Do I Keep Feeding the Empty Shell of my Mother?
The Living Will says no artificial feeding or hydration. Have I become her personal feeding tube?
They’re at the cusp of a new phase, Ma and her dementia, and I’m not sure where it’s going or what the next right thing is.
One of my retirement projects has been organizing photos into some orderly, searchable order. Trashing dupes, blurry photos, people I no longer recognize or care about. I’m reliving our families lives from sepia tones to digital editing. Our three childhoods, a pro-life march in Washington, birthdays, backyard parties, her gardens. Her boyfriend after my father died. The year in assisted living. And everything since she moved in with me.
It’s a virtual time lapse of Ma’s life slapping me in the face with how much has been lost. How much of what made her uniquely her—style, vanity, humor, flirtation, a desire to take every stray home to feed and fix them—is just gone. Forever.
These days, she frequently sleeps through a meal or falls asleep in the middle of one. For two nights in a row this week she slept through dinner, but woke at reasonable hours to use the commode (9pm, 11pm). I took advantage of her being upright, a chance to give her the evening meds along with some soup and a little pureed fruit.
It seemed the logical thing to do.
But, it didn’t feel good.
I was scraping scraps off a plate into a garbage disposal1, putting gas in a car, shoveling coal into a steam engine. Like stoking an inanimate object.
I hate that that imagery is in the forefront of my brain. But it’s the truth.
She’s never hungry, lost connection to that feeling long ago. Rarely thirsty. We feed and water her at appropriately scheduled times. Monitor her urine and bowel movements, give her MiraLAX and stewed prunes daily; suppositories, laxatives or Milk of Magnesia as needed.
She’s my biochemistry experiment, keeping her what? Healthy? Happy? No, keeping her in some sort of balance. Not dead, but not fully alive, either. I’m keeping her in Limbo.
How is this different than a feeding tube?
All her food is pureed within an inch of its life. She’s forgotten chewing, frequently forgets to swallow. I’ve fed baby squirrels via a syringe and cats via feeding tube, emulsifying food and administering it with a syringe into the piping.
Other than the spoon I use to feed Ma, where’s the difference?
Her living will is specific about the desire to withhold life-sustaining procedures—including feeding and hydration tubes— if she has a terminal illness or debilitating disease where she’s been declared incompetent. “I direct that this advanced directive be liberally construed.” She saw this coming. There are times I feel like I’m violating her codified wishes. I’ll have similar verbiage on my paperwork, currently being drawn up.
I’m keeping the body alive, but where is the person in all of this? Where is my person? Where is my Mommy in all of this, today?
She collapsed.
Twice this week, while walking with assistance, she crumbled. It’s harder and harder to get her to walk anywhere, even with the walker, even with help, even to the bedside commode. If and when we let that go, she’s officially bedbound.
It’s a step, the next step when she can’t step anymore. A step towards total dependence. Total nothingness. Muscles atrophy. Risk of bedsores and fractures increase. Life gets even smaller.
She’s not standing, either. We need her to stand (with assistance) to dry her after a shower, to wash her butt in the shower, pull up her pull-ups and pants, to get off the toilet or commode, to get out of the wheelchair and transfer to her bed.
I’ve picked her up out of the wheelchair when I had to. She doesn’t like it, but we’ve managed. Last night she hung on to the arms of the wheelchair, dragging it with her as I tried to move her into bed. More than inconvenient, things are getting dangerous. Someone is going to get hurt. Maybe more than one someone.
Now, imagine trying to pick her up off the commode. Her ass hits the arm, or she hangs onto it, like she did with the wheelchair. Piss and shit all over the rug, her, and me.
But, she’s not standing. She’s too afraid.
Fear. There’s something that dementia doesn’t take away. Fear. And confusion.
Fuck you, dementia.
I’ll sleep when I’m she’s dead
After two or three days of her waking up every two hours to escape, I started talking to hospice about two or three nights of respite2. She must have heard and understood on some level, that’s when she slept through a night, a day, another night, waking only to pee. I moved her to the commode, in her sleep. That’s when I decided on the surprise feeding.
It’s also when I started thinking of a hospice facility instead of a respite. More permanent, less nursing home. Two friends have done that with their mother when the time was right.
Is the time right?
I thought so yesterday and spent the afternoon researching, making calls, gathering information, trying to figure out how I was feeling about the whole thing. Guilty. Relieved. Just three days ago, I was researching respite care. I’m also setting up a trust in case I predecease her, and it’s costing a small fortune. Should I put that on hold? If she goes into a hospice facility, it’s not likely she’s coming out.
Is the time right?
I thought so yesterday. All the sleeping, the not standing, not walking..
Then this morning she woke up at 1:30 am. 3:30 am. 5:15 am and we’re back and I’m reminded of the time a few years ago when she slept for two weeks and we were ready to say our goodbyes.
5:15 am, she’s awake, if not aware. Engaging sometimes with us, sometimes with the invisibles. This morning she let me walk her into the bathroom without hesitating or stumbling. She stood in the shower so I could wash her, stood outside the tub so I could dry her butt, then promptly fell asleep in the middle of breakfast.
This is Limbo
She does this. Curls up to sleep at death’s door for two weeks, a month, three days, then stumbles away, half awake in the middle of the night, yelling, “Hello?!” A pink Spaldeen bouncing back and forth. She’s here. She’s there. She’s going wide and wild.
It just occurred to me that she has never had a sense of direction, so I shouldn’t be surprised that her decline is anything but a straight line.
She never asks for food. Rarely for something to drink. Is the time right to stop feeding her? Just give her liquids? I don’t know. I want someone to tell me what’s right and there is no someone. There is no guide book.
Is the time right?
It was yesterday.
Today, it’s not.
How the fuck do I know?
I want specific instructions, a how-to manual, that will leave me free of guilt and free of resentments.
I want magic.
Is the time right?
It’s the right time for magic.
Fuck prayers, send magic.
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Ironically, they used to call her “garbage belly” because she would eat all and everthing, then clean your plate off and never gain a pound.
Respite care in this situation involves the patient being transferred to a respite bed in a nursing home so the caregiver can get some rest.
A few thoughts: You have so earned a respite, and it might give you the clarity you seek about next steps. It doesn't sound like she'll have much awareness , even in a new place; or her response might be to recede into sleep.
Only you can decide when it's "time" to stop feeding her, but it might help to have someone else see what her 24-hour rhythm looks like. Given her written directive, will a hospice facility feed her if she's not asking for food...? You might want to clarify with them whether they follow your wishes or the letter of the directive.
If discontinuing food, I've read that it's best--less painful, more efficient--to discontinue fluids as well. It doesn't sound like she's experiencing hunger or thirst. My stepfather was lucid when he chose to stop eating, but he kept drinking, and that apparently just prolonged the end.
I am thinking of you and sending love and patience. <3
I truly feel for you and your situation as this is almost word for word what I experienced with my mom in the last months of her life. We had a long talk with Hospice and how we handled my mom's eating was to ask if she wanted food, to give her what she wanted until she was done and not to force food on her. We offered her sips throughout the day. She loved her Boost (choc flavored) and this is mostly what she subsisted on. Choking and aspirating food became a definite fear as her ability to swallow became less and less. It was hard at first as this was truly letting go of any idea that she was going to "get better". My younger brother (who had no involvement in her care) asked me if I was going to just starve her. But Hospice spoke with him and got him to understand. My husband also struggled with this and he was active in her care. But he's a fixer. From the time she stopped eating any significant amount in January, she lasted until May 3. I became comfortable giving her morphine to help with the fear and agitation she experienced. She became bed bound at this point as her brain stopped talking to her body and she couldn't walk, She also developed a form of rigidity and her whole body would go stiff. Caring for her in bed took 2 people. I opted out of respite care when my husband and I left to go visit my daughter. Between the Visiting Angels caregiver, Hospice and my older brother, they provided 24 hour care. Thank goodness my mother always slept through the night. She became very sweet in these last months and loved listening to music and being read to. I found books of hers that were from her childhood and she recognized them. Once I let go of the feeding issue, life with her became much easier. It was a hard journey to get there though.