Gangrene and the Perfect Shell

The gangrene.

The leg.

My mother’s leg.

The dying left one.

Most visits to her house, I am alone there with her aide, and I have helped to change the dressings on bedsores. To roll my mother toward me, reassure her that she is not falling while she clings to the railing of her hospital bed.

But rarely do my visits coincide with her nurse who comes in 3-4 times a week to change her leg dressings–until yesterday.

The leg.

  When I visit it has always been neatly bandaged–concealed. The last time I actually witnessed this merciless progression of decay, was before the nurses began bandaging her toes–the flesh of her big toe had been hanging off in a strip.

At the beginning of this new odyssey of a dying limb due to no blood flow to extremities, it was just an open sore on top of her foot. Though one deeply infected, and she was hospitalized for five days on IV antibiotics.

Amputation involving a 96-year-old was certainly not an option. The only option was to slow the progression by sending her home for life with powerful oral antibiotics.

And her doctor had been frank with me. “It will progress.”

Prognosis: eventually the gangrene will take her. She will succumb out of pure weakness.

Except for having noticed that the bandaging has been extended farther up her leg as well as now binding her toes, I have been blessed with not having to actually see the progression.
Until this coincidental visit: “Well it’s good you’re here,” her nurse says as he snaps on vinyl gloves.

“So you can see exactly what is going on.”

Exactly what is going on.

I’d planned on leaving the room, and now realize that was not only cowardly but neglectful; I am her daughter.

He began to cut open the bandages with small metal scissors. Cut up the length of the bandage.

He began to gently pull it open. Unwrap the packaged leg.

And there it was: the toes. Now completely blackened. The toenails–at odd angles as if glued on. Stark white contrast against the charcoal-dead skin. The opaque white of dried sand crabs she and I used to find on our beach combing expeditions. When we were always searching out the imperfect shells, of far more interest in their surprises of sharp angles, odd shapes.

No perfection here. And now I am longing for perfect shells.

The black of her toes extends up her foot. Up her leg. Almost to knee. Speckled, tar-like now….

The nurse takes out a disposable paper ruler. To measure the blackness. The blackened.

He seems pleased. “It’s progressed a bit, but not too bad.”

Not too bad.

My mother’ s aide has snapped on those vinyl gloves as well; she is used to helping. There is a method and a rhythm to this wound redressing; she holds up the leg so the nurse can cleanse her blackened heel.

I sit stone still in a wooden chair.

The light is bright coming in the windows. Icy-white reflecting off the frozen snow from my mother’s deck. Where summers, she used to have breakfast every morning in her lounge chair to read the paper. To look up at the trees. A deck she no longer recognizes.

Icy-white light now too garish. Brazen. On the blackened heel.

And my mother began to wail.

“This is new,” the nurse says. She does not evidently usually wail with the wound changes, the nurse said.

And he is the most careful of nurses.

But with these wound re-dressings, my mother is not aways blessed with the same careful nurse. The previous nurse had not followed directives in chart, to not use gauze; gauze becomes embedded in the sores and then must be carefully peeled away without peeling away the skin as well. The pain of even dead skin being peeled away…

I want to look away. Out at the bare crooked cherry trees in her yard. But in their own crookedness, contortion, I only see reflected back at me my own agony.

I make myself stay in this moment. With my mother. I rub her shoulder. I tell her it’s almost over.

“Don’t,” she said. “Don’t touch me. I’m done, done, done!”

Truth is, this process is a long one: saline cleansing of sores. Then application of the anti-fungal meds that effectively dry up the sores if not heal. No hope of healing. He applies the preferred nonstick plastic-coated Tefla pads; he arranges them carefully, a well-orchestrated patchwork, around her foot, toes and lower her leg, then wraps it all securely with the gauze.

And my mother. Exhausted, falls into a deep sleep. Mouth open. Breathing hard.

He peels off gloves. “We may be getting there.”

Meaning needing to administer morphine before dressing changes.

The morphine. The emergency box. Kept in fridge. The little bottle with the tiny syringe. Until needed. Morphine which does not give her rest. But rockets her off into a mental state of true wailing, not from pain but from complete and utter disorientation.

Her aide peels off her own gloves. She leaves the room. I know how she feels about the morphine. She’s been down this road before. And she knows best my mother now. Her good and bad moments, her capacity for joy. Not joy exactly…maybe there is not a word for these end-of-life moments. Maybe more a metaphor; the finding of an interesting shell along the beach.

“Let’s see how it goes next time,” the nurse says to me. “Then you can let me know what you want to do.”

What I want to do.

He leaves.

They had rolled my mother onto her side to relieve pressure from her tail bone.

She lays with her hands folded up near her chin. She actually looks comfortable which most of the time she isn’t.

I don’t wake her to say goodbye. I dare not even kiss her on her forehead. Because this appears to be real sleep; often she may lay there, even snoring a bit, but she is not sleeping. Behind her closed eyes she is stressing whether she is up for the “trip,” or  what to do with “all her houses,” and she is so tired from moving from place to place to place…

Now she sleeps. I am relieved.

Relieved.

And in my heart I now seek out the perfect shells. The ones her grandchildren liked to find when she would go beach combing with them, and they’d fill plastic bags with shells to string into necklaces: shells

  beach

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In The Listening

“You sound down.”

My mother. I’m calling her.

You sound down.

She has always been able to hear when there is sadness in my voice.

“What is it, Sandy?”

And then I start to cry. I cry on the phone to my mom who is suddenly fully my mom; she is oriented. She knows where she is. She knows she’s in her bedroom of the house she’s lived in for 30 years. She recognizes the desk opposite her bed. Maybe even the painting above her bureau. Her own painting. An abstract, of the ocean. One that resonates. Of her. Of my mom:

DuneShadow

The day before when I had visited, she had been sitting up in her bed. Now a hospital one.  Staring blankly.

She had turned to look at me. To stare. Unblinking.

“It’s me, Mom.” I laughed taking off my glasses. New ones. “See? It’s me.”

Her stare, unwavering. Steady. “I know it’s you,” she said, though I wondered about the “me.”

“It’s Sandy.”

Her aide had raised the head of her hospital bed because she must remain sitting upright after meals due to swallowing issues.

After 20 minutes, she was tired, and her aide lowered back down the bed. Donning vinyl gloves, we changed her bandages on tailbone bed sores, and on her left hip where artificial replacement is beginning to protrude. Rolling her to one side so that she clung to the bed rail. Afraid of falling.

We settled her. A pillow between her legs to support her bandaged left leg – the one slowly dying of gangrene.

But that railing. She wouldn’t,  couldn’t let go.

“It’s ok, Mom,” I soothed. “You’re not going to fall.”

“Let her be,” her aide whispered. “It makes her feel safer.”

My mother clung. Shaky hands, a tangle of tiny veins, pale shell nails.

Then I put on a CD. Opera. Pavarotti. She always has loved opera. She would blast it in her studio while painting. On large canvasses she stretched herself. Expansive brush strokes.

“Louder. Turn it up,” she said.

I like to believe the volume cleared her room of all mental confusion. Of her torment in the relentless attempt to piece together thoughts increasingly too jagged to assemble into the…logical. Into the well-reasoned.

And that her room was cleared of the unsafe – the chronic panic of trying to get back home because you no longer recognize the familiar. That truly perilous insecurity so acutely ingrained in the gritty of dementia.

And so her room was aired out, allowing only for the listening. And perhaps the sensory; she loosened the grip on the railing. To delicately run her frail fingers back and forth along the cold metal.

She reached a hand out toward me.

I reached to her. “Oh, she said, not having realized I was there. “I thought you were the cat.”

And so this next night, on this phone call I cry and cry to her. Because in her own reorientation, I lose my own.

And because, unlike in the past, I cannot tell her what is wrong. What has been going on all around her in her house of 30 years. Beginning with a leaking expansion tank whose steam mushroomed mold through, not only her basement, but upper levels; the environmentalist found very high mold counts even in attic. I could not tell her about the men in white hazmat suits trekking through her house. Clearing out all closets to find more mold. Tearing down walls. Emptying out her own closet which she would not remember, but at the time oddly she didn’t seem to think odd. And now I can’t cry to her about my battles as her POA with her insurance company.

And I can’t tell her the reason I finally can’t stop crying. Because having, if only for a moment, her back, so fully as my mom, is utterly wrenching. Truly devastating.

As if we were still what we’d always been.

Which we are not.

I cry and cry.

“Oh Honey, please don’t,” as only a mother can plead, when her own child is hurting and she doesn’t know how to help. “ This too will pass,” she says. “There’s the good then the bad, then the good…”

I’m staring at the wall. “I’m okay.”

And then she is expressing some discomfort and I know she needs rotating. “I’m going to have to go,” she says, and I hear her aide coming in to rearrange her as she is too weak to rearrange herself.

“I love you so, so, so much.”  Oriented or not, we chant this phrase to each other now regularly, like a prayer.

We hang up.

And I take a long bath. I submerge my head enough so that I can hear the water. The way I imagine dolphins can hear; intelligent creatures, but perhaps better than us in communicating through the sensory. And I listen.

 

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Few Words

“I smell fish.”

Conversations with my mother, desert sands blowing in light winds this way and that: “Fish?”

I’m making my daily phone call to my mother. Sometimes more than daily when I’m especially missing her.

“Something’s fishy.”

She’s been saying this for days. There is no fish in her house. She has swallowing issues since her stroke so no longer even eats fish. She  drinks her “nectar consistency” meals of smoothies and soups, thickened with “Thick-It.” Which sticks to the roof of her mouth so her aide uses what she calls “lollipops,” little red square gauze things, to clean out her mouth.

“Maybe it’s the cat food, ” I say. The cats only will  eat fish cat food.

“The what?”

I change the subject: “Any cardinals out your window?” I know she’s sitting up now in the wheelchair beside her bed, facing her backyard.

Mom: “Any what?”

“Birds. Maybe your feeder is empty. I’ll fill it when I come.”

She has always kept the feeder full with sunflower seeds. Now she doesn’t notice. Or maybe in all painful honesty, just doesn’t care to notice.

“Where are you?” she asks. “Home. At home. With the boys. Your grandsons.”

Silence.

If she doesn’t ask “Where are you?” she may ask: “So what’s new?”

The perfect generic question uttered by a person who no longer recognizes her own home or doesn’t always remember that her daughter is married with two children; sometimes I’m still on college. Maybe even high school, and she can ask about my “studies.”

So I ramble. About her grandsons. The dog. The hole in the ceiling where they had to repair leaking pipes from the upstairs bathroom. I tell her about the dog throwing up tin foil.

I ramble as I can when I visit her in the home she’s lived in for thirty years, and I pull down one rail on her hospital bed so I can lay my head beside her. Or if she’s sleeping so deeply she can’t be woken,  I lay my hand on her thin veined one–beautiful somehow,  in an inexplicable way, as only can be the delicate and withering. I lie close enough so that her breath is a welcomed breeze through my hair.

My mother can be up nights crying because she thinks my wedding has been cancelled and that I am heartbroken. So now I’ve put up photos from our wedding from thirteen years ago. I pulled out pictures of her grandchildren so that her aide, at 2 am, can show her, when she is not convinced that I am not heartbroken, that I have been married for thirteen years. And that I have children.

Last time my mother was in the hospital, I was only allowed in to her room wearing a paper yellow gown and gloves; she’d developed the highly infectious MRSA due to open infected sores because of very limited blood flow to her legs– completely blocked femur arteries.

One day when I walked into the room, donned in my antibacterial outfit,  she was crying.  “Oh, oh,” she sobbed.  “I thought you were dead.”

Then later: “Be sure to give me all the keys before we go.”

“What keys?”

“I don’t know. to all the trunks and suitcases…”

My husband says I wail and scream in my sleep. I don’t hear myself. But my dreams are vivid and repetitive: I am always packing, or trying to pack: either stuffing things into paper bags that rip, or I don’t have enough suitcases to hold everything, and I’m always in a rush, state of panic. Trying to get off a boat as it is sinking, hide from a tornado, or check in before my room is taken and I have to sleep in the dining hall full of beds, some kind of evacuation center.

We can analyze our dreams to eternity. I’m not interested in that. But I would like to quell the panic. I would like peace. But peace will not come with my mother’s death–I will be down on my knees. My head pressed against a hard wood floor.

Anyway, as her health care proxy, back at the hospital, I had been faced with two choices: invasive arterial grafting surgery or amputation of her leg.

And with such choices emerged the crazy side of the grieving daughter,  screaming, begging, for a far more rational alternative for a 96-year-old woman.

Which is antibiotics for life, and anti-fungal topical meds as new sores emerge, to keep infection at bay for as long as possible. Daily wound dressings by home nursing care.

Another phone call: “I bought new glasses,” I tell her. “They’re different. I needed a new look.”

“Oh thank you.”

“No, I mean glasses. for me.  I needed new eye glasses.”

“Oh.”

Then this: “I have to go. I can’t sit like this anymore,” she said.

And I text her aide that she needs to be rotated.

Last time I was there, I helped her aide rotate her – my mother is too weak to roll over. Bed sores. And we had to pull back the blankets and change her Depends.

And I saw her. I saw my mother – her bones. Since her stroke she has lost weight. A lot. She is on that “nectar” diet. Protein, yes. Calories, not so much.

Because she has no fat left on her bones yes, she cannot stay in one position too long as nothing left to cushion her bones.

Her bones.

“I should’t complain. This too shall pass,” she still can say.

This too shall pass. She has been saying that to me all her life. Always during hard times.

One time as I lay beside her, back in her bedroom where she now is confined to that hospital bed, she said what she has said to me many times before: “You are a most satisfying daughter.”

“And you’re my best friend,” I tell her back.

We have in recent weeks told each other how we love each other “so, so, so ” much.

And she can still call me “Honey Bun.” Reaching out that thin veined hand to pat my head. “Go get some rest.”

Quality of life. When does one know if there is none left? When do you stop making her get out of bed to sit up after eating so she doesn’t choke?

Hallucinations: She saw a boy in orange. Then an array of flowers going by. And a row of figures. Someone swimming around the corner. A blue man on the ceiling.

But there are still her pearls of wisdom: “Be brave.”

“Go live it up!”

“Be sure to giggle. Giggling is so important.”

My own words, never mind of wisdom, are few. I am often left speechless. Unable to write. So today I took a picture instead. Of something close up. An image. The tangible. Of a lone feather: Unedited as are my emotions.

feather

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Skulls Blowing in the Wind

I used to hold faithfully here to my “Tale Tuesdays”. And I still have so many tales to tell.  The telling has become painful. I no longer seem able to keep much distance from the “scenes” that have been my inspiration for so much of my blogging. But  after some wine, plugged into Pandora, I find myself buffered enough to write. I will persevere. To do just that: write.

Post Halloween, there were plastic skulls blowing around on my front porch:

skulls

Windy but not too cold, I sat in our weathered rocker, sipping a glass of wine. Our  trees  looked different–not just because of the change of seasons, amplified crimson leaves. But because my life is no longer an entity I recognize. It is a plastic skull blowing around in a November wind.

My mother. I used to talk to her every day at lunch time. If I didn’t call her first, she’d call me. And we’d share reheated leftover rice and beans or soups, whatever was left in our separate fridges, long distance. I would complain about a new wrinkle and she would laugh.

She no longer calls me. I don’t remember exactly when she stopped calling me–when exactly she forgot my phone number. When she forgot where I live at all.  When she forgot I’m 20-plus years out of college, and that she has two grandchildren – that I no longer am taking “classes” and having “boyfriends,” or need to plan ahead to when I’ll be having “babies.”

Yesterday I visited. I lit a fire in her fireplace she no longer recognizes as a fireplace  in the same house she has been living in for 30 years. She as a crick in her neck, so that she no longer can move her head; her eyes darted around the room  as if trying to peer into distant corners. What astonishes me is that she doesn’t seem to mind. This. The stiff neck. The tremor now in both arms since her stroke. Being strapped into a wheelchair.

“I’m a lucky woman,” she said. “To have two such wonderful daughters.”

Two?

As this dementia reshapes, transmutes, I can’t help testing it, poking at it like a washed-up jellyfish: “Oh? And is there a sister I don’t know about?” I asked this jokingly, suggesting she might have some other child from a distant illicit passionate affair….

“Well yes…”

“What’s her name?”

“Well…I don’t remember at the moment but I do have another daughter…” She ran a crooked, arthritic finger across her dry lips, thinking. Or trying to think, to follow a single thought.

She giggled, as she can now, at her own confusion, when her thinking leads nowhere. Because this she does know: her mind is not right. This she does know: she no longer knows where she is at any given moment; she could be lying down to “rest” on her own bed before her “long drive,” worrying about the fact that it was raining and she’d left all her windows open “back home.”

At the worst of times, she’s been kidnapped. She will plead with me to go check on my long-dead father to be sure he is not kidnapped as well.  Or she’s locked in a cell at the police station and begs me to come get her out, railing at how unfair it is to be arrested just because she had been “volunteering.” Or she is being poisoned by her aide who is only trying to wash the sticky thickening stuff off her tongue as, since her aspiration pneumonia, she no longer can drink liquids.

Best of times: Well, I don’t know. When she’s calm, I guess. When she may not be oriented, but at least she is not afraid. She is not panicked. She is just…waiting. Sometimes “for hours” at the doctor’s office. Or sometimes, just sitting in a “lobby.” Or at church where everyone has left, and she is alone in a pew, wishing she’d caught a ride home with another parishioner.

And when she doesn’t have another daughter she has, besides two real cats, an imaginary fish tank. I’ve never known her to have fish. Except for the tank she surprised me with when I was a child.  I remember that, waking on my birthday to a tank of angel fish, rainbow fish..and one dead swordfish. But it was a tank of love.

When I talk to her, I can’t help it–I want to know what it feels like. This confusion. So when she tells me she’s been out and about, at an “event,” I ask where?

“Well, I’ve been so many places today…”

“Oh? Tell me about one of the places. The event.”

I want to know.

“Well, I don’t know, it can get confusing, but it’s nice to be  back in one place again.”

Though that one place rarely now is home; I am dumbfounded daily, that she no longer recognizes even the rustic old buffet holding the same china for over fifty years, back from my childhood in the house I grew up in.

“So how are things? What have you been doing?” She asks daily now when I call her.

This is how our conversations go now, general. vague. Flat barren fields.

What have I been doing she asks? I want to cry to her about my ten year old’s recent football injury that resulted in a displaced hip and surgery. Now 6-8 weeks homeschooling. Home physical therapy, then outpatient therapy.

I want to cry to her about how I have seen her mirrored in my tiny son getting up on a walker for the first time, in the hospital after surgery, crying in pain. My following closely behind him, tying up the hospital gown in back to cover his fanny, as I would tie my mother’s.

The way my mother had cried. After she’d fractured her pelvis. On her own walker.

I want to tell her about how the hurt of seeing my mother reduced to a wheelchair is tripled, at the very least, by the image of my own child in a wheelchair.

I want to scream and cry to her. I want her to hold me in her lap. To rock me, as I did my own son last night when he fell asleep crying, “Why me? Why me?”

Instead, when my 96-year-old mother asks me how I am,  I say simply: “I’m fine. Things are fine.”

Last time she was in the ER, for that aspiration pneumonia, she was sepsis. Blood pressure 50/30, erratic extremely low pulse rate. I had to sign DNR papers. I turned down “extraordinary  measures,” invasive IV lines into neck arteries. I settled for antibiotics which the doctors agreed to administer, really, only to appease me–they were frank  in their prognosis that she had 24-48 hours.

I sat in a private room alone with her. I held her thin veined hand. I stared into her wide-open mouth as she breathed loudly.

She rallied.

She rebounded.

“I love this earth,” she would always say, before her last stroke, what precipitated this pneumonia. That was back when she still could recognize the cherry trees outside her bedroom window as the ones in her own yard. When she still could express how much she enjoyed the simple but bright window box I’d made for outside her bedroom window.

“Oh I love, love, love love you so much,” she often says now. “I want to buy you something really special. What do you want for your birthday?”

She can obsess about my birthday–which is not until February. I showed her a new handbag I’d treated myself to, as we used to always enjoying sharing those shopping things, and she said, “Oh I want this to be your birthday present!”

It’s not my birthday, Mom.”

“But I want to give this to you for your birthday!”

So the handbag I’d bought for myself became my birthday present to me which she forgot all about within five minutes of my leaving.

“What can I give you that’s really special?” she still can ask.

I resist smoothing her thin grey hair back off her forehead as I do my son’s messy bangs, when I try to soothe him, when he wants to get out of his own wheelchair.

She doesn’t want me to muss her hair.

My son doesn’t want me to pity him, as much as he does, very much, want Mommy.

So I restrain myself. But only out of love.

 

 

 

 

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A Writer Still May Weave a Tale: Update

I have truly been MIA,  because all the great “material” I have gathered to write about here, along this “journey” with my mother (it is a journey, her health care aide reminds) is becoming too painful to write about.

I keep a rough log of moments but don’t seem to have the  perseverance or focus to shape these moments into actual posts. Maybe I need to start drawing again–my mother, who has now descended into quite deep depths of dementia, said to me yesterday as I was going through an old photo album with her, that I should “sketch your memories;” we have a long history of having taken vacations together in New England, and as she is an artist and I have always been drawing, we would spend long afternoons in fields sketching mountains and trees.

When I was growing up, we summered in Vermont, and somewhere I have photos of her sketching old tree stumps, a favorite subject of hers. I’m not sure what sketching my memories will translate into for me. But there is wisdom in the things she can say to me these days. As when we were talking about her years as an artists, all her paintings which she doesn’t remember are still in her studio, and she said “Well, it’s all in the process, anyway.”

Anyway, mustering myself for a bit of self-promo to keep afloat: today I am a guest over at a dear friend’s blog – a blogger who is a terrific writer. So if you’d like to visit an old post of mine, back before my mother’s dementia, when I was still able to write with some humor about this “journey,” you can read it here:   

http://www.menopausalmom.com/2014/09/wacky-wednesday-guest-post-by-sandra.html Love to all my readers, and I will try to find my way back here in whatever form calls me. Thank you for all your support as this journey with my mother seems finally be reaching its frail end. signature

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