the chalice of pain

This is my response to Magpie Tales’ visual writing prompt #42. You can find the responses of others by going here.

The Chalice of Pain

Father, if it is possible, let this chalice pass from me! Father, all things are possible to thee, remove this chalice from me!

Pain. We all feel pain. We all would rather not feel pain, and those in pain usually can let you know where it hurts and how badly it hurts.

Except if they have dementia.

There is a false assumption that those with dementia don’t feel pain because they often can’t articulate that fact in ways that are obvious — especially with words.

From “Pain and Dementia,” referenced above:

Over time your family member may lose the ability to speak or may not make sense when they do. Therefore, it is very important to be able to recognize behaviours or actions that indicate pain. Some of these pain-related behaviours include the following:
* frowning, grimacing, crying
* swearing, moaning, calling out, noisy breathing
* fidgeting, pacing, rigid posture
* guarding an area of their body, not wanting to move
* hitting or striking out
* withdrawing or resisting when someone is helping with personal care
* refusing food
* change in appetite, rest periods, or sleep patterns
* increased confusion, crankiness, or distress

From “Behavioural Changes”:

* Sudden changes in behaviour are important to recognize as these are often the only clue that an older person is sick, getting worse in their dementia, becoming depressed, or having a side effect from a new medication.
* Attention to your family member’s behavioural and psychological symptoms are key to improving and maintaining their quality of life.

A recent PBS Frontline program, “Facing Death,” documented the pain suffered by both family (emotional pain) and those dying from dementia and other illnesses (both emotional and physical pain.) You can watch the program at the above link. Also of great insight are the comments left by viewers.

From “What happens when elderly people die?”

…fewer than one in five people can have a peaceful end, since ‘dying is a messy business’ for which relatives are unprepared. He continues: ‘Too often, patients and their families cherish expectations that cannot be met, with the result that death is made all the more difficult by frustration and disappointment with a medical community that may be able to do no better.’

Relatives who expect aware deaths may become angry and turn their anger onto doctors and nurses when death takes other forms. Dying people often need psychosocial support, but the potential for introducing this occurs only when the dying phase is identified. This is not always possible in trajectories 2 and 3….. [2) long-term disability with periodic exacerbations and unpredictable timing of death that characterize dying with chronic organ or system failures (some cancers that respond to treatment and then relapse come into this category); (3) self-care deficits and a slowly dwindling course to death from dementia.]

After watching the Frontline program and hearing how the doctors explain the options to the families of dying patients, it seems to me that there needs to be more honesty from the medical profession about the dying process, its inevitability, and the benefits to the dying of making those patients as pain-free as possible.

Maybe, because I grew up above a funeral parlor operated by my father, a funeral director – maybe, because I sat at my father’s bedside while it took days for him to die of cancer (his mind was alert and he chose to die at home with a certain amount of pain) – maybe because I survived the excruciating pain of a breech birth and thought I had died and now I’m not afraid to die – I feel strongly that, when death is close at hand, it should be welcomed as a relief from pain and that pain (for example, of old organs failing, of agitated dementia) should be aided by pain-relief medication.

On my bookshelf is “Final Exit,” which I bought a long time ago out of curiosity about peaceful “self-deliverance” when my time comes, especially if that time comes riddled with pain.

But it becomes a lot more complicated if a form of dementia has stolen my ability to communicate my pain and my wishes. My daughter knows that I’d rather die in peace than die in pain.

In the story of the Garden of Olives, even Jesus pleaded for the chalice of pain to be taken from him. No one wants pain, although we often are willing to bear with a certain amount of it if it’s going to get better. But the pain of dying does not get better.

Somehow we need to be educated about that fact so that we hold the best pain-free interests of our dying relatives in mind.

Remembering Bronislawa

My mother’s name was really Bronislawa, which doesn’t have an English equivalent. So they called her Blanche.

Her dementia took over all of our lives for the past decade. Now that she is gone, my mind has cleared enough to remember her as she was before.

She was born in America but spent 8 years in Poland with her mother and siblings between the World Wars, when she was a pre-teen. Her father stayed behind to keep earning money, and the rest of the family went to live on the family farm in Poland. She was bi-lingual. She was the oldest of three sisters. She never graduated from high school. She had two brothers. None of her siblings is alive.

This is her and her mother and sisters when they returned from Poland to live in Yonkers.

At the age of 16, she went to work in the Alexander Smith and Sons carpet factory. Her family struggled financially, so they all had jobs. She often recalled that her father had to wrap her arms with ace-type bandages because they would be so sore after a day of work. Until the day she died, she had an indentation in her right forefinger, which she said was caused by the thread she had to wind around her finger day after day.

She was always slim and petite. And pretty. Not beautiful or striking. Pretty. He was handsome. “All the girls were after him,” she often said, “but he picked me.”

This is her and my dad when they got engaged.

She also was a great social dancer and, of course, loved to polka. For many years she danced in a local Polish dance troupe. That’s her, on the left, and one of her best friends, who is still alive and who attended her funeral.

Even toward the end of her life, when she pretty much stopped speaking and walking, my mom would follow my lead in the fox trot and waltz if I held her close to me. She loved music. Loved to dance.

She also liked to sew. When I was a child, before every Christmas, all of my dolls would disappear for a day or two and then show up on Christmas Day all decked out in new dresses that my mother made for them. She liked her clothes to fit well, and she was always sewing them in, letting them out, hemming and correcting. I have that same tendency. She taught me to knit, crochet, and embroider, although she never really spent much time doing those things. Mostly, she was the full-time wife and mother and much-loved member of a group of Polish/American women who played Canasta once a week and socialized, family-style, other times.

I lost count of the visitors at her wake who said to me “She was a real lady.” Proper behavior and stylish clothes were important, and she bought the most fashionable shoes, which for many years had very pointy toes. She liked pumps and bought them narrow so that they would stay on her feet. Her toes suffered for that vanity, and when she got older, it was hard to find shoes that were comfortable.

She chose the suit and blouse that she wanted to be buried in more than a decade before the event — and with pearls around her neck and in her ears, she looked like a VIP, which, to many, she was.

Her portrait, for which she posed to have painted in the 1950s at my father’s request, still hangs in my brother’s house.

The Deathwatch Diary (Final)

My mom is gone. She died peacefully 11 hours after she was taken off the morphine drip as a result of my brother’s insistence. She never woke up. I guess our collective magic worked. Or maybe it was just that her time had finally come.

I have gone back with my brother to his house to get her clothes ready and find her rosary. Tomorrow I will go and stay with friends in Albany until the funeral later this week in Yonkers, where our family is buried.

My brother will finalize the funeral arrangements. I am tired of getting into arguments with him.

I write this clumsily on my iPhone because my brother has disconnected his wifi that I use for my netbook because he doesn’t want me blogging. Well, isn’t that just too bad.

He is already harassing me about crumbs on the floor and too many lights on. I thought my mother’s death might diffuse his nastiness toward me. Wrong, again.

But I will get through this and then go home. And not come back.

The Deathwatch Diary (Four)

Atheist though I am, I still marvel at the awesomeness of synchronicities.

All afternoon today, as I cried and blogged and cursed, and my brother argued, and my mother lay still and panting in her hospital bed, the fat gull flew and strutted around the roof outside my mother’s window, screeching, The sound was like fingernails on a blackboard. There was no ignoring it.
So, I googled “seagull totem” and found this, which I share here:

Spiritual Messengers

Sea Gulls are messengers from the gods, especially ancient Celtic deities.

They bridge the gap between the living world and the spirit world.

Opening yourself to their energy enables you to communicate with the other side.

Sea Gull can also give you the ability to soar above your problems

and see things from above. Seeing all the different viewpoints.

Better than any fortune cookie.

And then, went I went outside to get another book from my car, I found the item in the photo below in my book bag, and I hung it on the rack on my mother’s bed that is supposed to hold IV bags.

It’s the talking stick that I and my five women friends jointly and ritually made from a root, stones, feathers, ribbon, yarn, thread, spangles, and even a golf tee. Crone magic of a very special kind.

My daughter chants to set my mother’s spirit free. And I embrace roots and wings for my own spiritual sustenance.

Such everyday magic, these synchronicities.

The Deathwatch Diary (Three)

Go here for Deathwatch Diary (One)
Go here for Deathwatch Diary (Two)

I should have known that it would be a bad omen to take the book, above, to read while sitting through the deathwatch.

Bad things did happen. My brother bullied his way into making me the obstructionist in reaching an agreement on the care my mother will get in her final hours. With pressure on me from more than a half-dozen hospital staff, he had her taken off the morphine drip. I finally gave in, provided that the nurses can put her back on if she demonstrates distress. The problem is that my brother interprets her distress as “feistiness.” I can only hope that she is so far gone that her brain is dead and will not relay pain messages to her nerves.

It remains to be seen whether the nurses will, indeed, put her back on if she looks like she needs it. Or will my brother bully them into folding to his interpretations.

Let this be a lesson to all who delegate health care proxies and power of attorneys. Choose carefully. Choose someone who doesn’t have his/her own agenda for how your long life ends — which should be neither bang nor whimper, but rather a peaceful slide into oblivion. Or wherever.

Yes, I’m pissed at the staff here, who let him do the wrong thing for the wrong reason. I’m pissed at myself that, with little sleep for 48 hours, I folded under pressure.

This is about me, and I’m not done yet.

The Deathwatch Diary (Two)

Go here to read Deathwatch Diary (One)

Every day, a fat seagull spends the afternoon sitting on the roof outside my mother’s hospital window. A nurse told me that, several years ago, a woman staying in the room next to my mother’s would leave some of her food outside her window for the birds. This last one is still hoping.

My brother thinks that my mother could beat the odds and become aware and pain-free enough to go home to live out the rest of her hours (or days). He wants a miracle.

This morning her blood pressure dropped and her pulse quickened. By her bedside, I sit and watch the read-outs for the meds that are keeping her comfortable and pain-free. It’s all about the numbers.

It’s all about numbers.

“You can never know for sure,” the doctor tells me this morning when I ask him how long she might have. The turbaned doctor is very kind, compassionate. Even his handshake is gentle. He is angelically patient as he answers the endless questions that my brother has in hopes of being able to have my mother wake up and see him one last time — see him so that he can say goodbye. When I am not angry at him I see that his constant arguing is a way to keep himself from feeling overwhelming grief.

I tell my brother about an “Allie McBeal” episode I remember in which an elderly dying woman on a sedative wakes up and asks to be put back on the sedative — because, while sedated, she is having an extended dream that she is living her young life, that she is young and alive instead of old and dying.

I ask my brother if it might be that my sedated mother is dreaming she is young again instead of old and dying. His answer is that maybe she’s not.

In reverie or not, I don’t want her disturbed. He wants a miracle.

It’s all about numbers: 94, 88/55, 1mm, one or two days. I watch the second hand move around the clock. I count her breaths — 18 a minute.

The Deathwatch Diary (One)

My mother’s room looks out over a roof with the HVAC and other protuberances. But over the left corner of it all, I can see the Hudson River and the Palisades. I can see it, but my 94 year-old mother can’t.

Day by day, she grows smaller in the hospital bed on the oncology floor with the patients who are at the point at which “Comfort Care” is their last best option. My mother doesn’t have cancer, but, with advanced dementia (can’t swallow) and renal failure, “Comfort Care” is her last option as well, and this is the best place for her in this hospital. (At least I think so; my brother doesn’t agree.)

I have blogged about my mother’s condition before, and you can read those posts by searching this blog for “dementia” and/or “caregiving.”

For the past ten years (which, not coincidentally, is when I began this blog) my brother and I have disagreed about the effects on my mother of her journey into dementia. What he insisted was her usual stubbornness and feistiness, I believed, from my own research, was that insidious deterioration that had begun in her brain and would end just where it is ending. I had read The 36-Hour Day, I logged onto online forums on the subject of symptoms and care. I subscribed to Care ADvantage magazine to get tips on what to look for and how to help her manage the changes I could see in her behavior and her perceptions of what was going on around her.

My brother and I brought our mother to the emergency room last Sunday, after she had refused to eat or drink for several days, was obviously dehydrated, and had begun to tune out the world. In retrospect, perhaps we should have let nature take its course, and she might have simply gone to sleep at some point and never woke up. But she seemed in severe distress — couldn’t find a comfortable position to lie or sit in, and finally, unsuccessfully, tried to sleep sitting up. She had stopped communicating and kept rubbing her legs. We couldn’t tell if she were suffering, and so we took her to the hospital,

She is sedated, now, as “comfortable” as possible during this time when her body is shutting down. Her awareness already has, except for brief and seldom moments when she is physically disturbed and then responds with wide-open, red-rimmed eyes and an unearthly howl that resonates with a primal fear.

I have slept in her hospital room every night since she was admitted last Monday, listening to her labored breaths and getting up to check her when her breathing stops for several seconds at a time. When my brother comes to stay with her during the day, I take some time and slip away to shower, change my clothes, eat something other than hospital cafeteria food, walk in the crisp fall sunshine. The time drags while I am sitting in that room with a partial view, and so I knit, read, play games on my iphone, check in with FaceBook and my son’s Twitter, check my email.

But this isn’t about me.

Or is it?

I am a victim of elder abuse

from “Elder Abuse and Neglect”:

In emotional or psychological senior abuse, people speak to or treat elderly persons in ways that cause emotional pain or distress.

Verbal forms of emotional elder abuse include

* intimidation through yelling or threats
* humiliation and ridicule
* habitual blaming or scapegoating

Nonverbal psychological elder abuse can take the form of

* ignoring the elderly person
* isolating an elder from friends or activities
* terrorizing or menacing the elderly person

OMG. There it is. That’s why I moved out from living with my brother and trying to take care of my mom who still lives there. I kept trying to tell him to stop, but he just kept on. I’m an elder, and that’s abuse.

And now I have to figure out how to get my mom away from him because, at 94 and with dementia and a slate of physical problems, she can’t just move out the way I did.

Boy, did I make a series of bad choices as I tried to be my mom’s caregiver. I’ve been trying to remedy my situation since, and now I have to figure out how to remedy hers.

What I find really interesting is that, while I was on an anti-depressant, I never got mad enough to fight back no-holds-barred. Now I’m off the drug and I’m really mad. And I’m fighting back.

day 3 of dementia immersion

She tries to comb her hair with her toothbrush and brush her teeth with her comb. That’s pretty much a metaphor for where my mom’s mind is. And this is my 3rd day here with her and my brother, trying to ignore his rants against my caregiving “techniques” while keeping my spirits up so that I can be of best use to my mom.

Every once in a while she does have a lucid moment. Soon after I arrived, she looked at me, smiled, and then started to cry “I’m so happy happy to see you!!” Several minutes later she asked me “What is your name?”

Sometimes she calls me “Pani,” which is the Polish equivalent of “Mrs.” In those cases she knows I’m someone who helps to take care of her but forgets who I am. Sometimes she calls me “ciocia,” which means “aunt” in Polish, and she thinks I am one of her many aunts (all long gone) whom she knew as a child. Sometimes she hugs me and says “You are my mother.”

But mostly she vocalizes quick pants of “a ah, a ah, a ah….” for hours on end, refusing to take even a tylenol.

I am only here for a while once a month. My brother, who has CONTROL but no real self-control, keeps her with him and does the best he can by himself. They both need more help, but he won’t bring any in.

I’m doing my best to keep my reflux and back spasms under control. How long I last here depends….

I keep reminding myself that she won’t live forever, even if right now it sure feels like it.

While she’s napping, I’m going to wash my hair.