It is official. I have finally lost my mind. I can honestly say that the world has never looked as bleak or as hopeless as it does now and for someone who has always tried to view life through rose coloured spectacles that is an admission I never thought I'd make.
I just don't know what I'm doing anymore, I honestly have no clue what or where I'm headed and it's an incredibly isolating fact.
After 15 years of caring for my Mother, she has Rheumatoid Arthritis in almost every joint of her body, I am now having to face the fact that this has to stop. I can't do it anymore. There is nothing left in me that cares anymore, I can't bear being near her, I hate the sound of her voice and I am constantly biting my tongue to avoid the daily arguments which have become a staple. Her life, she says, is over. She is now at the point where she needs me to hold the mug to her lips, to place her medication on her tongue, and dare I say it, wipe her after she has used the bedpan. She has nothing to live for - her words. There have been a lot of years when this wasn't the case, but she never did the things she was told to do. Her Physical Therapy lasted exactly one visit, she said that it hurt her too much to continue. A recent visit from the Occupational Therapist ended with her crying and shouting that she just wanted to be left alone. Her GP washed their hands of her years ago and we now get her repeat prescriptions filled via the local Pharmacy. The Surgery hasn't even updated their records to show her as being housebound for the last 6 years and bedridden for the past year. She is now, and has always been, extremely difficult. It has to be her way or not at all.
Which was bad enough when I was 20, I thought it would be a few years of therapy, possibly an operation, and her standard of life would improve, leaving me able to return to Uni maybe or at least live a normal life. Now at 35, I realise that this will never happen. If I dare suggest that I want an evening out, I get "I wish I could go out!" batted back. When she was 35, she had been married for 8 years and had a 5 year old child. I accept that her current predicament is not fair, but she seems intent on viewing our situation through blinkers. If it doesn't affect her directly, it is not happening. My sanity is not important, just my availabilty.
We are now at the stage where surgery would not make a difference. Her meds have altered over the years and her current pills halted the Arthritis for a good few years. Not enough to enable her to walk or even stand, but it allowed her to keep the use of her hands and some range of motion in her arms. Of late, her hands now show the signs of the Rheumatism and she has gained enough weight from the steroids to have extreme difficulty moving her body. Her life is spent in one room, our world is spent in one room. Meals, bathing, infrequent visits from her friends, toilet duties. All carried out from her bed. I find this unacceptable and in her rare moments of clarity, usually after a 4am panic attack, she agrees. It's not fair to either of us, I need to have a life, she needs round the clock care. In these moments I literally feel weightless, like finally she is going to take responsibilty for herself, something she is loath to do. We make plans, she promises she will do as we've discussed, and I eventually crawl back to my bed and dream of a new life full of hope. Hours later, our pact is forgotten and once again, I am at fault for doing everything wrong. She will not go into a home, or a hospital. She will not allow carer's into the house and if I do, she will hate me forever for humiliating her. Humiliation is her new favourite word. Having to call am ambulance is humiliating, the prospect of being carried out the house, the neighbours possibly seeing her (for the first time in 6 years) is humiliating. The fact that I have to wash and dress her, attend to sensitive matters, feed her and try to make her as comfortable as possible whilst attempting to hold onto my job and my mind... well, what's that in the face of her humiliation.
Her friends have tried reasoning with her. She practically throws them out of the house in as much as she can. Every possible solution has been given to her by varied people and each one is dismissed. "Oh I'll do it in my own time", "There's no point making an appointment as I don't know what I'll feel like that day" and "Stop telling me what to do, you're making me ill" are stock phrases she uses to win each conversation. I understand why people give up on her, why would anyone go out of their way to help someone who refuses to help themselves? Every day is a constant battle to get her to do as much for herself as she can. Sometimes she tries, most often she doesn't. If I force her to do things for herself, I am a horrible person who is watching her suffer. If I run around lighting her cigarettes (she shouldn't be smoking at all but refuses to quit), making her tea and opening her paper, I am enabling her descent. Physically she has no fight left, her body has given up on her. Her mind is as sharp as ever and her tongue is positively barbed. Her inability to sit up in not caused by years of her apathy and refusal to strengthen her muscles, it is caused by my inability to plump a pillow. Her diet is not satisfactory to her because she refuses to eat the recommended foods and instead cries and accuses me of starving her if I don't give her cake. Everything bad in her world can be traced back to me.
In my stronger moments I see this as a classic case of deflection, she knows she is also at fault but if she admits this, her entire belief system will be shattered and she will have to accept that she is the victim of fate and her own poor decisions. That she has allowed her condition to deteriorate by not following the advice of her Consultants and GPs. Years ago, her refusal to follow their advice would lead to me sobbing, begging her to do as they said, if not for her then for me. She would scowl and say that if she wasn't prepared to do it for herself, then there was no way she would do it for anyone else. So now, I don't ask. My stronger self recognises that she refuses to accept responsibility and knows that I have done everything I could. Strong Me ignores her attempts to guilt me into doing things for her and stands up for myself.
Unfortunately, Strong Me has become an infrequent visitor and I now just cave in to her. Her condition is aggrevated by stress and she can instigate a panic attack at the drop of a hat. If I work too late or don't pay her enough attention, if I choose to go out (5 times this year so far - It is October!) or if I say something she doesn't like, it all leads to a panic attack and invariably a flare up both physically and emotionally. She doesn't like being left alone, she doesn't like company.... there is no way I can win. She cries because she is hungry, so I cook but she won't eat as it wasn't what she wanted. Don't ever ask her what she wants, she won't tell you. I feel like I'm expected to be psychic. If you ask her what she needs/wants, she says I'm harassing her. Don't ask and she's neglected. She likes knowing I'm the house, but gets annoyed when I'm in her room. She wants me have a life but doesn't want me to go out. It's a constant see-saw of wrong vs wrong and it's exhausting.
So now, I sit here, on day 2 of not being able to go to work or leave the house because she can't look after herself. Do I quit my job, which I love? It's the one place where I don't feel useless, my escape from reality. Do I become a full time carer to my Mother even though it's the last thing I want and will destroy the already fragile relationship? Do I push for a Care Home, which I think is the only option despite her telling me that she will kill herself if I do? It would mean selling the house, but it's got to be better for both of us. She says she doesn't want to be stuck in that room for the next 30 years which makes me believe that she expects me to look after her for the next 30 years.
Is it any wonder I feel like I've lost my mind?