Grateful. Ungrateful.

Let me explain…

It was brought to my attention the other day by a very dear loving friend that maybe I might be “misunderstood.” She said that I might want to seem a bit more “grateful.” I asked her what she meant by that. She said that not everyone with ALS has caregivers and that I should act more gracious. She said that she knew our circle of friends understood my humor but that maybe strangers don’t.  Maybe I have some explaining to do. After getting over the initial shock of what she said to me, I thought maybe there was a teeny tiny itty bitty chance that she might be right.

Let me start by saying that I wish I didn’t have caregivers. I don’t want them. I wish I could wake up in the morning, place my feet on the ground, stand up and walk to the kitchen and make my own coffee. Something as simple as that would bring me the greatest joy. Trust me, I don’t think it’s great that I have someone wait on me. This is not living in luxury. It is hell on earth. I would love to do everything for myself. I hate “having caregivers.” I hate needing to have caregivers. She also told me that most people with ALS have their family caring for them. I would love that. I would love to have my mother, father and sister help out. I would love to have my sister here making me laugh. I would love to have my mother here making my favorite cucumber sandwich just the way I like it. I would love to have my mother here decorating and rearranging all of my picture frames. I would love to have my father here to enjoy a glass of wine with. I would love to have my brother here, rest his soul, carrying me in his big strong arms. But they are not here. My true family consists of my husband and my 18-year-old daughter. My husband has to work in order to pay for our lives, obviously. My daughter goes to college. It is not feasible that they take care of me. Therefore, I have to have caregivers.

I love and hate my caregivers. Unless you are in a position where you have been completely dependent physically on another person I’m not sure you can understand what I’m talking about. For example, I have spent the last 44 years doing things my way. We all have. You create your own habits, your own patterns, your own way of doing things. I had to give all of that up. Geez, just now by writing that, I just teared up. I guess I’ve never really said it out loud. I had to give everything up. I had to give up all of my control. Someone else brushes my teeth their way. Someone else washes my hair their way. Someone else does my makeup their way. Someone else even wipes me their way. Front to back! Front to back! That is somehow lost in translation. Maybe people do not understand that I cannot do anything for myself anymore. You start to resent the people that help you, however, I understand it’s not their fault.

Also, to clarify things... Yes, I may have four caregivers but they are not all here at once. They are on rotation. It is impossible to 100% take care of someone for more than a day at a time. You lose your mind. It is called caregiver burnout. It’s like a tagteam over here. One caregiver in, one caregiver out. When I hire the caregivers, I have to explain to them that their job is to “be me.” Being me entails a lot. The caregivers have to do everything that I cannot… which is everything. They need to wash my hair so now they are a hairdresser. They have to dress me so now they are a stylist. They have to move my body so now they are a masseuse. They have to cook my food so now they are a chef. They have to do my makeup so now they are a makeup artist. They have to clean my feeding tube so now they are nurse. They have to control my breathing machine so now they are a respiratory therapist. The list goes on and on. Photographer, florist, driver, manicurist, babysitter, nurse, computer technician, television technician, blah blah blah. On paper, it may sound like I am a princess because I have people doing all of these things for me but it’s because I cannot do it for myself. I cannot even lift up my thumb.

So what am I grateful for? I’ll tell you. My version of grateful might be different than yours. I am grateful that I can breathe today. I am grateful that I didn’t die in my sleep. I am grateful that I don’t have bedsores. I am grateful that I didn’t choke on my own spit. I am grateful that I can speak. I am grateful that I can move my head. I am grateful for my friends. I’m grateful that I don’t have a catheter. I am grateful that my feeding tube is not abscessed today. I am grateful that my diaphragm pacer isn’t painful. I’m grateful that I’m not depressed. I am grateful that no one dropped me today. I am grateful that my husband has a wife for another day. I am grateful that my daughter has her mother for another day.

So yes, I am “grateful” that I have a caregiver but it is not by choice. I always laugh when I think about what I would do if I had my health back. Do you know what I would do? The first thing I would do would  be fire all the caregivers, get in a car by myself and drive and drive and drive and listen to the loudest music and sing at the top of my lungs ALONE. I just want to be alone. Imagine if you can never again be alone. I can’t be left alone for even five minutes. My breathing machine could fail, I might choke, my legs might become numb, I might stop breathing, etc. etc. etc. I am scared all day long that this might be my last day. My caregivers are here to prevent that but I feel like a helpless stupid blob and I choose to take it out on them. Just kidding.

Grateful? Yes. Ungrateful? Yes. Yes to both. I hope everyone understands.

"Piglet noticed that even though he had a Very Small Heart, it could hold a rather large amount of Gratitude.”
A.A. Milne, Winnie-the-Pooh