The objective of this true accounting of events that just took place with my mother, who died on December 1st, 2014, is to share with those who have experienced this grueling journey, so not to feel alone; and for those who will have to, perhaps learn from our confusion. May you have the strength and love of family to get through it.
PART I – Cancer
As we removed Mom’s belongings from her bedroom, with intermittent breaks for sobbing, and a few laughs believe it or not, as certain items of clothing cued fond memories, I flashed back to the beginning of this fucking nightmare that is cancer.
Two years ago, after Superstorm Sandy, I drove with Scott cross-country from the Jersey Shore to the desert. We were making the move to be closer to my parents. I figured, a couple of years down the line, they might need a hand. I drove white knuckled, at 50 miles per hour, as the load in my truck was four thousand pounds over. After arriving with no mishaps, my father gave me the news.
“Mom has cancer.”
Immediately, the room closed in on me, and I felt the sound one might experience in an isolation tank. A deafening silence.
Not my mom! Not our family! This can’t be.
The load in the truck suddenly became a feather.
She had a tumor the size of a grapefruit in her chest. Stage 4B.
The morning of the surgery to have it removed, Dad, Scott and I were in the waiting room. The doctor thought he could get it all. This was a rare form of cancer that we were told doesn’t spread. “Thymoma”.
The surgeon came out and said we got it all…almost.
95%. The rest had latched it’s greedy tenticals onto her lungs and heart. But a dab of radiation should do the trick!
As she remained in the hospital for a couple of days, post surgery, I ran to Costco to get mom her favorite…cheesecake.
I’m in the line, bawling my eyes out. Freaking out. Is my mom going to make it?
They put Humpty Dumpty back together again, and she came home.
The first radiation series got the last 5%!!
Not so fast….
A couple of months later.
The cancer has spread. But just a few cells. A little dab of chemo ought to get rid of it.
But I thought this cancer didn’t spread???!!!
Well, it did.
After chemo, naturally, Mom lost her hair, but the chemo did not make her nauseous. But then there are the painful shots one most endure to help the blood cells, or something like that. Sure, chemo kills the cancer, but it also kills everything else. You would think there was a better way by now, since the methods of the seventies.
Okay. Tumor removed? Check.
Two months later…
Well, it seems just a little more has shown up, and another series of radiation is prescribed.
Mom is zapped and burned, again.
While in treatment, she told me she visualized a fazer, like in Star Trek, (Mom was a Trekkie), and she was aiming it at the Klingon cells attacking her body, and zapping the bastards to another galaxy, far, far, away.
Well, not far enough. The fuckers came back again…months later.
I watched as my mom became weaker, but she was still optimist. And she was excited to now fit in the same size she wore as a young woman. We went shopping to get new digs. And she was still strong enough to go out for lunch, and enjoy the food.
Meanwhile, she has had major back issues for decades. She is in no condition to have elective surgery. So what can she do? Take painkillers.
After this trapezoidal square dance with cancer had been going on for 18 months, it was taking a toll on her overall energy. She could barely walk a block without being exhausted. Her appetite was like a bird.
We had a beautiful family reunion in Oregon this summer. The last time mom would be able to get on an airplane.
The next radiation treatment was on her femur, in August. Another tumor.
September. I decide to go to all of Mom’s doctor appointments to find out what the fuck is really going on. Mom tended to sugar coat each new dilemma. When her prescribed radiation treatment was for 3 weeks, she said it was 2. When the cancer had spread to 2 places, she said it was only one spot. She was trying to protect us. Such a motherly thing to do.
I asked lots of questions. Direct questions.
I love my parents dearly, and they are highly intelligent. We are talking genius level. But they tended not to question the authority of doctors and the system. I, on the other hand, do.
I do think cancer is a money making racquet. If it ain’t broke to them, don’t fix them. The more Humpty Dumptys the better. Cha-ching.
While meeting with the Oncologist, I asked:
Q: So, is the only answer to addressing the cancer as it spreads, more chemo? More radiation? Just killing everything, pumping her with poison, so she gets weaker and weaker? That’s it? No alternatives?
A: That’s it.
Q: What about alternative medicine? Like marijuana? We would like to get a note from you so Mom can get her card.
A: My partners have not agreed to it, so I cannot write you the note.
Q: Are you serious? In the 21st century, your firm is that conservative, that backward?
A: Although I feel it is okay, some do not.
I roll my eyeballs, disgusted, and have no further questions.
The next day we go to the radiologist.
Q: So how much time does my mother have?
A: I don’t know.
Q: Are you just going to keep doing the same thing, as it spreads, over and over again?!
Q: Won’t that just break her down more? What will happen to her?
A: Eventually, your mom will get pneumonia, and will die from it. Well, it won’t actually be the pneumonia, it will be the cancer. The cancer will affect her immune system, so it will not be able to fight off the pneumonia.
FINALLY. A straight answer.
Time to investigate alternative medicine. But is it too late? With all of these “treatments” does she have enough strength to turn this thing around?
First of all, marijuana seemed to be a priority to help with pain, appetite, and anticarcinogenic qualities. My sister, Deborah had to make several phone calls, and found a Naturopath in town. We went the day after the Radiologist appointment to the clinic. With my mom in her weak state, I dragged her to the weed store….but not before we went to pick up her shiny new first walker.
I tried to encourage her to walk 40 feet from the parking space to the entrance, rather than dropping her off up front, as long as it didn’t hurt. In the meantime, one of her other doctors said, because of the last radiation treatment to her femur, the bone is brittle, and she should have a rod put in, just in case it should, and most likely will break.
The weed store provided us with the name of a doctor who would write her the prescription to be able to buy the marijuana products in her store. Of course there was a wait for this appointment.
I made no plans to travel anywhere more than 100 miles away. I had to be there for mom….and dad. Dad took her the following week, to weed Doc. Got scrip. Now wait for the card from the government, before she can actually get what she needs.
Next appointment? The pre-op, before the rod was to be put in.
Next day…your mother’s blood test came back. She is now anemic. It is too risky to do the surgery right now. We shall postpone.
Blood transfusion time. Sticking mom again.
But the good news is that she had a port surgically put into her chest before the chemo. What’s that, you might ask? It’s a gizmo that allows intervenes liquids to go into one’s body, without the use of a needle into the veins each time. But not every nurse or doctor knows how to use one, so sometimes they stick you anyway. And my mom’s veins are so small, that becomes a major task, and my beloved mother becomes a human pin cushion; black and blue for days.
Mom’s blood count becomes normal…for now. She is sent home. What’s next?
PART II – THE LITTLE SIDE EFFECTS OF “TREATMENT”
October. Dad calls me in a panic. “Please come over right away! Mom is acting really weird. Not making sence. She’s moaning. In great pain.” Even between the morphine and oxycodone, prescribed by her doctors, it is not doing the trick. And certainly, it does not do much good for my mother’s otherwise brilliant mind.
I run over, fortunately, only living less than 2 miles away. Mom is curled in a ball, rocking back and forth, and whimpering. We don’t know how many painkillers she has taken. She insists on taking them herself, as she refuses to be treated like a child. Yet, another ailment is that she is legally blind, having macular degeneration. I feel her head. She is burning up. I take her temperature. 104.5! I call my dear friend, who is a doctor. “Get her to the hospital right away!”
We take her to the emergency room. She fucking waits over an hour, slumped over in a wheel chair, in a freezing room. We ask for a blanket. They don’t have any. I am beside myself. They finally take her. After sticking her again, because that particular nurse does not know how to use a port, and then X-rays, 2 hours later we are informed that mom has pneumonia.
I leave the room and start crying hysterically. Is this “the” pneumonia? The one just mentioned a week ago? Is this the round she won’t be able to fight?
Mom is checked into the hospital, intervenesly fed antibiotics. She is released in 5 days. She is home.
Mom gets her marijuana card, and we go pick out some products. The card and appointment costs a few hundred. The weed costs a few hundred. And not just weed, but drops of THC, and chocolate to help her sleep, laced with herb. NONE of these expenses are covered by insurance, naturally. However, the astronomical bills from the “real” healers; doctors, is 80% covered. That 20% far exceeds the cost of a little weed.
Time to investigate more integrative medicine. There is a two month wait for a friggin’ appointment with the Arizona Center for Inegrative Medecine home of the famous alternative medicine doctor, Dr. Andrew Weil, who no longer sees patients. We make the appointment, but I fear it will be too late.
Mom gets pneumonia again. We race her back to the hospital. More waiting in ER. She is checked in again. Five days later, she is home.
We find, through a friend, a Doctor in New Mexico, who has been treating cancer patients for years, successfully focusing on building up the immune system, intervenesly, rather than killing it. And my friend, who was on his death bed, from liver damage, and Hep C, has been living healthily, since his periodic visits.
Dad is skeptical, but after listening to a radio interview, and researching Dr. Berkson, who has claimed to cure some folks with cancer, and other deadly diseases, he is convinced and impressed. And the bottom-line is, big biz does not want to find a cure.
Mom is now eating like a baby bird. But her hair is back. Dad drives Mom 5 hours to Las Cruces, New Mexico. She lies down in the back of the car for the ride. They rent a place for the week of treatment. And although Dr. Berkson is an MD, only the initial consultation is covered by insurance. The treatments are not. There’s another three grand out of pocket. But who cares. It’s mom! If it saves her, who cares??!!
They do some tests, and finds that mom still has pneumonia! And there had not been additional antibiotics prescribed before they released her from the hospital! Berkson administers the meds.
After 5 days of pumping only good stuff into mom’s body, she has a come back. She feels a bit stronger. Her color and energy has improved a little. We must do this again asap!
We find there is a branch in Scottsdale, closer to home, that administers the same potion in a clinic. We make an appointment and reserve another hotel for the week.
Mom is having trouble breathing, though. This time Dad and I rush her in to the hospital. I come flying into the ER. “My mom can’t breathe! Please hurry!” I’m tearing up as I announce in a panic to the ER desk.
A cocky fucking strapping strong man in his twenties, slowly strolls around the desk, gets a wheelchair, and WALKS behind my running pace to the car. I couldn’t believe it!! I turn around and looked at him in disgust and confusion. What part of Mom can’t breath did you not understand, you piece of shit?
This time she doesn’t have to wait. They take her right back and give her oxygen. More tests, more sticking. Mom waiting. Mom has pneumonia and is anemic again. She is checked in. As they try to use the port for intervenes meds, they discover that it no longer works. It’s broken.
Back in the hospital for another week. She complains of chest pains. But the tests they did, did not show any scarring on the heart. Released again. Mom is too weak to make the drive for another installment of the good stuff. Her back is killing her. Too weak for back surgery. She uses the marijuana products, but the pain is too great. The painkillers are needed. But in moderation. Once again, she independently takes them. We don’t have a say.
November. Mom has another few appointments. The cancer seems to be “in remission”.
Meanwhile, mom has been planning a family cruise to celebrate her 80th birthday. Originally, we were going in February, when her actual birthday happens, but she moved it up a while ago, to December. I think she knew she might not last. We are thinking this may be our last family reunion with the matriarch, the rock, the diamond on our tight chain.
Saturday, November 8th. Mom cooked a big dinner, as her brother flew in to visit…(to say goodbye). Actually, Dad did most of the cooking, while mom instructs him. She knows that eventually she will not be around to prepare the meals. He is a very good student. She eats fairly well that night. The next morning, we were all going to take a shuttle up Sabino Canyon, a National Park, just ten minutes from the house. She was going to join us!
Sunday, November 9th. Mom is too tired, but insists that we all go. We have left mom at home for a couple of hours here and there, where she just sleeps, or watches a movie and relaxes in bed. Less than 30 minutes after we left, we were in the canyon, and my phone rings.
“Where are you?”, my mom weakly asks, she sounds a bit zonked. Perhaps the painkillers.
“We are on the shuttle in the middle of the canyon, Mom. Are you okay?!”
“I just called 911. They are coming.”
And then, click. She hangs up. I tell my dad, sitting next to me on this friggin’ shuttle, where you are stuck. Of course I could have jumped off and ran two miles back to the parking lot. But it would have taken the same time to go up, and return. We are trapped!
At the top, the phone rings again. It’s her!
“I’m in the ambulance.”
Mom. Did you fall? She answers – no.
Are you having trouble breathing? – no.
What is it?!
“Chest pains. Heading to Northwest Hospital.” click.
We are not sure what is going on. Dad heads down to the parking lot, and goes to the hospital. I, believe it or not, hiked. I figured this was another pneumonia, 3 hour wait for results, check-in the hospital again, situation.
1 hour later, my Dad calls me. Mom. had. a. heart attack.
I start crying, run to the car. Run to the hospital. She is in ICU.
We are told she needs to get a stent put in, stat. We tell them about the non-operative port.
They put a stent in Humpty Dumpty.
We watch for the next week as my mother is stuck, and hooked up to iv’s again. (In between feeling guilt for leaving her all alone when she had a friggin’ massive heart attack!) She is struggling to breath. You can see her port just sitting in her chest, like scrap metal. Why didn’t they remove it?!
We don’t think she is going to make it, when all of a sudden, she comees back.
She says she wants to hold on long enough to go on the family cruise, and see me open for the Beach Boys on January 3rd, and then she will be ready to “go”.
Believe it or not, the Cardiologist thinks she will make it. Get her on the cruise. He looks at me, and I can read from his expression that he is saying, it will be her last chance to smell the ocean air.
The ICU nurse tells me she will pull through this round, but doubts she has very long. My brother flies in. Mom now has fluid in her lungs. They drain a huge amount from both, by sticking needles in her sides. She is breathing better.
Mom walks 85 feet! Her vitals are strong. They move her out of ICU and upstairs to the regular hospital wing.
They serve juice with high fructose corn syrup, and cuisine that a school cafeteria wouldn’t even put out. Mom’s appetite is now the size of a flea on a bird. Every day, we try to bring her anything she will eat! I made homemade soup, brought her favorite things. Rushed with my delicious oatmeal, so it would remain hot, as opposed to their mortar. She would eat 2 bites and be full. In the past 2 months, mom has eaten less than one person eats at Thanksgiving.
Speaking of which, my sister Dianne; and her 5-year-old daughter, (the reason why my mom’s heart is still beating) are surprising her for Thanksgiving. Will mom be able to sit at the table?! And if she can’t even come to the table, how can she go on a cruise?!
November 18. More tests. A slight amount of fluid is back in her lungs. They need to check to see if there is cancer in the fluid. The tests come back negative. Good news. But the cardiologist tells me that does not necessarily mean there is no cancer in the lungs now. In fact, other numbers indicate there might be. I pin down another doctor to admit she has less than 6 months. But she would not admit less than 2, as I pressed.
I layed with Mom in the bed, at her feet, curled up into her knees. I tried to bury myself in a pillow so she could not hear my uncontrollable sobbing. Finally, I lifted my head and bawled into my mother’s bosom.
“Mommy. I can’t hide it any longer. I love you so much. You are the best mother anyone could ask for. You were so good to us. I am sad, and scared. I’m sorry. I just can’t hide it. I love you.”
She held me in her arms. She said she was going to be just fine. She said she had a wonderful life, with wonderful children and grandchildren. A full rich life of travel and most of all, a loving, wonderful husband. She told me how much she loved me. It was a reassuring moment. And I do not regret for a moment crying in front of her. It will always be her role to be a mother. And she was great at it, even in her weakest state. And she enjoyed being mine at that moment, to console her little girl.
She was content with parting. She knew. I longed for her pain to be over. I knew.
My sister Deborah flies back. I pick her up at midnight, completely exhausted, almost fell asleep behind the wheel. I have her drive back. We go straight to hospital for a sweet goodnight to Mom.
PART III – REHAB?!
November 19. They move mom to rehab facility…i.e. nursing home with 24 hour care. Rehab? Is she strong enough to fight back? Do they think she has another chapter in her life?! Okay.
She wants to go to the facility closest to home, and right next-door to her best friend, Sandy. But there are no beds. They stick her in this shit hole, where she is crammed into a room with a curtain stuck between her and her new roommate. The place smells of sickness. I run home and get some paintings, pick some flowers, and print a photo of the family, framed it, and brought it to warm the place up.
The idea of “rehab” is for her to be able to dress herself, and use the toilet. And perhaps shower.
She can no longer recline completely flat, because she can’t breath. So she has to sleep sitting up.
They pump her with painkillers until she is loopy. I watch in fear and disgust. I want to break her out of there.
We are with her fifteen hours a day. She is not eating. Only ice cream. Let her enjoy it.
We call at 3am to check on her. The second night we are informed that mom was found ON THE FLOOR!
The next morning we run in. She is there, slumped over in her wheelchair, head on the tray. It was so discouraging to see my Mom like that. How can anyone be comfortable like that?! My heart is breaking, because I know she is not going into her bed, because she fears if she lies down on the bed, she won’t be able to breathe, and will die. I cry every time I think about her fight and struggle.
She wakes up. She says her hip hurts. There was a small bruise. She had somehow slid off of her chair onto the floor. It was not a fall, at least. But it took them 25 minutes to discover her there…or more…who knows? She is high, but lucid enough.
I want to get her out of there!
She tells me that her roommate has a son-in-law who visits at night, brings in alcohol, and watches soccer in Russian. She also said she put herself in the wheelchair, from the bed, after having to go to the bathroom, after paging an aid, unanswered, and rolled herself into the hallway to ask for help. She said they were doing paperwork, and finally assisted her.
I didn’t know what to believe. I haven’t seen her wheel herself in the chair. Too weak.
I asked suspiciously, “Mom, can you use the wheelchair?”
She answers with pride, and justified defensiveness, “Of course I can.”
And then she shows me. And she shows me!
Fuck. She can. Fuck. She is not hallucinating! Fuck. I have to get her out of that fucking place!
Later in the day, she even reiterates her Russian story, and it is 100% consistent. I believe her.
Dad has pulled his back out. He must remain in bed.
Friday, November 21. Her best friend, Sandy and her husband, call the home near them, where they have a relationship. 2 beds opened up! In private rooms!! Lets move her NOW!
Oh…but there is paperwork. And we need doctors orders and administration bullshit. This needs to be signed and faxed. That needs to be signed and faxed. We clear the paintings, vase, and photo.
My sister spoke with the social worker and nurse to start the process. Deborah said, and I quote… “I am the most patient of my family, so if things don’t get moving, you will be receiving a phone call.”
I very assertively bug the shit out of them to make sure all T’s are crossed, and all I’s dotted. It’s too late to move her tonight. She will go first thing tomorrow. What time? By noon. I call the other facility to make sure they saw the order. I catch the administrator before she leaves. She hasn’t seen it. I make her walk to the fax machine. She finds it. But the date is missing! It just says “a.m.” I call the other facility in a tizzy and demand the paperwork be resent immediately. I HOLD ON THE PHONE until it is done. I call the other facility to make sure it is in hand. Mission accomplished.
Brother and sister fly back to their homes. Mom seems to be on the mend for now. Dianne and grand daughter arrive. We hope to get her strong enough to get on that plane and go on that cruise. It means the world to her….and us.
Saturday, November 22. I call first thing to make sure the van is picking up mom on schedule. But there is a bike race. “Tour De Tucson”. She may be a little late. I run around and get the room she will be checking into, homey. I put up the paintings, flowers, and photograph of family back. I am spazzing to make everything perfect…well, as perfect as it can be, for my beautiful mom.
As they wheel her in, I notice that her socks are filthy. And it looks like they have three layers of them on her. I ask the nurse to change them. An hour later, I ask again. I finally took them off, only to discover there was only one layer, and her feet were swollen. They were huge! I freaked out. I want to see a doctor NOW!
The doctor only comes in on Fridays.
Once a week?! My mother will not be seeing a doctor for a week? That is not acceptable.
Well, the nurse practitioner can see her.
Get her in now!
We have to page her.
In the meantime, 3 different nurses look at her. One says edema. One says gout. One says cellulitis. I’m afraid of gangrene! There is now way they are going to amputate!!
3 hours later, Nurse practitioner shows up. She is very thorough. She orders a bunch of medication. She orders x-rays. She orders special stockings to put on her legs. Mom has edema. She needs to keep her legs elevated. (I picture her slumped over in other facility. Legs down, Head on tray.) I am angry and frantic. Where are the stockings?! They will be put on the next morning. Allegedly better to put on in the morning, after she has her bath. Difficult to put on and off.
Mom says it doesn’t hurt. So that is a consolation. There is no lounge chair, or “Archie Bunker Chair” in her room. I ask them to bring one. It’s the only thing mom can sleep in semi-comfortably. They find a chair from the seventies, at best, with a manual adjuster. How much does this place cost a night? Is this the best you can do with prehistoric furniture?! Yup.
Then I have to fill out the paperwork. This includes checking off whether we want a feeding tube, if necessary. No. If she has a heart attack, do we use that hoosamajiggy that I have seen in movies, where they yell, “CLEAR!”. Ummm, well, yes.
I wake up in the wee hours, as usual, and call to check in. She is sleeping, and ok.
Sunday, November 23. I check in on Dad, and then straight to Mom, first thing to see how her legs are…the swelling has reached her knee on her left leg! Her big toe is bright red. I freak again. Get. me. the. Doctor!
I call Dad. “We have to get mom to her doctor! I don’t trust these people, and their doctor won’t be in til Friday! And she seems to be just slowly shutting down. Her breathing is tough. I’m not sure I did the right thing signing that paper, Dad! I heard from a nurse here that when they do that thing to the chest, that it’s not like on tv. It can break ribs. And Mom is already a mess. Should we change it? He says, yes.
She gets a bath. They put on the stockings. I insist that they find a better chair. They manage to find a leather Archie Bunker Chair that is way more cushy. She is comfortable. hallelujah.
Sunday evening, Dad got out of bed, and came over to the home to change the orders. D.N.R. Do. Not. Resuscitate. He signed it. I had no idea that was the thing I had signed yes to. But I felt torn and guilty. But it’s the right thing. She is dying. Why prolong the agony? It is merciful.
Monday, November 24. I go to shift Mom’s legs. She insists on putting them down, because her back hurts when she is stuck in the reclined position too long. The stockings are off. They are not to be worn at night. My hands are wet. What is this? Is the chair damp from a towel or something? Then I realize the moisture is coming from her legs. Like at the airport, I am now on orange alert. I look closer, and now I see her legs have little blisters on them! Water blisters! I guess it’s water. I call the nurse in a panic. Her legs are leaking! I. WANT. TO. SEE. A. DOCTOR! They make an appointment with Mom’s Pulmonologist for tomorrow.
It is explained to me that her heart is no longer strong enough to pump the blood to her feet. And now her kidneys are shutting down, so the fluid in her has no place to go, so it leaks out of my mommy!! What the fuck?! We are watching her die from the feet up!
Tuesday, November 25. Mom’s swelling on her left leg has now reached her thigh. Mom has to be brought with the home’s van with a lift for her wheelchair. She is too weak to use a walker…to even take 2 steps. Dad goes with her. Dianne and I drive separately.
3 pm. Nurse practitioner sees her first. She looks at her legs. She looks concerned. Then the doctor arrives.
He says to us gently, we have seen the X-rays. The cancer has spread to your lungs. There are multiple tumors. Its time to make you comfortable. We suggest “Palliative Care“.
What the fuck is that? Is that a gentler way of saying Hospice? Can’t put Humpty Dumpty back together again?
We are actually a bit shocked. The cancer has spread that rapidly to the lungs? When did this happen?
He wanted to do one more x-ray and send us a block away to the lab. We didn’t have time to call the official van. As Dad and Dianne wheeled her to the next building, I stayed behind to speak with the Doctor.
“Should I call the family now? How much time does she have?”
They should come right away. There are no guarantees that your mother will make it through the night.
I call Deborah and Howard, then try to find Mom, Dianne, and Dad. I walk around this complex and can’t find them. Doors are locked to entrance of x-ray facility. I run around, and finally find them, frantic. All doors are locked. Mom in the wheelchair. I sprint back to Pulmonologist hoping they haven’t locked the doors. I get in, panting, I say, “The building is locked!”
They look at the clock. “Oh, they close at 4. You can rush over across the street to Outpatient next to ER and get the X-ray.” I run back to Dad, Di, and Mom. It is a glorious, sunny afternoon, with a slight cool breeze. We wheel mom about a quarter of a mile, down hills, up hills, to the hospital. There was a moment where we felt FREE! Mom was like in the scene of The Titanic, standing bravely at the front of the ship. It was a moment I will never forget. An actual happy moment.
We get in for the x-ray. I actually don’t even know why they are doing one. But, whatever. The van picks up Mom and Dad, and she goes back to the home. We make an appointment for Hospice for the next morning. Dad sleeps over at the home, to be with his wife, and make sure she is attended to properly.
We. Want. Mom. Home.
PART IV – HOSPICE
Wednesday, November 26. Wake up, go to nursing home. Meet with Hospice rep, who is also a nurse. Mom is complaining that her stomach is bloated. We wonder if the fluid has now invaded her abdomen. The hospice nurse feels the tummy, and says it is not “hard,” so it may not be fluid. Mom wanted to check. That means going back to…the hospital?!
The paperwork for Hospice was postponed, as they do no form of healing/antibiotic stuff. Their objective is only to make one comfortable, as they wait to die.
Of course, wouldn’t it be nice if we can decide when and how we want to die? Preferably without pain.
The van comes around to pick up mom, (literally) as they lift her wheelchair into the vehicle. Dad drives with her. Dianne and I follow, again. It is another glorious, sunny day. A day where I would have preferred mom to be home, rather than stuck, and getting stuck in a hospital.
And guess what? That is how this day was spent. Four fucking hours in ER.
After dropping Dianne off, I ran to the Pulmonologist office to make sure my mom would not have to wait in the ER. Why couldn’t they do the sonogram to see if there was fluid??!!
I arrive at the hospital, and fortunately Mom is in a room. She did not have to wait. But we were just waiting in this room. A nurse walks in, and has a bunch of tubes to take blood.
I asked. “Why are you taking blood?” I was completely confused.
“Protocol”. He says.
“I want to talk to the doctor.”
All the while, he is unsuccessfully sticking her over and over again, while I see my mom’s arm and hand bruise in front of me. No blood coming out each time.
I say to the nurse. “Stop sticking her. Why do you need to take blood to see if there is fluid in Mom’s stomach!??”
“Well, we are checking for infection.”
My mother is fucking dying of cancer! She is going into Hospice as soon as she is out of here. Were you not informed?! We just want to see if there is any fluid. And if there is not, we are taking her out of here. Stop sticking her!!! Have you done the sonogram???!!!
“We are waiting until after the blood tests. I will stop, though.”
I was furious. I had to walk outside. I began crying. The system is so fucked-up and illogical. Not my Humpty Dumpty! Take your hands off of her broken shell!!!!!!
I come back in and she is getting the sonogram. No blood test. Hallafuckinglujah!
The test comes out negative. No fluid. A waste of a day in the life. I am so angry. I know. It is not about me. I am angry that my mom had to go through this. She chose to. And I had no control over almost anything. My poor Mom.
No. More. Hospitals.
Earlier in the morning, the Hospice rep told me that they would pick her up from the hospital, and take her to nursing home, check her out, and bring her home.
Then I got a call, while mom was in the hospital, that she had made a mistake. The nursing home had to pick her up, per the insurance laws, and then they could take her from there to Mom’s home. Home, home. Not nursing home.
Now it is nearly 4pm. We call the nursing home, and find that the driver is off now, because of the holiday! Dad and Mom wait outside, like some kids, stranded at the movie theatre, waiting for their folks to pick them up. It takes them an hour to get a company to drive her back to the home! My mom is dying, and we aren’t allowed to take her ourselves in the car?! Which we are perfectly capable of doing. Again, I wanted to punch a wall.
And when she finally gets back to the nursing facility, it is too late to get her home with all of the appropriate red tape, and equipment that needs to be delivered to her home.
We will not leave my mother alone for a second. Yes. A second.
My sister Deborah, and her son, Mom’s Grandson, arrived. That’s 3 daughters, and 2 grand children. Just waiting for Howard, again, first-born son, and 3 more grandsons. They will arrive on Friday.
I volunteer to sleep over with her. I crashed in her hospital bed, while she reclined in her Archie Bunker chair. It was one of the most beautiful evenings I shared with my mom. I will never forget it.
We talked about her entire life. We expressed our love. I told her dirty jokes and she laughed out loud. That infectious cackle my mom has. I recorded her with messages for all of the family. We slept a little. Recorded more. Mom and I ate cereal at 2 am. When a nurse would burst in, and turn the damn lights on with another medication, I sent her away…unless it was a painkiller. Not sure they got the memo. She actually came in with a shot of antibiotics. That’s. Over.
My sister and Dad relieved me at around 10 am, and I ran back to the house to get it ready for the arrival of our holy mother. Yes, I looked at her as if she were the Virgin Mary. (Both Jews.)
Hospice came and delivered her hospital bed, an oxegen machine, a commode, a wheelchair, and albuterol machine. We cleared the living room, which faces the mountains, to set her up there. We brought in flowers. We tried to make everything perfect again. We even brought over an old African door on a stand, and set it up hanging a sign “Le Toilette,” to give her some privacy for the commode that would be next to the bed. The 5 year old grand daughter drew a welcome sign on the front door.
We were visited by a nurse, who explained a bunch of stuff, and suggested we get mom a “lift” chair. It’s a sort of electrified Archie Bunker chair, so it adjusts electrically, and makes it easy for Mom to get in and out of. She told us some rental companies that may offer this. Of course, being thanksgiving, no one was open. Scott and I had brought a different Archie Bunker chair from our house for the time being.
At 1:00pm, Thanksgiving Day, mom was home. Almost all of the family is here.
PART V – DEATH
Thursday, November 27. Mom ate a little turkey on Thanksgiving day. Like, one bite. She went outside and enjoyed the sunshine. She was lucid, and very happy to be home. She liked the set up.
Then Hospice nurse number two came to visit. We were told we would have a nurse come twice a week for a couple of hours. And an aid would come three times a week to help bathe Mom. I pulled her aside and asked, “How long do you think she has?” She answers, maybe a few weeks.
Gosh. That leaves us alone with Mom for an awful lot of time. Do we know what we are doing? No. But we know we love her and will be by her side.
She examines mom, and shows us a few bottles of medication that arrived. Mostly painkillers, 20 ml of percocet every four hours. And a couple of things for thinning blood, and other stuff. Why would they need to thin blood? It was already a challenge for mom to swallow. The antibiotics for the phenomena caused a yeast infection in her mouth, which made swallowing difficult. How could she take pills?!
We decided to hire a private aid to come in every morning to deal with daily bodily function clean-up. Since it was Thanksgiving, she would come tomorrow to bathe mom.
Mom enjoyed an afternoon on the porch with her daughters and grandchildren. The relief of having her home took a huge load off of all of our shoulders. No more worrying about her waiting to go to the bathroom. No more worrying about her falling on a floor and being left! No more crap food. No strangers waking her up at all hours. She could relax.
Dad slept next to Mom. She in the chair, dad in the hospital bed. And my sister Deborah on the couch. I went home.
Friday, November 28. After several calls to medical equipment rental companies, I found none of them having “lift” chairs for rent. They are apparently too expensive to carry. Like two grand to purchase.
Nurse number 3 from Hospice shows up, while Mom is being showered by the aid we hired. Mom’s toe on her left foot is turning purple, and her legs continue to swell and leak. When her bathing was done, some of the blisters had now popped. There were open wounds on her legs, and we had to use surgical gloves to gently handle her. But again, she said there was no pain there. The percoset was doing its’ job, thank goodness. I, on the other hand, felt anguish for her condition, though I didn’t feel disgusted by it. It was my mom.
“How long do you think she has?” I ask. She says, a few days to a week.
Honestly, at this point, watching her deteriorate, I was hoping the sooner the better. I do not want my mom to suffer. We were all thinking the same thing.
But we wanted her to be as comfortable as possible. Dad and I went to a local consignment shop that had about 8 Archie Bunker chairs available, and they were willing to deliver immediately! We looked around and lo and behold, in the back of the showroom, there was a (drumroll) LIFT CHAIR! It had just been marked down 50% because it had been there for a long time. We grabbed it. On our way back, we received a call from the last Hospice nurse. She recommended Mom to stop taking the blood thinner pills. She said they were for making sure the new stent would continue working. She said, if mom had a heart attack and died, it would be a blessing. We said, okay.
That afternoon, mom was extremely comfortable in her new lift chair. It was perfect. My brother and the remaining grandkids arrived. The entire immediate family was there, and we all had quality time with a coherent mom, grandmother, and wife. She was so happy! We all piled around her, ate our dinner, and then watched her sleep. Her breathing was so strained. She would inhale, and then over ten to twenty-seconds went by, before she would exhale. We timed it. I called Hospice.
What if we can’t wake her up for her pain meds?!
Did you get the silver bag? She asked.
What silver bag?
It should have been in one of the deliveries.
I looked through a pharmacy bag, and found it. Inside were three syringes with morphine. One bottle of percocet. And a bottle of Ativan.
She said that was the “emergency kit”. And it should be kept in the refrigerator so we all know where it is. She then said that I could smash-up the percocet and make a paste out of it. Then I could take a surgical glove, and line my moms inner cheek with the medication. SHe said it would absorb into her system that way.
My cousins drove in from Los Angeles.
Dad slept next to Mom in her electric Archie Bunker chair, and my brother slept on the couch. Mom slept like a log. Her family was here.
Saturday, November 29. I woke up at 6am, after tossing and turning all night, thinking that I had to do something extraordinary for Mom. What can I do special? To make her smile? Ahh. She loves music! Wouldn’t it be great if I could get my friends, a Mariachi band, to come serenade my mother?! Yes! Yes! I have to do it!! I don’t care what it costs! I must make this happen!
At 8am I called the band leader, Angel. I asked if they could come at around noon. I just need you guys to play for thirty minutes! Please???
Mom has been pretty wide awake midday, and has been spending it out on the porch. How wonderful would it be if she heard music, and then the band just came through the gate and surrounded her?!!!
Angel said he could not get the guys together until 5:30. Damn it. 5:30? Would she be awake? Would she be coherent? Would she be alive? Okay. Let’s do it.
Mom slept most of the day, and we had another hospice nurse visit. Upon her examination, I asked…”How long do you think she has?” She answers a few weeks to a couple of months!
My father and I are completely confused, and overwhelmed. This can’t possibly go on for a couple of weeks, let alone a couple of months. She is falling apart! She can hardly breathe! What kind of life is that??!!
5:00 o’clock comes around. Mom is out cold. 5:15 the Mariachis arrive. Mom is still sound asleep. 5:30 they come up and play on the porch to the rest of the family. My father smiles, and starts to cry, as the sweet violins played a charming melody. We all peeked into the window. Mom still fast asleep.
“On no!” I thought. I don’t want mom to miss this! Please. What a backfired plan! Even though the family was enjoying it, we were all thinking the same thing. Is mom ever going to wake up?
5:45 I made the bold move of having the six players pile into the living room. They started another song. Mom did not budge. And it was certainly not quiet. So I had the band go back outside. Suddenly, as they began the next song, mom awoke!
The band piled back into the living room and continued playing. My dad had tears in his eyes, while exclaiming, “Shirley, this is not a dream. It’s real. It’s real! You are still with us. I love you.” He is sobbing. I am sobbing. The entire family is sobbing.
Dad sits next to Mom and she requests a classic, La Malaguena. She is aware. She is high, but is tapping and bobbing her head to the rhythm. Then she is smiling. They do three songs for her, she applauds. It was a magical moment. Mom loves music. Our entire family loves music. I video taped the whole thing. I will cherish it forever.
My Aunt and Uncle arrive from Rhode Island late that night.
Mom sleeps very soundly. Dad next to her. Dianne on couch.
Sunday, November 30th. All of mom’s friends pay a visit in the morning. Mom is in and out, falling asleep in-between sentences. She is shutting down. Her breathing is really difficult. Dad calls hospice.
“Isn’t there away to not prolong this agony?!”
She can no longer swallow. We are instructed to go to the liquid percocet. There is no liquid percocet!! Only morphine. We were told my one of the umteenth nurses that we should stick with one or the other. We can’t get you the liquid percoset until tomorrow. Use the morphine. There are three vials in the emergency kit.
Another nurse comes in to examine mom. “Has she had any anxiety?”
Like, has she shot up, panic attack?
“No, but I have seen her face scrunch up in pain, and her eyebrows wiggle like she is confused.”
That’s okay. You would know if she was anxious.
Well, I don’t want it to get to that point. I would love her to just stay asleep, now that she has said good-bye to everyone, and just go in peace.
If she gets anxious, give her the liquid ativan.
There is no liquid ativan!
We can get it tomorrow, she says.
That afternoon, as she opened her mouth for her inhale, I squirted the morphine under her tongue, and then pasted up one half of an ativan, and mixed it with ice cream, slathered it into her mouth with the glove on.
My sister gave her next dose of morphine four hours later. But no ativan!
I was thinking, lets give her a whole one. What the fuck is the difference?
But mom was sleeping soundly. It was now midnight. The entire family is there.
I am in the kitchen, and I hear my sister, Deborah say, “SHE’S AWAKE!?”
We were all surprised, and scared, because her breathing was worse, her legs were purple. What would she feel?!!!
She tried to get up! Her eyes were bulging! They were wide open, and she could not speak!! She looked terribly frightened.
I quickly got out the ativan and started smashing it up with my nephew. Scott accidentally knocked me! It spilled on the floor! Mom is having a crazy anxiety attack. Like something you would see in Pulp Fiction! I am tearing up, frantically smashing up another ativan. I should to Dianne to get the morphine! Hurry!!
I put on a glove, and sat right in front of my mother, who is sitting up straight, looking right at me with a look of terror. She can barely breathe. As she takes an inhale, I stick my finger in her mouth, with some of the paste. Then again. It is hard to get the entire half of a pill on my index finger in this form! I used too much ice cream!
If I could read her expression, it was almost like, “What are you doing to me?!! Why can’t I speak? What is happening” She looked into my eyes. I was hysterical, while I applied the last finger tip with the last of the paste. I said, “Dad, please go in front of her now! Make her calm!!” I walked away and collapsed, bawling my eyes out in hysterics. I had to go far away because my whaling was loud. I started to hyperventilate. I saw that look on her face. WHY DID SHE HAVE TO WAKE UP?! WHY DOES SHE HAVE TO SUFFER SO?! Please let her sleep.
It took about a half an hour before the fucking ativan kicked in, and she was peaceful again. She was calm.
I, on the other hand, was traumatized. I took a fucking Valium. But that expression of terror on my mother’s face, is still etched in my mind! I can’t help it. I can’t get it out! Why did she wake up? What was she thinking?! My poor mom. She does not deserve this.
Mom fell asleep. The entire family was traumatized.
I went home.
Monday, December 1. My phone rang at 4;00 am. My brother, in a somber voice, said, it’s over. She’s gone. We don’t know what time, but between 1 and 4. I started to cry in bed. I was relieved, but so frustrated that it had to end this way. That her last moments awake were horrific. In fact, I was angry.
Why didn’t the Hospice nurse just tell us “MAKE SURE YOU GIVE HER THE ATIVAN REGULARLY. EVERY FOUR HOURS.” She did not deserve to go this way. It was inhumane. If she had the ativan, if we had the knowledge, if we were allowed to put her down peacefully, she would not have had that episode, and it could have been the fairy tale ending of, “She waited for the entire family to show up, and then she died peacefully in her sleep.” You hear that all of the time. Not this time.
I went over in my pajamas and saw mom in the Archie Bunker chair. Still.
She looked beautiful.
A hospice Chaplin arrived. We all made a circle around her and spoke. We took turns and said something. I don’t even remember what I said. But my family was wonderful. I am lucky to have them.
The funeral home came to pick her up. We all kissed her.
Then the family gathered around Mom, and we gently picked her up by lifting the sheet under her, and placed her onto the gurney. We all kissed her again. My father the last to kiss her yet again.
“My Shirley. My beautiful Shirley. Love of my life. Love at first sight. I love you.” And he sobbed. Together over 60 years.
We all sat together sobbing and hugging. She was gone. But I can’t get that last scene out of my head? What do I do?
PART VI – FAMILY, LOVE, HEALING
Saturday, December 6. The closets are empty. What we didn’t keep, we gave to charity. Mom wanted to donate her clothing to those women less fortunate. She was a very compassionate person. A very loving person. The best mother anyone could hope for.
So what do I do with this anger? The frustration of a fucked-up system? The idiocy of a puritan society of arrogant fools, blocking logical laws from being passed?
And how do I get this vision out of my head? My mom looking into my eyes in terror in her final moments of consciousness? Feeling her emotional anguish? How do I make it go away? How do I let go of, we could have done it better?
I see a shrink. That’s how.
I made an appointment with a very wise, calm woman I am proud to call my shrink.
I told her the entire story.
When I was done recalling each chapter, sometimes hysterically crying, (like about the ending, the sobbing at my mothers feet in the hospital, and thinking about how afraid she was to lie flat and die, so she had to sleep sitting up for 3 weeks), she asked me a few questions.
Do you blame yourself? No.
You were there the entire time. Were you there for her when she needed you? Yes.
Did your mother believe you were there helping and loving her? Yes.
Did your mother think you would ever try to harm her? No.
Does death have pain? Not after, but during, sometimes, unless you can die peacefully.
Does giving birth have pain? I haven’t given birth, but I am sure it does.
Does life have pain? Yes.
I looked up and said, I get it. There is pain in life. It’s part of life.
So, although my mom suffered in the end, she had experienced much pain in her life, as we all do. And now I am at peace. Now she is at peace. Will I still cry because I miss my mother. Yes. Time to take care of Dad now. Time to heal with my family who I love with all of my heart.
I wish everyone peace this year. Go love and appreciate your family.