The Alzheimer’s tourist/ The Alzheimer’s patient

Suddenly Mad- Feb 25, 2018, the sleeping beast within

The Alzheimer’s Tourist

I’m an Alzheimer’s tourist visiting the land of Alzheimer’s and dementia.

Creativity is not damaged in Alzheimer’s, and since I made art and drew for so many years, it’s a part of my procedural memory.

The drawing was inspired by a woman who is a patient of my current therapist. It’s supposed to be a composite of her face and body, superimposed on an ancient street. The other elements, fire from the windows, the drawing of the Congolese Nkisi Nkondi sculpture, form a kind of prayer for the preservation of my soul. This one is Surrealist , although quite tame compared to Dali, Magritte and Ernst. Surrealism releases the creative potential of my unconscious mind, by the irrational juxtaposition of images.

Suddenly Mad- Nkisi Nkondi sculpture from Nigeria

The wooden figure is a Nkisi Nkondi (a power figure is a magical charm carved in the likeness of human being, meant to highlight its function in human affairs). I bought it in Paris from a Nigerian man in a market, who ran after me and accepted my lower offer, when I could not materialize the 300 Euros he wanted for the trade.

In ancient Congolese rituals, nkisi nkondi can act as an oath taking image which is used to resolve verbal disputes or lawsuits (mambu) as well as an avenger (the term nkondi means ‘hunter’) or guardian if sorcery or any form of evil has been committed. These minkisi are wooden figures representing a human or animal, carved under the divine authority and in consultation with an nganga or spiritual specialist, who activates these figures through chants, prayers and the preparation of sacred substances which are aimed at ‘curing’ physical, social or spiritual ailments.

In todays world such a rituals may be purely superstitious, but someone carved this sculpture with great intent, and to me that soul is embodied in the figure.

Art is alchemy. Both alchemists and artists are fascinated by the mystery of a transformation which to some extent is guided and shaped by themselves.

 

Making art allows my spirit to take flight, instead of feeling like a dybbuk that has taken hold of me and changed me into a person I am not. https://en.wikipedia.org/wiki/Dybbuk

Actually the woman who inspired the drawing is a 300+ pound woman who is homeless and is also my therapist’s patient. She was sleeping in her waiting room sprawled out over 2 chairs. I am always looking for inspiration, I snapped her picture. I admit I made her thinner and more graceful. The rest is my imagination. Not a hallucination.

Suddenly Mad- Feb 25, 2018 - the primordial beast within - detail of the body

I saw a therapist for 9 years, from 2006-2015. The relationship ended in June 2016. After everything really became too much for me. At the time my entire life fell apart. After I began to lose my mind, as a result of being put on psychiatric medications and Klonopin by a psychiatrist who did not know what he was doing.

My long time therapist, Jon, was an Israeli, and I had grown quite attached to him. I thought he truly cared about me. He was younger than me, but a kind of surrogate parent. The loss of seeing him was devastating to me, and still is. His office is in Manhattan, and I sensed the impending loss of my independence when he refused to see me again.  At the time, I did not know I had Alzheimer’s disease, of course, but I knew that whatever changes were happening to me were an insanity in the making. I just thought I was crazy. I didn’t know I had a brain disease. I had begun stuttering and became hyper-verbal while taking the Klonopin, and tapering from it. I had lost my previously normal sleep cycle. I was having mini comas as a result of getting 0-3 hours of broken sleep a night. I’d be sitting at my computer, and my head would fall to my chin, out cold for a few seconds at a time. I did not know my behaviors and mood swings were neuropsychiatric, and a result of what was happening to my brain. It was terrifying. I tried to function as normally as possible, but ultimately even that became impossible.

Jon had seen me go into and recover from many relapses of depression in which medications prescribed by a psychiatrist pulled me through, with his weekly sessions as an adjunct. Then the medications stopped working. That was five years ago. I then began a vigorous exercise program of weight training. Within months, I felt stronger than I had in many years. I thought I had beat the depressions, and before I suddenly plummeted, 2 years and 9 months ago, I was doing fine. I was happy and productive, teaching, writing scripts, directing a play, traveling. Then it all suddenly unraveled. Invasive dental work, was followed by intense anxiety, scattered thinking and then a depression so dark, I could barely move.

I started to miss appointments with Jon. I lost my energy and could not push myself. Jon recommended I see another psychiatrist, who I made an appointment with and went to see that fateful day in November 2015, when he prescribed medications that changed my brain chemistry and according to neurologist #1, unmasked the disease.

There was never a suggestion from the psychiatrist I did end up seeing, that the depressions and anxiety were neurological, until I saw the first neurologist at Columbia Presbyterian, who said that the depressions I kept relapsing from were not primary depression. My depressions were not a product of neurosis, not a mood disorder- they were manifestations of brain tissue loss. Cognitive dysfunction in major depression and Alzheimer’s disease is associated with hippocampal-prefrontal dyconnectivity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5476659/ 

Neuropsychiatric symptoms in Alzheimer disease (AD) and other types of dementia are extremely common and often much more troubling than amnestic symptoms. Now I learn that they are particularly common in younger onset Alz. I suspect the same happens in forms of Fronto Temperal dementia and Lewy bodies disease. Initially, cognitive and amnestic symptoms were not my presenting symptoms. What was changing was my experience of reality colored by intensely changing moods. Yes I know it sounds like Bipolar disorder. That’s what the prescribing psychiatrist thought. Turns out it’s not (although a geriatric psychiatrist has told me I have loosening of association and flight of ideas, and that my thinking is crooked and wanted to prescribe medications for bipolar disorder).

I see a woman therapist now, who is in her fifties. Lovely woman, but she’s not someone I would have chosen to be my therapist when I was well. Yet here she is my therapist on this last leg of my spiritual journey. She’s a Christian pastor, has a PhD in clinical psychology and a masters in social work. Ironic that I end up with a Christian pastor for a therapist. Me- the BIG Jew (my husband used to call me). Culturally she is so very far from my life’s experience, but no matter, she’s experienced and helps me deal with the tragedy of my circumstances, puts up with my erratic personality, listens to my rants, and takes my insurance. My daughter who has been looking out for me and trying her very best to help me, found her for me. The location is good, only 4 and 1/2 blocks from my house. For a woman who is starting to get lost when I venture far from my home, this is a very good fit.

Therapy for a person with Alzheimer’s is mainly behavioral. It teaches me how to better deal with my own clingy behavior, which drives my husband nuts. How to temper my temper, which gets out of hand if something is moved, or if we are low on paper towels, and or something nonsensical triggers me, and I fly off the handle. I have lost my filter, and said and done things I regret, for instance when I screamed in the middle of the night when a cabinet in which I kept a small jar of Vaseline, I thought was “there” wasn’t there, because my husband had moved it. Therapy with this therapist/ pastor helps me contain myself better. I certainly don’t want to end up in a psychiatric hospital because I can’t find the Vaseline. She helps me be more mindful, which often means simply don’t react, and find ways to redirect myself.

I’m emerging from the period of grief and anger. Sure my life fits into a virtual shoebox. So small. so confused. What do I need now? Keep it simple. 2 meals a day, my supplements, some exercise, a very reduced wardrobe, the love of my children, the care of my husband/caregiver, playing with my adorable granddaughter when I get to see her, my iPhone and a computer connected to a WiFi network, the occasional Netflix flick, my sketchbooks and art supplies. A comfy bed, my jammies, a shower stall, my bathroom. Cookies are important. Zoom chats with Jackie, DIA, Dementia Mentors cafe and my dedicated and much more stable than me dementia mentor. It’s too late for me to create a bucket list of all the things I want to do before I’m gone. Now less is more, and simply going for a walk, and moving my body is a vacation.

I am witnessing the sometimes slow, some days rapid deterioration of my mind and body, and trying my damnedest to document it while I can, through drawing and writing. That is my work now. Having the energy and fortitude to keep going.

The disease wants you dead, the new home health said to me. It wants you to stay in the bed. I am in a wrestling ring with this monster. One day at a time. Often one minute at a time. Margery says I am stubborn, and I am a fighter, and maybe will be this way until the end. She on the other hand, practices acceptance. CBD oil and Purple Kush help her do that. She also swims 4X a week. I’m so envious of that. I can’t even stand to go out in the rain.

Exercise – I was pumping 150 lbs of weight in 2014. Now I am up to 6 minutes on the Nordic track bicycle. Alzheimer’s will do that to some people. I’d better start using it for more than 6 minutes, lest my husband decide to sell it.

I’ve told my current therapist that the therapy is getting there, getting ready and out the door and on time to her office. Speaking with her, and listening to her advise is an added bonus. It’s having the motivation to get up and get it together and go. I set alarms on my phone to be aware of the time I need to be dressed, teeth brushed, eat breakfast and look presentable. I make sure I have my keys and phone in my bag, and boldly am out the door. I say boldly because in place of the confident person I was, I have become so insecure and anxious, and my default is hiding in my house playing Lumosity games on my iPhone. Being intrepid, I walk those 4 1/2 blocks. Sometimes after a session I walk up the big hill beyond the 4 1/2 blocks, and snap a photograph of the New York skyline beyond the Hudson River that separates my city from Manhattan.Suddenly Mad- Skyline from Stevens hill Wow.  Imagine that. Walking a few streets requires fortitude now. My feelings of sadness, fear, stress, confusion and anxiety, are discussed with my therapist.  I’ve been seeing her for over a year- through the period when I was struggling to keep working. She has held my hand through the losses. She’s been privy to the parade of assistants and home health aides who have come and gone. We talk about my husband and how to best manage my behaviors around him. How to be mindful, despite the fact that I feel insane some of the time, and he has a hard time with my clingy and often times demanding behavior. What a contradiction, being mindful when one is losing their mind.

The act of pushing myself to get dressed and ready to walk up the street, and get there for a session, is as therapeutic as the sessions. I say this because motivation and mobility have been huge symptoms for me. Now just going outside of my house alone is a challenge. Just getting out of bed and orienting myself through the first part of the day, is a challenge. Balancing my body as I walk is becoming harder. I force myself to get up and deal with the confusion, sometimes seeing double, not knowing what to do, forgetting the order of the routine. Then  I remember. Then forget. Then remember. Somehow I get it right.

Anyway, this is all the tedious typical stuff you are likely very tired of reading if you’ve been reading my posts. How I push and manage to keep going on in what appears to be a pointless existence is not novel reading any longer. A friend who I met over Zoom chats, and says he was diagnosed with Vascular dementia, told me that he does not read my blog. Too depressing he says. He is not progressing in Alzheimer’s, I tell myself. He tells jokes. He drives. He drove from New Jersey to Maine. He does not understand. I hope for his sake that he never will understand.

The homeless woman who is also my therapist’s patient, and inspired the drawing was sleeping in the tiny waiting room. Her abundant body took up almost 1/4 of the room. I’m the Alzheimer’s tourist who looks for inspiration and snaps photos of things I want to remember. So I surreptitiously snapped her picture. I confess.

I watched her sleep, jealously. I hardly sleep. 4-5 hours a night if I am lucky.  I spotted her months ago  homeless woman at the Social Security office, along with other people I had previously assumed were homeless, as I would often see them on the streets with their cups, hanging out on benches allocated for people waiting for the bus. I never thought to say “there but for the grace of G-d go I”. I used to think they were lazy. Now here I am receiving Social Security Disability compassionate care granted for Early Onset Alzheimer’s and sharing a therapist with this woman who really has the face of angel when she’s sleeping. I now realize these people lost control over their lives. I lost control over my life too. Different reasons, but I never imagined I would ever have anything in common with this woman. I do now. Irony. Does G-d have a sense of humor? He/She or I will call it my higher power, is teaching me humility.

Imagination and humility. While I would wager that this woman has not thought about me, I wonder about her, and how she became who she is, and I draw her sleeping face.

 

The Alzheimer’s Patient

  1. My neurologist told me yesterday, he would schedule another FDG Pet scan. That means another radioactive tracer injected, sitting perfectly still for a half hour in a darkened cubicle and then placing my body on a bed that moves into the scanner tube, while it takes pictures of my brain.  Should I pass on that? What good will it do?

Suddenly Mad- hallway Pearl Barlow Feb 26, 2018

2. The Institute for Rehabiltation. Help for people who have had strokes and may be able to benefit from rehabilitation. I am told after six hours of neuropsychological testing, that my attention and concentration have not declined in the past year, parts of memory have improved, but my ability to learn and remember a list of words is lower than last year, visual memory is in the average range but my visual spatial skills are quite good, processing is significantly slower (how quickly I think), I have an organized approach to planning and organization as demonstrated in drawing a clock, I have poor abstract thinking (I am literal she said), my mental flexibility is not good (she said she understood how this manifests in my day to day life), problem solving -not as good as expected (understands why I would have problems preparing meals). She said I have losses and it has affected my confidence. She said there is no cognitive remediation at this institute for neuro-degenerative disease, but that she could offer a psychologist who would do 6 sessions of functional memory remediation.

suddenly-mad-rusk-institute-waiting-area.jpg

Suddenly Mad- Rusk Institute hallwaySuddenly Mad- Elevator directorySuddenly Mad- Rusk Institute - my list and how the psychologist marked it and could do nothing for meHomework with the psychologist I was assigned to, was to group items on my list. Clearly she was not intent on helping me. She wrote the words sleep, regularity of schedule, consistency for (looks like an arrow), anx (think she meant to write anxiety) and confusion. My husband canceled the rest of the appointments, after she said she was only meeting with me because she was doing a favor for her colleague, and that she could not help me. She said the best thing I can do is make legal and practical plans for my progression and well, you know what comes after that.

SO in the final analysis- I’d rather be an Alzheimer’s tourist than an Alzheimer’s patient.

I will check in with my dementia buddies on Zoom chats, who wisely have told me that the “real” world doesn’t know what to do with us. I’ll keep seeing my therapist, try and increase my exercise, take photos for inspiration, keep making drawings, and write these “hello, I love you, I’m still here…will you please reply to my blog” salutations, and keep my fingers crossed that I am still able to remember how to spell or use spell check. If I can’t sleep, I’ll substitute drawing a sleeping woman with fire emerging from the windows of her heart,  as an antidote.

Suddenly Mad- Feb 25, 2018, detail face from the sleeeping beast within

 

12 thoughts on “The Alzheimer’s tourist/ The Alzheimer’s patient

  1. Dear Minna,
    As usual, your writing is very insightful, informative and so well explained. I have much enjoyed and learned from your observations and thoughts. Keep writing. You are an inspiration!

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    • My dear Julie, It’s always heartening to me when I receive an email or comment from you. Thank you so very much for reading my words and looking at the pictures. Did you think the drawing was weird? What did you make of it? I’d love to hear your interpretation.

      Sent from my iPhone

      >

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  2. No Minna, of course I do not think your painting is weird, lol. It is so very interesting and unique. I love the fire coming out of the windows. It shows to me a burning desire to fight to live and be. The ancient street below is in such contrast to the fire. Showing the way life truly is. Fires burning and quiet peaceful streets. Life is so very strange sometimes. Beautiful, joyful, peaceful, yet frightening, scary and ugly at times. You have captured it all in the painting of a woman who is in throes of a struggling life. Just as you are…

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  3. Very cool drawings Minna-i love them and yet again you did an amazing job-you are very very talented and skillful at drawing and have a knack for that. Very innovative and i love the sculpture especially-very unique and cool. You are so right Minna, it is difficult to find out what is wrong until you get an “official” brain diagnosis-you think it might be something temporarily-i am thankfully not there yet and hope never. Depression is awful and i have read that depression does have a link to Alzhiermers. Those appointments are very very nerveracking especially becuase you might be told some devastating news which you hope would never happened and you truly pray its positive. Your therapist sounds so lovely, selfless, caring, kind, gentle, and empathetic and sounds like her support has been absolutely wonderful to you-i am very very pleased to hear that you enjoy going to her. My Grandad gets annoyed by my Grandads behaviour and gets warn out by it sometimes-his temper drives her nuts!She finds it really painful and rightly so. I hope you are able to stay at home for as long as you can as ending up in a Physicatric hospital is awful-rest homes are mainly for people in the 80s, 90s, and occasionally in the hundreds but not people in there 60s like you generally. My Grandad had a fall two weeks ago and bruised his foot but thankfully not broken-he fell in the bathroom as his feet is very unsteady in the morning-we are going to buy him a walker to be more stable on his feet-walkers are very beneficial but he has bounced back but his physical and mental health is declining rapidly. He has started going to this free thing on Wednesdays and Fridays for Dementia people and is really enjoying it. We are so pleased. It is wonderful and gives my Grandma a break. Me and my Dad are doing a walk for Dementia in two weeks to raise money for it-it should be fun. I have heard people say that “Dementia is like being in a box which you can’t get out of”-such a nasty disease. So sad to hear you are degenerating fast-hope you remind static for a while and are able to keep writing on this blog and have a few good days. When Grandad was first diagnosed with Alzhiermers we used to say he had some ‘good” days when he remembered what he did and some “bad” days when he couldn’t remember what he did but everyday is now(almost)a bad day for Grandad-it is very rare for him to have a good day now sadly. That’s so mean your husband is wanting to sell it-you deserve it and gives you something to look forward to-good luck with the bike! What a beautiful photograph Minna-i love it! Hope you sleep better tonight but i don’t find your blog that depressing-i enjoy reading your blog and look forward to further posts. Take care Minna, and hang in there -you are coping so well-a credit to you!Sending lots of positive vibes from NZ 🤗😘

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    • Sam, I am sorry to hear that everyday is now almost a bad day for your Granddad. Why is that? is he able to dress himself and go out alone? How does he get to the groups he attends twice a week? Has he made any friends there? What are the other people like who attend?

      Thank you for your positive encouragement. It is one of the things that keeps me going.

      Minna

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  4. Hi Minna,
    thank you for your lovely and very very thoughtful reply-much appreciated. I think he has a bad day because he has stage 5/6 Alzhiermers and is very confused and doesn’t know what is happening and totally in ga ga land but still knows who some of us are-he knows who my auntie, my Grandma is(i doubt he will ever forget her or she will be the last person who he forgets, he says her name very very often which is good)me but not my name most of the time, my sister, my dad but not my mum and my uncle sadly. He has declined rapidly this week-he did the census survey-i presume they have them in America right?In the census he put he was Maori, and from Rotoroua from a tribe-his cognitive state has deteriated to the point he didn’t know what nationality he was on Tuesday and where he lived but again he still remembers us which we hope he remembers who we are till his death. My Grandma drives him to the group and he has a friend who he went to school with who goes and has severe Alzhiermers but slightly worse than him so they carpool so my Grandma takes them one day and his wife takes them one day-he goes on a Wednesday and a Friday there and it all works perfectly. I don’t think he has made any friend there-we are not sure if he remembers going there or not as it is very recent. The people who attend have Dementia too-some worse, some better. So glad my positive encouragement keeps you going-love, blessings, prayers, and vibrations from NZ.

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    • I love to acknowledge that I received another response from you, Sam. Younger onset is not an entirely different disease than late onset, as in your grandpa’s case, at least insofar as age and progression. But younger onset from what I’ve read has a greater burden of Amyloid and Tau, which are the damned culprits in the brain the neurologists think, which causes this. The neurologist told me that that’s why younger onset often goes faster. In a much older person the brain has built up greater resistance to Amyloid plaques, which causes the Tau (nerve cells) to twist, frazzle and die. This horrible disease affects even younger people too. My neurologist told me that he had a 26 year old patient wit Alzheimer’s who died in a year. I am wondering is there anyone under 65 in your grandad’s dementia group, or are they all over 80? I’m curious about that. In New York, I’ve met a 65 year old woman who has it, and though she is physically mobile, she is with a home health aide, and doesn’t know where she lives. Sadly the man Michael who I wrote about who was a successful lawyer, is in a wheelchair and in late stage (can’t talk, walk, or use his hands, is fully incontinent), and he is 70. I met another man who is 64 and was a plastic surgeon. He is more like me, not able to remember things and needs a home health aide, but can still prepare foods for himself and food shop. He has a cell phone and email, but confused about using them. He told me he was diagnosed 5 years ago.

      This very horrible disease is thought to triple in numbers by 2050 with 131 million people expected to be affected.

      Maybe you should be thinking about going into a field where you will participate in finding a cure or at least treatment to slow progression (Science).

      This is the World Alzheimer’s Report for 2016 the most recently published https://www.alz.co.uk/research/WorldAlzheimerReport2016.pdf

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  5. Hi Minna, thank you for your reply and so lovely to hear from you again. I will always try and do as many responses as i can here as long as there is something to say! I think the young age does because perhaps people’s brain cells aren’t as good as overs?You are right, young onset does go faster-not sure why-perhaps because you are younger?Who knows?Maybe it’s because the older you get the more brain you still have left?Intrigued to know. Probably because older people have more memory of past events? Wow, 26 years is so young and that is just way too tragic. Not one else in my family is there yet thankfully but i hope no one else in my family or your family is never there. I am not sure if there is anyone aged 65 or under but i will ask my Grandma-his friend who he goes with is the same age as him-87 but most likely older people i presume but will let you know on this post or other blog posts in future when i have asked my Grandma. Most people who are diagnosed generally have quite an amazing story and have great occupations like you and others. My Grandad is way past shopping and cooking, and doesn’t know where he lives now really-on Tuesday he was at the point where he couldn’t even remember what nationality and city he lived in-heartbreaking. Wow, 131 million worldwide-OMG!!Scary!! Currently 60,000 people in New Zealand have Dementia and by 2050 it is expected that 150,000 people will have it-OMG! Wonder how many people in America have Dementia now? Wonder how many people in America will have Dementia by 2050? Intrigued to know. hope and pray no one else in my family has Alzhiermers by 2050. Very interesting information there-thanks Minna. I would love to raise awareness in the future however i am not a scientist so i can’t sadly. The world Alzhiermers reasaerch looks great and i will have a look and a read-i am sure i will learn lots. I am dong a walk for Alzhiermers in 2 weeks to raise awareness for it-looking forward to it-it should be fun. Best, Sam

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