As we traveled home from D.C., I could feel my mood shifting. I was nervous, anxious, and growing more depressed. I feared coming home into the same routine and daily struggles we had left behind and longed for the relaxed feeling of being somewhere, anywhere else. The feeling was eating at me, and my frustration was compounded by not wanting to feel that way.
I realize that despite the fact that we have been dealing with everything for years now, it is still fresh and raw and it hurts. I am tired of being wrapped up in the day to day emotions it brings. We need to have some happiness and joy in our lives. I know that we have the power within us to do that, but it feels like a steep climb up out of a deep and rocky chasm.
So, here I am clearing it all off my chest, and then I’m going to try to stay one step ahead of it.
Yes, I resigned from my job in December. I do not live a life of leisure. I spend my days doing laundry and chores around the house and taking care of Sean. I would give up my “free time” to go back to life as it used to be where both my husband and I were employed and enjoyed our careers and our lives. This was a life-change of necessity, not one of laziness.
I have had it with paperwork. Filling out, scanning, emailing, sending records, requesting records, new forms. . . . “I need you to help me fill this out.”
I would like to put an end to chasing appointments, making appointments, consulting about appointments, and waiting for appointments to be scheduled. Sean needs regular treatment and checks, but that should be IT unless something in his health changes. Leave. Us. Alone.
What I want for my husband is to get the regular care he needs. He needs to see his psychologist weekly. He needs to see the psychiatrist. He needs regular checks with his primary care manager. Let us use these encounters to heal what we can and train what we can’t.
In order for Sean to have any degree of independence requires an immense amount of training. He came home four years ago and I have STILL not been able to train him to keep his wallet and phone in a consistent spot. I use an online calendar that will text his phone 30 minutes prior to an appointment. He cannot find his phone, doesn’t check his phone, or doesn’t know why his phone is making that noise.
We have tried a variety of white boards and calendars where he records his schedule and “to do” lists. He can’t remember to check it. Or, my favorite, when I remind him to check it he says he already has, although he hasn’t, and he misses something which results in his being upset with me for not reminding him. He will not write the schedule out himself.
He wants my help, needs my reminders, but gets angry with me for helping him. Conversely, if I do not remind him or do not help him, he is angry because, “You know I need help.” What’s a wife to do?
He wants me to wake him in the morning instead of setting an alarm for himself. The VA purchased a watch for him with alarms for his medications and schedules. He will let it beep to infinity before checking it, or will turn it off and ignore it and miss his meds. Frequently, he misses medications and then wanders about wondering why he has so much pain, is dizzy, doesn’t feel right, etc.
If I remind him to take meds, he snaps at me that he can do it by himself. Yesterday, he took no meds until bedtime. “Why don’t I listen to you?” he asked. The million dollar question.
I remind him that in order to get his cycling in before it’s too late at night he needs to go ride. . . but he is more interested in whatever he is watching on TV. I ask him to clean his CPAP machine (it’s been days) and he “will get to it.”
Many nights when Sean goes to bed, it’s like having my kids little again. “Should I watch a movie?” “Can I listen to my headphones?” He will repeatedly get out of bed to get a drink, flip the channels, or ask what he should be doing. Frequently after he has gone to bed I discover he did not take his medications. If I go to bed before him, he comes in, turns on the light, messes with his headphones, fiddles with his CPAP (ok, maybe not fiddles, adjusts. . . for the life of me I could not sleep with that face mask on and air blowing in my face). At some point, he will become uncomfortable and take his mask off and the snoring commences for the remainder of the night.
We tried sleeping in separate rooms for a time, and no lie, I slept so much better! But on the flip side, I don’t like saying we can’t even sleep in the same room. Sometimes I feel we are so far apart the way it is with our role switch, that moving him out doesn’t seem like a logical solution.
I am at a point where I feel we need friends around us as it is the only time we can experience normal social interaction and our roles revert somewhat to that of husband and wife.
Sean’s psychologist has been gone for almost two months on maternity leave. He has regressed back to where he was before they started therapy. He needs that weekly contact. They briefly tried V-Tel before she left to save us the six hour round trip, but Sean said he felt disconnected. When she returns, we will travel to see her. I am whole-heartedly willing to make that weekly trek for him.
Since our CBOC still does not have a psychiatrist on staff in Aberdeen, Sean is seeing Dr. LR in the interim. They have a good working relationship and we plan to travel to see him monthly as well. Those relationships are hard to establish for Sean, so if he has found a match, I’m all for it. He has even started to share that sometimes he sees people and hears voices that aren’t there. Freaky, yes, but I am thankful he is getting it out in the open so he can deal with it.
One last thought, and if you’re family and easily offended, feel free to skip. I thank God everyday that Sean is here and he is alive and our family is together to share our lives with him in it. However, Sean is not the person he used to be. There are snippets and glimpses, but not the same. Sean was never needy, vindictive, or mean. He never swore at us or used derogatory comments to hurt us. He never ever put himself above the rest of us, which he does now with frequency, although he doesn’t mean to and doesn’t realize it. So although he looks like Sean and walks like Sean, many, many times he is not Sean. He is not the supportive man who used to help me up when I had too much on my plate. He wants to be, this I know with certainty, but he is not.
So in a (rather large and crowded) nutshell, these are our day-to-day struggles. I’ll get off my pity-potty now and get on with my day.
|To get him organized and out the door|