Soapbox By Kay

When Do You Know It’s Time?

Photo from longtermhomecare flickr

My mother’s mother passed away when Mom was only 11. My mother’s father and my father’s mother passed away within months of each other when I was 4. Dad’s dad lived into his 90’s, but under the care of Dad’s oldest sister, hundreds of miles away from where we lived. I vaguely remember visiting Mom’s Grandma Pepper in a nursing home in Louisiana when I was 4 or 5, and maybe a couple of years later, too. She lived well into her 90’s as well, and at one point one of her sons went to live at the same nursing home.

I don’t have any model or template for what I’m supposed to do or when I’m supposed to do it. When I volunteered with hospice, I did respite visits with a woman with Alzheimer’s who had a live-in caregiver, paid for out of the reserved funds she and her husband had accumulated over their lifetimes. Her grown sons lived in the area, but they visited infrequently, having had a somewhat strained relationship with her their entire lives. They were more than happy to give her care over to a paid caregiver and felt their responsibility was adequately discharged through their management of her assets for her care.

Mom doesn’t have any assets. The small amount of savings she had was wiped out with her hospitalization and rehab care last spring. She receives her Social Security check every month, which covers her medicines, the home health aide bath visits, and the Adult Daycare tuition, part of which is covered by the center’s scholarship fund. There are no monies for a live-in care giver, or even for the bath lady to come more often. The really nice assisted living/nursing homes are upwards of $3000 per month, and they don’t accept Medicaid, which Mother doesn’t even qualify for unless/until she actually enters a nursing home.

Sophie, our newest addition to the household, continues to pee in the kitchen, in a very specific area. Mother does not, and has not for the past 3+ years, followed my request that she visit the bathroom BEFORE she goes into the kitchen to take her medicine. The area where Sophie pees is the pathway Mother takes from the dining table to the bathroom after taking her meds. This morning, there was a puddle MUCH larger than Sophie would ever be capable of making. Sometimes Mother realizes that she’s had an accident and I find a tortured hand towel thrown in the corner in her bathroom. This morning, evidently, she didn’t realize that she had done so, and then proceeded to walk through it more than once. Sophie managed to pee outside all day yesterday, but before I could get Mom’s puddle cleaned up this morning, Sophie had added one of her own. I know she’s just trying to fit into the pack, peeing where everyone else pees. It’s really hard to get mad at her when that area of the kitchen floor evidently smells exactly like a doggie urinal.

Yet again, I asked Mom to PLEASE go to the bathroom BEFORE she takes her medicine. And again, she agreed. She always agrees. And then she always walks right past the bathroom to the dining room to take her morning meds, often leaving a tell-tale trail that I don’t even notice by the time that I get home because she’s either wiped it up (e.g. smeared it around) or been totally oblivious to it and it has just dried on its own through the course of the day. But while I may not realize it’s there, Sophie totally does.

My cousins, Mom’s sister’s daughters, placed my aunt in a nursing facility when they realized she had stopped bathing. Mom hasn’t bathed herself in over 7 years (I don’t know how much longer than that it has been, because she only came to live with me 7 years ago and she hadn’t been bathing for awhile by then). When she would never agree to shower time with me, I finally hired someone to come in, and Mom has adjusted to that routine. But my aunt also had a lot of other health issues, including being on oxygen for advanced emphysema/COPD. Mom, on the other hand, is very healthy for her age, her only issues really being her balance (she uses a walker now, mostly), moderate dementia, incontinence, and regular episodes of enuresis.

I read about people caring for their loved ones in advanced stages of illness, spoon-feeding them, toileting them or even changing their diapers, giving them sponge baths, and generally providing intensive long-term care in the home. But I haven’t had that kind of model and I’m not sure just where my turning point is. We’ve made adjustments for bedwetting, with extra pads and underpads and several sets of sheets, but if I don’t check, she won’t tell me. She just leaves the covers turned back so the bed will dry out before she goes back to sleep in it the next night. It’s evidently not a problem for her. And the big puddles on the floor are not a problem for her. And her falling sometimes because she doesn’t always use her walker the way she should are not a problem for her. But these are all adding up to a problem for me. Does anyone ever know which straw is the last one before its added on top?