Someone close to me is facing her partner’s dementia. I wrote this for her.
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My Father’s Dementia
and some of the lessons I learned
In January 1976, my father hit a patch of ice on his bicycle, and fell onto his head. It was only a few weeks after his first grandchild’s birth,
He was taken to the hospital and quickly sent home. A week later, my mother became alarmed at his extreme agitation. The doctors found that Daddy had developed a subdural hygroma, an accumulation of cerebrospinal fluid, that was compressing the blood vessels in his brain. They operated, cutting out a small triangle of skull to get access to drain off the fluid.
I flew through the night with my baby and arrived on a sunny morning in New Jersey. My father lay in bed with bandages wrapping his head. He told the young priest who was visiting him, “This is my daughter. She came from New Mexico.” He knew that much but had no memory that I had a baby, that he was a grandfather.
Eleven days after my father’s operation, cerebrospinal fluid had re-accumulated inside his skull. He was silent, no longer lucid, and they did a second operation, draining the fluid again.
In the hospital after the second operation, he looked at me and said, “I know it isn’t real, but I see the word NAIROBI written on your shirt.” A day later, he wanted to shave. I put his razor on the table by his bed and turned to get shaving cream, a bowl of hot water, and a mirror. When I turned back, he had almost finished shaving. He got well.
Things went back to almost normal for over four years – Daddy ran a national foundation, gardened, traveled with my mother to visit us in New Mexico, and even stayed on his own when my mother came to help when our second child was born. Unsure of how the oven worked, he didn’t heat the meals my mother had left in the freezer for him, and subsisted happily on rye bread and pickled herring. His domestic incompetence was nothing new – he grew up in Germany, and said he could never have married an American because she would have expected help in the kitchen and wanted him to barbecue. My mother, an English woman, was happy to take care of all domestic chores.
I knew about only one odd event – my mother, ever thoughtful about how busy I was
with our two small children, did not want to bother me with her troubles. My parents’ friend, whom I’d known since I was little, called me after my father cancelled Mother’s arrangements for their trip to Europe. I called Daddy and told him that he was being unfair; Mother worked all year long taking care of him and she deserved one month of seeing old friends and not having to cook his meals every day.
He relented. Now, knowing what came soon after, I realize that Daddy must have suffered from uncertainties every day, waking in strange beds and boarding trains he did not know. He needed the safety of a familiar place, but could not express his anxieties or needs.
A year later, at a house on Martha’s Vineyard my parents often rented for a few summer weeks, my father believed my mother was keeping him a prisoner. He slammed a wooden chair on the floor. It broke to pieces. Mother grabbed the car keys and drove off. Knowing how reasonable my father could still sound, she wisely stopped by a friend’s house. When the police arrived, my mother and her friend told them that my father, who by then seemed sane, needed to go to the hospital.
From the hospital on the Vineyard, the next challenge was to take him home, back to his familiar space. Mother’s friend Katharine flew to the Vineyard to help. The doctors gave Daddy sedation for the long drive, and he slept for hours. Close to home, he woke, anxious, distressed, and angry. Katharine, someone for whom he wanted to be his usual mannerly self, helped soothe him through the last hour of the trip back home.
By Thanksgiving, my mother lived in fear that her husband would turn on her – and would hurt her. Some last scary event convinced her to send him to a nursing home, an institution with lavish décor and uncaring workers. By the time I visited, she had moved him to a nursing home in the center of town. It smelled of old people, but the helpers were kind. Mother spent most of every day there, and she fed Daddy his lunches and suppers. Her own life was over.
Then some good fortune –three sisters whose parents had taken my father into their home when he first came to the United States sent a large check. They said that Hans, my father, was their brother. And a bed at a nursing home half an hour away became available. Hans’s private room was on the ground level, with windows into a garden. Because of the distance, Mother went there only once a day, and she came home before dark. Daddy did not notice that she was there less, and she regained some of her life.
He would not have wanted her to sacrifice herself when there was no saving him.
I wish I had gone to see him more often. I went only once, on a trip with my family. My father’s silence did not faze our young son who climbed onto his grandfather’s lap to hug him. They nuzzled each other without words.
Nine years after his accident, Daddy stopped eating. I booked a flight for Sunday. On Friday night, I crawled exhausted into bed early. My hsband answered the phone. I can still hear my wail of sorrow when he came and told me Daddy had died.
At the memorial service, our son, now seven, shook hands and told our friends that it was his grandfather who had died. Mother and I asked the oldest of the sisters who called Hans their brother to speak about him. After the service, we had a party in the garden my father had tended for so many years.
What I Learned
Caring for someone with dementia is lonely and a long haul. Caretakers must first care for themselves so that they will be able to help all through that long haul.
Many people are embarrassed, even ashamed, by dementia. I remember my shock when a paramedic, who was taking care of my mother after a fall, asked me if she had dementia. It seemed a betrayal to answer, "Yes, a little." It need not be this way.
Lucidity comes and goes. A person with dementia, given a lucid moment, will want to protect others from what he or she might do when demented. It may be necessary to put someone in an institution.
When looking for a person or a place to take care of someone you care for, you should trust your intuition. And then check references, certifications, and so forth.
Just as we understand that a human is more profound than mere body, we need to believe that a human is deeper than mind. The nurses and aides who fed and washed my father recognized his kind spirit, its steady presence beneath his outbursts of anger and frustration. Our child was not distressed by his grandfather’s absent mind, but climbed into his lap for the embrace that came from his grandfather’s spirit.
The familiar is comforting to those with dementia. Gardens, birdsong, animals, and sunshine, all are comforting.
Humans may choose their own path. When my silent father closed his lips to the spoon we held to him, he was affirming that it was time to let go.
I'm getting sick.
Scratchy throat. Sleeping a lot. Feeling hot. Who knows how hot? The glass thermometer is broken.
Feeling hotter. Wow, a fancy new thermometer, plastic, beeps when the cooking’s done. 102.3 degrees.
Dr. K prescribes a Z pack, 5 days of Zithromax.
Five days later, I’m still hot, falling asleep whenever I lie down, lying down a lot.
I tell my daughter I can’t breathe deeply, I feel low on oxygen.
“You should ask Dr. K for oxygen,” she says. I go back to sleep.
While I sleep, my daughter calls my husband. She tells him to get me some oxygen.
My husband walks into the doctor’s office. He says that I need oxygen. This gets the doctor's instant attention.
Rather than admit me to the hospital for oxygen, he sends me for blood tests and an x-ray.
I have pneumonia.
Dr.K ups the ante from Zithromax (on my final dose, I’m still no better) to Moxifloxacine, a drug so scary he calls to talk about the dire warnings I’ll see on the inserts. He has considered the options before choosing this one.
I trust his judgment.
With moxifloxacine and rest, I get better.
Too sick to advocate for myself, I have a daughter, a husband, and a doctor, who all look out for me.
Who’s in your corner?
Some Notes on Advocacy (I should have known)
I hadn’t planned on writing about this, because it went badly. Still, maybe there’s more to learn from flops than wins.
August 22, my husband Tom’s birthday. My heart is beating fast. Too fast? I’ve seen the warnings: women’s heart attacks are different; the signs subtle; watch out! I need to get to the hospital, fast.
It’s dark, late, 10:30. Anna, a young wildlands firefighter and emergency medical technician I know, sits at the ER’s front desk. A good start.
They hurry me to a cubicle, check my pulse and blood pressure, draw blood, stick 12 ECG (electrocardiogram) leads onto me, start an IV drip. The nurse is paying attention.
Nothing alarming yet. The doctor will see what my blood chemistry reveals when the tests come back.
Midnight: nursing shift change. A dangerous time. Though hospitals work to pass information correctly and completely, the chance for mistakes rises.
I feel guilty – it’s Tom’s birthday and we’re both tired. I tell him, Go home – just a mile away. I’ll nap, and will call him when they let me go.
At last, the doctor says the tests show that my blood chemistry is fine and I can go home. No one comes to unhook me. It’s dark in my cubicle. A patient patient, I don’t mind a little wait. I doze, check the clock, doze. An hour goes by.
2 a.m. This is ridiculous. I want to be home, in my warm bed. I unstick my 12 ECG leads and put on my clothes. With the IV needle in place, I can’t put my left arm in my sleeve.
I shuffle to the nurses’ station, rolling my IV pole along with me. Two women on the far side of the counter are looking at papers together. Several minutes go by. They never look up.
I’m worn out from the anxiety that brought me here, sulking like a child, thinking “you’ll be sorry,” deflated beyond anger.
It feels like a dream – after midnight, standing in a vast room with a ring of curtained cubicles on all sides, I feel invisible, unable to break the silence.
I pull my pole back to my shadowy cubicle.
I decide that Anna, my admitting desk friend, can take out my IV. I call Tom on my cell phone and start for the exit.
A nurse stops me – “Where are you going?”
She hasn’t heard that the doctor said I can leave. She takes out my IV. I tell Anna goodnight. Tom takes me home.
My heart is fine. Just a weird blip on a dark summer night. But things have gone badly, and I should have known not to trust that everything was under control.
Does anyone wonder why a patient needs an advocate? I was foolish, telling Tom to go home. After all we’ve been through with our son, with my mother, with him, how could I think I didn’t need him?
Things can always go wrong. A patient doesn’t have the energy or the perspective to take charge. We all need advocates to speak for us and, sometimes, to act for us.
and we finally got there yesterday. My audio book "has been reviewed and accepted. Your title is headed to retail!" I'll send out a newsletter as soon as it's available. Meanwhile, a photo of Kabby Kabakoff, my talented recording engineer, in his studio.
Below: the view from my perch in Kabby Sound's studio.
The unabridged audio book will be available soon, probably early in December. Amazon, Audible, and iTunes will distribute it.
I've been recording, listening, editing, listening. I am learning about the quirks of English, and about how many ways a simple sentence can be read. I am learning a great deal about language, and about how many ways a simple sentence can be read.
In the recording studio, consonants I wrote without a second thought trip me up.
You may think RSTST an unlikely combination of letters, but it's right there in the words first steps. We were weathering is another tough phrase to make come tripping off my tongue.
When I am ready to splice in a sentence that didn't come out right on the first take, I listen to what we already recorded, so I can imitate my own voice. That sounds strange, but when I read dialogue, or letters, or scientific journal excerpts, or simple narrative, my rhythms and tone are different. I need to match them to create a seamless story.
Kabby Kabakoff, the recording engineer, is an ideal partner for finicky me. He's a musician with a good ear, and we work together until the recording sounds right.
I hope this unabridged audio version of Climbing Back will allow many people -- those too busy to sit and read as well as some who have suffered a brain injury -- to share the experience and insights of our family's journey.
Jesse, whose mother and sister are in my story, says he’ll "read" Climbing Back when it’s an audio book. Several other friends listen to books while they drive. And there are some who never enjoyed reading, people whose sight is failing, and others who have trouble after brain injury.
So I want to make an audio book of my memoir.
A woman agreed to produce my book through an Amazon subsidiary. I wondered could she pronounce difficult names right. I worried that she would over-dramatize my story, not understanding the restraint and quiet tone some reviewers have praised.
I wished I could do the recording myself.
The Amazon producer communicated sporadically, became ill, and needed more time. Once again, an obstacle suggested a new path. I found a recording engineer in Santa Fe, and began working with him. My broadcast-savvy daughter suggested starting mid-book, so that when we got to the first chapters, I’d be at my best.
I’m finding that English is easier to read silently than out loud, noticing how certain consonant pairings don’t dance trippingly on the tongue, and wondering if other languages are easier. Still, the recording equipment, and the wizard in the control room, make me sound good.
I finished recording yesterday, and now the editing process begins.
October 7, 2016, Lovelace Women’s Hospital
Lea, fasting since last night’s supper, watches me eat my bagel at the Donut Mart at 6:30 – half an hour early for her surgical appointment, because we built in back roads driving time after the interstate was closed down on our last trip to Albuquerque.
In the curtained cubicle, a hose blows warm air under Lea’s cotton blankets. Nurses, the anesthesiologist, and the surgeon, all explain their roles and the sequence of events: the doctor will come out to report right after the surgery; I can’t go into the recovery room because of the other patients there; and I can track Lea’s progress on the electronic monitor. For privacy, her multi-digit patient number, not her name, will appear on the monitor. If I have questions, I can call the charge nurse’s cell phone.
The only glitch comes when, as Lea lies on the gurney in her hospital gown, a nurse says she should not be left alone for 24 hours after the surgery. Quick calls to friends produce the company Lea needs, but earlier notice would have been better.
Lea’s elderly father comes to the hospital. He is there when the surgeon emerges to report that all has gone well. Lea will say how wonderful it was to see him when they wheeled her out of recovery. Knowing she wanted me there to help, I failed to realize how important family is at a time like this.
Lea’s father treats us to a meal before I drive us home to Santa Fe.
At Lea’s house, I am finally a bit helpful, making fresh ice, figuring out how she can elevate her arm while she naps, and going to the store to fill her prescription and buy the prune juice the nurse advised.
Over a week later, Lea is still waiting to hear whether the surgeon got every last bit of the pre-melanoma so she won’t have to go back for more surgery. My fingers are crossed.
October 20, 13 days after the surgery, Lea goes to Lovelace for a post-operative checkup. She texts me: They got it all!!
Hallelujah!, I text back.
September 22, 2016
Lea asked me to accompany her when she went to see the surgeon who will remove a melanoma from her arm. [Melanoma - a tumor of melanin-forming cells, typically a malignant tumor associated with skin cancer.] A scary prospect.
Half an hour from the hospital, the interstate was closed. Police sent the traffic back north, telling us to take Highway 14 to Albuquerque. Lea would miss her appointment.
Lea called the hospital to say she ’d be over an hour late and had to reschedule.
I’d seen this movie before.
I called Tom, a man with many maps. With his directions, we drove from shady sleepy Peña Blanca along narrow two lane roads to Kewa Pueblo, where tribal police were out directing traffic, onto gravel and dirt roads to San Felipe Pueblo, along a paved road to the village of Algodones, and back to the interstate for the last miles to Albuquerque. When we called the hospital to say we would get there just a little late, they said all right.
The crawl on the waiting room TV told us that a truck leaking fluid was being handled as "a HazMat incident." The interstate was closed for several miles in both directions.
Terri introduced herself as she led us to the exam room. She told us what was going to happen – the doctor would come in to talk, he would leave while Lea put on a gown, and he would come back to do a physical exam. Terri took Lea’s blood pressure and pulse oxygen, and told us the numbers. They're good.
The doctor introduced himself and the medical student who was with him. They shook hands with Lea and with me. He asked Lea Do you have any questions? before he asked her for the history of your skin.
This is how it’s done! They greet us, they listen to us, they pay attention.
Dr. R. drew pictures for us – of the epidermis, the dermis, the melanocytes that grow above the dermis and absorb radiation, explaining as he drew. [Melanocyte - a mature melanin-forming cell, typically in the skin.] Melanomas, he said, first grow in the plane of the dermis, and only later “extend” into the “functional elements” of the skin, such as lymph nodes. Lea, he said, had pre-melanoma that “won’t jump around your body like a more invasive melanoma.”
Three little letters: P R E ! Not melanoma, but pre-melanoma.
He told us more: Lea’s chance of another pre-melanoma was 10 to 15%. She should check herself monthly, and be checked by a dermatologist at least twice a year.
He explained the surgery. In response to my questions, he drew pictures to show the “rotation flap procedure” he will do to cover the area he takes out. He went over possible complications – not necessarily what anyone wants to hear, but, should any of them occur, reassuring to think that he has anticipated them and knows what to do.
After that, a scheduler, who introduced her self and explained her role, offered us coffee and water, and asked Lea which date she wanted for her surgery. Another woman walked us through the corridors and escorted us upstairs for Lea’s pre-operative EKG.
Lea thanked me for asking questions that gave her more information, but, most of all, was grateful that I’d helped her navigate the back roads when the interstate was shut down. Without my help, she says, she'd still be waiting for the pre-operative visit.
Tracie's Story, last chapter, September 2016
Tracie went away on vacation. When she returned, she was busy getting ready for her teaching job. She called me with her news:
The medication the last neurologist prescribed did not help her, and Tracie had to take ibuprofen on top of the meds to manage her headaches. Still, she is better now, and is hopeful that her neurological troubles will not come back.
We plan to get together to talk, not about her troubles, but about all the other parts of our lives.
See below for Installments 1,2, and 3 of Tracie's Story
TBI, Advocacy, and Drinking, September 3, 2016
A note reached me a few days ago from a woman whose brother suffered traumatic brain injury two years ago. She brought up a cautionary point about patient advocacy that I had not considered. She wrote:
The woman also noted the irony inherent in her brother not being tested for alcohol.
. . . he doesn’t remember the accident, doesn’t remember how many drinks he had before the accident or anything else about the accident . . . .
I am grateful to the woman for allowing me to share her experiences and wisdom.
Tracie’s dizziness, slow speech, forgetfulness, and headache have continued for months. When she went to the University of New Mexico Neurosciences Center in April, they had mistakenly scheduled her to see a neurosurgeon, not a neurologist. Five weeks later a neurologist ordered a Lumbar Puncture (or LP or Spinal Tap), to help discover the cause of Tracie’s troubles. [See Installments #1 and #2, below.]
July 11, 2016, 10 a.m., UNM Neurosciences Center, Albuquerque:
After having waited almost three hours for the neurologist in May, I had asked what wait Tracie might expect when she came for the lumbar puncture. The scheduler said it wasn’t like waiting to see a neurologist – Tracie, she assured us, would be called for the LP at the scheduled time.
We arrived twenty minutes early, at 9:40. They didn’t call Tracie until after 11:30. I was not allowed to go with her to the room where the “sterile procedure” would take place. An hour later, Tracie called on her cell phone. She said there had been a “mix-up” and the doctor had “gone home.” The lumbar puncture would not be done.
Since the LP was off, I imagined that any strict protocols for sterile procedures no longer applied. I asked if I could I go in to be with Tracie. “Do you have her power of attorney?” the receptionist asked. No, I didn’t.
I could do nothing to help.
With Tracie’s permission, here, in her own words, is what went on in the room I could not enter:
I was not admitted into a room until 11:30, and since this was supposed to be where the spinal tap was to take place, I went alone. About 20 minutes later, an assistant came in, and apologized, telling me that there was a mix-up and the doctor who was to conduct the spinal tap had "gone home" . . . . I laughed and said, "really. You've got to be kidding!" but she quickly stated that another doctor would be coming in to talk to me . . . .
[The doctor who came in said,] "Well, I can re-schedule the tap, but I want to talk to you about that. I've looked over your chart, and I don't think that this is a case of meningitis. If it were a brain infection you would either be [over it by now or] dead at this point." . . . . He thinks that we are looking at a form of migraine . . . .
We did a hypoventilation and a hyperventilation test . . . . The hypoventilation test required me to breathe out and hold my breath a number of times. Then the hyperventilation test required me to breathe hard and deep for 10 breaths. He asked me which one was worse, and I really didn't know.
[The doctor left the room and told the nurse to repeat the tests.] The hypoventilation brought on stronger headaches and dizziness. When the doctor came in, I did it once again, and then he pushed on the base of my neck - first on the right side, with no real differences, and then on the left side. When he pushed on the left side, I got extremely dizzy, with slurred speech, and stronger headache. It took a while to subside.
His recommendation was, right now, some shots which were a mixture of steroids and a numbing medication . . . . He explained that it would be painful, but it would let us know right away if migraines were the cause. I liked that it would give us a quick answer, so I agreed.
Oh, my gosh, that was wicked. . . . [It was] like when you get your teeth pulled - the shot goes in, and then they move it around and shoot a little of the medicine in at a time. About three different places on each side of the base of my skull, one syringe for each side . . . . the pain was pretty bad the first shot in, and the sound of the "crunching" as the liquid pushed through the fibers in my neck was freaky-weird. Each time he was done, the doctor had to 'push' hard on my skull - one hand on the puncture area, and one hand on my forehead, in order to make sure that I would not bleed out. That hurt.
Once it was done, the doctor explained that I would be dizzy from the pressure of pushing on my head afterward, and he was right. I felt pretty discombobulated afterward, and just wanted to get the hell outa there. But the headache was completely gone! And so I have directions to 1) follow up with my primary care physician to check on my thyroid again - blood tests - but I don't know if he meant to include another ultrasound; 2)pick up my medication and start taking it once every evening before bed; 3)monitor my blood pressure and heart rate twice a day, and 4) call [the nurse] next Monday, if not before, to let them know how things are going.
Two hours after she had been taken for the lumbar puncture, Tracie strode into the waiting room and said, “Let’s get out of here.”
So, once again: waiting, not seeing the doctor we expected, and no certainty as to what is going on. Tracie, ever generous (she thought it “humane” that a homeless man, late for his appointment after the police had wakened, handcuffed, interrogated, and fined him for criminal trespass, should be treated first), doesn’t get the LP, hears a new diagnosis proposed, and has an amazingly painful procedure.
Nine days later, it’s not clear if things are better. Tracie’s in limbo. She will have a follow-up appointment. We don't know what else.
Elise Rosenhaupt, author of the memoir Climbing Back, writes about her work as a patient's advocate and other experiences that cross her plate.
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