Put Guilt Back in the Box
There are a multitude of emotions that play into being a caregiver or being the one with the chronic disease that needs the care. Which emotion takes front stage on any given day is affected by how you feel, how the other person feels, how much sleep you got the night before and what else happened that day. One of the emotions that I have to battle more often than most is guilt. I think I struggle with it the most because I can’t seem to be what I think I should be and I can’t always do what I think I should be able to do. In my own mind, I know that when I say I will do something, I absolutely know that I can do it—I am quite capable; I have the knowledge, the skills and the ability to do what I say I can do. Then something happens to prevent me from getting to it or doing it as well as I had wanted to do, and the guilt sets in.
I am extremely fortunate that I have a job that can be done from almost anywhere as long as I have a phone, a computer, and access to the internet. Since I have all three at home, my manager allows me to telework. I come on site at least once a week usually to attend meetings or to provide training. I often attend meetings through teleconferencing but sometimes I just need to see a person’s reaction to be able to pick up on how a conversation is really going. On the days I go in, I often set up back to back meetings so I waste no time when I’m there. To go onsite, it takes a minimum of four hours to get ready to go. Unfortunately, our morning routine does not always go as planned. Not to gross anyone out but sometimes the bathroom process doesn’t go as well as we would hope and it puts me way behind schedule. Other times, I get a text from whoever was supposed to come that day saying they woke up with a runny nose or cough. We try not to expose Lynn to any infectious or viral conditions because it sets him back so far so I scramble to find a replacement and often, that’s impossible so I have to stay home. I HATE WHEN THAT HAPPENS. I feel so guilty when I have to reschedule appointments or even when I have to say that I’ll need to talk to them by phone because I know they would prefer to talk face to face. Though I still manage (usually) to get the work done, it’s not how I wanted to do it or when I needed to do it so I feel guilty and very critical of myself.
Now, flip that coin. When I have to cancel going into work because Lynn’s body refuses to do what we need it to do or we can’t get someone to stay with him so he doesn’t have to be alone (note: he can stay alone for maybe an hour or even two at most but no longer than that because he can’t get food, drink, or empty the urinary drainage bag for himself), Lynn feels so guilty. He knows that I am jeopardizing my reputation for his sake. Knowing that if he could just do those things for himself, I would not be under the pressure I live under every day makes him very depressed at times. I need to be able to share my frustrations with him but I hesitate to do so because I know that guilt will certainly rear its ugly head. It doesn’t matter that he has no control over what happened and that he absolutely can’t do these necessary things for himself so it’s really not his “fault” but to his way of thinking, it’s entirely his fault because if not for him….. He is also afraid that one day, I’ll be so overwhelmed with all the responsibility and so tired of the struggles, that I’ll just walk away; so on the one hand he feels guilty and on the other hand he feels afraid. Yuck.
It’s a vicious cycle at that point. I see he’s depressed because he feels guilty because “he” kept me from going into work. I feel guilty for not keeping my commitments and I resent that I can’t because we cannot afford a full-time caregiver for him. So I feel resentment, then frustration, then anger, then shame, then guilt, and then depression—all in about 30 seconds—and then I tell myself to “get over it.”
I allow myself that 30 second pity party and then I need to move on. I am way, way too serious and hard on myself. I absolutely do the best I can ALL THE TIME. I don’t take breaks for very long and I will always find a way to meet the needs of the people who need my help at work. I am very creative at problem solving and through God’s grace; I am still able to do everything I need to do for work and for Lynn. So I just need to “get over it.” I need to give myself a break and accept that I cannot do anything as well as I used to do but I still do everything well. I’ve had to re-set my priorities but I reset them to where they must be to fit in with what is important to me.
I still struggle daily with guilt though. I have to have that talk with myself almost every day. Sometimes I can’t push that emotion back into the box but there are more and more days that I can walk away from it; so I’ll just keep taking it one day at a time and walk on….
Does your employer provide workplace accommodations due to your MS?