What ‘Comfort Care’ means to us ~
Sleep, an insane amount of sleep – I mentioned in a previous post that my mother’s sleeping 18-20 hours a day. It’s hard to imagine, but she slept 28 hours between Tuesday morning and Wednesday afternoon. Her breathing was so shallow that I couldn’t see any chest movement. I had to accept the warmth of her skin as an indicator of life.
Eating is nearly impossible – Thursday, she was alert enough to say she was hungry. Well, she didn’t actually ‘say’ it, she nodded when I asked if she was hungry. She managed to eat a few ounces of oatmeal. I was impressed and praised her. It had been a while since she’d eaten. In the time it took me to go to the kitchen to get some juice, she had vomited every single oat. The trauma of vomiting put her back to sleep for about ten hours.
Drinking is hit or miss – She’s been drinking through straws for six months. (I recently found soft rubber straws, similar to tubing. Six straws come with two long-handle brushes.) If she doesn’t respond or tries to chew the straw, I have to use a syringe. Giving someone liquids one milliliter at a time is tedious. I received syringes with the liquid morphine and lorazepam, I also use them for Pedialyte, glucose, water, and warm tea. It dribbles into her mouth just enough to wet her tongue and gums. It takes about three full syringes before she reacts and swallows. Like I said – tedious.
Diapering is better and worse – No intake means no output. Yay, no crappy nappies! Right? Well, she’s dehydrated, so her urine is unpleasant, to put it nicely. More often than not, I change her in her sleep. She reflexively tenses her entire body, her legs defensively clamp shut, her arms flail and shake with Parkinson’s. I try to change her as fast as I can, I’ve become an old pro. Some days I don’t hear her voice until I roll her over and she moans, “Owwwww.”
Morphine is a necessary evil – I told her, two weeks ago today, that we were switching to ‘liquid medicine’ since she could no longer swallow tablets. Two weeks without her usual meds, some she’s taken for over a decade, has ranged from interesting to terrifying. Every symptom is met with morphine. Any sign of pain – morphine. Elevated blood pressure – morphine. Excessive shaking from Parkinson’s – morphine. I manage her diabetes with glucose gel mixed with Pedialyte; administered one milliliter at a time.
Conversation is non-existant – One or two words a day is a treat. A family friend visited this week. She held mom’s hand and talked nonstop for about fifteen minutes before mom looked at her, smiled and said hello. I can ask basic questions, but I have to ask repeatedly before I get a response; which ranges from a blink to a nod to a single mumbled word. I think she uttered her last, “I love you,” over a week ago.
The guilt of letting go – At first, I almost rejoiced. Almost. Her drug-induced slumber allows me to get out of the house. I can run more errands, go out to eat with friends, and see movies. Then the reality hit me that she could breathe her last breath while I was stuffing my face with chile rellenos. Despite everything I’ve sacrificed over the last four and a half years, or what I do for her day and night – if she dies alone I will never forgive myself.