XIV. Grasping for … Well, Candelabra

Emma parked her walker in the usual spot one recent morning, to the left of the credenza behind her dining chair at the head of the table, and instead of turning to her chair, overshot the dining table and headed for the corner. After much coaxing, I redirected her. On her way back, grasping the credenza, she grabbed the candelabra and then the candlestick holders. At least she didn’t bean me with one. Phew. She’s so afraid she’ll fall, she grabs onto everything in reach – bed quilts, candelabra, doorjambs…. Kind of like building your house on sand – nothing that will hold.

Emma is hard of hearing and belligerent. She thinks she knows best. And, true, sometimes she does, but she can’t communicate her reasons; I find out later. But, most of the time, she only thinks she knows best – and she tells me about it, vis-à-vis, “I’ll have you fired!” “Keep your fingers off me.” “You leave my walker alone!” She can talk when she wants to. Thank goodness that kind of talk doesn’t happen often. Although, now, she’s become combative at times. I’ve learned to stand back so when she swings, she won’t hit me. She sits in her chair next to the bed and grasps her bedpost with that firm grip only women of her generation can (accustomed to kneading dough, flattening it out with a rolling pin, rubbing laundry against a washboard, wielding a laundry iron made of iron, scrubbing the kitchen floor on hands and knees with a scrub brush, to name a few routine activities), so that her health care aides and I cannot get her arm into or out of her shirt. I try to pry her hand off and she swings at me. She is kinder to the aides.

Last night she made it to the table OK, but when she proceeded to eat the salad with baby arugula, she picked each arugula leaf out by the tip of its stem, as if lifting out a Southwest Florida lizard upside down by the tip of its tail, and placed it on her folded paper napkin beside her plate. At least she eats. I’ve been told that many dementia patients are more combative and ultimately, they stop eating and their bodies shut down. So, thankfully, we’re not there yet.

Her first major fall happened when I was helping her get out of the tub and she folded up and got wedged on the tile floor between the side of the tub and the front of the toilet. It was her birthday. Her legs and an arm were bent at odd angles. She could not get up on her own and I could not get her up. So I ran next door hoping to get my neighbor. She is strong and has had experience with these kinds of occurrences. But she wasn’t home. Her brother, however, in his early 40s, was. Stunned momentarily by my request, he rallied quickly and immediately helped. It was his indoctrination. He looked away as he helped her up. Emma was, of course, dressed appropriately for her birthday – in her birthday suit.

She experienced a major fall soon after that. This was about four years ago. She didn’t have her walker yet. Even then, though, she was grabbing onto furniture as she made her way around the house from one piece to the next. This time when she fell she hurt her arm. She couldn’t climb into her king size bed. I had to help her, but I couldn’t lift her. I called the wife of my lawn care guy to see if she knew anybody who could help me. I didn’t know whom else to ask. I thought possibly someone in their Mennonite congregation might do such work. She came right over herself, even though she lives 20 minutes away, has six children and it was dinnertime. She stayed for two hours while Emma finished her dinner and we got her undressed and into bed. She would not accept pay. (I did pay her something later on, though; I felt she helped us kindly, patiently, and cheerfully above and beyond the call of duty.) I placed a small stepstool beside Emma’s bed after that. She still uses it every night, although she can climb in the other side of the bed without it.

Somewhere around that time, I had a party, and a friend said to me, “You need help. You really need to get help with her.” I don’t know why I hadn’t thought of it. I thought I couldn’t, I suppose. But, then, I spent weeks calling various healthcare agencies and the state Division of Aging learning what was available, financially and healthcare-wise. Most agencies did not return my call. One agency, Bayada, jumped on the task, got an aide – the best aide I’ve had – right out to me and organized everything within our case. Medicare paid for this, since Emma was injured and required a physical therapist. The therapist gave her range of motion exercises. The aide bought a foot tub for Emma in which to wash her feet, applied body lotion, face cream, perfume and jewelry, all of which Emma would have done on her own had she been able. And Emma got a walker. Medicare paid for the walker. You get one such support instrument a year paid for by Medicare, it is my understanding.

Our time with Bayada was short. Once Emma’s therapy was finished, Medicare no longer paid for her aides. And Bayada was not a Medicaid-paid agency. Emma never thought she’d live this long, so she spent all her money. There was no way we could afford to pay an agency for her care. But with Bayada and her walker we were set on the right path. All I had to do was spend weeks making dozens of phone calls and hoping an agency would respond, and hours with the state Division of Aging and a Medicaid attorney learning about the Medicaid Waiver, the Miller Trust, and our options, signing papers and taking care of as many legalities as were necessary at the time. I already held power of attorney for Emma; that we had set up a few years before when she was still of sound mind but had forgotten to pay some bills.

Finally, we got signed up with a Medicaid-paid healthcare agency and got an aide who is very good and has been with us for two and a half years. In fact, if it weren’t for this wonderful aide, I wouldn’t be using the agency. I find their lack of communication and general thoughtlessness astounding. Maybe it’s just because I am old and things have changed; for it seems that most business entities slack off these days – yet get paid, nonetheless.

Two nights ago, Friday, July 1, at 7:40, as I was stirring my homemade spaghetti sauce with tomatoes and basil from the garden, a guy from this agency phoned me. “I just called to tell you,” he said, “that your aide will not be coming back. You’ve run out of Medicaid hours; that is, until October.”

That’s how you fire people: tell them at end of the day on Friday. Our aide had been with us faithfully, patiently and reliably for two and a half years.

–Samantha, July 3, 2011