I may get some flak for posting this. #notcaring. This is what living with this disease is like. It's not pretty. It's not Montel Williams' specials on having a hidden disease and some days he feels like crap, but mostly he feels fine. (He has MS, too, by the way.)
The public face of this disease is a minor inconvenience that comes and goes, that no one quite understands. No one wants to talk about the dark side, the horrible side, the brain that doesn't work, the body that's nearly paralyzed, the infections, the diapers, the catheters, the medications, the hospice, the life lived from a bedroom.
We don't talk about these things because they're not pretty, and it's hard to imagine ever dealing with something like this, or watching your loved ones suffering from a horrible disease, and there's nothing you can do to help.
Well, I'm tired of pretty pictures. This is the reality.
We have a lot of conversations on gratitude in my life. Being grateful for the ones around you, the things you have, the world you live in.
I understand that it's hard to see anything to be grateful for when you're suffering from a crippling, debilitating disease. I'm know that bitterness, frustration, and anger are only natural when the world as you know it ends. I have absolutely know idea how I'd react if my husband and daughter had to do everything for me, 100%, completely unable to turn my head without assistance. But I do know that I would be grateful that I had someone in my life who stuck by me all these years, and people putting their lives on hold to help me. I'd feel guilty as hell about it, but I'd be grateful for it.
Whether it's a byproduct of the disease, the medication, or just the result of being sick for so long, my mother has developed a habit of saying hurtful things. Vile comments, untrue accusations. Which she then denies when confronted about them.
Last week, while I was cooking her lunch, she accused me and my father of starving her. Not in the cute "oh, I'm so hungry, hurry up and cook, because I'm staaaarving!" kind of way. In the, "you never feed me, you just lock me in the bedroom, and starve me to death." (Which, is so UNTRUE, I can't even...) I came running downstairs afterward, in a teary rage, because how could she even SAY such a thing?
On phone calls to her sisters and mother, my mom will tell them that my father's not taking care of her properly, and her accusations range from physical abuse, to leaving her in diapers too long, to starving her and any number of other things. She'll tell them that I never come around, I'm ungrateful, I just take money from them and that's that. Understandably, (considering her sisters and mom only come to see her once, maybe twice, a year) they react with panic. They were even threatening to call elder-abuse agencies.
Until my cousin started coming to help out, saw for herself that this was NOT an abusive situation, that she's waited on hand-and-foot, has amazing care, and is in no way abused. This helped ease the family's mind.
I'm under no delusions that her care is perfect 100% of the time. No one is perfect. My dad does the absolute best that he can, and I know that to be true because I'm there to witness it. Even the nurses and CNAs who come in from the hospice agency comment on how well he takes care of her. (Actually, their concern is starting to extend to my father reaching the point of exhaustion and needing to take better care of himself, too...)
But for my mom, anything less than 100% perfection is unacceptable. She accused my father of leaving her locked in her room. You know what his crime was? He'd sat in her room with her for hours on end, chatting and watching TV. And then had the audacity to step across the hall and use the bathroom. He was gone for 5 minutes (or however long it takes, I really don't time things like that...). But it was too long.
Yesterday, she accused my cousin of stealing. My cousin is a truly amazing woman who I'm so grateful for. She regularly leaves her home out of state and flies down to stay with us for weeks at a time to help out. She also helps organize things around the house. This past visit, her mission was a large bookcase which had been filled to capacity with papers, books, photo albums, knicknacks etc. She has so much more patience than I do, she brought each item, individually, to my mom's room, held it up for her, and asked if it was a "keep" or a "donate". She was much more respectful and cautious than I would have been.
And my mom accused her of carrying things off, stealing from her, and compared her to a despicable con-artist who took advantage of my family awhile back. When I asked my mom about it, she denied everything, put on an innocent look, and said "I just don't know what (cousin) is talking about!" Which is generally her reaction whenever she's confronted with the reality of the accusations she makes.
It scares me. It really does. I don't know if it's the medication, or the disease, or she's just truly so bitter at having this disease that she's forgotten how to treat people well. I don't know if she realizes that she gets a lot of focus and attention when she says these things. But if she says them to the wrong person, we all could get in a lot of trouble, and her uncaring words could have very serious consequences.
Consequences besides breaking the hearts of her family members.