Regardless of your political viewpoint, it was good to see the words MS on the cover of ABC News today. I believe increasing awareness of MS is what is going to increase fundraising support which will in turn increase research which will in turn find a cure. Every mention of MS in the media only helps build that awareness.
Its been a tough week filled with tough discussions about Mom, trying to get a handle on what is facing us and trying to do everything we can. I am trying to be more optimistic. To hold on to hope because in the end that is all we have. Deep down no matter how down I feel about what is going on around me with Mom there is always a spec of hope.
Today I am hopeful.
At some point Dad, Sister K and Me have to realize Mom’s MS is her MS. It is our battle to fight but at the same time it is not. We can’t make her have a fighting spirit if she doesn’t want to have one. Regarding treatments, regarding medicines, regarding our plans….we are pushing and pushing and not having much success. The other day I had a thought- while this is our battle to fight it is ultimately Mom’s decisions what path it takes.
We will never be able to force her to do anything. Because of that we have to listen to her. We have to find out what her plan is and respect that even if it’s not what our plan would be. We are all exhausting so much energy coming up with ideas, discussing plans, alternative medicine ideas, doctors, etc that we are in a sense driving ourselves crazy. It is consuming us.
I have tried to blog everyday but I think that’s why yesterday I had to take a break. There may be other days when I have to take a break. Tuesday was a tough day and night with some tough conversations with Dad. I started to feel overwhelmed and overcome with stress from all of this. I also felt very frustrated with Mom. So yesterday I needed a break. I didn’t want to think about MS. When I talked to Mom on the phone at lunch, I didn’t bring up how she was feeling and we just talked. It was nice.
I think I learned a lesson, I can’t just sit and let my worries consume me, especially when its an issue that can’t be solved. I need to take a step back and come back to it later with a clear head and a better attitude.
I have to have faith in Dad. I think Sister K and I like to jump the gun, think we know best and take over. And we can’t. I had a nice talk with Dad last night on the phone which he said, I need you both to trust me that if and when the time comes that we need more help I fully intend to go get it. I am not going to wear myself out and I will know when that time comes. He also told me that unless Sister K and I intend to go back to school to get our nursing licenses we can’t help at the level that may be needed. That kind of made me laugh.
So Sister K and I are still working through things, we are still figuring them out but we are realizing we have to have faith in Dad. Faith that as Mom’s best friend he’ll know when, if it ever becomes necessary, to make the decision about getting extra help at home. He’ll know what he needs to do to take care of Mom and himself and we’ll be there to support him through it.
Sister K and I were talking at lunch today. We don’t know what our role needs to be going forward to help out with Mom’s MS. We also don’t know what is in Mom’s head regarding her MS. We wonder if Mom is doing everything she can? We wonder if our approach is correct? We wonder what phase Mom is at with this disease? Has she experienced acceptance of it or something else? We are confused and unsure. We don’t understand. We also just feel like we are at a loss for what we are supposed to do. At the same time, how much can we do? The help and support Mom needs is on a daily basis. It is not in our power to move back in at home and be there everyday to help out. I also don’t think physically we can provide the assistance she needs.
Once again we are beating our head against a wall about this. And it’s frustrating. It’s almost like we need a plan. But what’s the plan? A schedule of weekends we will go home and do what we can- clean, run errands, grocery shop, whatever we can do to help out. Is that the most we can do? What else can we do? And then the questions begin again.
Today I am confused. I am overwhelmed and confused. I need guidance. Mom is stubborn. We all have qualities in us that would make dealing with issues difficult and this is hers. It’s easy for people to say “tell your Mom to do this, tell her to do that” but they don’t know her. Sister K does and that is why she is my main support in all of this. We can support each other but together we can’t figure out how we are supposed to support Mom. Once again I feel like I am 20 years too early for these discussions. I feel like we don’t know enough or have the resources available to us for these decisions. It’s hard. It’s a big, overwhelming picture. It’s a lot of things at once.
The only thing I can wrap my head around right now is we need a plan. A realistic plan given our limitations in life right now. Even if all we can think of right now is to start small with a plan of weekends we will go home and run errands. We have to start somewhere. I don’t know where else to begin. This is ironic because I love to plan. I am a self-proclaimed planner. But this kind of planning causes something inside of me to mentally shut down. I am going to have to learn to fight that in order to be the person I need to be to fight Mom’s MS.
When it comes to MS, how do you share responsibility? Do you have any other ideas of what we should add to our plan?
Mom and Dad are going to go meet some of Mom’s college friends at someone’s ranch this weekend. Since Mom is an only child her college best friends are like sisters to her and she really enjoys these get-togethers. They have all had kids together and now we have become friends as well since we are close in age. It’s friendship at its finest. Telling these women about Mom’s MS was probably the hardest of anyone else she had to tell. She actually had Sister K and I send them an email explaining it because she couldn’t do it herself. They had seen changes in her, they were worried and they had begun to ask questions. She was afraid of what would happen when they knew and how they would react. Instead they have rallied behind her. They call and email to see how she is. Whenever we are all around they always keep conversation normal and don’t treat Mom any differently. They offer to come to our house and help even though they live in different cities. They are a group of people who have not only said they care but they’ve showed it. An interesting concept- saying you care and showing it.
Personally I have had a lot of people tell me they care. Tell me to let them know if I need anything. But the problem is they don’t maintain a close enough relationship that makes me comfortable enough to call on them. Through Mom’s diagnosis I have learned as well who my real friends are and who really cares. It’s been a painful process, one that’s still not over.
I get asked by Husband, what would you like people to do? The answer, I don’t know. I don’t know, but I know when they aren’t doing what they should do if they really cared. I want people to really mean it when they say they care. I want people to make Mom comfortable when she is around them. I want people to actually take Mom to lunch instead of just saying “I’m going to call you, we’re going to go to lunch.” I want people to keep in touch with my family better and not just want to know the details whenever we happen to run into them. In those same moments, I want them to stop with the quick reminders that they are there and they care. I also want them to stop offering the unsolicited advice of the 100 things Dad, Sister K and I should be doing or making Mom do. We are doing the best we can and if you really knew us, you’d know that.
I have learned it really is true what they say- Actions Speak Louder Than Words.
I take for granted my ability to just straighten things up or do things around the house. My ability to have a “to do list” that if I avoid procrastinating I can get everything done in a timely manner. It isn’t until I go home do I realize how much I take this for granted. As a woman your natural instinct is to make things presentable and as a Mom even more so. I think this is why Mom gets even more frustrated over the “chores” around the house that she can’t do. The past week she was upset because her loquat plants were overgrown and needed to be cut back. She had no way of getting to them because if she got out there with her walker she couldn’t balance to cut them.
So yesterday Sister K went home just for the night. She had to pick up some things and was there less than 24 hours. But Sister K didn’t just go home and sit around and relax. We both have realized there are certain items Mom mentions that she really needs help getting done. Certain items that are just going to make her feel better knowing they are accomplished. We also know that if we don’t step up to do these things it will all rest on Dad’s shoulders in addition to the other things he does.
So Sister K stepped up. She ran some errands to a craft store to get some supplies Mom needed, she painted Mom’s toe nails (this is their thing, everytime Sister K comes home…and it’s sweet) and she cut back the loquats in the back yard. Just knowing how much these specific items mean to Mom I know she is already feeling better about life today. Sister K didn’t leave empty handed either, Mom sent her home with some tuna salad she got up early to prepare. A way Mom can still be Mom, sending us home with food after our visits.
We are learning that we need to help around the house in ways we might have overlooked before or in ways we might not have needed to before because Mom did those things herself. We also need to listen to what Mom needs. We need to listen because we can’t do everything but we can do a few things that will lift up her spirits and make her feel accomplished. Feel accomplished in the same way I feel when I have crossed off the items off my “to do list.”
Sometimes I think it’s good to not always focus on MS. Mom’s MS is often a focus for us. It somehow sneaks its way into pretty much every conversation. It has a funny way of doing that- it’s a weasel. A sneaky one.
Today on the phone at lunch Mom and I just talked. She was in a good mood, she was focused and listening. We laughed and we just talked. I never asked about how she was feeling or how things were going today. This wasn’t on purpose but I just didn’t think about it because our conversation was so filled with other things to talk about.
This afternoon as I was thinking about our conversation I got a smile on my face. I was thinking of what a good conversation it was. It’s important that not every chat with Mom, not every sentence or thought has to do with MS. MS is important but it’s more important to focus on who Mom is without it. Not Mom with MS but just Mom. In my moments of frustration or sadness I forget this. These moments don’t come as often as they used to but today was a good day. Today I had the opportunity to allow my mind to be lost in just Mom through a phone call. And I am thankful for the moment.