My God! - day after day you look out through the "prison" bars (I know it's a terrible way to think about it when talking about family ... but like they say, if it looks like a duck and sounds like a duck ... lol). Anyway, you look out to see the sun shining down on people - people going about their day to day lives, making plans/ doing things without a thought, even complaining because they have to jump in the car to go get something and they don't even realize or appreciate how lucky they are to be able to do these things.
Meanwhile, back in the "prison" your day (everyday) consists of endless repetitive conversations, complaints, tantrums, schedules etc. that with each passing day eats away at your sanity.
You long for freedom, long for all the things that others take for granted! Just to be able to go to the bathroom, eat a meal or have a conversation with your spouse(or anyone) uninterrupted would be like a dream come true! Oh and how WONDERFUL it would be to be able to go ... just go anywhere, without first having to come up with some kind of a battle plan! Dreams, dreams of such ordinary things that seem so out of reach.
The problem is that you know what needs to be done to attain your dreams and you dread the thought of it, it seems like such a BETRAYAL! After all, it's not like they're doing this to you on purpose, it's not like they can help it! You think of how they used to be, you think of all the things they have done for others - including yourself, you say to yourself, how can I do this to them?, how can I leave right when they need me the most?!
On the other hand, you see your chance for life passing you by - days turn into weeks, weeks into years. You find you have grown old beyond your years, that you are a mere shell of the person you used to be - your sanity challenged, emotionally distraught almost destroyed and physically worn to the point of total exhaustion - all you want is for it to be OVER! The MOMENT that thought crosses your mind, the guilt begins again ... and round and round it goes.
There comes a time however when you finally have to make a choice ... I don't like the choice I'm making, I take absolutely no pleasure in what I HAVE to do, but for my own survival and for the health and well being of my family, including my Mother, I have decided that I cannot go on the way I am. I have to face the fact that my mom now needs more than I am able to give.
I have to say these things to myself (out loud) many times a day to try and drive the facts home (that's a big reason why I wrote this in the first place ). It's amazing the way even just a few minutes of Mom being "good" is enough to over power hours and hours of Hell and make me question my decision ... but I can't afford to waver this time, there is too much at stake!
My advice to anyone reading this, that knows they are going to be facing a similar situation in the future, is to get things started early. Just because you have things in place doesn't mean your going to have to implement them right away. One of the biggest mistakes I have made (and I think this is true for the majority of caregivers out there) is that I waited way to long to get things started. I waited until I was at the absolute end of my rope, all because I didn't want to give up - give in - admit I couldn't take care of my own on my own. Now I'm at a point where I want/need things to happen RIGHT NOW and here's a shocker ... it doesn't work that way! There are meetings and appointments, testing and paperwork and they all take time - not to mention the waiting lists that you get on after all the other stuff is done.
So please remember, although it may feel like it at the time, being prepared is NOT giving up on your loved one!