Category Archives: Journal – Vol. I

XIV. Grasping for … Well, Candelabra

Emma parked her walker in the usual spot one recent morning, to the left of the credenza behind her dining chair at the head of the table, and instead of turning to her chair, overshot the dining table and headed for the corner. After much coaxing, I redirected her. On her way back, grasping the credenza, she grabbed the candelabra and then the candlestick holders. At least she didn’t bean me with one. Phew. She’s so afraid she’ll fall, she grabs onto everything in reach – bed quilts, candelabra, doorjambs…. Kind of like building your house on sand – nothing that will hold.

Emma is hard of hearing and belligerent. She thinks she knows best. And, true, sometimes she does, but she can’t communicate her reasons; I find out later. But, most of the time, she only thinks she knows best – and she tells me about it, vis-à-vis, “I’ll have you fired!” “Keep your fingers off me.” “You leave my walker alone!” She can talk when she wants to. Thank goodness that kind of talk doesn’t happen often. Although, now, she’s become combative at times. I’ve learned to stand back so when she swings, she won’t hit me. She sits in her chair next to the bed and grasps her bedpost with that firm grip only women of her generation can (accustomed to kneading dough, flattening it out with a rolling pin, rubbing laundry against a washboard, wielding a laundry iron made of iron, scrubbing the kitchen floor on hands and knees with a scrub brush, to name a few routine activities), so that her health care aides and I cannot get her arm into or out of her shirt. I try to pry her hand off and she swings at me. She is kinder to the aides.

Last night she made it to the table OK, but when she proceeded to eat the salad with baby arugula, she picked each arugula leaf out by the tip of its stem, as if lifting out a Southwest Florida lizard upside down by the tip of its tail, and placed it on her folded paper napkin beside her plate. At least she eats. I’ve been told that many dementia patients are more combative and ultimately, they stop eating and their bodies shut down. So, thankfully, we’re not there yet.

Her first major fall happened when I was helping her get out of the tub and she folded up and got wedged on the tile floor between the side of the tub and the front of the toilet. It was her birthday. Her legs and an arm were bent at odd angles. She could not get up on her own and I could not get her up. So I ran next door hoping to get my neighbor. She is strong and has had experience with these kinds of occurrences. But she wasn’t home. Her brother, however, in his early 40s, was. Stunned momentarily by my request, he rallied quickly and immediately helped. It was his indoctrination. He looked away as he helped her up. Emma was, of course, dressed appropriately for her birthday – in her birthday suit.

She experienced a major fall soon after that. This was about four years ago. She didn’t have her walker yet. Even then, though, she was grabbing onto furniture as she made her way around the house from one piece to the next. This time when she fell she hurt her arm. She couldn’t climb into her king size bed. I had to help her, but I couldn’t lift her. I called the wife of my lawn care guy to see if she knew anybody who could help me. I didn’t know whom else to ask. I thought possibly someone in their Mennonite congregation might do such work. She came right over herself, even though she lives 20 minutes away, has six children and it was dinnertime. She stayed for two hours while Emma finished her dinner and we got her undressed and into bed. She would not accept pay. (I did pay her something later on, though; I felt she helped us kindly, patiently, and cheerfully above and beyond the call of duty.) I placed a small stepstool beside Emma’s bed after that. She still uses it every night, although she can climb in the other side of the bed without it.

Somewhere around that time, I had a party, and a friend said to me, “You need help. You really need to get help with her.” I don’t know why I hadn’t thought of it. I thought I couldn’t, I suppose. But, then, I spent weeks calling various healthcare agencies and the state Division of Aging learning what was available, financially and healthcare-wise. Most agencies did not return my call. One agency, Bayada, jumped on the task, got an aide – the best aide I’ve had – right out to me and organized everything within our case. Medicare paid for this, since Emma was injured and required a physical therapist. The therapist gave her range of motion exercises. The aide bought a foot tub for Emma in which to wash her feet, applied body lotion, face cream, perfume and jewelry, all of which Emma would have done on her own had she been able. And Emma got a walker. Medicare paid for the walker. You get one such support instrument a year paid for by Medicare, it is my understanding.

Our time with Bayada was short. Once Emma’s therapy was finished, Medicare no longer paid for her aides. And Bayada was not a Medicaid-paid agency. Emma never thought she’d live this long, so she spent all her money. There was no way we could afford to pay an agency for her care. But with Bayada and her walker we were set on the right path. All I had to do was spend weeks making dozens of phone calls and hoping an agency would respond, and hours with the state Division of Aging and a Medicaid attorney learning about the Medicaid Waiver, the Miller Trust, and our options, signing papers and taking care of as many legalities as were necessary at the time. I already held power of attorney for Emma; that we had set up a few years before when she was still of sound mind but had forgotten to pay some bills.

Finally, we got signed up with a Medicaid-paid healthcare agency and got an aide who is very good and has been with us for two and a half years. In fact, if it weren’t for this wonderful aide, I wouldn’t be using the agency. I find their lack of communication and general thoughtlessness astounding. Maybe it’s just because I am old and things have changed; for it seems that most business entities slack off these days – yet get paid, nonetheless.

Two nights ago, Friday, July 1, at 7:40, as I was stirring my homemade spaghetti sauce with tomatoes and basil from the garden, a guy from this agency phoned me. “I just called to tell you,” he said, “that your aide will not be coming back. You’ve run out of Medicaid hours; that is, until October.”

That’s how you fire people: tell them at end of the day on Friday. Our aide had been with us faithfully, patiently and reliably for two and a half years.

–Samantha

XIII. Maybe I Shouldn’t Eat Chicken, but Some Veterinarians Eat Dogs

This week I had a terrible time getting a veterinarian for our little blue (smoky black) teacup poodle, Jetta. She was coughing and in pain around her head or left jaw. Suddenly she didn’t want to run up and down steps and when I’d reach to pet her, she’d yelp even before I touched her. Occasionally she had exhibited the pain symptoms in the past; I attributed the pain to maybe her teeth, which she had been losing over the past year or so. She turned 11 on June 24. (The first couple of teeth I saw on the floor, I’d pick up and study and wonder, is that Emma’s or Jetta’s? I determined they were Jetta’s.) So, this time, I thought maybe she had a toothache. Too, she appeared to have an infected spot on her lip. Yet, she was coughing rather persistently. Again, this began a year or so ago, when she’d cough if the weather was humid and especially when she’d been sniffing grass. I thought she might be allergic to something.

Now, however, her pain persisted and the cough worsened. It seemed that when she followed my encouragement to run up or down the stairs, she might be experiencing a jarring pain, like when you have a headache and any movement makes it reverberate. Jetta kept her tail plastered down and she stuck right by my feet, or Emma’s walker, to the point where I avoided sudden movements at peril of stepping on her or kicking her. She’s little, smaller than many cats, dark and hard to see in a dimly lit room.

My not having a car and having to wait until an aide was here to care for Emma made it tricky scheduling an appointment with a vet. The first vet I called said the earliest they could get Jetta in was in two weeks; the second and third said the earliest was in a week. I didn’t want our little dog to suffer with pain for a week. I mean, how would you like to suffer with a headache or toothache for a week? (Of course, I could only speculate what was ailing Jetta; I asked her to tell me, but she just couldn’t get the words out.) The second vet I called makes house calls – for $150 – but even though she was driving right by our area on her way downstate, would not have time to stop.

A young assistant in the office of the third vet said that when the doctor came in, she would tell the doctor my situation, and although I had scheduled an appointment for a week away, the vet would call me to discuss the case and determine if I needed to bring Jetta in sooner. This conversation took place at noon. The vet was to call by 6:00; she never did.

At dinnertime, neither Jetta nor Emma ate. Jetta curled up in her little bed near the dining room table, and Emma sat and stared at her food. My prompting and coaching, placing food on her fork proved fruitless. Well, actually, Emma did eat some cherries; she spit the stones into her salmon salad.

That night I called the vet’s emergency number, left a message and she called me back. She said, “I don’t know why the staff never gave me the message. We had a pleasant chat, even discussed the upcoming vacation of my friend who had recommended this vet. She instructed me to call the office manager in the morning between 8 and 9 and she – who “is very good” – would arrange to have a staff member stop by my house, pick up Jetta and take her to the office for X-rays to make sure her heart and lungs are okay in case they needed to extract a tooth. I felt relieved.

The next morning I called the office manager at the prescribed time and she said, “Oh, well, I’ll have to ask the doctor.” Of course, I said, well, the doctor told me to tell you …”. Exasperated, I left my phone number. Two hours passed, and no call. I called them back. “Oh, I talked to the doctor,” said the office manager, “and she said we can’t take you. We don’t have enough staff. You’ll have to call [the second vet I had tried]; they do house calls.”

I wonder, why would you become a veterinarian and then let an animal suffer? Solely for the money? “Oh, you’ll just have to let her suffer for a week.” How is this any different from the chicken farmers who cram hundreds of distressed chickens into coops?

I cried. I was so upset. I rarely cry these days; it seems more productive to take action than to sit down and cry. I also sent a distress email to my friend, R. He called me right away. “Find a vet,” he said calmly as I sobbed over the phone, “and I’ll drive you there.”

I called an animal hospital about a half hour away and they saw her that afternoon. The doctor pulled out two of Jetta’s very loose lower canine teeth, gave me an antibiotic and said the coughing was probably caused by cartilage in her trachea somewhat collapsed, as occurs in older little dogs, so that when they get excited, they cough. She gave her an antibiotic. She said to call her in a week and let her know how Jetta was doing. She said that unless I wanted to, we did not need to do X-rays and other tests at this time, because her examination showed Jetta’s heart to be strong, her lungs clear and her temperature normal. During her visit, Jetta was hyped up, her adrenaline rushing due to her adventure; so, it was like, “What sick dog…?” She seems a little better, but still in some kind of pain, though not as extreme. I am still concerned, nonetheless.

The vet asked me if I wanted a pill-form or liquid antibiotic. I said liquid, because years ago Kolia, my husky/wolf/German shepherd (black with blue eyes), would say, “Pill? Oh, not a problem.” And then later I’d go and find that he had spit it out in the corner. Jetta is very good about taking her medicine, albeit with a mild “Gakkkkchhh.” I think she thinks it has a funny flavor, and she goes and drinks water afterwards.

Jetta still waits for me to carry her up and down the stairs. But, she calls to mind my sister’s sheltie who at one point had some kind of inability to climb the steps in their split-level home. So, my sister would carry him. One, day she had to race up the steps without first stopping to pick him up. He ran right up after her.

–Samantha

XII. Les Preludes

What is our Life but a series of Preludes to that unknown chant, the first solemn note of which is sounded by Death?

–Franz Liszt: His statement prefacing his symphonic poem, “Les Preludes (after Lamartine)”.

As soon as we settled into our Victorian house in 2002, I made it a point to get involved in our community. It was a good way to meet people, to learn about the community and region, to help ensure that our town be a good place to live, work and play; I knew, too, that ultimately I would need the support of these new friends I was making. I joined the board of directors of our Main Street association, where in particular I helped put together and administer our annual historic homes tour. I chose the location of our house, in the historic district, so that I could walk downtown – for the exercise and fresh air and in case my car wasn’t running, I could still get to some stores. I joined the proprietor, Jackie, of our local store, The Gathering Place, that sold “herbs, spices, teas, coffee and oddities”, as she termed it, cross promoting the store and friends’ artistic and nonprofit humanitarian ventures through a series of wine and cheese receptions. I have listed these people and their organizations here on my home page. Jackie hosted me at one of these events, my signing of the wall calendar I created featuring my photos of historic buildings around town. Jackie also sold books at the Gathering Place written by local authors about the history, lore and ghosts of our region. I wrote a chapter published in one of those books. I think the best thing Jackie gathered in her store was the local lore. Everybody, it seemed, visited The Gathering Place, located in the center of town. Among those who stopped in were the old timers who had plenty of interesting stories to tell – the ghosts, whom everybody has seen (me, too – and maybe that’s whom Emma is smiling at sometimes), the narrow spaces between the walls where runaway slaves were hidden, the long-gone hotel and amusements on our nearby Delaware Bay beach. The open, warm, and friendly citizens in our town welcomed us even before we moved in. I have gotten to know many of them and made some good friends. And, even though, sadly, The Gathering Place is now closed, happily many of these friends are still here in my life, including Jackie.

During my early years in Delaware, I also wrote feature stories for the Wilmington News Journal, the daily newspaper; The Bystander, a magazine serving the Delaware beaches; Delmarva Quarterly; and Middletown Life Magazine. You can read my stories in the latter online. Nothing like spotlighting my own performances here – minus the wine and cheese, despairingly – but I say this to show that I got to know many of the initiators and influential people in the area and much about the region historically and geographically, including some of the initiators of the Coastal Zone Act, who sadly passed on recently.


It is good that I became so involved: one, because I found the people and history fascinating; two, because as my involvement increased, my family’s decreased. My brother lived in a town 20 minutes away. He used to come and repair things around the house, but he stopped. (Fortunately, I found a great handyman to replace him.) My brother rarely visited our mother. The occasions we did see each other were usually on holidays when we’d go to his house for a cookout or a Thanksgiving or Christmas roast. (In his defense, he daily traveled two hours roundtrip to work and his daughter and three young children moved in with him and his wife, after he had raised four children of his own.) Then, about a year ago, he retired and he and his wife moved to North Carolina (his mother-in-law had passed on a few years earlier).

As it happens, my brother lives an hour north of my daughter, who with her husband and my two granddaughters moved to the state from Southern California two years earlier.

My daughter and I were elated initially to know we’d be living just an eight to ten hour drive apart. Then, Emma became too frail to travel and my daughter found the long solo drive difficult. Furthermore – my daughter’s name is Kellie, and her daughters are absolute Kellie facets, so I call them The Three Kellies – the kids have become busy with school and activities, you may know how it is these days, and Kellie got a part-time job. They’ve got their summer completely booked without scheduling us in, so I don’t know when we’ll see them again.

History is a series of causes and effects, said historian and author David McCullough in a recent TV conversation with Charlie Rose. (He said also that the most important thing in life is family.) So, here I am, just me, Samantha, with Emma and our little teacup poodle, Jetta, my belongings still in storage in California, no car, a bicycle with rotted tires, a handful of helpful friends here and beautiful friends across the Internet who live in California and across the country. Oh, yeah, and a walnut tree growing in my flowerbed in front of my porch. The squirrels exchange walnuts for tulip bulbs, et voilà, an eight-foot tree in my flowerbed. The tree was a three-foot stalk this spring. Now it is up to the roof of my porch. By the time I finish writing this, it’ll be higher, nearly up to Emma’s bedroom window. It has grown about five feet and sprouted a second trunk section, spreading across my patch of front lawn. I sit on the porch and watch it grow. No, no, it’s not a beanstalk – I had one of those in my herb garden – I thought the giant would climb through my upstairs bathroom window. I had the beanstalk removed. I gave to our Hospice nurse, Tess, a walnut tree that was growing out of the house foundation and transplanted another from the flowerbed to the backyard. My next-door neighbors will be so pleased in 10 years when the walnuts start dropping into their yard. But, there again, it’s family – these walnut trees are descendants of the two venerable walnut trees in the backyard of the pre-Revolutionary home on the corner three doors up. Those trees must be 250 years old, and their offspring, thanks to a family of squirrels, live in our yard.

–Samantha

 

XI. Alone

Wednesday morning, June 15, a young woman from our Hospice agency phoned me at 8:00 to inform me that my aide had a vacation day. (She may as well have said, Good morning, Samantha. Welcome to your day. This is how it will be. This is your mission. You have no choice but to accept it. We do not care if you might have plans of your own. We have to serve our own needs. You do not count.) Blown off again. Agency personnel have told me that these vacation days must be requested and approved in advance. I had made plans with a friend who had called me late the previous day, Tuesday, saying that finally he had a day free and could drive me around town, in exchange for my filling his gas tank, to shop for items I had been out of for months. Upon thought, utilizing my ingenuity and the kindness of others that Wednesday to plug the gap, I was able to get my other aide, coming from the healthcare services agency, to stay a little longer and the Hospice chaplain to come earlier and stay longer than she was scheduled. Her doing so meant that others of her patients had to patiently rearrange their schedules. It’s that head domino effect – when the first one falls….

The day before, on Tuesday, my Hospice aide, a Certified Nursing Assistant, arrived at our home as scheduled at 10:30 a.m. The aide helps with Emma because Emma can do nothing for herself. For example, she may get confused using her walker and fall, or choke when she eats. As the aide walked through the front door, she told me that her superior had ordered her to leave our house no later than 11:45 to attend a mandatory CNA meeting at noon in their office 40 miles away.

Since my car quit running and I sold it for parts a few months ago, and since I am my mother’s sole caregiver, unpaid, and we have no family nearby, I must rely on the kindness of friends to drive me to the store. Too, I must be home unless an aide is here, to attend to Emma’s needs. Tuesday, a friend was coming at 11 a.m. to take me to the supermarket. We had made the appointment a week earlier. I had told my aide.

My friend is going to Hawaii for a while, so this is the last time she will be able to take me to the store for a month or two, and there is no one else available to drive me. Thus, I had to stock up. Besides, we were out of things we needed. My friend could have come earlier, she told me, as I eased into the tan leather seat of her top-down Sebring convertible. But I didn’t know she would need to, until 25 minutes before she was to arrive.

I gathered my groceries as quickly as possible, even had store personnel go around and find things for me to hasten the trip. And, then, pressed as I was, I couldn’t find the olive oil even though I had walked past it three times.

The aide’s duties at our house were to get Emma out of bed, bathed, dressed and fed breakfast. (Had she stayed her full time, she also would have given Emma range of motion exercises, and attended to her dental hygiene and toileting. I don’t know if any of these duties were executed.) Should Emma not finish eating breakfast before the aide left, the aide’s superior had instructed her to interrupt Emma’s breakfast, so she wouldn’t choke, and take her to the living room where she would leave Emma sitting on the couch with her little dog, Jetta.

When I arrived home at noon, the aide had gone. Emma and Jetta were alone, snoozing on the couch. They were all right. But Emma could have gotten up, used her walker, gotten confused and fallen.

This is the second time this Hospice agency has left my mother alone. The first incident occurred when I was out shopping at the Mall, 20 minutes away, a year or so ago. An aide from the healthcare services agency was at my house. She was a substitute, since my regular aide was out ill. This was her first visit to our home. She was to wait until the Hospice aide arrived. The Hospice aide called her office to say she would be late. I carry my cell phone with me. Hospice never called me, neither on my cell phone nor on my home phone.

The healthcare services aide left. She wrote me a note and signed her name, saying she had to go and what time she left. My mother was alone for two hours without my knowledge. When I arrived home, and called Hospice to find out where my aide was, they informed me that she had been at my house 10 minutes before I arrived home, trying to get in, but no one answered.

And, by the way, the state Division of Aging is of little help in these matters. They are nearly impossible to get through to, rarely returning my phone calls, and when I do get through, often misaddressing the issue – or artfully stepping around it as if they were in the middle of a cow pasture.

All the while, throughout these two days, the weather was award winning, sunny with temps in the 70s. An extended family of birds chirped and sang delightedly within the lush green leaves of the North American dogwood outside my upstairs bay window and the window of the adjoining room, my studio, like a tree house, where I write this blog.

I suspect I am not the lone caregiver experiencing these issues. While these are the only two incidents aides and agencies have left Emma alone in the three and a half years we have had help, there have been many occurrences when my regular aide – we have an aide or two in tandem come for up to three hours Monday through Friday – is off unexpectedly (to us, at least) and I have had to cancel my plans. Forget about planning a luncheon outing with friends. Even if the agency gives us a substitute aide for these hours, I must be here to show the aide where everything is and what needs to be done.

The failure of the White House and the Congress to extend the extra federal funding for Medicaid, effective July 1, does not help, either: Emma is number 17 on a slow moving state list (like, a spot opens when someone dies) for the state Attendant Services program, wherein funds are placed into an account to be paid the caregiver, whether it be me or someone I hire, for 30 hours a week. I would hire someone so that I can work to earn money to finance my future. Instead, I am working as a full-time caregiver unpaid, thus saving the taxpayers and the government, over the course of Emma’s declining life, hundreds of thousands of dollars, while I collect a little social security. I do not know what is going to become of me. I begin every day stepping into an abyss. As a result of these funding cuts, costs will rise in other areas of the healthcare system, according to The New York Times. Moreover, when I receive the Medicare statements, I find it hard to wrap my mind around how much Medicare pays these agencies – billed in 15 minute increments, payments are approximately $200 per aide, $300 per nurse visit, and $600 per social worker visit. The statements do not show the cost of doctor’s visits.

Oh, and as it turned out, my Hospice aide was mandated to leave my mother alone to attend a party, a surprise party for CNAs.

–Samantha

 

X. The Human Condition

I awoke this morning with a pain under my right front ribs. I hope it is not my liver. Rather, I hope it is from the baked ziti with sweet Italian sausage and roasted green bell peppers I made and ate last night, that it is a spicy cheese ball that will move along. Emma ate practically none of the ziti, and it is one of her favorites. In fact, she used to make it sometimes so that it would be ready for us to eat when I got home from work. The recipe is on the back of the San Giorgio ziti box; I just add the sausage and peppers. Maybe I served the meal too late. I was busy working on my blog and didn’t want to quit until I had completed my project. Emma gets too tired to eat if I serve the dinner too late. Sometimes I have to think of myself first, save myself, and work towards my future – unless it is my liver and not a cheese ball. Ninety-nine percent of the time I put Emma first. Last night, though, I served dinner a little late. Normally, on those rare occasions that Emma skips dinner, she makes up for it the next day. We’ll see.

I awoke from a dream where I was exhausted and couldn’t wake up. In the dream I just felt like sleeping but wanted to be awake so I would be involved in the activities around me and wouldn’t miss anything. I wanted to be aware of what was going on. (This is pretty much me in general, I think. My father frequently announced to those among us that I was afraid I’d miss something.) Now, too, I wonder if this is what Emma experiences sometimes – that there are people around her and things going on and she’s trying to interpret them. In her earlier stages of dementia she used to ask or would say what she thought was going on. In one instance, over dinner at my brother’s house, she told the two of us to stop quibbling. We weren’t quibbling; we were just carrying on an animated conversation. Of course, being hard of hearing, even if her mind doesn’t work right, in any case she can’t decipher what is being said most of the time. It must feel like drowning. At least that’s how my dream felt. My Hospice nurse, Tess, and social worker/bereavement counselor, Geri, were here in my dream and both my home health aides plus a new aide, a young guy, a tall, skinny guy with short, silky, dark blond hair and light eyes. He seemed nice enough, was making the effort. I was sleeping in the center of activity in the living room or dining room on a sort of high studio couch – it wasn’t a hospital bed. I kept falling back to sleep, I was so tired, yet I wanted to get up. Occasionally I did get up. Then a newspaper photographer came and took pictures of me and the new guy standing beside each other. Tess and Geri were in the kitchen with Emma and others and, tired as I was, I went in there and tried to make out what was going on.

I don’t mind so much the dying, it’s what I’ll miss when I’m gone. I am curious. I want to see what happens next, even if I don’t want to be there for it all; I’m outdated for many new things already. My father said to me a few years before he died, “I wonder what it’s like after you die.” I asked him to let me know. Either he hasn’t or he does all the time and I’m just not receptive enough to hear. He died in 2004 at 90 when his aorta split. He was lucky: he didn’t suffer, he had a good life, a healthy life, and he went fast, at the end surrounded by his family – wife, children and grandchildren.

Somehow the movie I watched two nights ago triggered this dream and these thoughts – probably spurred by the condition of finding oneself in unintended circumstances, seeking a way out, yet seemingly irrevocably entangled in one’s own sticky nature. And well this story might trigger a dream – it is incisive, the writing and storytelling impeccable, the best of the best, one of the great classics. The movie, recently released on DVD, is The Duel, based on Anton Chekhov’s 1891 novella. Chekhov’s story is set in a seaside resort on the Black Sea in the Russian Caucasus in a sultry midsummer. The movie, however, is filmed entirely in Croatia. The scenery is gorgeous, the settings colorful and authentic, Dover Kosashvili’s directing is excellent. Actor Andrew Scott’s superb portrayal of the angst-driven Laevsky, the protagonist, is memorable. There is nothing like Chekhov’s observation and clever perspective to evoke deep thought and compassion for the human psychology and condition.

Above all, great literature, works of art, great thought, great music and great landscapes, as well as the people closest to me are what I would miss the most when I die. So, come visit – bring a book, a movie, music, some wine and stimulating conversation. I will have had a good rest by then.

–Samantha

 

 

 

 

 

IX. The Last Drawing

Emma settled into the white chaise in the corner between the two windows in her upstairs studio. She pulled out the big sketchpad I had bought her for her 90th birthday. With pencil she began sketching the figure of a woman. That was in 2005. She never finished it. I still have it. I have saved it as is.

Around that time, I gave her The DaVinci Code to read. She read it and when I asked her how she liked it, she said she liked it but it was hard to follow. It is hard to follow, I thought, keeping track of all the codes and clues, and because she was 90, I just figured it would be harder for her to follow than for me.

She subscribed to daily newspaper delivery, and every day she would sit on the couch in the living room, by the window, and do the crossword. In time, I noticed she wasn’t filling in all the boxes as she used to. Then, one day she set the paper aside and didn’t do the puzzle. I asked her, “Aren’t you going to do your crossword puzzle today?” “No,” she said. She didn’t do it the next day or the next day or the next or ever after. I think that was around the time I noticed that she was struggling with arithmetic figures – which she was always very good at — and paying the bills, and that’s when she told me she thought she had forgotten to pay the mortgage the month before.

I was working full-time. My job sometimes required me to work late. I would always phone her to let her know I would be late, yet she would be angry when I walked in the door and give me the cold shoulder. In the past, she would have been understanding.

One cloudy night I came home and she was standing at the window at the top of the back stairs looking out across the trees. “I’m worried,” she said. “There’s something going on, something wrong. The sky’s all orange.” “That’s the city lights reflecting off the clouds,” I reassured her. She wasn’t completely convinced.

She was no longer driving, because her white Caddy needed expensive repairs and we sold it. My brother sold us his ’92 red Chevy Lumina Z-34. He had bought the car for himself, and had over $3,000 worth of work done on it, including upgrading the computer. It was a hot car. But then he was given a company car, so he didn’t need it. Emma didn’t like to drive the “Red Racer”, as we called it; she preferred her Caddy. Besides, she couldn’t go anywhere while I was at work, because I had the car. I was out getting speeding tickets. One time, on a residential city street, a motorcycle cop popped out from behind a bush like he was hatched there. I caught my tongue just before blurting, “Oh! Where did you come from?” I learned to use cruise control every place I’d go.

Further cutting Emma off from the world was her inability to hear much. She had become hard of hearing about 10 years earlier and had a hearing aid for each ear. Then our dog, Jetta, chewed up one when she was a puppy, and somehow the other stopped working. When I asked her if she wanted to replace them, she said no. That should have signified to me that she wasn’t thinking clearly; but then, sometimes she’d do something that my brother and I considered screwy like that.

There was the time back in the early 1950s before our parents got divorced when she was frying French fries in a deep pot of oil on the kitchen stove while standing on a ladder painting a mural on the bathroom wall at the other end of the house. The French fries caught fire. I was in the living room. Through the dining room I saw smoke and the reflection of flames flickering on the open swinging door between the kitchen and dining room. I ran and told Emma and then raced outside, running between the front door and the back door of our little ranch-style house. Just then Daddy came home from work. “Daddy! Daddy! The fire … the pot’s on fire!” I yelled. I was frantic. Daddy rushed in, put the lid on the pot and carried it out the kitchen door to the back yard, away from the house. It could have exploded in his face.

Well, we were all safe and there was no damage to the kitchen. The painting was beautiful, a tropical scene in bright, tropical colors – green palms, pink flamingos, blue water…. The people who bought our house after our parents’ divorce were fortunate to receive such an exquisite wall mural.

Now, as I sit at my keyboard, I have such an odd feeling, one that I cannot describe, as I collect Emma’s paintings in my computer file folder to upload to her gallery here. She has nothing to do with this. She does not know. Would she like it that I am displaying her artwork on our Internet gallery? I hope so. She had offered them for sale when she lived in Florida. She had painted many as gifts for each of her friends. She painted a single deep pink rose and gave it to me. She loves roses and all flowers and always maintained a color-coordinated by-season flower garden.

Presently she is so weak. Her body is gradually shutting down. She is done here – done admiring the flowers, done drawing her paintings, done planting her garden.

Now it is up to me to carry on. She no longer cares. What does it all mean? When will I no longer care? What should we care about? And what should we not, what need we not worry about, or concern ourselves about?

–Samantha

 

VIII. Moving

Jetta, Emma’s 11-year-old blue teacup poodle, is given some people food with her dinner. Then she comes to my chair either effusively thanking me for the exquisite meal or pretending she’s the other dog and hasn’t gotten any, I’m not sure which. (The poodle people designate Jetta blue because her father was white and her mother black, white flecks in her black coat.)

Jetta denies that she has inherited a gene from her great-great-great grandfather Jedediah Wolf that makes her swallow her food whole and then forget she has eaten it.

Emma once raised toy poodles. She had a small kennel, showed her dogs, and one, little black Itzy, became a champion. Itzy wasn’t much bigger than Jetta.

Emma had gotten Jetta just before I arrived in Wilmington for my “visit”. Jetta was a feisty puppy, demanding, but also, as Emma noted a couple of years ago, “She’s a sensible little dog.” Jetta is my gauge of how well Emma is doing. If something is amiss, Jetta points it out: “Umm, Samantha…? Ya gotta see this.”

One night early into my Wilmington “visit”, Jetta got limp and her gums and tongue went pale, almost white. We got into the car and rushed her to the emergency vet’s. The vet didn’t know what was wrong, but he gave her some medication and she was fine the next day. My guess is, that she had gotten into whatever BeeGee had, but because we rushed her to the vet’s she lived.

Before I decided that my visit had turned into permanent residency, my brother suggested we look around for an apartment for Emma close to where he lived, so he could keep an eye on her while I resumed my life in California. We looked around, but apartment rentals near him in his town were either too expensive or in undesirable neighborhoods. My brother and his wife were already caring for his mother-in-law who was terminally ill.

Ultimately, it became obvious that Emma needed someone to be living with her to watch over her.

Emma’s apartment was small. I had furniture and belongings in storage. If I were going to stay, we’d need a bigger place. So, we looked for something to buy. My brother often went with us to inspect the condition of the house. Emma wanted a ranch style, although she was partial to Cape Cods, and many of the newly constructed homes – we were in the middle of a housing boom here – were Cape Cods or otherwise two stories. Emma didn’t want to have to climb stairs, though. We three would enter a house, spread out to look around, and then, finding my brother, I’d say, “Where’s Mother?” “Oh, she went upstairs,” said the salesman, just as we spotted her coming back down – that quick.

Ultimately, we found this charming 1894 Victorian in the historic district. We bought it and in August 2002 moved in.

Jetta was thrilled to be able to run up and down the stairs and have so much space to explore, after that cramped apartment.

Then she met her next-door neighbor, Bootsie, the cat, impeccably dressed to the nines in his tuxedo, white whiskers gracefully flowing. “Well, hello there,” he said to her, hand on hip, towering over her. Daily, they’d greet each other with a little kiss on the nose. Jetta would attempt to chase Bootsie and he’d roll over onto his back, Persian-like snowy white chest and tummy fur exhibited, always wearing a broad smile beneath his large, pale green eyes.

We thought Bootsie was gearing up to run for mayor, but then last winter, he moved to a nearby town. Jetta now has to content herself chasing squirrels – albeit from her leash – and the nice bunny rabbits that eat my lettuce and carrots in my herb garden. (The squirrels simply exchange walnuts for the tulip bulbs I have planted. Consequently, in my flowerbed, instead of tulips, walnut trees grow.)

–Samantha

 

VII. Brownouts

This morning I looked out our kitchen window to see that my next-door neighbor had elected to do some gardening – their yard looks like a park – and, tan, wearing shorts and a neckerchief headband, was down on her knees in the blazing sun, digging away at something. She had a huge fan plugged in outside, blasting air on her.

Yesterday morning, Emma was nearly too weak to make it down the stairs. The aide almost carried her down, steadying her, encouraging her to stand up, propping her up, for she kept wanting to sit down. Fortunately, Emma weighs only 75 pounds – even at a mere five feet tall – well, she’s a good deal shorter than that now because she’s all hunched over; she looks like a Holocaust victim. We got her downstairs, finally, to our immense relief. Utterly confused – more so than ever –, she remained weak, listed in her chair at the dining table and had to be coached to eat and drink. Yesterday afternoon I heard her moving about, came downstairs, and found her sans walker, which she had parked neatly against the wall, and inching her way around the perimeter of the dining room from one piece of furniture to the next, holding on for dear life.

It is still so hot and humid here; our three window air conditioners have to work hard. Last night just as we had finished dinner, the power went off: pitch black. A transformer up the street blew. I went upstairs and got the flashlight. I know how many steps we have in each staircase, front and back. So, I count the stairs in the dark. That’s not to say that once upstairs, I didn’t bump into the bedpost and trip over furniture. Finally, flashlight in hand, downstairs, I managed to get Emma up out of her dining chair and holding on to her walker, then, with guidance, into the living room and onto the couch.

About an hour later, when the work crew located the culprit transformer and the power came on, a woman across the street, whom I had been outside in the steamy night talking to, offered to come in and help me get Emma upstairs and into bed. This woman’s aging parents live across the street, both with acute medical conditions. She lives nearby and was at their house helping them when the power went off. She is so very kind, encouraging and praising Emma all the way upstairs and when I undressed her, and we got her into bed with ease. It helps to have help – and caring encouragement.

Emma had rallied a bit over the weekend to the point where I told Tess, our Hospice nurse, to cancel the hospital bed. I felt that cutting off Emma’s access to her bedroom, her luxurious king-size bed, feminine white comforter and matching sheets with the eyelet borders, and all her personal belongings would be like suddenly lobotomizing a part of her mind, that she regularly experiences enough of that loss without our help. But, then, after yesterday morning’s event, I reordered the bed. Getting her downstairs this morning was only slightly easier. Emma is simply weak. She needs to be reminded that she has food in front of her, often sits at the table with her eyes closed, and then with coaching, she will eat. At least she eats.

–Samantha

 

VI. Gone with the Wine in B-Flat Major

As soon as I master more of the mystifying machinations of WordPress, I will attempt to upload images of Emma’s watercolors and a few of my food photos to accompany my recipes.

Speaking of food, to add levity to my current circumstances, I am reading Peter Mayle’s Encore Provence, his third autobiographic work relating his and his wife’s adventures living in the South of France. Every time I sit down to read this book, I get hungry. This is because Mayle is writing mostly about food here – the pâtés, the flaky, buttery crusts, tearing off the end of a warm baguette and eating it on the way home from the boulangerie, and the wines, oh, the wines. Years ago Peter Mayle, as you may know, worked in England as an advertising executive, didn’t like it, quit and moved to Provence to write. I had read his earlier two books, A Year in Provence and Toujours Provence, telling us about his and his wife’s new life in the region, the colorful natives, the long French lunches, memorably the seven hour lunch that made him late for dinner, and the wines. I’m fond of calling such events here at home “Gone with the Wine.” Holding his book in my lap and reading it, I find Peter Mayle to be quite a charming companion. He could be sitting in the room, glass of wine raised, chatting with me. Mayle’s stories are fast reads, colorfully crafted with a fine blend of keen observation, English humor and hilarity. In 1993, PBS made A Year in Provence a mini-series, starring the late, great British actor John Thaw.

John Thaw also consummately portrayed Inspector Morse in the eponymous detective PBS Mystery series. Having missed this series when it first aired from 1987 to 2000, I have been watching it recently on DVD. There are 33 episodes, thankfully. It is the best mystery writing this side of Sir Arthur Conan Doyle and Agatha Christie. Colin Dexter wrote the Inspector Morse detective novel series. He made a cameo appearance in every TV episode, as you may know if you’ve seen the series. Colin Dexter had been a Morse code operator during World War II. Right up my alley, these stories: many scenes feature Inspector Morse listening to classical music as he drives in his classic burgundy Mark 2 Jaguar or relaxing at home – suddenly cut off, naturally, by a call about a murder (and he hated viewing the victim).

As I write this, I am listening to Mozart’s Serenade in B-Flat Major, K.361, “Gran Partita.” It is a delightful piece for wind instruments, an airy, equable and serene, charmingly orchestrated piece, in the color of soft cobalt blue, as my senses receive it. Sections impel you to bob your head from side to side, even get up and dance a gigue; other sections are simply calming; none, though, blue as in low spirits – this is quite a happy piece.

Speaking of Agatha Christie, I took a trip the other night on The Venice Simplon-Orient-Express, courtesy of PBS (and its supporters) and British actor David Suchet, who impeccably portrayed Christie’s Belgian detective Hercule Poirot in the PBS Mystery series, Poirot. Suchet took the train from England to Calais where he boarded The Orient Express and then rode it from Calais to Prague. My pleasure of sharing this adventure with him was my great escape and much needed. Ah, if I could take any journey, this would be the one; Emma, too, would enjoy it; she sailed on the QE II (the Queen Elizabeth II). What a history those individual Orient Express coaches have had – living through World War II – some used by Hitler – and before, each of the remaining now impeccably restored, after a ceremony attended by Princess Grace of Monaco who drew interest to the train and thanks to James Sherwood of Kentucky who put up the money, to the original with the Lalique glass, the Gérard Gallet interiors with veneers of wooden marquetry incorporating Eastern designs.

Emma, a lover of fine art, haute décor and travel would have loved this. Sadly, had I put her in front of the TV to watch it, nothing much would have registered. She probably would have dozed off. I despair that I cannot share these things with her which I know would fascinate her and she would enjoy. Emma is long gone; what’s left is an empty shell, impervious to being restored.

For now, here at home, I luxuriate in a virtual ride on the Orient Express and am bolstered by being in the company of these great artists.

–Samantha

 

V. “Der Müller und der Bach”

I woke up this morning and everybody was moving slowly. I sat up in bed and through the open window I could see in the hazy sunshine people walking along the street as if slogging through a puree of butternut squash soup. Even the big and little dogs in the backyard of The Circus People – that’s what I call them; more on them another time – on the corner two doors up seemed to be running and playing with each other slowly. Two of the circus women had blown up a kiddy pool and were filling it with water. Then they inflated the water slide. The temperature is already 78 degrees at 9 a.m. and threatening to be 92 with humidity around 97 percent, probably. It is only May 26, and it is already soupy summer.

Emma moves as if through thick soup all the time now. I thought it would pass. Her condition has precipitously declined in the past two weeks. Even with her walker, she steps gingerly and slowly as if she were navigating slick cobbles in a forest brook. She leans heavily on her walker – the kind with two wheels in the front and two legs in the back to which we affixed tennis balls – and drags it when she turns, scrapes it across the wood floor – aiyeee. I checked the wheels to make sure they were turning freely; they were. I was thinking of adding ball bearings.

The handsome young Dr. Patel visited Emma two weeks ago. “She will move more and more slowly,” he predicted, holding a crystal ball on his lap – well, so it would seem, for his prediction pulled into the station with accuracy and punctuality. Her engines were already slow, had moved at that speed of slow for months; she was on a plateau. That’s how it goes. She’ll be the same for a long time and then something happens – no one seems to know what – and she declines: she may fall, or a sudden decline may trigger the fall – it’s the chicken vs. the egg thing. In any event, she is cruising for a fall now, so I have to watch her closely. She is more confused about what to do next, or which way to turn, which foot to place first. She wants to sit down everywhere. She takes longer to process instructions and actions, if she completes the action at all, if she even receives the impulses. She is hard of hearing: “Did she hear me?” I wonder. Or, more likely it appears that her brittle and crumbling synapses are taking longer and longer to toss the message across the void, that forest brook, as it were, so the one on the far side can catch it; or perhaps the forest is empty – no birds singing their messages, no nerve impulses, no neurotransmitters released, the synapses have disintegrated. I cannot reach her.

As you might have sensed by now, often I feel as if I am drowning, submerged in this thick soup, the yellow roses Emma loves that I cut from the flower bed out front and place in a vase for her, may be roses sprouting from my grave. I have Hospice and nursing agency help about 10 hours a week, but the rest of the time is my responsibility; plus there is the responsibility of running a household. Call me Eurydice – hot as it is this morning, after I took my shower, I found all the radiators in the front of the house, upstairs and down, hot as blazes. The airflow regulator or some such part on the heater sticks sometimes so the heater won’t shut off, our plumber says. Last winter he went down into the cellar and banged on it a couple times and it helped somewhat. When that happens, I turn off the emergency switch for a few hours. The heater must run to heat the hot water. But the system needs to be drained and the part replaced, he says, to the tune of $250. Meanwhile, this morning, I closed the windows and fired up the window air conditioners, thus the A/Cs were blasting and so were the radiators.

We’ve lived in a Victorian house since August 2002. Until the past few days, to the amazement of most who know her, Emma has been able to negotiate the stairs, 16 of them and they are narrow and steep. Like most women of her generation, she has amazingly strong arms – all that laundry scrubbing on the washboard and dough kneading for those homemade buttery, flaky piecrusts. She gets a good, tight grip on the balusters to support herself and carefully climbs up and down. Today, though, I had nervous moments watching her come down, and then when the aide came, Emma wouldn’t go back up for her bath; she kept wanting to sit on the steps. Until now, I felt she was safer on the steps than wandering around the house with her walker. The balusters are the one place she can get a good grip.

My Hospice nurse, Tess, and social worker/bereavement counselor, Geri, came today. They both are so deeply compassionate and supportive. Geri visits once a month, Tess twice a week. Happily for me, they listen patiently. We decided today that Emma is going to have to remain on one floor – safer down than up. This is something Emma, my brother and I discussed when Emma and I bought this house, noting that this wonderful house would accommodate such an arrangement, with one bathroom up and one down. The nurse and I will rearrange living room furniture Monday to accommodate a hospital bed in there.

So much for having parties. And this house with its big bay-windowed dining room, high ceilings, intimate living room and big, square kitchen loves parties and having lots of people in. I need to engage in innovative thought here (on more platforms than one, obviously).

–Samantha

 

 

IV. Why Salmon Salad and Mozart

Why did I choose Salmon Salad and Mozart as my blog title? I like to eat. Seriously, I had already purchased the domain name intending to use my website for recipes, stories I have written and other entries – would that be entrées? But when I decided to write about Emma and me in my dementia caregiver’s journal, I liked the metaphor of the title. Still, I do like to eat, and I like to cook, although these days I don’t have much time for the latter. I do have plenty of time to eat, though, because Emma is such a slow eater. I could have eaten three meals and washed four loads of bed linens while she still dawdles over her dinner. Ah, I exaggerate, but not by much, or so it seems to me. I cut up her food in tiny little pieces and arrange it strategically on her plate, placing in the center what is most nutritious for her, because, with her fork she digs a broad swath down the center of her plate, eating that food first – usually – while sometimes inadvertently shoving the rest overboard onto the placemat in the dark night of her mind. At least she eats, and she’s not shredding her paper napkin as much as she used to; although she often does tear it carefully into tiny little squares, about one inch by two inches, maybe a little larger, folds it over, wipes her runny nose with it, and carefully places it on the tablecloth.

Emma was a good cook. She enjoyed cooking and hosting dinner parties for her family and friends. She had a summer home right on the beach on the Jersey shore (Southern New Jersey) where she hosted small groups of overnight guests, prepared three meals a day, made the beds, laundered the linens, cleaned, and saw that her guests’ beach accoutrements were well-appointed. Her friends raved about these events until their dying days. Her grandchildren, who eagerly anticipated escaping their parents in the city and undertaking teenage pursuits down at the shore, remember the fun and how strict Grandmom was.

Emma cooked and prepared gourmet meals until one evening in 2005 when she couldn’t remember how to use the microwave. Many nights she stood at the sink and washed the dishes until the night she fell and didn’t know how it happened. I found her crawling around, trying to get up off the kitchen floor. It was in 2005, too, that she sat at the dining table and said to me, “I think I forgot to pay the mortgage last month.”

{{{    }}}

I took over the bill paying and while she was still of sound mind, we set me up as her power of attorney.

Emma played piano from her childhood, and before she was married, taught piano. Later, she taught me. My brother and I grew up, in our early years, with a black Steinway baby grand in our house. Both my parents played. When she retired, Emma bought an electronic organ (a computer, really) and took lessons. I think it was one of her greatest joys late in her life to sit and play this organ. Amazingly, Emma could still play until about six months ago. She could sit at the keyboard and read the sheet music. Granted she played much more slowly than the composer intended, and she knew it: “I didn’t do it justice,” she said of one of her final performances.

As compositions go, I lifted the title “Salmon Salad and Mozart” from a chapter title of a romantic interlude in a novel I have been writing. That title came from this great – I think – salmon salad recipe I created; plus, I like listening to Mozart, especially at dinner and when I write. He is good for concentration, flow and relaxation.

I have uploaded my salmon salad recipe here, as you will find in my Recipe category. New to this blogging thing and WordPress, I must say I had a devil of a time getting rid of that recipe off my home or “Hello” page and into its proper category. It just would not go away. I resorted to beating it with a broom and still it kept popping back up like a Florida salt marsh mosquito when you smash it. Ultimately, I found guidance online.

Here, then, the metaphor Salmon Salad and Mozart symbolizes an exquisite mixed-up mess.

–Samantha

 

III. Lowrider

I stayed in Florida another year, and then came north, too, to visit family before heading west and home to California. I sold my white 1990 Nissan Stanza, which needed work, and bought a white, with red leather interior and sunroof, 1984 Mercedes 420SEL – a grand touring car with long wheelbase and very low mileage. Why the low mileage? Why, because it had been sitting for a very long time. “Trust me,” said the salesman.

I boxed up all my stuff – clothes, books, sheet music for my two acoustic guitars (the guitars I carried with me in the car), journals – everything and shipped it to California to be put into a storage unit where the rest of my belongings already were, awaiting my arrival. I packed into the car necessities and music tapes and CDs, everything that would fit. I stuffed the car to the gills.

From Naples, I drove north on Interstate 75. When I got to Cape Coral, about 40 miles up the road, the tires flew apart. They were dry rotted. I left I-75 and drove, gingerly, to a tire store just before it closed and had all four tires replaced. Motoring on, I got to Lake City, Florida, where I-75 meets I-10 and began hearing this whirring sound under the rear of the car, like that of a helicopter rotor. When I got to Jacksonville where I-10 connects with I-95, the whirring sounded measurably louder. I turned up the music. Rain began as I neared Fayetteville, North Carolina. The rotor sound crescendoed while a fortissimo squeak came in and played pizzicato above it. I had to stop. AAA towed the car 35 miles to a Mercedes dealer downtown.

I enjoyed my five days in Fayetteville. In those sunny, crisp October mornings and afternoons, I left my little motel and walked around downtown, strolled the college campus set on green lawns among mature conifers and deciduous trees, stopped at a quaint used bookstore and bought some books. The townspeople were friendly and accommodating, the drying leaves tinted in gold, scarlet and ochre, falling from the tall trees heavily wooding the area smelled heavenly; overlooking the valley through which I-95 ran, I felt as if I were on a kind of a perch … it was really quite pleasant; I thought I was going to have to live there.

The rear axle had broken on my car and gasoline was leaking into the trunk, leaking all over my portfolios of landscape photography and photo note cards. Well, look, I’m not that fat, and I didn’t have claw-foot, cast iron bathtubs in the back seat or anything like that; well, I did have some books and stuff, but I could see out some of the windows. Truly, I had loaded the car down; all I needed was a maroon tassel strip lining the top of the windshield and I’d look like a Mexican lowrider. I went to the UPS store, unloaded the car, boxed up most of my things and shipped them to California.

Five days and several thousand dollars later, the car was repaired – not completely, but enough to get me to Wilmington, Delaware. I left Fayetteville at 5 p.m. and arrived in Wilmington at 1 a.m. My mother was waiting up and ready with food for me after my long trip. I couldn’t just haul off and drive to California now because I’d spent my money on the car. I had to get a job. I had no clothes, not even a winter coat. I got a job at a department store where with my discount and position to see when clothes went on sale, I could buy clothes for a good price; and my step mom gave me her mom’s brown London Fog winter coat – her mom had just died after years of suffering with Alzheimer’s.

I was saving my money to go back home. However, Emma’s condition had declined. She had been feeling too unsteady on her feet to descend the Mayan-temple-height flight of concrete steps behind the apartment house to take out the trash. Moreover, she wasn’t always taking her blood pressure medications. She needed help. I knew I’d have to stay in Delaware. I felt the floor of my chest open and my heart plunge into my stomach.

––Samantha

 

II. Are You Doing This on Purpose?


“Are you doing this on purpose?” Often that’s the first thing I want to ask Emma. Well, of course she is. Why else would this be happening? Or, well (pun on the author’s name absolutely intended in this bizarre and often contradictory new world in which Emma and I now find ourselves), maybe not. In any case, look in the mirror – you (as in “I”) may be next.

I died in 2001, in October. That’s when my life as I knew it ended; that’s when I as I knew myself ceased existence. That’s when Emma began to lose herself, too. But I didn’t know it yet.

I had lived in Redondo Beach, California, for 30 years, my entire adult life so far, raised my daughter there. Then for the winter of 1995 I decided to go to Naples, Florida, for a working vacation. I could stay with Emma, who owned a villa there. I stayed longer than I planned; I liked my job. Then Emma suffered a mini stroke. Her blood pressure was through the roof; the doctor put her in the hospital for a few days, on oxygen.

When we took her into the hospital and were in the emergency room, the doctor came into our little area and said, “Do you know what time it is?” I very helpfully looked at the clock on the wall and told him. Oh. He was asking Emma, to test her brain function. She was O.K. She did know the time. That was in about 1996. Emma was 81. But, good thing I was there when the mini stroke occurred. She told me at the time, “I started to take out BeeGee (her apricot toy poodle) and got dizzy and suddenly lost feeling and movement in my right arm and leg.” We called the doctor and rushed her to the hospital. I guess I was meant to be there; I don’t know what would have happened to her had I not been.

She recovered and was fine after that. Meanwhile, though, looking back, I can see now that she exhibited what may have been small signs of dementia – making less than the best decision, being a little less capable, overlooking something, sometimes being mean. But, generally, she was herself. After all, she was in her 80s, and doing great for that age.

BeeGee (nickname for Beau Geste) was a sweet and noble little man – who chased horses across the TV screen and into the other room – and thought I was God. Every time a Florida thunderstorm would come, BeeGee would quiver and quiver until the storm got over us and let loose. The stronger his quivering the more violent the storm coming. Lightning and thunder unleashing their powerful blows, BeeGee would run and hide in a dark corner in the hall between the laundry room and bathroom. The storm continuing, he’d come to me in my room. I’d pick him up and hold him in my arms on the bed with me. By then, the storm had subsided, and I’m quite sure BeeGee thought I was responsible.

In 2000 Emma sold her villa and moved up north to be near her family and friends in Delaware. I drove her and BeeGee up there in her white Caddy; she and I shared the driving. I left Emma and BeeGee at the Atlantic City airport on a rainy Sunday morning and flew back to Florida. Little did I know, that was the last I would see BeeGee. Some weeks later, Emma called me to tell me he had died – gotten into some rat poison or something in her apartment. She held him in her arms while his life seeped out of him. He was only 4. Emma blamed herself.

––Samantha



I. Introduction and Prologue

You will know us as Samantha Mozart and my mother Emma. These are not our real names. I choose these to preserve our privacy and my mother’s dignity.

Emma has dementia. I am her sole caregiver. Emma has led a good and long life. She is 96*. She was once a great beauty; involved in modeling; small, petite and feminine; prettier than most. She was detailed oriented and an artist, became a watercolorist after she retired from her secretarial job. Guests entering our home say it looks like an art gallery; her paintings hang on the walls in every room.

Emma played this piano caprice all her life, until about six months ago when she sat down at the keyboard, read the music, played it very slowly, and said, “I’m not doing it justice.” Watch the YouTube video of J. J. Sheridan playing it.

 

It is not easy for me to write about someone and something so close and personal. Aides and friends have suggested to me that I do this, though, hoping that my experiences will help others; and – just possibly – disperse the dross of events I daily dump on them. I am lucky to have such good listeners.

Emma no longer listens. Most often she no longer or barely reacts to me or others. I would place her in the latter intermediate stage of dementia. How does dementia differ from Alzheimer’s? I don’t know. I do know that Emma’s doctors have diagnosed her with dementia, and her condition began as dementia – forgetting simple things – while she still remembers people’s names when I talk about them, when she can hear me – she’s hard of hearing, too –, and who most of them are when she sees them. Me, I sometimes think she would rather not see, so she has told me on occasion: “I’ll have you fired!” One could only hope. Kidding. More on that later.

Meanwhile, welcome. If you know someone with dementia or are a caregiver, or are just interested, come along with us on our journey. At the least, we can support each other, and maybe glean new insights, as well, into this dreadful disease, even if we can’t cure it. My experience has been, and experts concur, that while the symptoms of the disease present a theme common among all patients, there are variations on that theme, specific to the personal life experience of the individual, says Emma’s doctor, the handsome Dr. Patel. (Oh, wait … Dr. Patel is my daughter’s age, likely younger. How did I get this old? This old, 69, does not make it any easier to be a caregiver – 49 would be a more facile age.)

Caregiver support groups exist, but many caregivers don’t get out, especially if you’re the SOLE caregiver, because, whatever happened to the rest of your family…? Example – Delia Ephron’s book Hanging Up, the movie produced by Nora Ephron, directed by Diane Keaton, starring Meg Ryan, Diane Keaton, Lisa Kudrow, and poignantly, Walter Matthau in his final performance, as the aging and ill parent of three sisters.

Now it is even harder to get out. My car died recently. It was old. I sold it for parts. So now I don’t have a car. I have to save my money to buy another one. I have Hospice volunteers and great friends, fortunately, who drive me to the store and other places, but it takes brilliant logistics to coordinate my schedule with theirs, especially when a home health aide doesn’t show up. Therefore, I have to make sure all my supplies are well stocked, and be ready to jump when help is available.

If you are interested in how all this began and the progressive history, read my beginning posts in the May 2011 archives, starting with the earliest and reading forward.

Persons with dementia are like two-year-olds who, if not watched, will get themselves into trouble – quickly. As sole caregiver, as you who are know, when your loved one makes a sudden, unexpected move, there are the impromptu interruptions––

–Samantha, May 20, 2011

*Emma turned 97 on September 12, 2011.