Since my breathing is compromised, I cannot shout and I am difficult to understand. If there were an emergency, I could not call for help or get myself out of the house. The most frightening reason I cannot be left alone is I choke frequently on my own saliva so I need someone to use a suction device (like you have experienced at the dentist) to clear my throat. Doesn't that sound delightful?
That is not even the worst of it. The real entertainment happens in the bathroom. Oh, the bathroom, I won't even go into the details. Suffice it to say, taking care of me in the bathroom tests your resolve both physically and mentally. It's not easy!
If that was the extent of my care it might be difficult but doable. The real challenge is the continuous nature of my care. For instance if you had to take care of someone who had a broken leg it might be hard but you know it would be short-lived. My situation has gone on for four years and only God knows how long it will continue.
Beyond my caregivers, this is for all of the caregivers out there who are dealing with a similar situation. This is a message to all of you speaking as the person you are caring for. Yes, I have nominated myself as the spokesperson for everyone who needs continuous care. I am going to provide a voice for you. Think of this as a very specialized Hallmark card!
About the nights, I know the nights are difficult because you have to turn me every couple of hours. I know you're not well- rested yet I demand your attention all day long. I know my wife copes by telling herself that this is just another chapter in her life. She knows everything that is temporary is livable.
Don't take it personally. I am trapped inside a body that does not want to cooperate. I remember when I could do anything, now I can do nothing, so it is frustrating! Sometimes the frustration builds and overflows resulting in a downpour of tears; it is uncontrollable.
What are you going to do? Simply put your hand on my shoulder and tell me you understand. If you want, you can cry too. I get it. I really get it!
I also know the reason you are denying yourself this needed respite is because you are worried about me. I understand and I wish I had a solution. I'm not that fragile, perhaps someone else can fill your shoes, albeit not as well, but I will survive for a few days.
Remember, even God rested after six days of work!
I love you and I know we are on this journey together. We are in it to win it. What are we winning you might be wondering? We are showing the world how we triumph over tragedy. We show everyone that winning is a continuous state of mind not a momentary victory.
If you are a caregiver, I am confident the person you care for would voice these same sentiments to you. Hang in there. You are loved and appreciated for your sacrifices. Rest is coming