The process of dying can be messy, on all kinds of levels.
I think it fair to say that, everything being equal, Mom and I have been blessed on this journey. But it’s had its challenges, as well.
It was exceedingly difficult for Mom & me to switch roles. She had always been the caregiver; I admit that I often accepted the role of care receiver, even in my adulthood. She shared her caregiving freely, with family and friends. With her diagnosis, though, I became the primary caregiver. The hospice nurse warned that nurses were the worst patients, and I now see that.
Mom not only rebuffed attempts to care for her; despite her diagnosis she insisted on caring for me – cooking, cleaning, doing laundry including hanging out clothes, being quiet so I could work, trying to make my stay as pleasant as it could be. God help me if I suggested I could help her do something that she felt competent to do, even when she was substantially weakened. It caused a bit of conflict; she resented what she termed my “hovering”; I just wanted to keep her safe and comfortable. I finally decided to use a risk/benefit test. If the risk outweighed the benefit to her, I’d insist on my way. If the benefit – even emotional benefit (especially related to her need for independence) – outweighed the risk, I didn’t put up a fight. So she hung out our clean clothes, even though I knew it exhausted her. She made her bread, and I made myself available only if she needed strength to knead the dough. She showered alone, although in the recent past I waited in the bathroom.
Twice I drew a line in the sand. Since December, Mom has suffered with a significant but intermittent pain in her right leg. Rest & Advil generally took care of it, but sometimes she found it difficult to walk. The first sand-line was a Friday evening when Mom called me from her bedroom. I rushed from the living area, expecting her to be somehow incapacitated, and found her perched at the top of pull-down stairs to the attic. She’d found the box she was looking for and simply wanted to hand it to me. I lost it. “What on earth are you doing up there?” I asked with a very agitated voice. “Well, I needed this, and I knew where it was, and I knew you didn’t,” Mom replied. Visions of her leg problem inhibiting her coming down, or her collapsing up there, or her falling from the attic danced through my mind. I got her down, and told her firmly she was never, ever to do that again. She got huffy, and told me that she was always careful, and that I shouldn’t hover so much. We had a silent standoff for a bit, and finally talked about it. I told her of my concerns, and that I didn’t really ask much of her, and that I was disappointed she’d not asked me for help. She responded that she knew I would be irritated and didn’t ask for help because she knew I wouldn’t let her do it. Utlimately, I think we both understood where the other was coming from. We cried, acknowledging that the situation was difficult for the both of us. And she promised not to do that again. She didn’t.
The other line-draw was the night she set fire to her mattress. She’d have occasional leg cramps, and would heat a towel in the microwave oven for a minute, then wrap the warm towel around her cramped leg. She’d been doing this for 15 years. But on this given night, while I was sound asleep, she heated the towel, decided it wasn’t working quickly enough, so reheated it. Smarter minds than I could better explain the science of microwave heating, but suffice it to say that on the 2nd heating, the inside of the rolled up towel overheated. She wrapped the outside of the towel around her leg, in bed, and felt it was too warm. She threw it off, exposing the overheated center to air and thus flame. She did not awaken me, but took the burning towel into the sink in the bathroom, dousing the flames with water. Thankfully, she was uninjured.
I awakened the next morning smelling a strong odor of smoke, but could not figure out the source. Earlier than she usually arose, I heard her sheepishly call to me. I saw the burned sheet, blanket, pillow that she used for her leg, mattress pad. In her bathroom, in the sink, was the very-charred towel. And oh, yeah, she hadn’t turned off the water all the way in the sink, so the carpeted floor was soaked. It took a while to rid the house of the odor. With the help of insurance, we replaced the mattress and all the bedclothes and pillow, and she swore off heating towels in microwaves. After that, she’d call me when she had a cramp, and we’d use a heating pad.
Mom’s role change to care receiver, I think, has been her most difficult adjustment, one that she still doesn’t accept graciously even though wholly bed-bound. It has presented challenges, big and small, throughout these last months. But through the process we’ve gotten to know each other better, and my admiration for her stamina, energy, perseverance, and yep, even her stubbornness, continues to grow.