When I was working, I participated in a training program designed to develop my potential for a middle-management position. The course consisted of three sessions of one week each. In between the sessions, we had homework to complete in the time until we reconvened. At the end of the second session, the instructors explained that our third session would include a long (a whopping understatement- as it turned out, the word “interminable” was more accurate) simulation of a real business problem. The exercise would require us to prioritize needs and create a budget to run the entire agency in an environment of limited resources and continuing budget cuts. The instructors told us that, as part of the simulation, we would have to deal with constantly changing conditions and would have to present our decisions to a team of executives. The executives’ role would be to pick apart our budgets and make us defend them.
To make the challenge more difficult, the instructors assigned each student a role to play in the exercise. We would each have to play the part of an executive from an agency department with which we had no experience. In the time before we came back to class, we were supposed to research our roles, figure out the interests and priorities of the person who actually held the position we were assigned, and be prepared to explain the inner workings of the department of which we had just become the executive.
During the months between the second and third session, I became a manic fact-gatherer. I knew virtually nothing about my assigned department. I scoured the internet for information about my role. I tried to talk to people who actually worked in the department that I was going to “fake lead.” To be honest, I actually understood only about every third word that I read about the new department. To say the least, my comprehension was a bit compromised. Still, I kept printing things out and trying to organize the information in a way that made sense. I built large three-ring binders of printed information. I hoped that I was combining the bits and pieces of data that I did understand into a coherent overall general understanding of the department’s priorities and mission.
I arrived at class pulling a rolling suitcase behind me. The suitcase contained the binders of pages printed off the internet, email traffic between me and employees of the actual department in question, and my own notes and analysis. I was a sitting duck. As soon as I walked through the door armed with my suitcase, the instructors immediately re-assigned me to another position in a completely different department. Other than killing a lot of trees and building my muscles lifting all that paper, my research was pretty useless.
The instructors were trying to teach me that I tend to rely too much on planning and preparation. They wanted me to learn to develop my quick-thinking and adaptability skills. I completely agree with their assessment of my obsessive-compulsive planning tendencies. I also agree that the lesson they wanted to teach me is a valid life lesson.
However, I don’t learn that easily. In the weeks since my mother’s stroke, the memory of this episode has come careening back to the front of my mind. It almost seems like I am living through the whole thing again.
All day and most of the night, I strategize about how to help my mother, how to advocate for her, and how to provide a comfortable future for her. I run errands. I talk to experts. I google so much my brain hurts. Just when I think I’ve got a good enough plan to tame the tigers of uncertainty in my gut, I start the day and something happens that makes all that planning pretty much moot. It is as if God sees me hauling my rolling suitcase of information and plans, gently unclasps my hand from the handle, and puts me in a different situation where all that wonderful research I’ve accumulated is completely useless. Instead of shrugging and just dealing with whatever the new situation is, I find myself heading headlong into another flurry of research and preparation. I think I must have the hardest head ever.
I am still not real good at living in the moment and I’m really bad at living in the particular moments I’m experiencing right now. I think I’ve been kind of waiting for the “new normal” to begin. I know that I have to find some way to live some semblance of my own life in order to stay sane for myself and stay strong for my mother. However, I keep thinking that I will be able to gradually disengage somewhat from the “stroke world” where I visit my mother every day and work with her on therapy and do the administrative work necessary to provide for her life.
The thing is- I keep waiting for some milestone of recovery to jump start that gradual disengagement process. I’m not sure exactly what I expect that moment to look like. I am thinking of milestones such as regaining enough speech to truly be able to express her opinion of activities concerning her, moving into her eventual home in assisted living, or having no reason to expect that she will go back to the hospital in the forseeable future. Maybe that milestone is even just having several days of progress in a row. Maybe one of the reasons that I am so tired (aside from the manic midnight internet research, I mean) is that I’ve been holding my breath waiting for that magical “new normal.”
It strikes me now that maybe this is the “new normal.” Maybe the “new normal” is not stability. Maybe the “new normal” is a series of amorphous, disorderly days from which I cannot expect anything specific.
Despite the vagaries of this version of “new normal,” I do try to schedule time for myself. I’m just not very good at it. Something always seems to get in the way. I feel like a dog wearing one of those electronic fence collars. As soon as I start nosing around the perimeter of “stroke world,” I get a shock that sends me scurrying back well within the boundaries. I had to cancel a trip to California because the stroke was so fresh and rehab so new. We had an overnight trip to Disney scheduled and I was going to avoid the hospital for the entire day we left. I ended up having to go to the hospital because it was the only day the paralegal could come to get the Power of Attorneys signed…. And then she didn’t show up. I had a reservation, made months and months ago, to spend a day at a local day resort to swim with the dolphins. I cancelled it because the hospital suddenly scheduled surgery on my mother’s leg for the day of my reservation.
For the first two months after my mother’s episode, I went to the hospital or rehab facility every single day while also trying to handle the administrative stuff of her life and keep my own household running, too. I kept thinking that I must find ways of doing things for myself, but rarely put those thoughts into action beyond meeting my most basic needs. I needed a day off from “stroke world”- a day when I didn’t have to watch my mom struggle in the hospital or rehab facility, when I didn’t have to chase down medical professionals to share information, when I didn’t have to consider different strategies for paying for care, when I didn’t have to enact administrative procedures to manage my mom’s life. After two months of going to the hospital or rehab facility every day, I craved a “day off” from “stroke world.”
When Hurricane Matthew threatened to stuff Central Florida into a blender and hit the “liquefy” button, I finally spent a whole day without visiting my mother at the rehab facility. As it turned out, Matthew’s impact was pretty minor in our neck of the woods. There probably was no reason for me to not go to the rehab facility. Still, even a girl raised in Southern California knows enough to question the wisdom of going out in the rain… especially when the rain has an actual name. I was glad I did stay home, if only to show myself that I carry no magic talisman with me when I visit my mother that will ensure her health and safety. She was just fine without me for a day.
Since then, I have taken one day each week to not go to the rehab facility. Max and I went to Disney Springs one day, Epcot one day, and to the Lowry Park Zoo one day. I think it has helped, although I am still learning to manage the discomfort I feel about leaving and the dread of what I will find when I go back. Overall, these excursions do help me wring out my stress-addled brain so I can start fresh. Still, it is a bit of a conundrum. While I want these “days off” so badly I can taste it, it feels disloyal. After all, my mom doesn’t get to take a day off from “stroke world.”
I know that it is irrational. I know that I can’t decrease my mother’s anxiety and misery by feeling anxious and miserable myself. I know that there isn’t much I can do to decrease her discomfort and frustration in seven days that I can’t do in five or six. I know that my mother would want me to have a separate life.
I know all these things in my head. But not so much in my heart.
So how do you deal with a “normal” that isn’t? What pointers can you give me? Please share your perspective by leaving a comment. In the alternative, you can email me at email@example.com.
Have a “nicer than normal” day!
9 thoughts on “The New Normal”
You are doing well, and a day or two not going to see your mom, is a good thing. It is a guilt that you get because you are the child. I had that with my aunt and later my uncle who were both in Town & Country. It took a while but I made it through.
You need to have your own life since you don’t know how long this will last. It is hard to not have that guilt complex, but in time you will get over it, I believe. I am praying for you to have days of relaxing doing something just for yourself. It will come. She has care for her needs.
Love and prayers for you all, through all this…quite a change, I’m sure,
Thank you, Lois. You are a good and dear friend.
Terri, I am so sorry for what you are going through. Adjusting to “the new normal” is very, very hard. Like you, I am a reader and a researcher. It gives me a (false?) sense of control, that I am doing everything I can to learn, to manage, and to change.
As you probably know, we are our own worst critics. We are very, very hard on ourselves. My circumstances are a bit different than yours (husband with dementia), but similar in that the sadness and the grief can get overwhelming at times.
Please continue to reach out to others. They will help to fortify and sustain you. I have found that it is great therapy to write posts for my blog. It allows me to pour out my heart and my soul, and I know that readers will respond accordingly. The kindness of these readers just blows me away.
Intellectually you know that you are doing the best you can, and you know that you MUST take care of yourself too. Emotionally, it is hard to do. As best as you can, continue to carve out time for yourself, so that you can be the strength for you mom that she needs.
Thanks, Carole. You are right about the amazing kindness and grace of my readers. It has been very helpful and humbling.
As I’ve said before, you are doing an amazing job caring for your mother. As I too have had to adjust to a “new normal”, I can again relate to this post. I feel that my adjustment is always in flux. I move from anger to denial, from guilt to moments of depression and then to moments of acceptance in a crazy cycle every day. I’ve come to realize that this is all “normal” given my situation, and I think it is for you as well. The difference is that your mom is still with you and I know you need to do whatever you can to ease her pain and discomfort. That’s love!! You are doing a great job!! -Kathy
Thanks, Kathy. As life goes on, a lot of people find themselves in the same situation I am experiencing. It is kind of just what happens. Most people never have to find the strength and courage you’ve had to develop to face your new normal. You are amazing.
Dear Terri, I’m sorry this is such a hard time. I guess most of us face huge shake-ups in our lives, over which we have no control, at one time or another. The only control we have is how respond, both internally and behaviorally. One thing I see for sure in your writing is how much your mother means to you. Certainly she knows how you love her and how deeply you feel. You are both lucky women to have such ties to each other. I have friends who have toxic parents and have to distance themselves…but that’s another topic.
The only thing I can say, as a nurse, is that while you are at the rehab center, use your observational and instinctual skills to assess how the staff are treating your mom. If you feel confident that she is in good hands, you can take your days off, knowing she will be cared for. Certainly report anything you don’t like immediately to administration. But if all is going well, know that you are part of a village of caretakers. It’s not all on you alone. You’ve noted yourself that your mom needs you to be rested and confident. That means taking time for yourself for HER sake, as well as your own.
Thank you so much. I truly appreciate your perspective as a nurse. I have watched to evaluate the care at the rehab. The therapists, doctors, nurses, and aides have been great. My only real complaint has to do with administrative processes- I found it pretty confusing and difficult to figure out how things ran and who to talk to for answers. Now, I have a better idea of the procedures and am less panicky. I never had any reason to distrust or worry about the nursing care. In fact, I’d say that some of the professionals have been truly special. Thanks so much for reminding me that they are there to help me, as well as help my mom.
I’m glad you have felt confident in the nursing care. When my mom was in rehab after open heart surgery, my sister and I felt confident while she was there. The difficult part for us was placement afterwards. She had been in an independent apartment and originally thought she could return after surgery. However, it became clear she would need to be in an assisted living arrangement. She wasn’t safe living by herself. I lived across the country and my sister’s house was not suitable, plus she worked full-time. We did find a nice assisted living apartment for her not far from my sister. There, she had meals in a pleasant dining room with other folks who lived there and was able to participate in some activities. Even though we’re both nurses, we too found some of the processes difficult while helping Mom with big decisions about moving to a new place, etc. She wasn’t able to travel to see them, but she ended up being okay with her new place, even if very, very disappointed not to return to her apartment home. Good luck on your journey with your mom and thanks for sharing with us, Terri.
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