I thought watching my youngest sister die of breast cancer was the worst. It was long, and slow, and for almost 4 months the sisters and two infants shared a tiny apartment with her wonderful husband. We cooked and made organic carrot and apple juice when eating was too hard, hauled her to appointments, teased her about her Lyle Lovett hairline, gathered on her bed for evening music sessions. It was laundry, and housekeeping, and finding a doctor of Chinese medicine who helped keep her comfortable. It was baby care, walking in the evening with strollers or slings in the oppressive heat of Metarie. It was healing sessions, using crystals to focus healing energy to her body. It was hours of talking about childhood, about who we were then and who we were becoming. It was crying when she said one night "They cut me, they poisoned me, they burned me, and I'm still dying of cancer."
I'll never forget walking down the stairs behind her, on the way to the pool for some coolness, seeing her towel slip down and figuring out that the swelling across her low back was a tumor. That was still 3 months out, it was the first time I got it that this was serious, that they weren't lying about cancer spreading through her body.
It was the helplessness of the oldest child faced with her profound inability to change this fucking nightmare, the fight, the internal mantra "You will not die, I will not allow you to die." and the call to Hospice that was an admission of defeat. It was a body bag leaving the house. I still want to scream when I remember that moment.
We nursed her, Hospice nurses taught us about morphine and how to use it to reduce her pain, ice chips, and glycerin for her lips. We found out that putting her in the hospital at the end would only keep her alive long enough for the pain to become unbearable.
She ran a fever the last two weeks, the tumors in her brain impacted her heat-regulating system so we didn't have the cold extremities cues to let us know how close to the end we were.
She died at age 37, fighting for life, leaving a loving husband and a terrified 12 year old daughter. (Eleanor got married a few months ago. She's lovely, graceful, with so many of her mom's mannerisms it's startling to walk into a room when she's talking.)
It was actually not a bad death. It was comforting to me to see her come out of a comatose state and start murmuring to someone we couldn't see, to see her listen and nod, smile, then fall back into unconsciousness. I felt absolutely certain that she wasn't making this transition alone, and that she wasn't afraid. I was. I couldn't imagine living in a world without her, without her joy, her grace, her wicked wit, her flair for Thrift Store fashion and decorating.
This is worse. Mom is almost 87. Her physical body is amazingly healthy although there's a problem with her heart, which periodically just slows down. We called hospice in when the EMS people recommended a heart cath. We knew how scared she'd be, how confused. We had the directives. Her blood pressure plummets suddenly, every couple of months. We give her painkillers and oxygen to comfort her. So far she's bounced back.
The hideous problem is in her brain, the brain that no longer remembers who we are, that she had 7 children, that she was married for 60 years and 23 days, that she's an accomplished musician, a seamstress, a lover of beauty. I knew she was completely gone when she didn't recognize her maiden name from the Family Reunion T-Shirt I put on. Her pride in her heritage was something I never thought could leave. A body blow.
I used to be able to follow her. If she started a sentence I could finish it fairly accurately, or at least track down what she was aiming for. Now there are only 2 words before the gibberish starts. I have no idea what she wants to tell me. Words are gone, and maybe even the notion of communicating is gone.
We cared for her at home until Sept of 2010. It was two hard years for Carole and me, 2 years of working part-time, organizing schedules so she was never alone, having to be fully present every moment because anything less made her irritable. She was a toddler then, with increasingly limited communication skills, a fussy appetite, and that center of the Universe conviction that demands all the available attention. Exhausting.
Oddly enough, as long as she could help with dishes we could keep her at home. Once she lost that her frustration and irritability grew exponentially. It was so hard to watch her, to listen to the dialogue she whispered as she moved around the room. "I can't do anything right, I'm so stupid. I don't know what to do, what am I supposed to do?" "No one's telling me." "Stupid stupid stupid." "No one's helping me. They hate me." It was wrenching that her only coherent sentences were self-denigrating.
It took a few weeks to understand that her competence, her ability to run a complex household, cook for 9 on a lousy budget, keep us clean and dressed and comfortable, play the organ, direct the choir, give piano lessons to supplement the household, all of these tasks and jobs and skills that defined her had been gradually stripped away. The fact that she couldn't figure out how to dry the dishes and stack them for putting away later was the last loss of functionality. We showered her, dressed her, supervised tooth brushing and hair brushing, prompted her when she forgot to finish her meal. We talked to her, took her out with us to run errands until that got overwhelming for her. She had nothing anymore, even organizing stacks of paper made no sense to her.
She hated being dependent on us, and could not accept that we didn't want her to do anything, we just wanted to be with her. She had no more value in her own eyes, and her agitation controlled the household. We weren't helping her (How?), we hated her, and that was daily life.
We moved her into a care home, a private residence with 2 other elderly women. We'd used this place for a year Saturday night through Sunday afternoon. Liturgical musicians work weekends, and it wasn't fair for our remaining sister to have the full load on her only days off. Mom knew the place, kind of recognized the people, and calmed down considerably.
I can't visit her often. I'll never forgive myself for this, probably, but I just don't want to watch any more. Being her caregiver was the most difficult job I've ever taken on, not because of the work or time or effort but because of losing another piece of my mom almost daily. Everything's gone. Mom is gone, has been gone for a long time. There's this body left, but the life, the intelligence, the sense of humor, the music, the skills - gone. I think the people who watch dementia's progress live a schizophrenic life, one where you interact with a body that looks right as you're grieving the loss of a loved one.
At first I thought she'd be happier to see us, but after 15 minutes she's agitated, there's something she's supposed to do and she's angry because she doesn't know what it is, or how to do it. I leave and I think I can't do this again, but the guilt builds and I go again, and we wander and I try to talk to someone who makes no sense anymore, and then she paces and frets and I leave, filled with helplessness and grief and anger that she's living this life, which isn't life at all.
I want my mom.
Updated by I love OCD at Tue Feb 22, 2011, 02:46:10 PM
I have to leave for a while - I have a must-do therapy appointment scheduled (not that I need it or anything.) Thanks to everyone for reading and commenting and recing. I've been laughing and crying and aching and warm and fuzzy, feeling so connected to this amazing place and its remarkable people.