To say that having a relative with dementia is horrific is an extremely mild version of the truth. The sheer desperation that we, as family members and loved ones, go through 24 hours a day is soul-destroying and life-swallowing. I am 100% responsible for one of the most vulnerable people on Earth and the weight of that is crushing the life out of me.
Mum’s still having her meltdowns – pretty sure it must be sundowning – and last night’s eruption was horrendous. I was going to say horrific but I have already used that word and I don’t want to dilute the strength of it, but it truly was HORRIFIC.
Screaming, shouting, repeatedly and violently rattling the front door, trying to pull it off its hinges to escape; sheer panic. The look on my mother’s face touched something so primitive in me and is breaking me. She is the most vulnerable a person can be, other than being a newborn. However, newborns are usually (apart from the few) are not left to fend for themselves, in a world that becomes increasingly impossible for them to comprehend.
As I sit next to my mother, she hears my name and thinks that it is hers. She is the only close relative that I have in this world, the woman who gave birth to me and yet she doesn’t know who I am. It’s not her fault and I am hurting in a place so deep in my psyche for her, and for me, but it doesn’t make any difference…to her.
The physical, emotional and mental decline caused by dementia is swallowing up my life along with hers.
The intense pain that is searing welts across my heart each time I look at her soft skin, her uncomprehending gaze; the fear etched onto her beautiful face. The overwhelming stress that is anchoring me to this version of a life that I abhor. The endless solitary confinement of my soul that wants to break free of the shackles of someone else’s decline. The guilt. The sticky, cloying, malodorous, deepest black, airless, suffocating guilt that never abates, regardless of what I do and how much I sacrifice to make these last years of my mother’s life less awful. They are all killing me.
Is giving up my life to make my mother’s better worth it? Up until today, I believed it was. I believed that the more I do for her, the longer she will live a quality existence, in spite of the obvious enemy eating away at her brain. But, today something happened to that belief that turned the prison warden’s key one notch in the lock towards my freedom; whether I lose years (as I have) fighting this invisible enemy on her behalf, or not – the inevitable already has its teeth submerged into Mum’s neck and is sucking away her life force and is getting mine for free.
I don’t want to leave Mum alone in a care home but I also realised today that I cannot spend these valuable years of my life spoon feeding her and wiping her bottom, when she doesn’t even know who I am to her.
It’s so hard for me to acknowledge this sudden realisation; and what I will do with that thought I do not yet know but I do know that I will try to seek the opportunity to live and be free. Do all the things that I hoped and dreamed my mother could do when this nightmare began in 2003. Mum was around the age I am now and didn’t get to make any of her dreams come true, see the world…or just live a normal mundane life.
I asked Mum today, “What is the right thing to do? Is it to live your life for yourself, or to live it for someone else’s happiness?”
“Live it for yourself, ” said Mum, true to form. That’s all she ever did whilst she could, at the expense of parenting me. I am beginning to think it’s time for me to do the same.
If only I knew how to deal with the guilt. Perhaps tomorrow will bring the answer? Or, perhaps guilt is the easiest way of carrying the grief of watching someone dying more each day.
Toula Mavridou-Messer 