The End of Life
I can’t speak for everyone and we all have different coping mechanisms, but I am sure much of what I feel is common. I write this now so the loved ones of every dying or critically ill person can find out what it feels like without forcing their loved one to say it. If you absolutely MUST have them tell you what they don’t want to say let them read this and circle the parts that apply to them.
A terminal illness is a terrible thing for the loved ones of the stricken person, but it is twice as bad for the person who is afflicted. You may think you want them to share with you how they are feeling, but you don’t. Even if they tell it you won’t REALLY know how it feels until YOU are the one who is dying.
You are grieving for your loss and worrying about your future. Your loved one is worried about these things AND they are trying to cope with the reality that their time is coming sooner than they would like.
I had 46 of the best years any human ever had. I was healthier and happier than 99% of the world. My neuropathy started in 2009 and I have suffered ever since. I have an autonomic nervous system dysfunction so NOTHING works the way it is supposed to.
I never know if I will be able to sleep, if I will feel rested if I DO sleep, if I will be able to keep what I eat down, how long I will feel like I want to hurl if I DO keep it down, which part of my body will be in indescribable pain or how low my energy level will be.
Each day I wonder why I continue to fight when the only thing I have to look forward to is more pain and suffering. The only reason I persist is because of my loved ones. I worry more about them than I do about me.
If I were alone in the world I would have lain down and died over a year ago. The only thing that drives me on is my will and each day the will grows weaker. I don’t want to die because of how it will affect those that care about me, but at the same time I feel conscribed to go through an ordeal I would just as soon not face and I resent the fact that I can’t just lay down and die.
I want to tell people just how awful I feel, but I don’t believe anyone else should be burdened with it, thus my silence. You want to understand how we feel, but WE DON’T WANT YOU TO UNDERSTAND IT. It is the worst feeling a person can possibly go through. I would prefer that anyone I care about die a sudden, peaceful death so that they never know the frustration, guilt and anger of a protracted terminal illness.
I feel guilt because my wife never signed up for this. I feel guilt because I promised I would always be around to protect her. When she met me my health was perfect. I was strong mentally and physically. She has had to watch my suffering and she is helpless to do anything about it. This is the one thing that everyone can understand in the situation – the helplessness.
I have had a lot of experience in my life, and helplessness is one of the worst feelings there is. In the past my sense of helplessness always centered around being unable to prevent loved ones from being ill or dying. On a personal level I always felt that as long as I had my mind and my health I could overcome anything. My health has been taken from me and my emotional and psychological well being is suffering from it.
I am so tired all the time that it is impossible to describe. On a good day I might feel decent for an hour before the fatigue sets in. This isn’t just a tiredness or a bone-weary feeling. This is a fatigue that cuts all the way through to the soul. I am so tired, but I am even MORE tired of being tired. I would give anything to feel like myself again for one lousy day.
The frustration and anger are directly related to the helpless and hopeless feeling. They are not angry AT YOU. They are just angry down to their very core because they not only can’t help you, they can’t even help themselves. If we try to avoid you so you don’t see our pain you feel a different kind of pain from being shut out. Many of us choose to shut the other one out rather than let them feel the worse pain, guilt and anger.
I haven’t even mentioned fear yet. Fear is always present now. I am afraid of what will happen if I die before my mother, wife and daughter do. I have already seen what it did to my grandparents when my dad died before they did and the sorrow my aunt and uncle had to endure when they lost their daughter at an early age. I saw what my mother went through when my dad died. I don’t want my mother to go through that again either.
At the same time I am afraid of what will happen if I outlive them. I can’t imagine a world without my mother. She has been the rock that my universe has revolved around for 57 years. I have never known a time without her and I can’t imagine one without crying. Life without my wife is nearly as inconceivable and the thought of losing my daughter fills me with a sense of dread like no other.
For me the fear is the hardest thing to deal with. I have been basically fearless throughout life. I led with my face and figured if I got knocked down I would get back up and heal. The fear I felt was usually short-lived and ended when I could confront it. I was never concerned with what MIGHT happen because I always had confidence that I could deal with WHATEVER happened. If something DID make me afraid I would confront it head on. I was a defender of the weak and unafraid to seek truth and justice. Now I am being killed by a foe that I can’t outsmart, outrun or overpower.
I really had no experience with fear and now I live with it every day. That is one source of the anger.
The anger is what you see. I feel like a wounded and cornered grizzly bear. I want to lash out and destroy everything around me, but what good would it do? So it is just one more thing that hurts and can’t be expressed.
How do I tell you that I push you away so that I can deal with this without you seeing the true depth of my pain and anguish? That I get tired of putting on a brave face and sometimes I just want to let the sorrow flow? That I can’t feel free to suffer while you are present? That sometimes putting on the brave face and trying to carry on is the most difficult part of all of this?
How do you describe the incredible burden of trying to go on with life when there is no hope? How do you tell someone that the sorrow in their eyes only compounds the sorrow in your heart? Is it fair to shut someone out and not let them know how you feel? Of course it isn’t. But it is equally unfair to ask someone that loves you to lay the burden of their pain and fear on you as well. When they tell you that they don’t want to talk about it and they don’t want you to know TRUST THEM.