Peace at Last

Mom passed away yesterday. Her longtime caregiver, Eva was with her. Eva had just finishing cleaning Mom and was brushing her hair and rubbing the back of her neck. Mom's hand dropped from her lap, her face turned pale and she stopped breathing. It's a sweet peaceful end to such an arduous journey. Mom was with her loving aide who she adored - and Eva loved her.
Mom suffers no longer. And those of us who loved her don't have to watch her languish any more. I hope the time comes quickly when I can think only of Mom in her vibrant, vital life, and diminish the dominance of her long journey to finally rest. 

Ready, Get Set, Wait

My rabbi, Les Gutterman, has called me a few times to check in on how things are going with mom.  My answer yesterday was that she is the same, just that there is less of her.  She is rarely awake.  She eats sometimes, maybe two light meals a day at the most.  On Sunday, all she had was a glass of orange juice.  But her appetite jumped back up today and she ate a sandwich. A few days ago, when she had lost interest in eating, it seemed like she wanted to let death to come take her.  But then she got hungry and figuratively took back her seat at the table. The ping pong, down and up, out and in is so hard.  We think we are losing her and then she will bounce back - talking lucidly on the phone or singing with the music therapist.  But mostly, she lays on her hospital bed, newly set up in her den, mumbling constantly, unaware of anything beyond her reconcocted history that plays round and round in her head.  Rabbi describes this time as "Ready, Set, Wait".  We are, we are, we are.

(Un)True Confessions

Sometimes Mom's conversations are so cogent and so in-the-moment, that I wonder if her dementia went away. But then, it roars back in weird and wonderful ways.

She told me on the phone that she had just spoken with her dear old friend who has been her best friend for over 60 years. Let's call her "BF". BF is the one person alive who shares the most history with my mom, in terms of people and memories and feelings and, probably, secrets. Mom said she had a delightful long call with BF, reminiscing about old times, about their dead husbands who had been business partners, about their dinner parties and travels and their wild partying friends. And then Mom transitioned to a serious voice, saying, "Today, I told BF something that I had never told her. In fact, nobody knows it". With my curiosity piqued, I asked, "What did you tell her?" Mom replied, "I only have one breast". (WHAT?!?) I know for a fact that she has two. It's not a topic that is open for interpretation. She has never had any health issues or any problems with her very healthy and formerly, extremely ample breasts. Now, they are shrunken and shriveled down with the rest of her body. But in complete symmetry. At that point, she was spent, stopped talking and was finished with our conversation. I hung up, puzzled. 

I called BF, who has all of her marbles, and with whom I speak periodically. I asked how the conversation went with Mom. BF gave a similar report - - fun to reminisce, laugh about old times, compare experiences about the paths their lives have taken -- all in all, a lovely, animated chat. Then I asked if Mom had said anything strange. BF replied, "Well, now that you mention it, she did inform me that she only has one breast. All these years, and I've even seen her naked a few times, I never knew that". I told BF it simply is not true. BF jumped back in, "See! I knew I was right not to believe her". So, even Mom's friend of more than half a century also got led down the lane of faux reality. Mom lures us into thinking that she is lucid, but then in a flash, she veers off the road.

Messy

She was diagnosed with colon cancer almost a year ago. She underwent surgery to remove a tumor that caused a painful blockage. Since then, she has never fully recovered from the surgery, making life a mess if you know what I mean. Her life is a constant reminder of the post-op insult of her bowels not returning back to normal. Thankfully, she doesn't know what they are doing or when. But unfortunately for them, her aides do. 

Daily Dose of Dementia

Mom's mind fascinates me. She seamlessly integrates today's reality with her childhood and then collapses her two husbands into a simultaneous moment, all while conducting a conversation real-time as though it's all happening. Her special blend of fiction reminds me of "Ragtime" where novelist E.L. Doctorow wove a story incorporating made-up people with real historical figures such as Harry Houdini, JP Morgan, Sigmund Freud and Henry Ford. But sadly, the tapestry Mom weaves with her imagination cannot cover her frustration or her anger.
Our conversation on August 12 started with her asking, "When is Santa coming?"
Me: "He usually comes at night, after everyone is asleep. Why do you ask?"
Mom: "I want to make sure that I have enough time to take Mama and Daddy to Buddakan [an upscale restaurant in Philadelphia that she has not been to for a decade; and her parents passed away about 40 years ago].
Me: "That's so nice that you want to take your parents out to dinner".
Mom went on to describe how the restaurant has a communal table where she intends to bring a lot of people including her two husbands [both deceased, not in her life simultaneously], plus somebody named Jim.
Me: "So you are planning a whole dinner party?"
Mom: "Yeah, we have and expression around here -- it's called "go fuck yourself". We say it when we invite a lot of people and entertain them, and then they never invite me back to anything. Oh when will this be over? I just want it to end".

Mom: "Spread my Ashes Equally over my Two Husbands" (Please)

In May, when my husband and I visited with Mom, she was eager to discuss her wishes on how to handle her death. Clearly, it was important to her to say what she wants. She has so much time to spend alone in her head, without any way to write down or even capture her thoughts. I imagine that it is a great relief to say it (and dump it) out so she no longer has to carry the ideas around. What she wanted to impress upon us is that she wants her ashes spread evenly over the graves of her two husbands -- my father and my stepfather. These many months she has lain in bed, she has thought a lot about her two husbands. She has done some comparing and contrasting (which I do NOT like to hear about), but ultimately, she came to the place where she decided that 50/50 was the way she wants to land.

For as long as I can remember, she has said that when she dies, she wants to be cremated. In fact, when she moved herself into the life care community where she now lives in Florida, she purchased a prepaid cremation service. She told me that fourteen years ago. I remembered the name (Neptune Society) so I tracked them down to see what's involved. The first thing that's involved is that they exist and are still in business as a cremation service. That is a good first thing. Second, they verified that she had a prepaid service that they were prepared to honor. All good. Finally, I asked how their service works. The representative on the phone told me that when Mom passes away, the hospice people call Neptune and they will come to remove the body. Then, the Neptune Society will conduct the cremation and will place the ashes into an urn. And then, very simple, the lady told me, I can just come pick it up. After establishing that I can't just simply pick it up because I live 1,400 miles away, she allowed that Neptune will Fed Ex the ashes wherever we direct. However, she offered an option. Instead of putting all of the ashes into the urn, Neptune will reserve a small amount of the "cremains" to create a sentimental memento for the family. If I supply them with a photo, they will place the photo into a picture frame sprinkled with some cremains at the bottom of the frame to make it very special. NO THANK YOU and EW! That is totally weird and gross.

I did some internet research and learned that "cremains"is a word that is just what it sounds like. But, I also learned, there is a whole commercial world out there cashing in on them. I discovered that the Neptune Society folks are way low on the creativity scale for fancy things we could do with Mom's ashes. Not for her, though, because she has expressed her clear wishes to lay them in equal amounts over the graves of her two beloved husbands.  

Since the cremains sector is rather outrageous, I'm posting here Mental Floss's "10 Amazing Things Your Ashes Can Do After You Die":

1. An hourglass - Lifetime Hourglass Urns will custom make an hourglass with your loved one's remains passing the time

2. A Vinyl Record - The British service "And Vinyly" presses ashes into vinyl and families can provide audio or have the company compose an original song known as "bespook" music.

3. A Diamond Ring - The company LifeGem uses the carbon to make fake diamonds, but even they say that engagement rings are a little creepy.

4. A Teddy Bear - Huggable Urns will custom fit a stuffed toy teddy bear around the urn

5. A Tattoo- Commerable Tattoos will sterilize the remains and mix them into tattoo ink to keep your dearly departed under your skin.

6. Something to Write With - The Carbon Copies Project turns cremains into a set of 240 pencils, each stamped with the name, birth and death years.

7. A Portrait - A number of artists will happily mix cremains into their paintbox and create a memorial portrait.

8. Stained Glass - You can have stained glass pieces bonded with cremains to create a memorial.

9. Human DNA Trees - An art venture called Biopresence claims to be able to transcode human DNA into a tree to create a leafy memorial. 

10. Fireworks - Companies such as Heavenly Stars Fireworks and Holy Smokes make pyrotechnics out of human cremains. 

Knee Pain Came From Nowhere and Went Back to Nowhere

Last weekend, when I called to say hello, Mom took the call (which she does not always do). She told me that her knee "locked up". I asked what that meant. She got right to her point, glossing over my request to explain what was wrong. She was mad - steaming mad. "I really want some comfort. It's really miserable. What do you want me to do? Lie here and writhe in pain?" 
She wanted to be taken to the hospital right away. I probed gently for more information. "Mom, I never heard you say that you were having trouble with your knee. What are you feeling?"
She shouted, or more like whined, "Pain is pain. I woke up this morning and had this". I asked how it compared to the pain she gets in her belly periodically. She replied, "With belly pain you get a little relief in between spasms of pain. With this, you can't breathe".  "Mom" I said, "when you have a lot of pain, you can get help right away". I reminded her that her aide can call a phone number 24/7 and speak to the hospice service. The hospice nurse will instruct her aide what to give Mom. Hospice has stocked the refrigerator in Mom's apartment with morphine of all types -- oral, injection, even suppositories. It's all bundled in a bag tucked in the corner of the fridge. Mom's reply to that? "Oh, nobody told me I'm on hospice now. Well, with this knee there is nothing wrong with me. It won't kill me. I wish it would. Just ask my aide to give me the pain medicine to knock me out".
I asked her to hand the phone back over to the aide. Discreetly walking out of earshot, the aide told me that this is the first she heard of the knee pain. Mom had already been awake, had moved from her bed to her walker, and sat at the kitchen table where she ate a hearty breakfast. She even had walked to the bathroom leaning on the aide's shoulder.  I asked what she thought was going on. The aide said that Mom was bored and looking for an outing - for something to do. The emergency room was as good a destination as any.
Mom has not mentioned her knee again.

Trading the Emergency Room for Music and Massage

Mom's hospice provides services to her in her apartment. In addition to the nurse who visits once a week, the program also offers weekly visits from a music therapist and a massage therapist. "How nice! How thoughtful! How unique!", I thought. But, little did I know, hospice care programs all over the United States now routinely provide their clients with the dynamic duo of music and massage. I googled music and massage and found them to be joined at the hip when you add hospice to the mix. What seems to be a luxury turns out to be standard fare in the end-of-life hospice menu. It makes financial and policy sense. By agreeing to go on hospice, Mom had to acknowledge that she understands that she probably has less than six months expected life and that she does not wish to undergo invasive interventions if and when she experiences a medical emergency. By foregoing expensive (and unpleasant) care, the participants in hospice programs are freeing up substantial resources.  I read somewhere that 50% of the medicare patients who passed away in the last year were enrolled in hospice programs.  Redirecting funds away from unnecessary emergency room visits and toward palliative and comfort services such as music and massage seems quite sensitive and humane to me. Earlier, as we were anticipating the therapist's visit, in Mom's befuddled state, she ranted to me that the government wastes the taxpayers' money by paying $300 an hour to those therapists and they don't even know how to play music. Nevertheless, she agreed to allow the music therapist come to her home to play for her. A twenty-something young lady comes to the apartment with a guitar strapped onto her back, clutching an iPad preloaded with songs that 90 year olds can relate to. During the session last week, she got dressed, laid in her reclining chair in the den; and joined by my sons Gordon and Alex, we sang together. Here is a video clip of Mom following along with the therapist to "Let me call you Sweetheart" (Gordon's knee in the foreground).  We younger generations fumbled with the words, but Mom had them hard-wired in her brain from her youth. It was soothing and sweet to sing along together. We sang Edelweiss and then Amazing Grace brought tears to my eyes - especially hearing Mom belt out the words "a wretch like me".

As to the massage therapy, Mom had refused it. I learned that she had told the therapist to go away.  "Why?" I asked. Because, she said, "A massage is a lousy substitute for sex. If you want to have sex, you should just have good sex".  That's my Mom. Feisty to the bitter end.

Dementia Diary of the Day

July 23, 2015 was a particularly wacky day. I went into her bedroom around 9:00 AM to say good morning and sit by her bedside for a visit.  Mom had been awake most of the night before. When she has not slept well, she often is confused the next day.  Boy, was she ever "confused". The things she said were so random, so vivid, so weird, and came out so rapid-fire, that I grabbed my iPad and started transcribing.

"Barbara, watch out!  A rat just jumped into your coffee".

"These apples are not very good". 

"See that shower cap over there?" (There was no shower cap anywhere nearby). "I want to put it on my head". 

"Is Dick coming to the party tonight?" (I don't think I know anybody named Dick that she knows. I asked her who Dick is). "Don't you remember? He was here last night". 

"Barbara, has anyone ever turned over when they sit in one of your red chairs?"

"This is a handmade table from a well known furniture maker. David keeps his chairs in the attic over his garage". 

"Well, I had an experience this morning for being punished for an adult action. I decided that my husband's behavior was less than sterile so I asked Richard to come but I forgot my husband wasn't sick or dying. But my husband did not forget it". 

"I gotta get my feet off the floor. They are glued to the floor". (Actually, her feet were in bed, under the covers, with the rest of her).

"If you knew what determination it took for me to get out of the recliner this morning, you wouldn't believe it". (She had not sat in the recliner for days). "The door opened and a female voice was there. Thank god it was Little Annie". (There is nobody named Little Annie in her life).

Mom pulled the edge of the blanket up to her lips and began to chew on it.  We asked her why she's putting the blanket in her mouth.  "So I can get into it faster". 

"What should I do? Jump out of a window? But I live on the first floor" I asked why she wants to jump out of the window. Her answer:  "I have lived too long".

"If somebody asks about me just say 'Kick the old goat off a hill'". 

She then turned her head toward the vacant space in front of her and took on a stance like she was deeply engaged in a conversation, "Jim, is your mother still alive?" She paused to await a response. A few moments passed, and I asked who Jim is. "Barbara, don't ask me again about Jim or I'll clock you". 

"Alex, go clean up the kitchen floor".  (Actually Alex was in the room, but actually the kitchen was spotless as usual).  Alex said, "Grandma, the floor is clean". He threw in "I already swept it". Mom said, "Well then, pretend you are David and clean up the kitchen". 

"When are they going to take those things off the piano?" (She does not have a piano, nor has she had one in her home for over 50 years). "When the guy comes, have him take them away.  Don't be so pessimistic about it".

"Don't put any more pepper on everything".

"Who ironed your shirt? They do a nice job". 

"I don't know an Irving from a swerving". 

"Please give the cabbage to the pigs". 

"If I get down flat on my back and mama wants to see me, she can see me better. I don't want her to hurt herself because I love her". She puckered up her lips and blew a gentle kiss in the air to her mama. (That was a particularly sweet departure from the unpleasant memories she has evoked about her mama).

"There is a burly black man leaning over me and I don't want to pick all those fleas out of his beard anymore".

The final one I recorded before I put my iPad away: "How can you eliminate vitamin C?"

For Dying Out Loud

I write and post these notes about my mom as she lays dying. This is really intended for those of us who know and love her. Does it invade her privacy? Why open her story to the world beyond her inner circle? I figure that so much information is out on the internet that it is very unlikely that anyone would find this. Even if they did, would anyone care about our family's experience?

And maybe, if someone does stumble on this blog and it helps them, then I'm grateful. 

Death by 1,000 Paper Cuts

Mom's body is shriveling up as her excess pounds melt away.  Until she started to fail, she had carried a lifetime of the weight of a person who loved to eat - the richer and fattier the better.  Grey Goose vodka, fried pork rinds, Russell Stover's nutty, chewy and crispy chocolates were among her favorites.  But, since she started down the path of getting ready to leave the world, she has lost and failed and quit — little by little by little. I think of her losing weight, fading away as being like death caused by a thousand paper cuts.  She has not opened her eyes in months. Since Mom lost her vision to the double whammy of macular degeneration and glaucoma, she has not even bothered to try to see.  She is permanently closed for business. Her hearing comes and goes. Mostly it is gone. When I try to have a conversation with her, it’s probably just as challenging for her as it is for me. She shouts back what she thought I said — usually a twisted jumble that’s about 75% right. I repeat so she understands; but is a tiresome routine until she finally grasps all of the words and the meaning intended. So, our conversations have also become thin - just like her shrinking body. It’s just too hard to really fill her in on what’s going on in the world’s headline news, or even the details of our family updates beyond the superficial. As her senses of sight and hearing depart, so has her verve and her spunk. She can’t take in much of life and the world, so if she can’t have it, she may as well shut it out. That’s what she has decided to do when she says she’s ready to go. It’s just that her body is still cranking along, without direction, without purpose, and without her wanting it to.

When "Perfect" is Peverse

The hospice nurse visits mom's apartment once a week, on Thursdays. She arrives with a brief agenda. She asks for updates (nothing new), offers to answer questions (hardly any), and takes mom's vital signs.  Every single week since hospice began, mom's vital signs have been "perfect".  On Thursday, after checking mom's blood pressure, pulse and oxygen absorption, the hospice nurse cheerily reported that all signs are excellent.  She added, "just like a 20 year old". 

That news is disheartening. I think to myself, "that's not perfect; it's not the news we are preparing ourselves to hear".  Mom says out loud what I was thinking. "Well then how am I going to die?" Really good question, Mom. She signed up for hospice because she has decided that she does not want to live any longer. Her life slips away; but the slipping is going much too slow.  Her cancer is probably growing back again in her colon, but we don't know for sure. By agreeing to go on hospice, she has freed herself from being poked and jabbed for blood tests and other diagnostics.  No MRI, no X-ray, no CT scan.  Why? There is no point to uncover the disease, to know what or where it is.  Even if we know for sure that a tumor grows, there is no action to be taken to attack it.  She will not undergo surgery, chemotherapy or radiation.  She will not suffer the discomfort of hospitalization to fight disease.  She will not be rushed in an ambulance on yet another 911 call and endure a long wait and ordeal in the hospital emergency room.  She has already surrendered in advance.  She waved the white flag even before the enemy clearly presented itself.  In essence, by agreeing to enter the hospice program she has given up on trying to live.

That's where the perversity enters. She wants to succumb, to be overtaken.  Yet, her broken down body keeps chugging along, producing vital signs suggesting that she is vital; when she is anything but.  Last week, when the chirpy nurse announced mom's strong indicators, mom said to her aide, "If I'm not going to die, I may as well get my hair done". Together they struggled to sit her up and change her from her perpetual nightgown into a jogging suit (a ridiculous name for something that covers the shriveled limbs of mom's body which lacks the strength to sit erect in a chair).  When I visited her this week, I found her laying in her bed with her roots dyed and her hair permed. Even though her hairdo is lovely, it is overshadowed by her slack face, her folds of skin in layers,  after 50 pounds melted away - while she dies excruciatingly slowly in her bed.  

A Different Kind of Journey

NOTE: I posted this on my worldgrazer blog on June 9, 2015. There is much to say and share as mom drifts through hospice, so I started this separate blog just for that.

Flying over the Serengeti in Tanzania

Bags ready to go. But where?

My mother is ready to depart this world.  She is tired of living and has announced that she wants to die. She said that she is all packed up and she is just waiting. She's not suffering from a terminal disease, or even from a chronic disease. Rather, she has sustained loss after loss after loss, until she just feels beaten down. She is blind. She has trouble hearing. Her balance is terrible, making it impossible to walk without someone constantly by her side. She was asked to leave the singing group in her elderly home because she could no longer follow the words. The bridge group squeezed her out a long time ago. She outlived two husbands. She needs 24/7 aides to get through the day safely. Moving in and out of a car is just too hard. So she stays in her apartment. Recently, she started opting not to get up to go the kitchen for a meal, choosing instead to sit on the edge of the bed to eat. Scooping her food onto a utensil is history. Now she must be fed like a baby. Sticking with reality for the duration of a phone conversation is also gone. We can talk about the here and now just for now, but then she drifts into fantasy which has become her reality. "Guess what? I went to China yesterday for the day". "I made reservations at Claridge's in London because I haven't been to the Tate in a while". "The company is sending me to Russia because I'm the only person who speaks Russian and they know it".

I got my wanderlust from mom. Ever since she was a little girl growing up very poor in rural Virginia, she knew there was an exciting world to be explored and she resolved to see it all. She loved a photo book of the world's wonders that she used to leaf through with her grandfather. It's called "Shepp's Photographs of the World". For her 70th birthday, my stepfather hunted down a copy, long out of print, and gave it to her. She wept in gratitude when she opened his gift.

She has promised to leave the book to me. The usual suspects were her early checklist -- Big Ben, the Eiffel Tower, Roman Colosseum, Matterhorn, the Pyramids. But, the more she traveled with my stepfather, who made it possible for her to realize her travel dreams, the more exotic her goals became. She just had to go to Mongolia and sleep in a yurt. She went to Djibouti -- well, just because. Of course, African safaris were early items on her list. I remember her telling me about when a baboon crept into her hut while she was at dinner, dumped out the contents of her purse onto the bed, twirled open her lipstick, and ate it. After my stepfather passed away in 2001, she kept traveling, into her 80s. She hadn't been to Antartica, so she signed up by herself for a cruise, stocking up on the thick socks and long underwear that she lacked in her Florida residence. She traveled with the Philadelphia Art Museum's trip to Bhutan. Later, she confessed that she had confused it with Angkor Wat, which she had also wanted to see. Bhutan was nice -- but too much walking, she said. So much, in fact, that the Museum later clarified some capability requirements for its travelers on subsequent trips. The trip leader probably did not appreciate having to keep mom safe while touring the temples, wobbling on her cane. She parasailed off a cruise ship in the Caribbean and when she had trouble landing after her flight, she mentioned to the crew attendant that she had a recent knee replacement. He told her she should have notified him before going up. Mom said, "If I told you, you wouldn't have let me go". That's my mom. Always charging forth for the next adventure. She is preparing for this trip, too.  But it is so terribly hard for me to watch her get ready to leave.

Mom and Me, Just Going out to Dinner