Where We Are

It’s been a little while since I last stopped by this place. That is for many reasons:

  1. I had an insane fall. It kicked off with Sister K getting engaged in August and then nonstop weddings, bachelorette parties and traveling every weekend until pretty much the end of the year. I wish I could say I was exaggerating but I am not. I think I had two free weekends for six months.
  2. I kind of hate MS.

But recently I have been thinking I need to write about this more. If for no other reason, there are other people out there dealing with this like Sister K and me. I just know it. I see the comments when I google “mom has MS” and I see the comments on MS message boards. This can be a very ugly disease for the the people who have it and the people who love people who have it.

So where are we with Mom’s MS? To sum it up I should probably say “we’re hanging in there.” Mom can’t walk, can’t stand and can’t sit up on her own. I’ll let you fill in the blanks with how everything else works in our house because of that.

We have people coming into our house 24/7 during the week and on the weekends at night. Something that has evolved because Dad was not sleeping on the weekends and running himself ragged after working a full week. The people coming into our house? That has been a mess entirely on its own. One I will share in another post.

Dad believes Mom can improve. So I listen to him say this. Do I think she is going to improve? I am not so sure. I try not to be known as the cynical one but all I have seen is her get progressively and steadily worse…not fast and it has happened over time…but it has happened. He sees it differently but for him, that’s his wife. That’s his forever person. I have also realized the relationship is very different than mine with Mom.

Out of the ordinary though- we are planning a wedding for Sister K and Future Brother J. It’s been a spark of excitement. On the flip side it is a slowly growing spark of stress about how we will manage Mom for the wedding. I will blog about that too.

So here is where we are. Where are you at today beginning this New Year? How is your family? How is your health? Does the idea of not talking about a topic that upsets you make sense or do you believe it is through talking there is healing? 

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Same Ol’ Same Ol’

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?

 

A Lot To Talk About

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.

My Head is Full of Nothing

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?

Change of Plans

I know it’s been awhile. A lot has happened. For those of you who follow my blog and for those of you who pop in every once in awhile here is a simple but long update:

Canceled Plans:
Last summer I began talking about a cruise my family was going to take. We were going to go on Royal Caribbean Cruise Line, we had booked accessible rooms, I had booked scooter rentals, I had spoken with American Airlines about special needs issues on the plane, everything was rolling on normally…but I was nervous. I kept wondering if we were taking on too much. Taking on too much with this vacation- to put it simply, Mom has lost the ability to walk. As we got closer and closer to the cruise departure day, departure day being next Friday June 7, I kept having this small voice inside wondering if it was too much…I would then quiet the voice by rationalizing my way out of it…then the voice would re-emerge…and I would quiet it again. But in the midst of this I was praying. Praying that if we weren’t supposed to go on this cruise it would be revealed to us and without that we would just keep moving ahead.

Last Saturday that decision was made. Our Grandpa (Papa) fell in the middle of the night in his house, broke his hip and to have a partial hip replacement. His doctor said he could not go on the cruise. This then set off a sort of chain reaction where Mom did not want to go, Dad could not go if Mom was staying behind and then for Husband, Sister K and me to still go did not seem right. It seemed like a different vacation and it would be sad to go thinking of all of us not together. I also could not stop thinking, we are supposed to cancel. We are being told we need to cancel. It’s too much. Obviously too much for Papa but silently too much for Mom.

I am not in any way saying this happened on purpose, but I do believe it gave us an answer we had all been fighting out of our heads for awhile – We are not supposed to go on the cruise. Luckily our travel agent had convinced us to get travel insurance. I am in the process of gathering invoices, payments, etc but we will submit them and be able to get our money back.

But the lesson in all of this and Mom’s MS has been very clear to me- I can no longer plan ahead a year in advance. No longer assume Mom will remain the exact same. A year ago Mom had just gotten out of the hospital and was going into a rehab facility. Our goal at that point was to get her back to walking on her old 4 wheeled walker ‘Pinky’ from the standard walker she was using. A year later our goal is simply to get her walking.

Understanding While Not Understanding MS
Seeing that part of MS has been difficult to me- difficult because part of me believes she could try harder and walk because people tell us all the time of stories of this happening. The other part of me does not know if that is how this works and not walking is just another step. Regardless it is difficult to see the added stress this has added to Dad. It worries me in many ways. The amount of effort being exerted, the lack of sleep to help Mom up multiple times in the night, the nonstop nature of his days- not even ending when he sleeps. It’s difficult.

Process Overload
As you can see it’s been a lot. A lot I am processing and this is the first time I am writing it all out. The cruise cancellation is very fresh..less than a week to be exact. The reality of not going mixed with the reality of the unpredictable nature and path of MS is all slowly coming into place.

A Quick Life Update on Me

  • Husband graduated with his MBA, was offered a job and we are moving to a new city- still in the same state, about 3 hours from home instead of the 1.5 I enjoy now. Sister K will continue to live here so this will be adjustment for us.
  • I recently got a job offer in our new city and am going to be the new Public Relations Manager for a nonprofit organization. I start in three weeks and I am very excited! Knowing how difficult job searching is and having gone through the difficulties of it every other time I have searched for jobs before, I feel incredibly fortunate and blessed.
  • Also Husband and I adopted a 6 year old cat named Chloe. She will probably make an appearance on here at some point- we are pretty obsessed with her 🙂

I thank you for continuing to read as I sort through Mom’s MS.

Have you ever had any vacations canceled? Do you have any thoughts on the path of MS? How have you ever all of a sudden had a big reminder that life really is day to day, especially with MS? 

The “Special Needs Family”

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

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

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

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

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

The Mental Slow down

I was home for a few days two weeks ago to stay with Mom while Dad was out of town. I had a love/hate relationship with those two days. I loved being home. I loved staying with Mom and spending time with her. I hated everything that had to do with MS. I hated how it tested my patience.

It gave me a great sense of appreciation for everything Dad is dealing with when it comes to Mom. It also made me feel like a failure because I can’t seem to handle everything as smoothly as he or Sister K does.

After quite a bit of soul searching, I think I may have found the root of part of this- I need to slow down. I like to go-go-go. I am a planner. I am always one step ahead and thinking one step ahead. This way of living, feeling and thinking does not work when your Mom has MS. Because these tendencies are pretty heavily intertwined in who I am…in may ways Mom’s MS is fighting constantly with who I am.

I came to this realization about halfway through. I then felt really frustrated with myself. I spent the rest of my time home trying to mentally slow down. Physically slowing down is one thing. But mentally slowing down and focusing on the present with Mom is tough. But I tried. And I was successful for a day. I know it’s a day, but it is some sort of proof to myself that I can do this…baby steps.

So here comes my new challenge, the mental slow down.

When I am in the presence of Mom I need to make a conscious effort to mentally slow down. Fight my urges to speed through our time together and get lots of things accomplished. Instead slow down. Realize I am not going to accomplish that many things. Most importantly realize that is okay and realize the important part is the moment with Mom.

Do you ever had a tendency to try to speed through life? Is it easier to physically slow down than mentally slow down? Do you ever get the two confused?