THE REASON GIVEN BY THE PROGRAM DIRECTOR OF CARING KIND, THAT I WAS NOT GOING TO BE ACCEPTED INTO THE SUPPORT OR MEMORY GROUPS, WAS THAT I AM TOO FUNCTIONAL. SHE SAID BECAUSE I CAN USE A MOBILE PHONE AND A COMPUTER. IT MIGHT INTIMIDATE SOMEONE WHO CAN’T READ OR WRITE, OR USE A PHONE.

SHE CALLED IT HER “CLINICAL ASSESSMENT”.

I WAS SO HURT THAT I WENT INTO OVERDRIVE, INSTEAD OF WALKING OUT OF THE BUILDING AT THE LOBBY, I WALKED UP THE BACK RAMP TO AN OUTSIDE/ INSIDE DEAD END. I WANTED TO CRY. INSTEAD, I TURNED AROUND TO WALK THE STREET IN THE OPPOSITE DIRECTION FROM THE CAR. CALLED MY DAUGHTER. SAT ON A STOOP, NEAR GRAND CENTRAL STATION, AND WAILED TO HER. SHE TALKED ME OFF THE LEDGE.

CARING KIND WAS MEAN. IT IS A BIG DEAL TO RECEIVE A REJECTION LIKE THIS FROM THE ORGANIZATION THAT REPLACED THE ALZHEIMER’S ASSOCIATION IN NEW YORK.

I WAS LED ON FOR 9 MONTHS THAT I WAS WAIT LISTED.

I  ENDED UP BEGGING HER. BUT THE MORE I BEGGED THE WORSE IT GOT. I SAID, “ALLOW ME TO BE IN THE CHORUS, AS YOU HAD OFFERED THAT”. SHE RESCINDED THAT TOO.

MY SPIRIT WAS HUMBLE.

AM I AN UNTOUCHABLE?

EVERY HUMAN WANTS TO BE LOVED AND ACCEPTED.

I AM HUMAN.

I AM A WOMAN WITH YOUNG ONSET ALZHEIMER’S DISEASE.

I AM VERY TROUBLED BY WHAT IS HAPPENING TO ME.

THERE ARE NO SUPPORT GROUPS FOR EARLY ONSET ALZHEIMER’S IN THIS AREA. IN NEW YORK THERE IS CARING KIND.

I CALLED THE ALZHEIMER’S ASSN. AND WAS TOLD THE CLOSEST SUPPORT GROUPS ARE 2 HOURS AWAY IN WESTCHESTER. NOTHING IN NEW YORK. I DO NOT DRIVE AND CAN’T TAKE PUBLIC TRANSPORTATION ALONE (ONE OF THE THINGS I HAVE LOST THE ABILITY TO DO ALONE).

MY QUESTION TO CARING KIND IS WHY WOULD YOU NOT ACCEPT ME? ALLOW ME TO EXPRESS MYSELF WHILE I CAN,  OFFER FRIENDSHIP. UNDERSTANDING.

WHY WOULD YOU REFUSE TO DO THAT FOR A WOMAN WITH EARLY ONSET ALZHEIMER’S DISEASE?

THE PROGRAM DIRECTOR SAID NO.

GO AWAY.

 

 

The mornings are really hard. Getting out of bed and getting dressed is the first hurdle. I layed there for hours this morning reading Alz stories on my iPhone. Depression in Alzheimer’s. A very serious pit of depression and apathy.

I don’t sleep more than 4 or 5 hours, but that’s a lot compared to when I was tapering and detoxing from the Klonopin last year, which was 0-3 hours of broken sleep. That’s the drug I was on which likely unmasked the disease. Benzodiazapines are anticholinergics and have been linked to causing Alzheimer’s. The brain needs acetylcholine and anti-cholinergics inhibit acetylcholine. Klonopin doesn’t cause dementia in everyone who takes it, for sure, but it does in some.  I believe I am one of those who it damaged. Big Pharma is responsible. Psychiatrists and doctors are responsible.

Whatever pushed me over the threshold, contributed to my developing this terminal disease, we will never really know. Klonopin disrupted synapses, the neurologist postulated. Beta amyloid and frazzled tau. Brain crud that can’t be cleared.

There is a drawing I made years ago. The background is a dense black graphite with italic block white letters,  It’s an anagram that spells DEUNVOLS YMTERSY.

Deciphered that spells-

Unsolved mystery.

This defines it best, and it’s strangely prophetic.

2 pm, and I brightened. Finally dressed, fed with make up on. Dear husband puts out fruits in a bowl, yogurt with lecithin, and a green drink. I swallow my vitamins with the drink and chew a cherry baby aspirin that the neurologist says will prevent strokes.

Today is Saturday, and Dr. W, the neurologist, had scheduled me for an MRI in the city. I did not realize it was supposed to be 2 MRI’s, with and without contrast. My husband drove us to yet another appointment at the radiology center. When they told me I would have to have something injected by intravenous for the contrast, I said no, I would do the one without contrast, but no way would I let them shoot Gadolinium into me today. The neurologist will be peeved no doubt. He may push me to do it again. He may fire me for being a non compliant patient. Maybe not. At our appointment a few weeks ago he told me he thought I was doing pretty well. He has seen death in a year from Alz in a 36 year old man. In other words it could be much worse much faster. Where ever I am in the progression, I am walking and talking and know how to use a fork and a knife and a spoon. It’s all relative.

Previously, I’ve been injected with radioisotopes for the FDG PET CT, sat in a darkened room while it took effect and submitted to the CT imaging. I was injected for the Spect scan with a gamma ray isotope. I wasn’t going to be subjected to that. Not today.

I told the radiologist that I’ve been diagnosed with early onset Alz. We aren’t going to cure anything by injecting this in me today, and I wasn’t interested in being put at risk of dying today or even having to go to the hospital.  I have been so sick, I just did not want to be sicker. Not today. Not tonight. My dear husband was not thrilled, but he was not about to push. After all, with no cure for this disease, and very questionable treatment, why fight? There has been so much fighting. It wasn’t worth it. I would have the one MRI without contrast.

The lady technician gave me earplugs and put headphones over my ears to block out the banging sound the MRI makes.  She activated the bed that drove me in a supine position into the tunnel of the imaging machine. My husband walked over to me and I saw his torso  in the small mirror above my head, that reflected the opening. I felt his hand on my ankle, as he rubbed it gently.

When it was over, I went to the locker in the hall to retrieve my clothes, got out of the hospital gown and got dressed. We left the building and stepped out into the hot sunny  day. Small decisions are big ones now. We decided to cross the street and sit in an area with trees, birds, people sitting on metal benches.

When we got together 40 years ago, I couldn’t believe this tall drink of cool water of a man had fallen in love with me. He still has the sweetest smile I’ve ever seen on a man. This man should not be burdened by the insanity that has been our world since this began.  A smart man. A good man. A capable provider and attentive father. And yet here he is, now a caregiver, or care partner, or whatever name we assign to the mountain of things he does to take care of me and us. My handsome prince kissed a princess and 40 years later she became a demented queen. A modern Grimm’s fairy tale for the 21st century.

I’ve read quotes by people with dementia saying they are not going to have a pity party. Pat Summit said exactly that, and the disease took her in 5 years. She was tough and worked for two years.

It’s my party and I’ll cry if I want to, Leslie Gore sang into my ten year old ears.

People talk about acceptance. That there is no choice but to accept this and make the best of every day I am given.

Me- It’s my party and I’ll cry if I want to

Dylan Thomas said it so much more eloquently

Willem deKooning’s in Woman 1 painted it furiously decades before he had late onset Alz

My number has came up in the lottery of life and death.

I will hold hands with Jim Morrison tonight and sing…

This is the end, beautiful friend
This is the end, my only friend
The end of our elaborate plans
The end of ev’rything that stands
The end

Driving west through the city, we listened to the music of our generation- Creedence Clearwater, Dylan, Television, Joni Mitchell, Crosby, Stills, Nash and Young, The Rolling Stones.

I sang along. He did not tell me to hush, like he used to because I sing far off key. The roof window was open and my hair blew around my neck. I  checked myself out in the visor mirror, making sure I could still smile. I turned to my beautiful husband, my caregiver and I smiled. He smiled the sweetest smile back at me.

Every day is different.

 

It’s ironic that I’ve feared that I will lose my job, while what I am really losing is my mind.

I’m losing my mind and cognition, with the knowledge that it leads to further loss and sooner death.

In February 2017, I got the diagnosis from a well known neurologist that specializes in Alzheimer’s disease. It’s the second neurologist I have seen, and this time the diagnosis was made with an FDG PET CT, with a radioactive tracer. The first neurologist said I had the pattern of classic Alzheimer’s in October 2016. He ordered a Spect scan but wanted to do a lumbar puncture to see the tau’s. I guess I was lucky to have made the appointment with the second neurologist to avoid that gruesome intervention in my spine.

Hey doc, how long have I got?

At the last appointment which was a week ago, June 12, 2017, I complained about the many losses, whining with the fear that I am progressing quickly, and have progressed quickly in a year. The doctor stopped me in my tracks.

I’ve seen death in a year from Alzheimer’s, he said.

If I could write it, instead of live it, this would have made a good short story or maybe a novel, but there’s already Still Alice, the film based on Lisa Genova’s 2007 bestselling novel of the same name. I watched Julianne Moore’s academy award winning performance before anything was happening to me. That was 2014. This was before the symptoms. Alzheimer’s seemed so remote to me as I watched that film when it came out about 3 years ago. Little did I know that I had the disease in a pro-dromal state. Then I watched it again this year. Fiction became reality.

The symptoms started with major depression. I was 61. I’ve read that 40 percent of people with Alzheimer’s have depression. But I had no idea that depression and Alzheimer’s are related.
There had been so many depressions. The last before this was 2012 and I was put on Paxil and Welbutrin with a short course of Klonopin. I had been working hard but weight training. I had weaned myself off by replacing the drugs with better habits, exercise and chiropractic. I was pushing myself but felt stronger than I had in a long while.

The famous neurologist #2 who I see, has seen it all and is a little jaded about this horrible disease. I received the diagnosis over the phone. I asked why this happened to me. He said you reached a threshold.

At age 63, I am struggling with a complete change in myself. I’m trying to function despite lapses in memory, and degraded function. Some days are worse than others. When I have a bad day as I had today, I think I am not going to be able to withstand another one.

Here are some of the changes in me:

• I’ve been terrified to be alone since before the diagnosis;
• I’ve been unable to get out of bed and get dressed without support.
• I have experienced the near complete loss of appetite, yet I eat when food is put in front of me.
• I have become like a child, and my husband is now my caregiver and prepares most meals for me.
• I’ve been unable to take care of myself alone, go food shopping, normal everyday stuff. Activities of Daily Living.

I’m well aware of how if I did not have the support of my husband, I would surely die sooner. This is my life now.The stigma of the disease and the experience of it, as I muddle through each day, taken care of by my caregiver husband, living a lie professionally because of the stigma of the disease; unwilling to give up the fight for my life.Since September, I showed up for all my classes, even when I was sick. But I would not have been able to do it without a great deal of support. It was only through sheer will, and the desperation that I would not have a salary, and no professional career, if I stopped working, that to continue to work at the school I have taught at for the better part of twenty years, and pretend that I was okay. I put whatever will I had left into pushing myself to the task.I see that the students have been un-enthused by my flatness and joylessness (trying to hide my anxiety). I would race out of the classroom and rush home between classes, avoiding contact with my colleagues, many of whom I have known for decades.

I can’t tell anyone what is going on with me, is the justification for my quietness and withdrawal. I’ve read that this social withdrawal happens when the person with Alzheimer’s is aware that they have changed, when names can not be recalled (which has happened so many times now, for instance sitting next to a colleague at a faculty meeting, who I’ve known for years, and thinking about how I can’t remember her name, and having to look it up in the school directory).I had an excellent support system as a work around- a home health aide, who made sure I ate, because I am now unable to prepare meals for myself or food shop. I haven’t been able to go alone to the market for a year and a half or longer. My husband does all the food shopping.

The aide would make breakfast, help me to get to my classes, walk me part way, carry my book bag, make sure I had water and snacks and that my notebooks were inside with pencils and pens. I can see the regression and how I had become a child.

I resented her, this woman who was used to taking care of Alzheimer’s patients in nursing homes. What the hell had happened to me that I needed her? She told me stories about people who no longer know that a sink is a sink. She had never met anyone so early in the disease, someone who was struggling to function in the life they had known for decades. She would watch me try and compose paragraphs, continually crossing out words, correcting misspellings. She would warn me that if I did not push myself, I would end up in bed unable to get up.

I fought to keep going, but the strain was great and I ended up firing this woman, despite needing her support. Finally the frustration of what I have been going through was too much. My anger and rage spilled out on her. She threatened to call the police. I knocked the phone out of her hand. Alzheimer’s people lose it sometimes. I’ve lost it a lot.

This is a woman’s story. This is my story. I’m a first generation American, a baby boomer, born in New York City, right smack in the middle of that boom, in 1954.

I was born into the generation that created the counterculture. Like a million other girls, I screamed in my parents living room in ecstasy when I saw the Beatles sing “I Wanna Hold Your Hand” on the Ed Sullivan show in 1964. I writhed in sartorial splendor watching The Rolling Stones on that same TV show, unaware that they were forced to censor their lyrics from “Let’s Spend the Night Together” to “Lets Spend Some Tome Together”. I was that skinny girl wearing a flowered scarf for a halter blouse, sitting starstruck in the fifth row, my mouth agape with incredulity to the sight and sound of Jimi Hendrix at the Filmore East in 1969, grinding up against his stat, picking it with his teeth. I never made it to Woodstock. A year later, I listened to my vinyl record of Joni Mitchell spinning on my portable record player, tears streaming down my face…

I came upon a child of God
He was walking along the road
And I asked him, where are you going
And this he told me
I’m going on down to Yasgur’s farm
I’m going to join in a rock ‘n’ roll band
I’m going to camp out on the land
I’m going to try an’ get my soul free
We are stardust
We are golden
And we’ve got to get ourselves
Back to the garden

Let’s spend some time together. Let’s Spend the Night Together.

I have a story to tell you and time is of the essence. I’m an American baby boomer, and I have been diagnosed with early-onset Alzheimer’s disease.