Living with a loved one who suffers from a disability is sheer hell! No-one who hasn’t been through it can ever understand the overwhelming frustration, guilt and loneliness you feel when whatever you do doesn’t help. When you give every ounce of your being to your loved one, all your time and energy, and nothing makes a difference. You lose sleep, walk around like a zombie, ask for help, but there isn’t anyone around who cares.
The guilt and lack of sleep are what gets you in the end. Guilt because this shouldn’t be happening to your loved one, guilt because it goes on for days, weeks and years, guilt because you’re grateful it’s not happening to you, and guilt because you feel bad about thinking that way. The guilt and frustration is relentless. It’s not fair and it’s not your fault, but you are at the end of your tether with no way out.