How do you keep your dignity when everything you have had is lost?
The use of your left side is gone, your arm and leg hang limp, your face sags. You do not know when you have food in your mouth on that left side. You drool and food falls from that left side of your mouth to your clothing. You have lost the feeling of the need to go to the bathroom. Young aides come to you to check and change your briefs. You have lost the control of your own body.
How do you keep your sanity when you have lost control of your environment. You are told you cannot live alone any more because you cannot care for yourself and your basic needs. Someone else makes the choices of where you must live. Someone else makes the choices of what you eat. You have to wait for someone to come and take you to the shower, help you shave, tell you when to brush your teeth. You want to go to bed but have to wait over an hour for someone to come and help you get ready for and into bed. Your life is run by someone else's time frame. You have no control over the noise coming from the room across the hall that wakes you in the night and restricts you from getting back to sleep. You cannot take a pain med for your aching tailbone when you need it, you have to wait for someone to bring it to you.
How do you deal with being the "freak show" when your family means well but they are watching your every move to make sure you have what you want or need close to you but also they watch every bite you take, every Kleenex you use, every cough and sniffle to make sure you are not choking or dripping or drooling or slipping. You feel like you are under a microscope and every breath you take is being measured for signs of life. Being the center of attention is not fun when you don't want it.
And what if you no longer can talk, you have no longer have a voice to communicate your needs, or your brain is also affected and you cannot form the words or thoughts you need to communicate what you want or need. Your name has to be ironed onto all of your clothes so they don't get mixed up with someone else's. How do you deal with the frustration, anger, helplessness, or hopelessness? This has got to be a lonely, achingly hard existence. Is there a point to this existence? What is the purpose of living a life like this?