It ain’t all idyllic, part 2

Don reminded me yesterday that I have a few posts titled part 1. I know that, and have plans for part 2s (and sometimes more), when the time is right. I’m proving it now.

Mom continues on. She’s now Bonus Day 10 – beating the doctor’s outside estimate by over a week. The good thing is there is virtually no pain. The bad thing is that there is no quality of life. The good thing or bad thing, depending on your view, is that she’s alert and oriented — well, at least those very few minutes in total every day that she’s awake. I don’t know which side I come down on.

Monday was Mom’s last day of hint of independence. Since then, Mom’s had to suffer the loss of her immense personal pride and modesty, and the indignities of my taking care of her every need. Since Monday, she has been bed bound, unable to eat at her table or her living room comfort chair. Monday was the last day she could get to the bathroom and shower, wash herself and brush her teeth. Monday was the last day she was able to use her own toilet. When her hospice nurse observed how unsteady she was, she insisted on having Mom use a portable commode, and even helped me get it from the attic (remember the pull-down stairs?).

Mom’s not a happy camper about this turn of events. Mom hated being fed. She asked for oatmeal on Monday, then insisted she could join me in the main living area. We talked about why she couldn’t, I brought the oatmeal to her, and she permitted me to feed her the 3 spoonfuls she was interested in. That evening, she wanted a graham cracker & milk, but ate that in bed, as well. She was still able to reach her nightstand, though, and drink the ever-present water (with bendable straw) on her own. Tuesday she requested a bagel in the morning (blueberry with cream cheese). I tore the 1/2 bagel into small bite-sized pieces and fed them to her. She ate maybe 1/4 of the 1/2 bagel. That afternoon, she asked for another bagel (everything with butter). This time she insisted on my putting the plate on her chest, not tearing up the pieces, and her feeding herself. That bagel was her last solid food, and she fed herself. Wednesday was the last day she was able to reach her water by her bed, and refused my offers to give her drink.

It’s common at end of life that the person loses hunger, then thirst. I wonder if Mom’s loss of desire also had something to do with her loss of independence.

She also hates the portable commode. She initially blamed the hard seat, until I pointed out that I’d taken the soft, cushy seat from her regular toilet and put it on the portable commode. She then fell back on the “I don’t see why I can’t do it” argument. We discussed why she couldn’t – that she was too weak, that a fall may lead to serious consequences, including my not being able to get her to to a trip to the hospital for a broken bone. Sometimes I’d have to use reverse psychology, noting that if she were taking care of me, she’d insist on the same thing. But I know she hates to her core the need for me to assist her.

We’ve also had issues with her attempting to reach the commode by herself. A few nights ago, I was awakened 3x by the sound of her getting out of bed. Each time I explained that that was dangerous, asked her to call me, and showed her the bedside bell. Her pride, though, outweighed concern for her personal safety. Hospice provided me with an alarm that I could attach to her nightgown, which alerted me if she tried to get up. We used it Wednesday night, and it worked perfectly. But the alarm was emotionally devastating to her, so we ceased use resulting from a compromise that if she didn’t try to get out of bed, I wouldn’t use the alarm. We’ve both honored our respective promises.

Throughout her nursing career, raising her family, and nursing her husband, she’s tended to personal needs like this thousands of times. Why, then, is it so difficult and painful for her to accept the same attention?

Now she’s subsisting on ice chips, and her (relatively) enthusiastic “ummm, VERY good,” is an indication that ice chips are her sole remaining pleasure. In these few final days and hours, I wonder if it would be more of a blessing to her that she not know what she’s lost.