(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?"