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?

Memorial Day is for the Dead

I invite you to link here and read my son’s post, entitled as above, which begins thusly:

It says so right on the tin: “[Memorial Day] commemorates U.S. soldiers who died while in the military service”.

The key word in all of this is “died”, not “served” or, for that matter, “serves”. This day isn’t for anyone who ever found themselves in the military of the United States, or for those who find themselves there today. None of these truths dishonors living veterans (who have a day) or active duty personnel.

Death is different. Death is singular. Death is separate. Death is final. The point is to set aside a day in which we remember those whose service took them all the way past that final line. Whether or not they died for a just cause, they died in our name……..cont’d

And while I’m on the subject, I offer for your illuminination Mark Twain’s “War Prayer.”

Betty rules the age; Dixie dies too soon.

At 88 years of age, Betty White still rocks and rules, and she demonstrated on Craig Ferguson’s Late Late Show the other night. I hope I can be a sharp as she is in another 18 years.

At exactly my age, Dixie Carter succumbed to cancer earlier this week. I never missed a performance of her Julia Sugarbaker on Designing Women.

Dixie Carter and Julia Sugarbaker. Gone but not forgotten.

Buddha waits for Spring

buddha

Until the snows came, Buddha rested on a tree stump in the corner of our yard. Now he waits in the corner of the porch, along with bike helmets and what will be the starting of seeds.

I wish I could wait like Buddha, without anticipation or expectation. Waiting in stillness as lives begin and end, as the first butterfly finds its way to our doorstep, as somewhere on a mountain, an old woman cries for stillness.

an open letter to pharmacology professionals

I need your help. Or rather my mother does. She is 94 and living in a personal demented hell where she is constantly besieged by overwhelming fears and anxieties. She lives with my brother, and their local family doctor is not very knowledgeable about dementia issues like my mother’s. None of the meds that he has prescribed have helped at all.

An acquaintance who trains nursing home staff told me that nursing homes bring in a pharmacologist to do an assessment and suggest a pharmacological treatment plan for dementia patients. Often it is a combination of drugs, and the process is carefully monitored and the drugs adjusted as needed.

Where can I find a pharmacologist who will come into a home and do a similar assessment??

After this weekend I will begin calling local nursing homes to see if they can recommend a pharmacologist that they use. I also have emailed national pharmacological organizations and associations to see if there might be a list somewhere of pharmacologists who specialize in doing those kinds of assessments.

No one should have to spend her last days in the kind of agony that my mother is in. I don’t know where else to go for help. Please leave a comment if you have any advice.