I Confess

People have said to me “I don’t know how you do it.” I usually respond with, “One day at a time,” or some such platitude. However, there are days that I don't do it. I don't keep it together. There. I confess, in writing no less, that there are days I don't and I can’t keep it together. Hell, there are days when I positively lose it, I scream, I yell, I cry. There. I confess. (Looks up to make sure the world didn't just come to an end.)

                Why is it we, as caregivers can’t admit we have bad days? Days when we don't have it all together and days we positively lose it. We can rationalize our bad days, the nurse didn’t show or the patient refused to do something entirely sensible. The truth however, is far simpler and far more complex as well. The truth is we're pissed off, angry, frustrated and sad about the situation we find ourselves in as caregivers. It’s a frequently underappreciated and often criticized job sometimes even by the person we are caring for. So why is it as caregivers, we have trouble admitting that we’re having a bad day even to ourselves? Perhaps it’s because if we admit it we're afraid something bad will happen (hence the previous reference to the world coming to an end). Perhaps it’s because we feel guilty as though we shouldn't have a bad day because the person we're caring for has it worse. Whatever the reason, we have to find healthy ways to express our anger, fear and frustration lest it boil over to the point we can’t put the genie back in the bottle. 

The Safe Target

It happens in every family relationship. There is always one person who is the “safe target,” the one who gets picked on the most. There are various reasons this happens, psychologist and psychiatrists earn thousands of dollars helping people trying to figure out why they are always the ones getting picked on. There are various theories of course, the “kick the dog syndrome” which is the pecking order of picking on someone dad picks on mom and mom picks on the kids and the kids pick on the pets.

It sucks, when you happen to be the “safe target.” You get picked on, yelled at, put upon and genuinely driven out of your mind. It’s frustrating because many times family members will deny they single someone out, either out of guilt or out of a genuine lack of recognition. Sometimes, even when both parties recognize the pattern you still end up repeating it. For example, my mom and I recognize that we do it to each other, we cry, we apologize to each other and we still end up doing it again. It happens more often when the parties live together and work together. There’s no getting away from each other. With family it’s especially difficult because you know exactly what buttons to press to make the other person lose their minds. Rather than avoid those buttons, which common sense tells you would be the more prudent course of action, you go straight for the jugular.

First lady Eleanor Roosevelt once said ““No one can make you feel inferior without your consent.” So how do we withhold our consent? How do we get to a point where we break the pattern of being the “safe target?” I am convinced at some point scientists may figure out the some genetic predisposition for continuing the cycle and come up with some psychotropic medication to “fix” it. Even now, as a society people are so desperate to get away from feelings of inferiority they self medicate with alcohol or drugs or other forms of legal and illegal activities. The problem is when they come up for air the feelings of inferiority are still there and often have been compounded by the addiction.

What if however, we were to change our point of view? Instead of feeling inferior or pissed off, what if we were instead to feel lucky or blessed or even flattered that we were chosen to the “safe target?”  Right about now, you’ve read the last line and went “WTF?!” I’m the “safe target” for my mom and no there are times I don’t feel blessed or even flattered. I get pissed off even though I know she’s my mom and I love her.  There is a morning mediation I do sometimes to Carolyn Myss in which she talks about being with “difficult companions.” She says to acknowledge that this is a difficult companion and that you may be a difficult companion for that person. She goes on to acknowledge that forgiveness is not easy but that you should ask God, or the Universe or whatever higher power you believe in for help. In other words you focus on the “safe” part of “safe target” rather than just the target. You’re the one who the person feels safe with. They know you may blow up and walk away for a while but they also know you will come back. They subconsciously feel if they were to pick on, yell at, or put upon someone else, they risk that person leaving for good rather than temporarily driving you out of your mind. “If I change my point of view, does this mean that you change too?” ~BROTHER “The Crow”

               

Another Glamorous Night

Forget the awards shows with the people in fancy gowns and tuxedos and jewelry that's worth more than most of us will make in a lifetime. True glamor lies in the details of a caregivers' activities. So far my list is up to 74 items I do on a weekly basis and some of which I do on a daily basis. That does not include the 32 steps involved in cleaning poop off of mom. Thankfully, we have help. I put together a fund raiser to raise money for attendant care for mom. I'm on my second one and to my surprise people are donating what they are able some for a second time. So with the first set of funds we raised I was able to pay nursing students from a local college to come in and help a few days a week. I literally take my chore list, go through and highlight the stuff I want them to do. Glamor is in the eye of the beholder. For me I see Glamor in a clean kitchen, a load of laundry put away or trash taken out. Mostly I see glamor in my mom when she's free of feces and free of paperclips and pills in her crotch and back to her demanding lovable self. I don't have fancy cars (heck I'm selling a 1998 Toyota to pay for mom's eventual cremation or as I like to call it her torching). I don't wear my fancy clothes anymore (there are days I'm lucky if I get out of my night clothes before 1 in the afternoon because I've gotten busy doing caregiving). I don't have a mansion but at least both the house and car are paid for and held in trust so I don't have to pay capital gains taxes. So, what constitutes a glamorous night for you? Is it being able to take a shower uninterrupted? Is it finally getting the laundry put away? Glamor is in the eye of the beholder. For caregivers I think glamor is having survived another day without going completely insane. 

What Caregivers Do vs. What people THINK we do #1

Situation: When you have to "clean up" the patient of stool.

What people think: You wipe their butt . It takes two seconds.

What the caregiver ACTUALLY does: 

1. gowns and gloves up to practice good infection control
2. takes out all pillows so that you are able to roll patient
3. rolls patient over to one side so that the butt is exposed
4. wipes the butt MULTIPLE times with a dry cloth until poop is gone
5. wipes butt with multiple damp soapy disposable washcloths to clean up what the dry cloths left behind
6. dry off patient's butt thoroughly
7. place all of the dirty cloths and toilet paper in the dirty chucks 
8. Roll up dirty chucks as far as patient's backside
9. Change gloves from ones smeared with shit to clean gloves this is very important to protect both patient and caregiver and particularly caregiver. The caregiver is not used to whatever organism may be lurking in patient's poop, 
10. Apply medically prescribed ointment and powder to prevent skin breakdown 
11. Place clean chucks partially under patient for the next time
12. Have patient roll back over to the other side 
13. PUll out dirty chucks while simultaneously pulling the other side of the clean chucks through the underside of the patient
14. Throw out all dirty item including gloves in a covered wastebasket 
15. Wash hands
16. wipe down bed with Clorox  wipes 
17. Pull patient to one side or another to reposition patient in bed, making sure patient is centered
18. Patient is paralyzed from waist down so cannot reposition self in bed the way healthy people can by simply shifting weight
19. Pull patient up in bed 
20. lift legs and reposition 5 pillows under patient's legs so that heels "float" off the bed to avoid skin breakdown 
21. reposition one pillow next to patient to avoid patient rolling over to one side and ending up with head under tray 
22. reposition one pillow under head 
23. Wash hands again
24. REPEAT steps 1-23 as often as patient poops in bed because patient can no longer distinguish when they are having a bowel movement due to paralyses 

What's so sacred about shit at midnight?

It's midnight, you're tired you want to go to bed but the person you're caring for has literally just shit all over themselves. At times like this you wonder what is sacred about caregiving? I've had friends tell me they could not do what I do, that the idea of cleaning up an adult's shit or emptying the Foley bag is gross. Yet, these same people happily (well maybe not happily) clean up their small children or grandchildren. Still, as my minister said at that moment you are with someone when they are at their most indignant moment. It is the circle of life. If you are caring for your parent, they cleaned you up as a baby and changed your poopy and wet diapers and now you are doing the same for them. Someone told me today how horrified and undignified my mother must feel at having me clean her up. When I told my mom this, she said that the opposite is true. At those moments when I am cleaning her up she feels most loved. She did this for me as an infant and I do this for her as an adult. That is the time when mom says she feels the sacredness of my caregiving. I have met many people through my caregivers support group who are angry and frustrated at having to do this for the person they are caring for, often a parent. I can understand that. It is indignant work, I am the exception, because my mother is a nurse she understands what it is to be a caregiver both professionally and personally so she thanks me every day. Often the person you are caring for won't give you that support or that recognition. There are people within my circle who still don't understand what it means to be a caregiver. They don't understand that it means cleaning up shit and midnight and still an hour after you've finally cleaned the person up, the bowels start rumbling again and both you and the person you're caring for go "Oh shit please not again." So what is so sacred about shit at midnight? It's the act of caring for another human being and in that act of caring and serving the needs of another human being you are also serving God. I am reminded of the Christian story of Luke 7:37-38 "A sinful woman in the town learned that Jesus was eating at the Pharisee’s house. So she brought an alabaster jar of perfume 38 and stood behind Jesus at his feet, crying. She began to wash his feet with her tears, and she dried them with her hair, kissing them many times and rubbing them with the perfume." There are gifts that are within each of us that remain dormant until they are needed to serve other and in serving others to serve God. So when I feel I cannot take another load of shit (literally) I am reminded of a prayer I say "Dear Lord, I don't want to run away from this task you have set before me. I know there are gifts within me yet to be tapped in the service of others. I know that in serving others I serve you. I don't want to run away from the task but my ego is getting in the way. Please help me to connect with those gifts within me to help me face this task." Sometimes the prayer is as simple as "please God take pity on us. No more shit tonight."