You're Doing a Great Job

  A strange thing happened recently, I got told I was doing a great job taking care of grandma. Now, an outsider might not view this as strange but we know as caregivers it’s extremely rare that we get thanked or praised. There’s a line during the Eucaristic prayer in the Episcopal Church service where the Celebrant says “Let us give thanks to the Lord our God.” To which the People reply “It is right to give him thanks and praise.” First of all, why is it so hard to give thanks and praise to caregivers? Yes, it’s our job, as family members or friends or even human beings, to care for those who can no longer care for themselves. Yes, we did sign up for this gig, sometimes, reluctantly. Now granted there are some like my aunt who is grandma’s primary caregiver who is not comfortable receiving thanks or praise and always gives credit to God. In some cultures it’s even considered bad manners to compliment someone. However, for many of us praise or thanks goes a long way to making us feel better about the work we are doing. I know that I’m doing a good job with grandma, she’s happy she’s pretty healthy for a woman turning 98 this year, up until a few years ago she was still driving herself around the small town in which she grew up and in which she raised her kids as a single mom. I know I'm doing a good job, and there are days when I know I could’ve done better. How many people can relate to that feeling? The feeling of I could’ve done a better job; I should’ve handled that better; I shouldn’t have lost my temper? We tend to focus on what we could’ve, should’ve, would’ve done to be better caregivers rather than praising ourselves for what we did well. Often giving ourselves praise is seen in society as being egotistical or bad. Pardon me for being blunt but too bad society if you can’t handle my having a strong sense of my own self worth. If I don’t praise myself, or feel good about myself how can I expect others to? If I don’t stand up for myself and say no how can I expect to be able to stand up for others? 

Now, I have a confession, when people who don’t normally give praise or who praise in a backhanded manner like “I don’t normally like this meal but I like it when you cook it.” When those people are giving me genuine praise, it makes me a bit cynical and makes me start wondering “What did they mean by that?” Finally I had to tell that little dissenting voice I call my inner saboteur “Thank you for coming, I surround you in light and release you.” In non-spiritual terms I tell that inner voice to hit the road. 

If you follow any teachings by Abraham-Hicks or Wayne Dyer or any other Law of Attraction gurus you will know that your inner being, the God within us, doesn’t see us or situations negatively; it only sees love and joy and gives us nothing but thanks and praise. So why not listen to that voice instead? The voice within you that says you’re doing a good job. There’s a saying in Alanon “I will take one compliment and hold it in my heart for more than just a fleeting moment. I will let it nurture me.” So today, I’m going to take those compliments and let 

Getting to know yourself again

It's Saturday morning and I'm having breakfast at my favorite place by myself!  Caregiving is sacred work and it's hard work especially if that caregiving is 24/7. There are so many external things requiring your time and energy tt's very easy to lose yourself. We get so involved with caring for others that often we forget who we are outside of being a caregiver.  I used to have a button when I was a teenager that said "Be yourself no one else wants the job." But how can you be yourself if you no longer know who you are? Stubborn me, I thought well, I'm my mom's daughter and I was her caregiver and she raised me to be a strong independent woman so that's who I am. One day my aunt vocalized the truth that I had avoided. At one point she and I were alone in the room of the funeral home with his body in the casket the day he passed and she said "I don't know who to be without him." That statement hit me like a ton of bricks. Here was my aunt who had cared for my Uncle after his cancer diagnosis vocalizing in a matter of hours what I was only beginning to realize almost three years after my mom's death. "I don't know who to be."

My mom God bless her, gave me as many opportunities to take time off to do what I wanted as she could when I was her caregiver. Even so, after she died she left a void, which I needed filled because I didn't know who I was outside of a caregiver anymore. I thought I had become the strong independent woman when I moved from California to Oklahoma. I became a homeowner of my very first home that wasn't my mom's, I had my dream car, I was surrounded by my family and yet unbeknownst to me the void was still there. As my medical intuitive said I was trying to fill the void with other people. At the time I thought she meant I was looking for another mother figure to fill the void. In retrospect I think what she was referring to was I was looking to fill the void as a caregiver. I allowed people into my home whom I thought needed caring for and whom I allowed to take advantage of me and who encouraged some my unhealthy behaviors. Once I encouraged their departure from my home things started to fall into place. I still didn't necessarily know who I was but I was finally ready to rediscover myself.

God, however, is not without irony and provided me with a job as a personal care aide, in other words a professional caregiver. However, through the course of my job I met other caregivers and members of the community. First, I met my cousin's friend who is  studying to become a Certified nursing assistant and she turned me onto a reiki group here in town. Then I met members of a genealogy group and then a writer's group. I would hear about these things and remember parts of who I was outside of a caregiver. I am a writer, I am interested in genealogy, I am as Dr. Wayne Dyer said a "spiritual being living a temporary human existence." I am that I am. The more I got to know myself again the healthier I became in body mind and spirit.

I am discovering myself again I still don't know what the future holds or who I will become next but the thought for the first time in a long time excites rather than frightens me.

I leave you with this question "Outside of being a caregiver, who are you?" 
 

In Praise of hospice

I remember when my mom first told me that she had made the decision to go on hospice. She had wanted to wait to tell me face-to-face until I got home from work but as usual I pushed and she finally relented. I literally had to pull over at a rest stop between the school where I was teaching and my house because I was so upset and crying to the point I couldn't see out my windshield of my car. What I quickly came to learn was hospice didn't mean she was what they call eminently terminal meaning she wasn't going to die within the next 24 hours or even the next 24 days. One of our favorite things became that doctors had MD after their name not God. So many times people hear the word hospice and they automatically think the person is going to die tomorrow or sometime in the near future. What hospice actually means is there's nothing more that can be done medically for someone. A person on hospice can still live for however long he or she and God choose. The first seven months my mom was on hospice she still went to church, attended to concerts and made our annual pilgrimage to the Buena Vista in San Francisco for Saint Patrick's Day well she was in a wheelchair and on oxygen. All of this she was able to do because hospice controlled her pain with her bone metastases. The hospice AIDS came in gave her a bath and changed her sheets. The nurse would come a couple of times a week. They even had a volunteer come and sit with her so I could go run errands or have an actual night off. It was actually the volunteer who gave us the idea to have student nurses come from the local College and act as personal care aides. The volunteer  was a nurse herself and was one of the nursing instructors at the local College. Hospice had a chaplain who came even though our church minister came as well to provide spiritual guidance. When my mom became bed bound hospice increase their visits. The hospice nurse even met me at would come at night time if there was an emergency with my mom. Hospice ordered equipment for my mom to make it easier to take care of her at home. And yes hospice was there at the end with not just my mom but with me. Don't be afraid of the word hospice or what it means. 

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