morning I had a feeling Mom might be struggling. She had just finished her steroid infusion and seemed to be moving slow. But after a bit of an argument with Dad about if we should go at all, he told me “this is how we roll with MS and if we have to come back we’ll come back.” I don’t think either of us really thought that statement would come true just a few hours later.
About an hour into our drive Mom needed to use the restroom so we pulled off at a gas station. I helped get Mom into the restroom and for the next hour I was in and out with Mom. That’s as far as I’ll go into those details. The point though is there I was in a black dress, black tights..pretty much dressed for a wedding helping Mom in and out of a restroom stall repeatedly. It was exhausting. It was draining. I had no mental capacity to think of what other people may be thinking. I had no extra mental space. Everytime I thought we were done, we weren’t. Husband and Dad hung out next door in a gift shop and even though I felt bad for leaving Husband in this predicament, I also realized I had no choice. My priority was to Mom in this moment.
At a certain point Dad decided, we can’t continue driving and make it to this wedding. Mom was upset but understood. This was her friend’s daughter getting married and our old next door neighbors. I texted one of the kids to tell them Mom was sick and we wouldn’t be coming. We got in the car and drove an hour back home.
It was a strange feeling having to text message someone to tell them Mom was sick and we wouldn’t be able to make it. I felt in many ways like this private world I like to shield the ugly parts of MS was being exposed to someone else. I also couldn’t believe that for the first time our plans were really getting flipped on their head…just like everyone had been telling me would happen eventually. This is what they meant. Getting all dressed up for a wedding only to spend your afternoon at a gas station. Getting home and thinking what was the point of that? The emotional exhaustion that comes from going through that experience. The thoughts that circulate through your mind. It’s a lot.
I know this is most likely going to happen more often and has probably already happened to many of you, but it was my first time to “get it.” To in many ways really see where we are at with all of this and it was a hard realization. Maybe these experiences will get easier and maybe they won’t…but it’s very humbling to have to expose these tough moments to not only close friends but also to all of you. At the same time I think it’s important because it is helping me to not be ashamed. This is who we are now and these things can happen. Our family really is changing and evolving and these experiences are all playing a part in the evolution of who we are becoming.
Have you ever had plans “derailed” by MS? Have you ever struggled having to admit the truth to friends? Do you struggle with thinking what others are thinking about you?
Mom is undergoing a steroid infusion this week. Every evening someone from home healthcare has been coming to our house to give Mom an infusion. Becuase of her decline the past few weeks, her physical therapist thought she may be having an MS exacerbation. My parents quickly made an appointment with her doctor who prescribed the steroid infusion to get her strength back.
I have to be honest, I didn’t think much of this. I didn’t think this would really make much of a difference and had started trying to reason my way through the changes in Mom. I am continuing to do this. But something strange happened this week- the steroid infusion began and I have felt through phone calls with Mom that her presence and spirit are back.
Today at lunch I was going to go run some errands and just called to check on her really quick. Really quick turned into 45 minutes….she was so tuned in, talkative and upbeat that I couldn’t bring myself to get off the phone. I soaked up every one of those minutes as I wandered around outside. We talked about the same things, she was rambling repeated comments a few times but I really didn’t care. It was just so nice to be able to talk to Mom…really talk. She wasn’t loopy or tired or out of it. She was Mom.
I know this may not last. I am very aware that this is most likely a result of the steroid in her body right now. But I also don’t care. I enjoyed this afternoon so much and felt so revived coming back for the second half of my day. It all ties back into living in the moment with Mom. I have been having tough moments the past few weeks. But today was a good one. It was one that I want to cherish.
I am heading home this evening to actually see Mom and Dad. Husband and I are attending a wedding with them tomorrow and then I will be staying there until Wednesday morning because Dad has to go out of town. He likes for either Sister K or I to stay with Mom if he is traveling overnight. I know we most likely won’t be able to do this forever but for right now we are both in situations that allow us to, so we do. It will be nice to be home and nice to spend some more time with Mom. More time working on my patience and working on living in the moment. Hope you have a great weekend!
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.