Child of the Sixties: Fragments, Fears, Memories

Suddenly Mad- Sgt. Pepper's Lonley Hearts Club Band - The Beatles album cover

Sgt. Pepper’s Lonely Hearts Club Band; album cover by Jan Haworth and Peter Blake

 I was born a little too late to be mesmerized by Elvis, the hip swinging King of Rock and Roll, who my older sister and her friends swooned over. I knew he made rock ‘n’ roll the international language of pop. I took note of the boys my sister hung out with on our corner, who combed their hair like him, and wore clothes that emulated his coolness, as they gyrated to his music on transister radios. But I didn’t “get” him. “I Aint Nothin’ but a Hound Dog” meant nothin’ to me.

You ain’t nothing but a hound dog
Been snoopin’ round my door
You can wag your tail
But I ain’t gonna feed you no more.

I screamed just like thousands of girls did when the four mop heads, known as The Beatles sang, I Wanna Hold Your Hand on The Ed Sullivan Show on February 9, 1964 (fifty-four years ago).

When John Lennon sang Girl on the Beatles 1965 album Rubber Soul, I was old enough to listen to the lyrics and be stirred by their meaning, and though sad melancholic love songs are just that, there is something in the lines in the last verse of that song, that I recognized as poetry.

Was she told when she was young
That pain would lead to pleasure?
Did she understand it when they said
That a man must break his back
To earn his day of leisure?
Will she still believe it when he’s dead?
Ah, girl, girl, girl
Ah, girl, girl

In the 50’s and early 60’s, there were television shows I watched as a kid, like Father Knows Best, in which we saw an American middle class family with mom, dad and their growing children in small city USA, http://www.imdb.com/title/tt0046600/mediaviewer/rm3014130432 These folks presented the stable family unit, and were exemplified by Jim Anderson, his wife Margaret and their three children, Betty, Bud and Kathy. My father didn’t always know best and my dad was no Jim Anderson. My mother was as far from Margaret Anderson as could be, with her broken English, and shopping cart. Though they tried to fast forward themselves into American culture, my parents were greenhorns, Jews who had been displaced, orphaned in the Shoah, and their identity was shaped by their history. My mom was always well dressed though. Best dressed. A tiny woman, she would shop at Alexanders, the local department store, and buy clothing that she would re-tailor to fit perfectly. As much as they dressed like the parents of my schoolmates, they were different.

That first time I saw the Beatles on the television in our living room, where the family would gather at 7pm on Sundays, I felt the stirring of what it meant to be a young American girl on the cusp of sexuality and identity. Wow. It was such a liberating feeling.

The Beatles broke up when it was no longer fun for them. How psychologically healthy.

Time shows us that the swinging pendulum who gave us John Lennon and Imagine, Give Peace a Chance, spawned a lunatic John Hinkley, who shot him dead outside of the Dakota, a building I would pass on trips to the upper west side of Manhattan. I remember images of Yoko Ono and John Lennon hosting their marriage from the their bed, saying if only the people who made war, would stay in bed instead, there would be peace in the world.

Suddenly Mad- All we are saying is give peace a chance - John LennonSuddenlyMad- John Lennon and Yoko Ono Give Peace a chance - marriage bed bed

George Harrison wrote All Things Must Pass, and died at the age of 58 from lung cancer. He was a deeply spiritual man who often said, `Everything else can wait but the search for God cannot wait,’ and `love one another’. Ringo Starr (Sir Richard Starkey) is now 77 years old and still touring with his All Starr band. Paul McCartney (Sir James Paul McCartney) is happily remarried at 75 and still touring and making music. My favorite quote from him- And in the end, the love you take is equal to the love you make.

All Things Must Pass
Sunrise doesn’t last all morning
A cloudburst doesn’t last all day 
Seems my love is up 
And has left you with no warning 
But it’s not always going 
To be this grey
All things must pass
All things must pass away
Sunset doesn’t last all evening
A mind can blow those clouds away 
After all this my love is up 
And must be leaving 
But it’s not always going 
To be this grey
All things must pass
All things must pass away
All things must pass 
None of life’s strings can last 
So I must be on my way 
And face another day
Now the darkness only stays at night time
In the morning it will fade away 
Daylight is good 
At arriving at the right time 
But it’s not always going 
To be this grey
All things must pass
All things must pass away 
All things must pass
All things must pass away
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The joyful moments pass too quickly. Today my husband held me in his arms and we danced a little bit to an old Eric Clapton song, In Heaven https://www.youtube.com/watch?v=ueXtbIQ3shY.
Music soothes the soul. It’s the one art form that exists through time, in time. Sound traveling through time.
The present. I can still remember what I had for breakfast. Berries, yogurt and a protein shake. My husband makes these for me every day. Then I had a vegetable omelet and toast with fruit jam. I am aware of the daily confusion getting dressed, and getting through the day. I talk to myself when I’m alone, narrating the steps of what I’m doing. Crazy, but it helps me manage.
Before this disease took hold, I thought I had the luxury of time and that my husband and I would have time to make plans, travel, enjoy our children and grandchildren. That was less than 3 years ago. Now time is folding in on itself, like the prions mis-folding in my brain. Relationships that I treasured are gone! Poof.
My husband pays for part time home health aides, who come to help me get through the day, offer companionship, help me to travel, make sure I walk, inspire me to push very hard to be dressed before they get here. Inspire? Inspiration used to be something that would fill me with joy. Ideas, creative ideas, looking forward…always looking forward. Now fortitude is needed to get out of bed and get dressed and walk up the street. Fortitude replaced inspiration.
Fear of the future: My husband calls himself an upstanding guy. He certainly is that. Caregiving is absurdly hard and he does it methodically. He makes sure to prepare nutritious meals, buys me books, and pretty much everything I need, and today he danced with me. He even held me in bed, something he hasn’t done in many many months. Wow. We must be softening. I know when he is stressed after working and driving and is exhausted he has no patience for me. Today he was sweet.
He has told me he would never place me in a home. I have read about these broken promises on the caregiver’s forums. But I am hoping that never happens to me. I am hoping I will be gone before that even crosses his mind as a serious consideration. Before my care is too overwhelming. Please. Bury me in the backyard next to the hyacinths I planted 4 years ago (would that be legal?). The great writer and thinker, Sir Terry Pratchett who had Alzheimer’s and died at age 66, was buried on his own property, I believe. Speaking of Terry Pratchett, here are some wonderful quotes from him https://www.buzzfeed.com/kayetoal/23-of-the-most-beautiful-terry-pratchett-quotes-to-remember?utm_term=.lr4WobK47#.xwRDjYWro).  
Yet, I read Thomas DeBaggio who five years after he published his books about living with this disease, was a babbling incontinent Alzheimer’s patient in a nursing home who could not use his arms or legs. His wife loved him and took care of him for the first ten years but it became overwhelming.
This is the reason people do not want to be around someone who has the disease. Fear. Fear that the person they are speaking to will be someone who becomes something heinous, or impossible to recognize or care for – unknowable. an overwhelming burden. I’ve watched the videos of people with Alzheimer’s shredding paper, killing imaginary snakes. Lord help me to not go like that. Give me peace. A woman I know told me her mother had Alzheimer’s and died at the kitchen table. Just like that. Her head plopped down on the kitchen table and she was gone. I like that. Here and gone. I want to be surrounded by my loved ones, my husband and kids, telling me it’s okay to go, and just closing my eyes and gone.
Enough you say. This is too morbid. Sorry. We all die I will remind you. I just don’t want this to be insanely weird and horribly drawn out. It’s weird enough already.

I don’t want to forget the love. I don’t want to forget my husband, my children. My friends.

I don’t want to forget the Beatles.

 

 

Self portrait in dementia

Suddenly Mad- Self portrait in DementiaIt’s getting somewhat harder to think and write, but I’m the Alzheimer’s trooper that carries on with my stream of consciousness writing, attempting to make sense of a world in which I get confused.

Fortitude. Fragmented thoughts. This is an illustration of what of what my mind is like now.

Every day that I am able to put my hands on my computer and write is a day that means I am here and the neurons are firing. Some days I’m better at coming to grips with the limitations, and though it makes me very sad, and takes a long time to express myself, I am here and still have insights and feelings I want to express.

I’m not able to make a movie from that script I wrote five years ago, that I had hoped to make into an astounding film about a Jewish dwarf who survived the Holocaust, hiding in garbage cans in Poland . Maybe someday someone else will make that full movie.

The Lilliput www.thelilliputmovie.comhttp://player.vimeo.com/video/91234297

It was meant to show that in the worst of times, even a person with handicaps can prevail. The script was inspired by a true story about a little person, a Jew, named Abraham Kerber, who was my late father’s friend. In his case, his handicap of being a little person, is precisely what helped him to survive. He was small enough to hide in places the Nazis didn’t look. Maybe my daughter who is a great filmmaker and a producer, will tackle this someday. I hope. Maybe my best friend, Harry, who was my film editor, and visits me every week, will still be around and will help her to complete this. I still can dream and hope, and perhaps just putting the idea out into the world, will bring it to some fruition somehow, someday.

In Judaism the Pirkei Avot teaches, “It is not your responsibility to finish the work of perfecting the world, but you are not free to desist from it either”.

Julian Schabel is the artist and filmmaker who made The Diving Bell and The Butterfly. Based on Jean-Dominique Bauby‘s memoir of the same name, the film depicts Bauby’s life after suffering a massive stroke that left him with a condition known as locked-in syndrome,after he suffers a stroke. He is completely paralyzed but mentally normal. A speech therapist and physical therapist try to help Bauby become as functional as possible. Bauby cannot speak, but he develops a system of communication with his speech and language therapist by blinking his left eye as she reads a list of letters to laboriously spell out his messages, letter by letter. It is revealed that Bauby had been editor of the popular French fashion magazine Elle, and that he had a deal to write a book (which was originally going to be based on The Count of Monte Cristo but from a female perspective). He decides that he will still write a book, using his slow and exhausting communication technique. A woman from the publishing house with which Bauby had the original book contract is brought in to take dictation. The new book explains what it is like to now be him, trapped in his body, which he sees as being within an old-fashioned deep-sea diving suit with a brass helmet, which is called a scaphandre in French, as in the original title. Others around see his spirit, still alive, as a “Butterfly”.

The story of Bauby’s writing is juxtaposed with his recollections and regrets until his stroke. We see his three children, their mother (whom he never married), his mistress, his friends, and his father. He encounters people from his past whose lives bear similarities to his own “entrapment”: a friend who was kidnapped in Beirut and held in solitary confinement for four years, and his own 92-year-old father, who is confined to his own apartment, because he is too frail to descend four flights of stairs.

Bauby eventually completes his memoir and hears the critics’ responses. He dies of pneumonia ten days after its publication. The closing credits are accentuated by reversed shootings of breaking glacier ice.

I think about Michael, the man I met at The Rubin Museum, who has Alzheimer’s and is 70 years old, who was a brilliant successful lawyer, and is now in a wheelchair, unable to speak or walk or use his hands. I think of him often. What is his experience now? What is going on in his mind? Is there a similar locked in syndrome in which he is having thoughts he can’t express? Would he have words to express what he is experiencing if he could somehow communicate? People have described those with late stage dementia as being empty shells. Jean Dominique Bauby did not have dementia, but he did have a stroke and because a perceptive nurse was able to figure out that as Bauby blinked his eyes, he was trying to say something, his memoir was written, and The Diving Bell and The Butterfly was made.

I wonder if there are thoughts, and stories, locked in Michael’s mind that he isn’t able to tell anyone about, because he can no longer communicate. I watched as his caregiver Jaime, sits close to him looking at his cell phone. I know that Jaime is a great aide to Michael, who keeps him alive. He dresses him in clean well tailored clothes. He brings him to the museum to stimulate his senses. Yet, there is no method devised for Michael to communicate his thoughts. Are there thoughts, memories going on within his mind?

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My observation: My mind is pieced together now in fragments from the past intermixed with the present. I remember a fragment and start to write about it. A thought, a memory. I see the relevance of the facets of memory to my experience now, but can not piece things together fluidly. Days go by. Night follows day. I’m a watcher of the flickering light.

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I showered today and washed my hair. Groomed even though I did not go anywhere and had no visitors. That’s normal behavior for anyone, yet for me it takes a good deal of effort. My husband is here with me and it certainly provides more self respect to be dressed and presentable. Today he is calm and considerate. In the drawing of myself, “Self Portrait in dementia”, I am the antithesis of this. It was made several days ago. It’s me in a bathrobe and is a self portrait when I’m not groomed and presentable. Some days I am more debilitated. Some days I am more depressed. Today I was afraid I wouldn’t get dressed. I did and sent my daughter a photo. My small triumph of the day.

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Many times now the words come out wrong, letters jumbled and thoughts unable to fully form themselves into a cohesive whole. When I go and correct a word, I lose the thought that propelled the sentence. I read about others with this disease writing books and pleasantly managing their relationships, and facing each day with courage and compassion. They travel alone by train, are a part of life. Is it that I have a rapidly progressive form that is a different phenotype entirely? How is it that 2.9 years after the onset of this I am not able to do the things that other’s can who have this diagnosis?

I have part time paid carers who come to my home to offer companionship and help get me through the day several days a week when my husband is at work. To have reached a point where I need this help less than 3 years from the onset is ominous. One of them told me that the disease wants me to stay in bed., when I told her how hard it is to get up and get dressed. The disease wants you dead she said, and fighting it is getting up and getting dressed and functioning as much as one is able. One of them says he visits a man in his 70’s with late stage Alzheimer’s, and he makes sure to help him walk around his apartment.

 

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When I was first diagnosed in January 2017, the neurologist said there is cognitive remediation available at Rusk Institute. That was a little over a year ago. I jumped at the “opportunity”, thinking that some magic wand could help me.

Almost year after the diagnosis we received a call from The Rusk Institute for Rehabilitation. I was to have my second round of neuropsychological testing. Through a sequence that included tests of memory, attention, executive function, speed, perception and visuospatial skills, a comparison was made to the tests I had taken in November 2016 when I saw the first neurologist. The tests administered at that time showed dysfunction and impairments in the areas of speed and processing as well as certain other cognitive domains. 6 hours of tests. The first time the materials used were a computer as well as pen and pencil tests, and physical tools where I placed little metal shapes with alternate hands into grooves. The materials this time were different. For example, this time I was given a block of wood with 3 pegs and colored disks of different sizes, and had to figure out how to stack them so that each one was smaller than one beneath it. I moved the disks onto the different pegs until I finally had the disks stacked correctly.

I was curious how I would do a year later on these tests. The results showed that my Attention and Concentration  have stayed the same. Interestingly I was told that parts of Memory have improved, as shown by an improved ability to listen to a story and learn and remember some of it’s content. My ability to learn a list of words was slightly lower than last year. My visual memory was in the average range and she didn’t see a huge delay. She said my visual spatial skills are quite good. She said that I copied a figure methodically; could draw a clock, see visual targets and could scan. I put physical things in my world together correctly, she said. The areas that are frightening, and which I am aware of is that Processing  is significantly slower. This means how quickly I take in information. How quick I think. The other areas that declined were in Flexibilty which The Trail Making Test (Part B) measures (mental flexibility, divided attention, and the ability to quickly sequence items). This explained how this manifests in day to day life (dressing, preparing a meal). The same was noted in my problem solving ability. In the end she said it’s not a big decline from last year.

She has no idea. Last year I was still working, I was able to still process lots of information, enter grades, sequence information much more quickly.

She told us that Rusk is not a place for cognitive remediation for Alzheimer’s. Is there such a place? Rusk is a place for remediation when there is no neurodegenerative disease, such as patients who have had a stroke and work with their psychologists to determine cognitive areas of functioning that may have been affected by the stroke to strengthen them. Still she offered 6 sessions with a psychologist to improve functional memory.

I met with the psychologist last Friday. The result of the one hour session is that she told me to buy a notebook planner. Wow.

As weird as my systems for reminders are, a combination of my iPhone and the list I write every day in a notebook that I keep on my kitchen island, which reminds me to take my medications, to eat, to take my supplements, to draw and write, is the system that has gotten me to this point. If my dementia mentor had not suggested (over a year ago) I put my clothing on a hanger the night before, I would still be having trouble getting dressed. I figure out which item of clothing goes on first, because of the order in which I drape things and clip things to the hanger. My compensatory strategies are not great, but so far they are working. I get dressed. It’s not getting easier but somehow I do it every day. As long as I can dress myself and shower, and walk and talk, and am not incontinent, I do not exhibit the overt signs of this disease.

There is no cure. There are compensatory strategies. Reminders. My iPhone, my computer. Rusk Institute is another place that can not offer me much in the way of remediation. It’s my own will to carry on despite the disease that makes me live. Not nearly as well as I’d like. How I wish I did not become disoriented when I go out. How I wish I could still travel alone, on the bus, the subway, a plane. I was a world traveler.

The traveling I have done today is my fingers on the keyboard describing my interior monologue.

 

 

Making Amends

Suddenly Mad - I'm sorry I hurt you drawing *I’m no angel. I’ve hurt people.

I’ve hurt those closest to me. I’ve hurt my husband who is now also my caregiver. He takes care of me. The role reversal has been extremely hard on him. He has to do more for me than he has ever had to. He’s said some very hurtful things to me which have made me feel horrible. I’ve retaliated. We have had a lot of conflicts about how to live together in peace. He resents how dependent I have become. I WAS VERY INDEPENDENT before this horrible disease. Things have gotten pretty nightmarish between us many times since the onset and progression of my illness, causing excess disability. Then things fortunately return to a calmer place. There is love but it is a different love than that of equal partners, as it was before I got sick. I’m angry that this happened to our relationship and so angry that Alzheimer’s has happened to me. Why me? Why at this age? It’s not his fault though. It’s the fickle finger of fate, and I got unlucky. We both did.

I still have to accept my part in how I react. I have to learn how to control my anger and reactivity. Knowing this and also knowing and seeing that I have lost my filter many times is my job now. How to do this? How to better control  my symptoms like irritability which leads to poor impulse control? Geriatric psychiatrists prescribe Risperdol and Seroquel to agitated anxious Alzheimer’s patients. Depakote (Valproic acid which my friend Howard told me made him drool, is another one that’s prescribed). I’ve seen some of the effects of the antipsychotics – tardive dyskenisia, stroke! There’s got to be a better way.

How to remain in a calm state when I am triggered, when I disagree? I’m working on it. I’m relearning tools so I can remain calm and centered and draw on the strengths I still have to be able to be more pleasant to be around. I see that we all suffer. I want to to become more empathic, want to listen and not just react. Even while experiencing changes every day. To find that calm center in the storm requires tools.  Yes I am angry and despairing. I’m not experiencing a contented dementia, which some apparently do. However, in order to remain in my home, stay married to my husband, maintain a loving relationship with my kids, have friends that will accept me and want to be around me, whether on Zoom chat or in my community, I need to hold it together and have the tools. Self regulation.

The drawing is an effort to tell those I have hurt (you know who you are) I am truly sorry. I can’t undo the damage, but I can take responsibility for my part in causing harm. You may disagree with me about my choices. There is time to agree to disagree. I will not fully lose my mind by next week or next month (I hope). In the meantime I am seeking the tools to remain centered and calm.

That’s where 12 steps of AA  gives me pause and exceeds anything a therapist or  psychiatrist can offer.

Step Eight and Nine address making amends:

  • Step Eight: Made a list of all persons we had harmed, and became willing to make amends to them all.
  • Step Nine: Made direct amends to such people wherever possible, except when to do so would injure them or others.

Making amends is about keeping my side of the street clean. Whether I am justified in getting angry doesn’t matter. It’s how I handle the things that hurt me that is the issue. Becoming agitated, angry, distraught, demanding, overbearing, acting out is never useful and is destructive.

The following are the Steps of AA.  I replaced the word alcohol with Emotions and Reactions to others.

  1. We admitted we were powerless over Emotions and our Reactions to others–that our lives had become unmanageable.
  2. Came to believe that a Power greater than ourselves could restore us to sanity.
  3. Made a decision to turn our will and our lives over to the care of God as we understood Him.
  4. Made a searching and fearless moral inventory of ourselves.
  5. Admitted to God, to ourselves and to another human being the exact nature of our wrongs.
  6. Were entirely ready to have God remove all these defects of character
  7. Humbly asked Him to remove our shortcomings
  8. Made a list of persons we had harmed, and became willing to make amends to them all.
  9. Made direct amends to such people wherever possible, except when to do so would injure them or others.
  10. Continued to take personal inventory and when we were wrong promptly admitted it.
  11. Sought through prayer and meditation to improve our conscious contact with God as we understood Him, praying only for knowledge of His will for us and the power to carry that out.
  12. Having had a spiritual awakening as the result of these steps, we tried to carry this message to others and to practice these principles in all our affairs.

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The disease of Alzheimer’s is very hard to accept for the person who has it, as well as for family members. There are a host of physical symptoms that impact our daily lives. There are emotional, psychiatric and cognitive issues that warp our existence. When Alzheimer’s and other dementias disrupt memory, language, thinking and reasoning, these are referred to as the cognitive symptoms of the disease. Behavioral and psychiatric symptoms describe a large group of additional symptoms that occur to many in some degree. People may experience personality changes, anxiety, depression, sleep disturbances, agitation, delusions (firmly held belief in things that are not real), or hallucinations (seeing, hearing or feeling things that are not there). These are some of the most challenging and distressing effects of the disease.

 

Alzheimer’s has made me lose many abilities, but the one that has been most distressing is the loss of my filter. I regret this. I’ve lost friends because if it, and I’ve lost respect.

I’ve hurt my daughter, who I love dearly. I’ve taken offense with her in many issues around this disease – legal, medical, moral and human. I’ve been angry with my son who I’ve always adored. When I was first diagnosed I became tyrannical, when my son refused to acknowledge and accept what was going on.

My original diagnosis was Mild Cognitive Impairment due to Alzheimer’s pathology. Now my husband and adult children are aware of my progression because things are not getting better. My daughter thinks medications will lower my anxiety and lift depression. I have continually made her aware that Ativan and Klonopin may have contributed greatly to my decline http://myalzheimersstory.com/2015/10/28/lets-get-dead-right-about-dementia-and-dangerous-drugs-and-lets-do-it-now-if-not-sooner/

She has told me that she can’t spend time with me unless I take medications. I’m very sad about that.

I’m now advised by an elder care attorney to sign documents that will prohibit me from having my name on the deed to my home. I am to prepare to become Medicaid eligible so that I can be placed in a nursing home when is too overwhelming.  The underpinning to my fears are quite real, and I am scared. While I have a family, I am no longer considered a normal mom and wife. The losses are really too much for an individual to handle, and yes, I have lost my filter many times. Is that ok? It’s not.

What I am learning is that composure is critical. I am a human being with rights. Yes. I have a disease that is slowly progressive. I do not want chemical restraints. I would like to be respected and have the abiding love of my family as I face living with this disease. I do not want to be placed in a nursing home. I won’t have that right if I am aggressive or angry.

I can maintain my integrity much better by simply withdrawing when things become overwhelming. Composure. Humility. Time out.

Will I lose my mind completely and become a babbling incontinent Alzheimer’s patient who can’t use my hands to feed myself, or my legs to walk? I am indeed frightened about the future. I’ve been suffering. I don’t want this to be happening. However, while I can, I am making the conscious decision to stay more composed and humble. Because I can.

Suddenly Mad- Thich Nat Han saying- When anther person suffers...

 

My big lunch

Suddenly Mad- The meal I made for myself

My husband has been preparing all my meals and leaving them labeled for me when he goes to work – “breakfast”, “Big lunch”, and “dinner” (usually salad).  While I am so appreciative of his doing this for me, it does not promote any independence. So my dementia mentor urged me to go food shopping and show that I can still do things for myself, like prepare a meal. It was complicated for me to pull it together, but I did it. Finally, I needed  some supervision in the preparation from him while I was making this, after he got home from work. It was intended for the next day, and would be refrigerated and reheated, and the steps in preparing meals are hard for a person with cognitive impairment, but I was the director of the plate. Voila!

Here’s the story behind the photo: I ventured out for a walk and proceeded to get a little disoriented about exactly where I was in relation to the supermarket, because I walked too far, farther uptown in the Western part of town. I couldn’t remember exactly how to find the market from where I was but I did not panic. I kept walking back in the direction of my home, and knew I would find it if I retraced my steps. Whew, I found it! I was there to buy the items for this meal, which I did, and bought some pistachio nuts and cheese. At the checkout, I paid for the items easily with my credit card, and carried the bags home, and put them in the fridge. When my husband got home from work, I set out to prepare all the foods. This required an orchestration of timing. Boiling the water for the string beans, grilling the potato patties, cooking the frozen cauliflower, and baking the flounder in foil pouches. How easy this sort of thing must sound. But for me each step required all of my concentration and coordination. The point is that I did it.

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People with Alzheimer’s are often placed in assisted living and later nursing homes. The reason is obvious, they can’t take care of themselves. As the disease progresses and the spouse who is the caregiver becomes overwhelmed with caring for the spouse with dementia, the PWD gets placed in a home. If the adoring spouse who has become the caregiver predeceases his Alzheimer’s spouse, and the adult children do not want to take care of their mother or father with this disease, and do not want to pay for care of the home that the person lives in, and the cost of a home health aide (which is private pay, Medicare does not pay towards the cost of  home health care for a person with dementia), then being Medicaid eligible means the parent can be placed in a home. My biggest fear is being placed. I do not want to ever be placed in a facility.

I have learned that when a person has been diagnosed with Alzheimer’s, and goes to an elder care attorney with their spouse, everything is set up to take away financial autonomy from the person with the disease, to protect the assets of the community dwelling spouse, and their children. Everything is set up to become Medicaid eligible, so that when the spouse with Alzheimer’s goes into a nursing home, the assets of the spouse do not go for the exorbitant cost of care (at a minimum $7,000 a month and in some $15,000+ per month. The previous arrangement where a home has both names on a deed, must be changed to become Medicaid eligible. The person with dementia can’t have over $2000. in assets. A complete restructuring of finances and legal autonomy for the person with Alzheimer’s takes place, all in preparation for that time when the person is placed in a nursing home. This is how the family keeps their assets, and Medicaid picks up the tab. Sounds like a plan until one looks at what Medicaid really pays for. Medicaid really only pays for state funded nursing homes. These places are awful as you can imagine. Why on earth would I want to be placed in one of these? Elder care law makes it easy for the community dwelling spouse to make that decision when the care of the person becomes overwhelming.

Suddenly Mad- Nursing home neglect 2

I’m 63 years old and have Alzheimer’s. Some of you reading this know me. Can you picture me in a nursing home setting like the one pictured here?

No thank you.

I do not know if I will be able to keep preparing my own meals. I will try. I will aim towards as much independence as I can muster, for as long as I can. I never want to be placed in a home and if it means I have to push as hard as I can to hold onto my independence even if it is independence with assistance, I aim to. Making my “Big Lunch” was an effort in that direction. I sure hope I do not end up in a home. I do not want to be placed! Ever.

 

Earth Angels

Angel for Susan - full frame - Minna PackerThis post is dedicated to Susan Suchan who died at 4:30 am last Sunday, January 14 and Thomas DeBaggio who died eleven years after being diagnosed with early onset Alzheimer’s in 2011.

I completed this drawing a few hours before Susan died. Born in 1957, Susan had been diagnosed with early onset Alzheimer’s, around ten years ago, then was re-diagnosed with Fronto Temporal Dementia, and Progressive Primary Aphasia. She was a beautiful red head with a broad smile, and possessed an urgency to communicate her wit and intelligence, despite the aphasia that fragmented her speech. When I met her online, I told her about my depression. She explained that for her, depression was a cloak, a heavy cloak, she would remove consciously. She always aimed to find a way to live positively and with dignity. I am grateful for her gifted writings which contain a salient wisdom about what it means to live with neurodegenerative disease. She advocated for people with dementia all over the planet, showing with great determination that she could still enjoy life, and have meaningful loving relationships with friends and family. She shared her tools for living, smiled, laughed, and touched many with her insight, her humor and grit. May her memory be a blessing.

This is the link to her powerful blog  https://susansuchan.wordpress.com

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I am reading Losing My Mind, by Thomas DeBaggio, who was diagnosed with early Alzheimer’s at age 57 and died after a 12 year battle with the disease. He wanted to bravely display what Alzheimer’s does to a person as it ravages the brain. In the early stage right after his diagnosis he wrote two books, Losing My Mind and When It Gets Dark: An Enlightened Reflection on Life with Alzheimer’s. He wrote about his life with his wife, and recounts memories of his life intermixed with the shock and despair as he manages to think, function and survive through the early stages. Today I read a page where he describes going to the grocery store and being upset when he came home that a chair was moved. I can relate!  A renowned herbalist, he had authored many books on gardening, among them; The Encyclopedia of Herbs; Basil an Herb Lover’s Guide. He took his battle with Alzheimer’s to the world to show people what the experience of this vulture of a disease does to a person. In the later stage, he lost the ability to speak, feed  himself, or use his hands, or legs. His devoted wife took care of him for the first ten years, but then was overwhelmed and placed him in a nursing home the last two years of his life.

NPR (National Public Radio) recorded him and his family over the course of the his disease.

The last visit they made began with a question to his wife Joyce: “Would he want us to see him?”

“I know that’s what he wanted,” Joyce says. “Till the very end, he wants for people to know. We just discussed it endlessly. He wanted to throw it in people’s faces basically, this is Alzheimer’s.”

https://www.npr.org/templates/story/story.php?storyId=127857149

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The Naked Truth

 

 

Suddenly Mad Three Years photo

Suddenly Mad Self Portrait (Depression) 1:1:2018Two images. Past. Present.

One an old photograph 1957 or 1958.  I’m around 3 or 4 years old.

The other a self portrait. My last drawing.

Innocence.

Depression. Imprisonment.

“It is hopelessness even more than pain that crushes the soul.”
― William StyronDarkness Visible: A Memoir of Madness


Writing cohesively is getting harder to do. I go back and forth, deleting what I have just written. I started this post days ago.

Every day I have tried to continue, but get stuck and can’t go on.

When I return to write, I find I can’t complete the thought, and go off on tangents.

If I didn’t have Alzheimer’s I would call it writer’s block.

Enough, I say and close the computer, and tell myself I will come back and complete this the next day. The next day and the next day, the same thing happens.

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Here are the fragments from the last few days.

It’s likely too personal and without a filter.

Unresolved sagas about my mother, my father, my sister… It makes me think that those who have a contented dementia, must have been loved as a child, must have felt loved. I did not feel loved and was not nurtured by hands of gentleness. I defended against being honest with myself about these feelings for years. My parents were Holocaust survivors, I would tell myself. Forgive them. Their experiences made them crazy.  I am now confronting the emptiness that they left me with, and yet missing them because there is no way to resolve any of it.

Yes they were survivors of the Holocaust, and I do blame Hitler for the people they became, but I was their child, and did not deserve to be tormented in the wake of their nightmare.

My mother 

The photo of me as a 3 or 4 year old has my sister’s name on the back. It was obviously me, but my mother wrote my sister’s name on the back. I know it’s me because the photo below shows the three of us together in a park near our apartment in the Bronx. It was taken before everything fell apart. Years before her mind started to erode.

Suddenly Mad- photo with Lillian, me and Sonia

How can a photo contrast so sharply to what I remember, to what it felt like? The three of us look so happy.

By the time I was the age my sister was in this photo, around 12 years old, my late mother was severely depressed. My sister was seven years older than me. I realize now that my mother only had the capacity to love one child, and that was my sister. She was the beautiful one, and for my parents she represented life reborn after all the loss and insanity of losing their families in the Shoah. She was born in 1947 in Germany after the war. A premie, she had a rough start, but by the time she was two years old she was a ruddy cheeked strong toddler. My mother nurtured her. She was loved and adored by my parents, truly cherished. They made the journey to the US by ship when she was five years old, and settled in New York City, aided by HIAS an organization which resettled and aided the displaced Jews who were able to get here.

I was born in New York in 1954. My mother told me that when my father visited the hospital, he said, “Oh no, not another girl”.

My father adored my sister. She was the beautiful one. Instead of taking my mother to bar mitzvah’s and weddings, he brought my sister with him to show her off, and left my mother at home with me. Rather than bond with me, she withdrew into her own world.

Growing up, I knew to leave her alone. Depressed people can not give of themselves. Silence is what my mother craved. Silence and her bed. I was privy to her behavior the most, because my dad was at work, and my sister was already out of high school, taking college courses, working as a secretary and rarely home.

My mother would race around cleaning, prepare the evening meal, and then retire to her bed in broad daylight. She settled into a powerful silence. She actively ignored me. She didn’t respond to my attempts at conversation, my questions, my pathetic efforts to amuse her, to cheer her up. It was as if I didn’t exist, even when I was in the same room. I hated her neglect.

My father had a small manufacturing business. He ordered machine parts from Germany that knitted plastic and curled copper and brass pot cleaners. My mother worked in “the shop” that was my father’s side line. His “day” job as a machinist was supplemented by this manufacturing business. On weekdays my mother ran the machines.

It was a dirty noisy place. She probably didn’t think I should be there. But I didn’t know this then. So much of the time I didn’t know where she was.

At age five, I was often alone in the hall entry to our building on Walton Avenue eating Turkish Taffy. I became addicted to candy. My favorite thing to do was to go to the corner candy store.  I would buy taffy, gum, Jujubes, cherry slices, Bazooka gum (with Bazooka Joe  comics inside), hot tamales, watermelon slices, tootsie rolls. Candy cost a penny then, 2 cents, five cents and a dime. She doled out the change to me from her little change purse with little metal clasps. No wonder I had tons of cavities as a child. She would take me to Dr. Topperman, who filled the drilled cavities with mercury fillings.

Today there are conflicting reports that the mercury in amalgam fillings may contribute to developing Alzheimer’s. Mercury is toxic to the brain.

It’s sad to think that eating so much candy was my way of filling the emotional vacuum of feeling like an unwanted child.

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My parents moved to Florida when I was 17 and I went in the opposite direction to study art in Canada. I was ill prepared for life on my own, and college in another country, but my father who lived to the ripe old age of 90, had had a heart attack at 53, and he and my mother were intent on taking care of themselves. My sister, was by that time married and starting a family of her own. Armed with a student loan and $100 a month that my father sent me, I survived. This was 57 years ago.

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By 1990, my parents had made a move from Miami Beach to Hallandale, Florida. She was disoriented. This new area, a block from a strip mall was isolating. She spent all day in her housecoat, shuffling around inside the apartment and clinging to my father. A few years later my father hired an older divorced woman, Dorothy, to be her companion. After Dorothy, who chain smoked Virginia Slims, suddenly died, my mother hardly got out of bed. My father sat in the living room, watching the stock market readings on the television as she lay in bed all day. At night, she would get up after he went to sleep, and would pace around the living room, railing about him. He snored through it. By that time, I flew to Florida every two months, took them to doctors, arranged for Jewish family services to provide social workers to visit them. She continued to decline, and became incontinent. A hospital bed replaced the matching twin bed.

She died at age 87, after doses of Haldol prescribed by a psychiatrist, purportedly to give her a better appetite, caused a stroke. It happened when she was in the hospital rehab, just released from the hospital where she had been admitted with dehydration. I was standing by her bedside. She had just taken a walk in the corridor, and was smiling and talking to a nurse. She got back into the bed and the nurse came over and administered a large dose of Haldol. Within seconds her mind was gone. I sat with her as the ambulance rushed her into the adjacent hospital and I frantically pushed the stretcher to the ER, where she was readmitted. For the next two years she had to be fed by spoon with pureed food mixed with Reglan to increase her appetite. She had to be turned in bed to avoid bed sores, which happened anyway, as her immune system broke down. She never walked, talked or moved her body by herself again. But she did utter one word when I brought my then 8 year old daughter to visit her. She opened her eyes, and called out my daughter’s name.

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Depression has been shown to be toxic to the hippocampus, making it shrink, and today there are studies that link depression to the onset of Alzheimers.  Mine was an extremely depressed and highly anxious mother. I in turn suffered from depression, experiencing the first overt signs of it as a teenager. After I married I was happily free of it’s dark cloak for a long time. I was too busy to be depressed. I held jobs in the art world, then graduate school, gave birth to my son, ran a contemporary art gallery in New York, then gave birth of my daughter.

By the time I was forty three, I crashed. Deep unrelenting depression. The psychiatrist who I believed to be an expert in his field, a doctor and professor at Cornell Weill, prescribed large doses of SSRI’s and SNRI’s along with benzodiazepines. I believed that the psychiatric drugs would make me well and I  trusted him. But the drugs made me at turns much more anxious and ultimately more depressed. The side effects were atrocious. I could not stay on them, and went on and off of them for the next fifteen years. Now that I have Alzheimer’s I have learned that antidepressant drug usage is associated with AD/dementia and this is particularly evident if usage begins before age 65.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5347943/

I was also prescribed thyroid medications when I was deemed sub-clinically hypothyroid by a Functional Medicine M.D. who said it could help with depression. I was never truly hypothyroid, and have now read the research which links medication for hypothyroidism with hypo-metabolism of the brain.  Results of studies suggest that taking thyroid medication at baseline may be associated with a faster rate of DAT diagnosis.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2820146/

I had loads of therapy. Primal therapy in my twenties, where I screamed and cried, and released chunks of embedded emotion. I laid on the couches of numerous Freudian, transactional, cognitive and humanist therapists. I could have bought another piece of real estate for the money I spent on therapy and psychiatrists and doctors.

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If I had one tenth of the knowledge I have now about the risks for developing Alzheimer’s early in my life, I might not have gotten this horrible disease. I know I can analyze it until my face turns blue,  it’s not going to change a darned thing.

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Wish I had a better sense of humor

I read on http://www.alzconnected.com about my email friend who has been diagnosed with probable Alzheimer’s is moving on with her life, making changes. She says her husband who is not the father of her grown children, is miserable with her, and she with him. He is not cut out to be a caregiver, she says. She lives in the great lakes region and now plans to go live with her ex-husband who is in California, and be near her daughter, who is helping her with the move.

Even with probable Alzheimer’s, she is able to change her life and move in a direction that brings newness and possibility. She claims that CBD oil is what saves her and allows her to be functional. It’s legal in her state. My daughter had been getting it for me, and I was taking it for a while, but there is no more now. This woman swears by the stuff. She says that without her dose of Rick Simpson oil before bed, and Charlottes Web CBD oil in the daytime, she would be a “porch sitting drooler in 3 days”.

I think it’s actually her soul, spirit and spunk that saves her. She’s funny (porch sitting drooler!!!) and even in the throes of a co-morbid recent near death illness, she has a sense of humor.  She has been on the forum for years, I see that she’s been posting since 2013, which means she was diagnosed 5-6 years ago. So I know that she has progressed slowly. I’m a fast progresser. This began for me around two years and eight months ago, starkly and suddenly.

Taking a shower

Getting from my bed to the robe and slipper socks that I leave on the chair, putting these on and going down the spiral stairs, over to the list that tells me what to do, which sits on the kitchen island (that I have written the night before to guide me through the next day) is the first hurdle of the day.

I took a shower. It was a big deal. I pushed myself and managed the steps of washing my hair with shampoo, rinsing, putting in conditioner, rinsing, washing my body parts with a washcloth and soap, dealing with the many strands of my curly hair falling out in the process, and curling around my fingers. Then the thought struck me, how the hell did I deal with all this before I got sick? How did I cope with this hair and what were likely the simple steps of taking a shower and getting dressed? How long did it take then? Was I freezing as I am now when I am wet and slow? Getting out of the shower, and putting a big towel around my head turban like, drying my body with the other large towel is a transition. Transitions are hard now. Task switching is hard.

Then I sat on the toilet seat and wept.

Finally, I pulled myself together, brushed my teeth, and dried my hair. I took each article of clothing off the hanger one by one, making sure the labels were in the back, and got dressed. Slow process, but each time I am able to do it, is a small triumph. I do it every day, but nevertheless it is a small triumph that it gets done. It means I can participate in my life. I can show up and not look like a stringy haired demented woman in a robe. Being able to get dressed is something that people do every day. Alzheimer’s which I picture eating up my brain like a Packman on steroids, is making this important activity of daily living, harder to do.

Suddenly Mad - hoto of me blurry and close up 1958

Out of focus

I am attempting here to assemble memory, analyze my experience, and connect the dots in my fragmenting sense of self. The more I reach for legibility, as for the flicker of a memory, the more it slips from my grasp.

 

 

 

 

 

You Can’t Buy a Friend

Suddenly Mad drawing The Hard Truth and You Can't Buy a FriendIt’s been a few weeks since I posted.

The drawing above illustrates the “hard truth” of what it feels like to lose the ability to fully take care of myself independently, the regression that comes with Alz, the ongoing need for companionship and assistance, the realization that no one can really understand what I’m going through, and that everything is economics.

I know I have progressed since the summer. My behaviors and speech are very peculiar. I hear myself speak and realize that I am dropping pronouns and sounding more aphasic. My sentences are clipped and I hear an alien voice come out when I speak. It’s like I have to push the words out to express myself. I often can’t find the words to describe things. I sound very nervous my husband tells me.  I often have terrible agitation, I pace, repeat, talk to myself and babble. It’s embarrassing, yet I can’t control this a lot of the time. My husband looks at me aghast. Yes, I am losing my mind, have lost my grip. Only when I sit here at the computer and am able to reflect and write about it, am I composed enough to see that these are the progressive symptoms of a disease of my brain. It’s not who I was. I never paced and babbled when I was well, for heavens sakes!

Anyway, I made this drawing after the young woman who was my companion quit, and the woman who was involved with my case, the cognitive remediation counselor, recommended I go on Caring Kind’s website and look for another home health aide/companion who has training with Alzheimer’s people and is trained in dementia care.

Here are some examples of what I found:

 I offer companion care services. I have a certificate with CPR, First Aid, and I recently took the 50 hours of Dementia  with CaringKind, I am very grateful with them. I have years of expirience also many recomendations.
I love to work with elders and I have many good memories with them. 

Fell free to contact me, I will be waiting.

Pardon me for finding fault, but this person can’t spell. Ever heard of spell check? I guess one can earn a certificate in CPR and First Aid, and not be able to spell or use spell check. It just makes me wonder who this person is and how they could be a suitable companion for the likes of me at this stage.

Here’s another-

 I have more than 1 years of job experience as Home Health aide. I would describe myself as Spiritually stable. I am responsible , i have received training for people with alzheimer and dementia…

Spiritually stable. That’s so interesting, but what does that mean? I’m actually very interested to meet someone who characterizes themselves as Spiritually stable. Clearly I am not that, and maybe she is a good navigator who can help me spiritually.

another…

My information is coming soon!

Well that’s not enough information, sorry, I will have to take a pass.

I DID FIND A WOMAN WHO SEEMED IDEAL-

Why I choose to work with people with Alzheimer’s. My mother in law was a brilliant and fun loving women who had Alzheimer’s. Helping my father-in-law to care for her led me to want to work with other’s who have Alzheimer’s and other forms of dementia. I started working full time as a companion in 2013. I don’t see a disease. I see a person. Perhaps their world is different than yours and mine. My job is to enrich their world by living with them in their world. One connection I found to be a powerful tool has been through photography. Through my years of being a companion I have found that it is the power of photography that remains a strong connection for a person with dementia and memory. My husband and I have a professional photography business. I use the power of personal photographs to create collages…

I thought- PERFECT- she will get me, I’m a creative person, an artist, or I was, and she will understand me and how devastating it is that I am suddenly unable to function as I did before. She’ll be able to accompany me to museums, and be a great companion. I wrote her an email and asked her to be in contact with my husband who now handles all the finances.

The next day he told me that she had emailed him and that she told him clearly she’s not a home health aide, but a companion, and that she charges $50 an hour. She said that  because I am not in Manhattan and she would have to travel to get here, she would require a 16 hour minimum for 2 days. I can still use the calculator on my iPhone and that shows it would cost $800 for her to spend 2 days with me per week.

I now collect Social Security Disability Insurance through the Compassionate Allowance Initiative for people who are under retirement age. On a monthly basis it’s not much more than this woman would make in two days. Yes, pitiful, but I was working as the chair of an art and art history department in a private school and these elite private schools are notorious for the lower salaries they pay for the privilege of working in a school with smaller classes and gifted students, so my SSDI is pretty low. This means my SSDI per month payment would pay for about 2 and 1/2 days of this woman’s fee.

So that companion is not going to happen for me, unfortunately, as perfect as she may be. It’s not affordable. She is deemed to be a companion for the ultra wealthy old folks who can afford her services.

Me – I’m going to have to be alone, or let my husband hire someone who may not be a suitable companion, culturally or cognitively. I don’t have any friends or relatives who are free to escort me to doctors appointments, museum programs for people with dementia, or even to go for walks. I am generally alone, except for one dear friend who visits every week, another woman from my synagogue who invites me to go with her to cultural programs there, or when my husband, who is exhausted and generally does not like to be in the same room with me, has the patience to take me out for a walk, or visit one of our children, which means he drives.

I’m cognitively impaired, but I’m not stupid. Without a hired companion, I won’t be able to go to museum programs for people with dementia, because there’s no one to take me, as I haven’t been able to travel by myself for the better part of two years.

Unless, I lower my standards. Maybe I can get someone who charges $20 and hour. Who will that be? Hopefully it will be someone who owns an iPhone and speaks English and can text.  I can text, and hopefully it can be someone who knows how to text. (I’m trying to be funny here, and point out the insane hilarity of where I am in this disease, able to text on an iPhone, able to type this post on my computer, but too cognitively challenged in terms of navigation, and confidence to be able to travel alone and get anywhere on time).

Why can’t I travel alone? Because I get agitated, disoriented, unable to gauge how long it takes to get to places on public transportation, and potentially I may get lost. I have a great deal of trouble being alone in crowds, noise is not filtered anymore and cars, voices and all sounds come at me simultaneously (I am imagining now my dementia mentor telling me to use noise reducing headphones. She is the expert at accommodations for people with dementia, but that would be dangerous to do in Manhattan when one has to cross very noisy and busy vehicular intersections, as well as deal with crowds safely- you have to be able to see and hear, and know where you’re going simultaneously to not get hit by cars). I may need to use a bathroom. Oy! People with Alzheimer’s don’t always have control over their you know what. I would hate to wet my pants in public because I couldn’t find a bathroom. Maybe I should get my husband to buy me Depends and bite the bullet. Maybe I should buy myself a memory bracelet with a navigational device so if I get lost, my husband can alert the authorities to find me and conduct a safe return. He will be in another state at work. I guess the authorities could hold me until he picks me up.

I am trying to funny, but it’s not funny.  I am not getting lost in my own home, yet, as you saw Julianne Moore as the character Alice got lost when she tried to find the bathroom in her beach house, if you saw the movie. But it happens to Alzheimer’s people. It’s part of forgetting, orientation and navigation.

I’m an educated woman in the early to moderate stages of a disease who is not just losing her mind, but is traumatized by all of the circumstances that began 2 and 1/2 years ago and have led to this point. How can I have changed so radically from being the confidant, friendly, globe trotting traveler I was, to someone who is fearful, anxious, socially awkward, and disoriented? Maybe I should use UBER or hire a dedicated driver to take me places. Driving Miss Daisy my husband calls it. Let’s see what would that cost (probably a hundred bucks or so round trip), and what happens when the Uber driver calls my phone as I wait for him at the museum entrance, and tells me to meet him at a distant corner because he can’t pull up in front of wherever I am located, where hopefully I was able to remember and tell him the correct address and street (?). I would need to find and identify his model of car and be able to identify myself. “I’m the woman with the gray coat and hood waving madly at the corner, do you see me?” If only it were that easy. It should be. It should be easy.

Perhaps you can’t comprehend the complexity of what I am describing and why it isn’t easy. Well picture this. I hadn’t been out of my house in 3 days, but did walk about 6 blocks today. That was something I could do.

It should be easy to do these things. Travel to Manhattan to a museum and back. It was so easy when I had friends, knew how to navigate, had tons of energy, and could be alone easily, or go anywhere myself.

It was all so easy.

 

 

 

Beginnings and endings, but life goes on…

Suddenly Mad - Louise Bourgeois : Arch of Hysteria 1993Arch of Hysteria                                               1993                                      Louise Bourgeois

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Memory is so much a part of who we are. Without it we are always in the now, without an anchor for our existence.

Before too much time elapses, and I forget, I want to describe the things I have experienced over the course of the last days. A lot has happened, and today marked an ending to a source of support.

But first this will be about art….

I visited the Museum of Modern Art and The Rubin Museum of Art, attending programs for people with memory loss and dementia.

Last Friday, I attended the Mindfulness Connections program at The Rubin Museum, which is offered once a month. I traveled there in bitterly cold weather, with the young woman who was my part time companion (who told me today she doesn’t want to do this anymore). We met with others in the cafe on the ground floor of the museum. I spotted a woman sitting at the long table where we gather, who I had not seen before. She has early onset Alzheimer’s. She is 65, quite lovely, well groomed, and young looking for her age. She seemed cheerful, and I thought I had finally found someone like me that has Alzheimer’s early stage, that I could communicate with. Maybe this can become a friend, I thought. An email buddy, or someone I can speak with on the phone. How wrong I was. She was accompanied by her aide, who had a lilt to her Jamaican accent. I approached this woman and introduced myself. I read the name on her name tag. “Hello Marianne (not her real name)”, I said, and shook her hand. I asked her questions about herself, such as where she lived and does she use email, and does she use a computer. She said yes, she does. Her aide quickly interjected, shaking her head, that she was in middle stage Alzheimer’s, and said that she plays with things and looks at things, but that NO, she is not able to use a computer and has no access to email. I wondered if she could read. I asked her where she lives, and she mumbled an M sound, Mmmm…. I  asked “Manhattan?”, and she nodded and smiled. During the discussion about the artworks, she was not able to articulate very much at all about what she was looking at. We looked at a painting of a wrathful deity and I remembered seeing this same work during previous visits. I addressed the docent, saying something about how the prescribed methods of Buddhist art is so unlike contemporary art, where the artist determines the content of the work, displays a personal iconography and ideas, and how this, like all religious art, dictates a prescribed system of belief. I said I think that this is the same as in Christian art, and all art that is based on religious doctrine. I still know enough about art to know that sacred art involves the ritual and cultic practices and practical and operative aspects of the path of the spiritual realization within the artist’s religious tradition. There was a group of visiting advisors along for the tour. Junior dementia experts, I’ll call them. I sensed their surprise that someone diagnosed with this disease was able to comment perceptively about the artwork. I exceeded their expectations. How lonely this made me feel. Here I am terribly aware of how changed I am, articulate enough to find the words to describe my experience, but dependent on a companion to cart me around. Afraid to travel alone, aware that I have lapses and can end up stranded. I’m unable to gauge when to leave my home and be there on time myself, not able to simply be independent in the outside world. Regressed, angry, petulant, but  still able to think critically, and see the connections between disciplines. Suddenly Mad - Warthful DeityWrathful Deity – Yama

The questions posed by the docents included some one would ask a child in an art class, “what colors do you see” “How is the color of the figure in the center different from the others in the painting”? Marianne responded to the red in the image, agreeing that she was indeed seeing the color red. My frustration was mounting, as I saw once again, that I am at a stage where I’m aware of what’s happening to me, and grouped here with others who are further progressed. Who will I be in a year, two years? Will I be able to speak about my ideas, voice my thoughts, respond intelligently to questions. Will I be like this woman, not know where I live, unable to write this diary about my experiences?

I asked Marianne’s aide, what she is like during the day, and she told me that she walks a great deal, is surrounded by her family, sees her grown children, and is quite happy. Wow! She is happy! How can this be? She must have had a nurturing mother, I think. She must have been a happy person before this happened to her.

A goofy old fellow in his 80’s, who I met at Rubin before, kept repeating that he had been to the Temple of the Tooth during WWll. He had repeated this same thing when we viewed the Tibetan artworks before.  Over and over he repeated this. He’s just an old man who repeats himself, right? But this time I became annoyed, my tolerance strained. Irritated. The slogan, “When you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s”, comes to mind. I am so unlike him at this point. I’m about twenty years younger, and there is no point of reference for us to be together in this place, except for the art. Ok, I must practice acceptance. OM………………..

The previous day, Thursday, my husband took me to The Museum of Modern Art in NYC for a program for people with memory loss offered through the hospital where my neurologist practices. He took the day off from work to take me. We entered the museum at the education resources entrance, where I had taken students to visit the museum for tours many times, when I was still working. I used to go there all the time with friends and alone. The last time I’d been there was 3 years ago, when I was teaching and an active working adult with a very full life. The people attending the program were not Alzheimer’s patients, except for one. One optimistic man with a sunny disposition, accompanied by his wife, was a patient who has some memory loss, but clearly is normal, high functioning. This couple were both in their 70’s but looked much younger. Then there was another fellow, who looked like he was in his late sixties. He was in his own world, non communicative, in a daze, accompanied by what appeared to be his son. It looked like Alzheimer’s or FTD, middle to later stage. I was distressed at witnessing the disparity between those who attended,  those who appeared normal and this fellow who was so far away cognitively and emotionally blank.  Me in the – in between, spatially disoriented, anxious, needing assistance, communicative and aware. I would be disoriented making my way around this museum that I had visited so many times by myself and with others.

I remembered so many of the artworks, remembered the names of the artists, and recognized their signature styles, and eagerly participated, voicing my wealth of knowledge about contemporary art, when the docent who led us through the galleries referred to specific works.

MEMORIES, ART AND ME:

There was a major installation by the late sculptor and artist, Louise Bourgeois, who wrote my recommendation for graduate school, back in the day. I met her in 1978, when she invited me to her Chelsea townhouse. Her studio was in the basement, with sculpture in various states of completion. She was by that time a widow, exhibiting her sculpture at Xavier Fourcade gallery on the upper East side, which I went to when I visited the galleries every week or so. She was around 70 at the time, and I admired her singularly personal work immensely. She persevered in making art and building her art career at an older age, and was just beginning to be recognized publicly. This was at a time when women were having a rough time getting their art work shown in New York galleries. Bourgeois was tiny woman, but I could see that she had a strong body. Her eyes were light blue and piercing. She offered me some jellied pigs feet to eat, which I declined. Two young women were romping around her home happily, and she said, she never would have been able to have young people in her home like this when her husband was alive. Her late husband was a historian, and she described him as very rigid. They had had 3 grown sons. I understood that for her art, making art, was about freedom, self expression, choice. She chose a  lifestyle that enabled her to be extremely prolific. She was disciplined and worked every day. She hated to travel. She created thousands of artworks during her career and is now considered one of the most influential artists of the twentieth century. Working with a wide range of materials and forms, she created a body of work that extended over seven decades.

I sat in her parlor, as she nibbled on pigs feet, as she looked at my drawings and projected slides of my sculptures. I was 24 at that time. She examined my drawings, stopping to look for a long time at my graphite drawing, that I called “Cups”. It is an image of towering teacups, that teeter precariously, with an insert of a woman covering her face with her hands.  She blurted out, “I think you like to torture yourself”. I can’t forget that. I thought it was a great drawing. She saw masochism. She was wrong. The drawing was about fear. Lack of protection. Vulnerability.

Bourgeois was able to discern something about masochism that she saw in this drawing, and I understand that when we are young, we try to connect with our parents.  Some of us are  lucky to have emotionally available parents who are capable of providing  us with a secure attachment.  Some of us are not so lucky.  This is a  huge problem because we associate love with what the relationship with our parents or caregivers feels like.  We associate love with what our  childhood home felt like. In other words, our subconscious definition of love becomes what home felt like for us as a child. The drawing embodied this lack of a secure attachment. I did not feel safe.

Here are some of Bourgeois’ exhaustively prolific works from the MOMA exhibition. She said the use of the spiral is an attempt at controlling chaos. She would often combine forms with parts of the figure.

Suddenly Mad - MOMA Louise Bourgeois - SpiralsSuddenly Mad - Femme Maison Louise BourgeoisFemme Maison (1946-47) is a painting and drawing in linen, that speaks to the work she made about architecture embodied. For Bourgeois, architectural structures and room like chambers represented safety, and refuge, and conversely, entrapment. Suddenly Mad : Louise Bourgeois - cell VlCell VI, 1991, painted wood and metal

She began a series of room-like sculptures called Cells in 1991, eventually creating sixty examples in varying sizes and complexity. Some are filled with a haunting mix of her personal belongings. This is among the simplest. She often chose the color blue for it’s serene and calming effect.

Suddenly Mad - Louise Bourgeois alone and togetherI Redo (from the installation I Do, I Undo, I Redo) 1999-2000, steel, glass, wood and tapestry

Throughout her career, Bourgeois turned to the figure as a means for self portraiture and for examining her relationship with others. They often contain elements of the real and surreal. She treated the human figure as a vehicle for comprehending her fears, desires and vulnerabilities.

She was raised in France in a family of tapestry restorers, and introduced fabric into her art when she was in her eighties. She decided she no longer needed all the clothes or household fabrics she had saved for years. She would hang dresses, slips and coats in her cell sculptures, and cut up cloth for stuffed figures and patterned collages. Stains, scorches, testify to the the old garments history.

Suddenly Mad - Louise Bourgeois fabric head

Below is a painting by Brice Marden, titled Vine, from 1992/1993. To the left is an opening in the wall, and through it a sculpture of one of Louise Bourgeois’ “Spider” sculptures hangs in midair. They are grouped to play off of each other. Marden’s abstraction in Vine, playfully embodying a web design, against the sinister Bourgeois Spider.

Marden is another artist I knew back in the day. His daughter attended The Little Red Schoolhouse, the same school my then very young son attended. We would greet each other in the morning as we dropped off our kids at school. I would go to the gallery I owned then in SoHo, and he would be off to his studio. This was thirty years ago. Normal life, a busy life, an active life. Then. He was already famous for his spare and minimalist paintings. At almost eighty he is still a working artist, and owns a huge chunk of SoHo property, making him one of the wealthiest American artists around. His works sell for around 10 million for a painting. Maybe I should write him a note and tell him my story. I wonder what he would think and if he would read my blog.

Suddenly Mad Louise Borgois Through Opening in the walk and BRICE Madden Inbox x

I have to include one painting by Pablo Picasso that I loved as a child, and saw this again at MOMA. Three Musicians is an oil and collage painting from 1921. The painting features three musicians, dressed as a monk, a pierrot, and a harlequin. It’s a perfect example of Picasso’s Cubist style. In Cubism, the subject of the artwork is transformed into a sequence of planes, lines, and arcs. Cubism has been described as an intellectual style because the artists analyzed the shapes of their subjects and reinvented them on the canvas. The viewer must reconstruct the subject and space of the work by comparing the different shapes and forms to determine what each one represents.

As a child I had no understanding of Cubism, yet I found this painting unforgettable, and looking at it made me happy. As an adult, I learned that Picasso was a misogynist and that many of his children and grandchildren suffered great psychological trauma. Among creators of genius, Picasso was not alone in carving a path of emotional destruction through the lives of those closest to him, but his record is nevertheless chilling. In the years following his death in 1973 his second wife, a longtime mistress and a grandson committed suicide; his oldest son was killed by drink; and almost everyone else related to him was scarred by the experience. His granddaughter, Marina Picasso, wrote in her book, Picasso: My Grandfather,  “He needed blood to sign each of his paintings: my father’s blood, my brother’s, my mother’s, my grandmother’s and mine. He needed the blood of those who loved him — people who thought they loved a human being, whereas they really loved Picasso.”

Suddenly Mad MOMA Picasso Three Musicians

(Below) The End from 1991, by Edward Ruscha, evokes a split second of film projection on the big screen. The effect of instantaneity is enhanced by the imperfections and vertical lines in the gray field, which are intended to resemble the tiny scratches, scrapes, and particles of dust that can mar film and projector lenses. The fuzzy contours of the airbrushed letters, split between the top and bottom of the canvas, suggest that something is amiss in the projection of this particular movie frame. The illusion of continuity is not being created. This “illustration of an out-of-sync mode,” as the artist has described it, refers to the past  and the future — once the technology of celluloid film is obsolete, if not totally forgotten, will the painting be recognizable? The title and subject of the work remind us that the continuum of time is composed of the momentary; a flash of ending differentiates past from present and present from future. Suddenly Mad - MOMA - Edward Ruscha - The End 1991

Endings. Continuity. Endings that lead to new beginnings. Endings that are a goodbye.

Another ending. Today. There have been many during the course of this disease. Too many. A sea of strangers paid to care for me. It is an abrupt ending.  I am so worn down from abandonment. The young woman who has been my paid companion since early October, has resigned. Why? She didn’t want to do this anymore, she said. She wasn’t designed to be a home health aide for a woman with early Alzheimer’s. She’s a young woman who has had many issues, health issues, both psychological and physical, and is fragile. If I had known better, I would not have allowed myself to get so close to her. I became accustomed to her helping me. I became dependent on her. That’s a danger for people with this disease. We can give up too early what we can still do for ourselves. But her presence brightened my day, and I would look forward to her presence. My husband hired her after she visited me as a mitzvah (good deed), prompted by my rabbi sending her a text that there was a woman in the community who would benefit from her visiting. I really liked her, trusted her, appreciated her help enormously. Now she won’t do this anymore. She told me she wants to live her life, pursue her design career. I can understand this. My own daughter is doing exactly that, working as a TV producer and living with her boyfriend. She wants to live her life. I thought having this companion would free my daughter to do just that, and afford me the opportunity to still have a companion who would make sure I ate (I forget, don’t have an appetite), make sure I did not get lost when traveling, would help me exercise, and help me remain functional, conversant, have structure in my life. I thought this would help keep me in the early stages, as long as possible.

Who wants to be saddled with the job of being a companion to someone who is losing their mind? Last year I interviewed a home health aide who arrived 2 and 1/2 hours late, had a bouffant of dyed blue hair and weighed around 300 lbs. My husband told her that I become anxious and when stressed, argumentative and strident. She told him, I know how to handle Alzheimer’s people who get like that. I pictured this huge woman holding me down. Pinning me to wall.  Clearly it was not a good fit.

But the symptoms are not getting better. I am scared of the person I was this past summer, sitting all day in the house alone. It was only when I came “out” to my religious community, the rabbi, a friend who had worked on my films, an acquaintance who had experience with people with Alzheimer’s, that I have this disease, that visitors started taking an interest in helping me out and keeping me active.

I’ve been through many aides since the insidious onset of this disease. I know that the personality changes that are currently happening are a result of my dementia. Persons with dementia have a change in personality. Aggression, anxiety, depression, agitation, and paranoia are all aspects of dementia. Psychiatrists prescribe anti-psychotic medication to help reduce aggression or an anti –depressant for anxiety or depression. Anti-psychotics are black box warned against for people with dementia, yet psychiatrists still prescribe them. Many anti-depressants are anti-cholinergic and kill brain cells. It was a cocktail of antidepressant medications and benzodiazapines that hurt my brain, disrupted synapses. I wish I had never taken psychiatric drugs, ever, but I did and began in my forties because I believed they would help with depression. This young woman, my former companion, sustained neurological damage from the same drug, Klonopin, that hurt my brain, and contributed to pushing Alzheimer’s disease in my brain http://www.psychiatryadvisor.com/alzheimers-disease-and-dementia/benzodiazepines-alzheimers-dementia-death/article/443262/. We shared this, and she sympathized with my condition. She has vertigo, and says she couldn’t walk or talk for four years as a result of the damage the drug caused.

I need assistance with many activities of daily living. But you can’t buy a friend. Here was an employee that my husband hired to be my companion. I made a mistake thinking this perfect stranger would be my friend. I am still strong and have to stand tall for myself, and battle this disease. I’m doing that by writing about it. My husband, though embittered and exhausted from being a worker and a caregiver, is here for me. He may not be a great conversationalist, but he is my dear care partner. Anyone he hires to help clean our home, or serve as a travel companion for me, is not invested. He is.

I have a beautiful granddaughter who turned two at the end of October. She is the daughter of my son and his lovely wife. She will not know me as the normal grandma I would have wanted to be for her, but I try my best to engage happily with her when I see her every few weeks. She is the beginning, the joy taking flight, and I am waning at an age when this should not be happening. Her great grandma, my husbands mother, lived to be 94. She had Alzheimer’s in the final years of her life, but when she was my age she was the greatest grandma imaginable for my son, spending time with him with gusto and exuberance. My son traveled with her to Disneyland after her husband (my husband’s father) died of a sudden heart attack at the age of 70. She rode the rollercoaster at Disneyland with my son, her little grandson, spent so much time with him and adored him. I married young, and in a sense she mothered me too. I feel her presence now fortifying me to be stronger. To accept the love that’s offered. To not depend on strangers to take over what I can still do for myself. I adore my little granddaughter.  I doubt I will be able to be like the grandma, my son’s mother was for my son. Logistically it’s unlikely, which makes me sad. She has another grandma, the mother of my daughter in law, who she will likely do these things with. Before I was diagnosed, I imagined I would be the kind of grandma who would take my grandchildren to museums, the theater, introduce them to great New York restaurants, the theater, be the one to be sure to introduce them to high culture. But I can still play with her, sing to her, and watch her as she grows smarter and stronger every day, bless her.

I was born into the Baby Boom generation. My granddaughter was born at the tale end of Generation Z. She will be a part of a generation of self-starters, self-learners, and self-motivators who will stop at nothing to make their mark on the world. Being born at the tale end of this generation, she will likely be a maverick. I see it in her now at only 2 years old. She’s a brilliant ball of energy. I pray I will get to know her, and be cognizant of her as long as I am alive, never forgetting to be able to still give her the best of myself.

Cuckoo with pluck

Suddenly Mad - Self Portraits with CuckooDouble self portrait with Cuckoo                     Dec. 2017                                     Minna Packer

The weekend:  I was snowed in at home in my East coast abode. I spent my time drawing the double self portrait with a cuckoo bird, the phone silent, my husband weary and resting, and me reading the The New York Times news feed, eating, playing Lumosity and Brain HQ games and trying my hand at the Times crossword puzzle.

It doesn’t sound out of the ordinary for anyone’s weekend activities. That’s why it’s called the weekend. For me though the comfort of familiarity and routines in my life are changed. Instead of a job teaching students about art, I am home alone so much of the time. Having this disease has cut me off from the world I knew. A normal routine, punctuated by time with friends, going to films, traveling, community involvement– a life. A normal life which is something it seems I will never experience again. I didn’t choose retirement. I thought I would never retire. A life at home with a list I write the night before, telling me to eat, get dressed, take my medication, take a walk, is not what normal person imagines will be their construct in late middle age. It’s absolutely bizarre, yet without my list, I don’t remember what I should do. I get confused. I have to enforce a routine and I do it with a list. This is my new normal.

The people in my life who were present every day are gone, colleagues, friends, extended family are replaced now by social workers, psychologists, a cognitive remediation counselor, visits to the neurologist, doctors, and a hired companion who helps me to complete household tasks. The occasional visits from and to see my adult children are “events”. My beleaguered husband who works full time and takes care of my nutrition, doctors appointments, and manages our household is my mainstay who keeps me going. He cues me to get out of bed and helps me when things like walking down the stairs are hard to do. I’m alone with my husband four days a week. He works remotely on his computer two of these days. He is a loner and doesn’t bring social contact into our lives. I was a sociable person, and as much as Zoom chats with my dementia mentor are awesome and I adore her, it’s once a week for an hour. Dementia Alliance International is great source of support, but again Zoom chats once a week, often at a time when I’ve had appointments, are not enough to cut through the isolation I am experiencing. Sometimes these Zoom chats make me feel like I’m a dementia patient on the Starship Enterprise using communicator panels to connect with those who are light years away.  I think anyone would become stir crazy if forced into this sort of isolation.

I read the news and see that I am one of the fortunate ones with a roof over over my head and food in the fridge. Global warming is affecting everyone and everything, but for the moment, I am safe. The fires are continuing to burn after those in Sonoma and Napa counties have destroyed 14,000 homes with losses topping $3 billion. Now fires continue to rage from Ventura to San Diego. More than 100,000 people ordered to flee their homes! One human death reported yesterday, two the day before, dozens of horses killed. This at the heels of 42 dead in Sonoma County. Valiant firefighters battle to contain the flames that has destroyed over 245,000 acres.

Reading the news makes human tragedy just that, readable. Isolated in a world where we are exposed to news events every minute of every day, it becomes more challenging to give a single story the attention it deserves. The sheer number of environmental disasters, competing with social events happening at one time, alters our ability to feel fully compassionate towards a single event. We’re so drowned in data that we’ve become numb.

On the same electronic page with the report about the fires, are advertisements for a child’s luxurious colored crochet blanket in the shape of a mermaid. This makes me better able to understand how the artist Andy Warhol visually depicted how everything in our culture is reduced to banality. The same page that delivers the news of tragedy and devastation, delivers a luxury item for kids. Life and death trivialized in a barrage of data.

Another news feed: Trump’s incendiary move to announce that he recognizes Jerusalem as the capital of Israel, and will move the U.S. embassy there, is expected to inflame tensions in the region and unsettle the prospects for peace. Jerusalem is braced for it’s it’s most serious flare-ups of violence in years.

Jerusalem: I was there in March 2014, asked to speak at Jerusalem University, about the film I was making, “The Lilliput”,  about a dwarf who hid in garbage cans during the Holocaust and survived https://vimeo.com/91234297.  I was with Ada Holtzman, a prominent genealogist, a few years older than me, who compiled the records of those who perished from our late father’s shtetl (town) in Poland. This is the plenary website she created to honor the memories of those who lived to tell their stories and about those who perished http://www.zchor.org/indexgom.htm.  We walked through the old city, and had a such a lovely time, enjoying a mid afternoon lunch. We hadn’t seen each other in six years, but had communicated regularly by email. Two years later this woman who was so full of energy, and passionate about her work, is dead from lung cancer that spread to her brain. Here I am alive with a head full of Alzheimers pathology and a changed brain that makes daily life a challenge. I miss her. I miss myself, the self I was that afternoon.

A text pops up on my phone. It’s a daily text from a Christian woman who urges me daily to pray and have faith. She quotes from Psalm 17:6 telling me that G-d can quickly change things in my life and my situation. I consider the brightness of her urging. There are blessings in my life. There are many things I am thankful for. I am not being sarcastic when I say that my iPhone which brings me her message to hang in and have faith, and my Mac computer to write my blog on, and connect with my dementia buddies on Zoom chat, is a blessing. Thank you G-d for creating Steve Jobs, who lived to make this happen. Six degrees of separation.

I turn back to the newsfeed.

The sex scandals continue to spark with allegations made against the most powerful men in the land, in various industries. The list keeps growing. Republican Alabama Senate nominee, Roy S. Moore, is alleged to have molested teenage girls. From the most prominent liberal minded Democrats to ultra conservative Republicans, former American presidents, members of the U.S. Senate and U.S. House of Representatives, celebrity actors, celebrity chefs, billionaire movie executives, directors and producers, US judges, political journalists, chief news editors, musical directors, lauded talk show hosts, famed fashion photographers, world famous comedians, playwrights, CEO’s, pop stars, NFL quarterbacks, soccer stars, venture capitalists, hotelier’s, rappers, and even a famed magician. The most influential and wealthiest men are toppled because they believed themselves to be more powerful than others, perversely pleasuring themselves by degrading women under the radar of the public eye. Will this be a clarion call for women to replace men in positions of power and influence in every facet of public life?

 

___________________________________________________________________________________________

I know that we plan and imagine our lives going one way, and things go another way.

Loss as muse.

Loss as character.

Loss as life.

And yet…I remember that without dreams and hope life is dismal. I give myself permission to mourn my losses, but I also encourage myself to remain an active participant, a part of the world. I am hoping to meet my dementia buddies in Chicago next year for a dementia convention. I want to be able to be able to start a support group for those with early onset in my own community.  Told by the co-director of the local Alzheimer’s organization that she hoped to start such a group at the local hospital, I see now that this will not happen unless someone with the disease makes the effort to reach out directly and find ways to facilitate these connections. She told me the only two people she knew who were close to my age and were diagnosed, were so afraid of the prevailing stigma, that they would not reveal themselves. Her organization has 3 support groups for caregivers, and nothing for those who have been diagnosed. That needs to change. I want to be able to speak to people about living with the disease while I can. These are dreams I’m holding onto.

In the meantime, social activity for me now involves organized trips to museums with programs for people with dementia. Programs tailored to those with cognitive disabilities is where I am able to bring forth my best self now. I engage with the caregivers if the person with dementia can’t speak. I stand at a juncture between them, and it’s my point of reference. Last Thursday I attended a program hosted by The Museum of Modern Art in New York at the hospital where my neurologist practices. The presenter was a young woman who showed us images by Andy Warhol, Phillip Guston- one of my favorite painters, images of hanging works in wire that are called drawings in space by a woman artist whose name I don’t remember, a painting by Cy Twombley from an installation now at MOMA, called the “The Four Seasons”, and a body print from the sixties by David Hammons, an African American artist now in mid late career. She wasn’t surprised that I knew so much about the artists and their work when I told her that I had taught art history and grew up in the art world, had owned a gallery in SoHo, and that this was the world I used to swim in.

People often say, you can’t possibly have Alzheimer’s, because you speak so well. “You’re so articulate”. “You write so eloquently”. The ideas people have about those with dementia is misconstrued. Some of us have more depression, some more anxiety, some lose abilities (activities of daily living) faster than others, some have hallucinations, some progress and plateau for a while, some progress quickly, some become incontinent and have to wear Depends (as is the case for a prominent writer who just published the second edition of his book about living with early Alzheimer’s!), some get locked up in psychiatric hospitals and are drugged and stumble around muttering to themselves. The bizarre combinations of symptoms in some people with the disease is startling and alarming. Here I can write a blog, but have a lot of trouble following a recipe, getting dressed and traveling alone, because I become disoriented and have a lot of fear about getting lost. The early stages are deceiving to those who do not understand that we process things differently, can’t think as fast as we used to, thus our reactions are slower, we need to plan and prepare well for everything we do.

Suddenly Mad - Phillip Guston In the Studio, 1975

Art is my respite. Here are 2 images from the discussion about contemporary art I attended on Thursday. This is a painting by the late Phillip Guston, titled “In the Studio”, 1975.

In a career of constant struggle and evolution, he emerged first in the 1930s as a social realist painter of murals in the 1930s. Much later he also evolved a unique and highly influential style of cartoon realism.

One of the things I love about Guston,’ says Philip Dodd, head of London’s Institute of Contemporary Art, ‘is that he was not afraid of vulgarity. Once he leaves abstraction behind, he ceases to be a tasteful painter, in fact in his late work he is willfully tasteless, but this was not a man who would do anything as obvious as setting out to shock. He understood that he had to make a new kind of art that was about flesh as meat and meat as flesh. I can’t think of any other artist who is so cerebral and so cartoonish.’

Suddenly Mad David Hammons 1969

Body print by David Hammons, 1969

Although Hammons is known for his ephemeral objects and short-term installations, often on themes related to African-American life, his early work took the more concrete form of one-of-a-kind prints based on impressions he made of his own body. To make this image, one side of his body was covered with oil and sprinkled with pigment, then he laid down on a huge piece of paper and left his imprint.

Looks like he’s praying.

Finally, a quote from Steve Jobs, who enabled me to communicate with you on this device.

“Almost everything–all external expectations, all pride, all fear of embarrassment or failure–these things just fall away in the face of death, leaving only what is truly important.”

 

 

 

How I found a simple recipe for being happier and more grateful

My friend Jeanne, who is vegan sent me this and it changed my attitude…a lot! Making this simple dish changed me in profound ways…

Wrap veggie with hummus

*Tortilla (Food for Life brown rice or sprouted grain)

https://www.foodforlife.com/product/tortillas/ezekiel-49- taco-size- whole-grain- tortillas

*Oasis hummus

Nuke tortilla for 30 seconds to soften.

Preheat oven to 425 degrees.

Layer on tortilla as follows:

Hummus – Essential

These are the ingredients that I use if I have them on hand. You may want to use others.

Frozen corn kernels. Stick these into hummus to anchor.

Chopped sweet onion, e.g. Vidalia or white. Or sliced scallions

Sweet red pepper chopped or julienne or roasted red pepper, sliced

Carrot chopped or julienne

Sliced kale (I prefer lacinato)

Sliced or chopped fresh tomato

Roll up filled tortilla as best you can – it may be quite full depending on the ingredients you use.

Bake 7 minutes until edges are brown and crispy.

Yumm!

So why did this recipe bring joy into my life?

I haven’t been able to prepare anything but scrambled eggs, and I relearned how to make a cheese omelet a few weeks ago. Now I can add this to my repertoire of easy meals I can make!

People take the little things in life for granted. How to prepare a meal for oneself is not something a person normally thinks about as something extraordinarily special. But for someone with Alzheimer’s who hasn’t done it in a very long time, it can be a very big deal. It was for me today, and it led to remembering a video that a brave woman named Laurie shared with me months ago.

My dear friend and dementia mentor, Laurie Scherrer, who I meet with on Zoom chat every Tuesday morning, wondered why I said I can’t prepare meals. Now I have to have to wonder too. Every day is different and today I was able to dust and clean my furniture in the living room, and make my bed and my husband’s bed (with a little assistance from him). I cleaned all the cabinets in my kitchen.

APATHY BE DAMNED!

The truth is that apathy is common among people with dementia. It is different from depression. Apathy is much more common among people with dementia than in older people without dementia. About 2–5% of older people without dementia have apathy at any one time, but about 50–70% of people with dementia have apathy. A person with any type of dementia can have apathy but it is particularly common in frontotemporal dementia. Apathy can start at any stage of dementia but often develops early on. Many studies suggest that apathy becomes more common as dementia progresses. Once present, apathy tends to persist rather than come and go.

One of the reasons that people with dementia are thought to develop apathy is damage to the brain’s frontal lobes. These control motivation, planning and sequencing of tasks.The first neurologist I saw suspected I had FTD, until the results of the Spect scan showed the pattern of Alzheimer’s. He said my frontal lobes are likely being affected, despite not showing up on the scan. When someone withdraws, stops doing things and loses their confidence and abilities, their apathy can get worse and so they become even less motivated.

It is important for anyone supporting the person with dementia to help them avoid apathy.

This is a video of a man that Laurie introduced me to months ago, that finally got through to me, and got me thinking about how I am seeing the cup as half empty.

When my cognitive remediation counselor was here observing me making an omelet, I was so bummed that the plate I needed for putting the omelet on was not there when it was ready in the pan. It was sitting on the surface at the other end of the island. To me, the fact that I didn’t remember to get the plate, represented a failure in my planning. The woe is me attitude struck. She pointed out that I only forgot one thing.

What I need to remind myself is to see the cup half full, rather than half empty. I have lost a lot of confidence because of the losses I’ve experienced. Although things are harder for me now, and there have been losses and sometimes I get scared when I turn into the wrong door when I’m headed to a different location, or I can’t remember the name of someone whose face is very familiar, or I find myself telling someone something, and completely forget my train of thought, I need to remember that I am still okay. Yes, I’ve lost a ton of confidence. But today I was reminded, that following the steps of a simple recipe can help me regain confidence by showing me what I am still able to do. For those of you who read this and have no problems with the simple activities of daily living- dressing yourself, making breakfast, this must read as pretty dismal. “Change the channel”, you think, or “I don’t want to read about this, as it has nothing to do with me”. But things happen to people! Some like Nick Vujicic are born without arms or legs.  I developed Alzheimer’s. It can happen to anyone.

But look at what a person with disabilities can do. Nick Vujicic does more than people who have arms and legs do. He inspires.

I have to keep working on my attitude.

I have had a pretty bad attitude and yesterday was an example of this. I had to go with my husband to the Social Security office to provide a signature for the final approval for my Social Security Disability Insurance payment for the Compassionate Allowance that the Social Security Administration (SSA) has added for early onset/younger-onsetAlzheimer’s, giving me expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). My sleep is often impaired, I sometimes don’t get to sleep until 3 or 4 am. (Sleep disorders happen in people with Alzheimer’s disease and other dementia’s. We often have nocturnally disturbed sleep, with an absence of a circadian sleep/wake cycle). I had had about 3 hours of sleep, and was bitchy and grumpy, forcing myself to get ready for an appointment that for me was too early in the day.

Rather than being happy SSDI had gone through, I was extremely sad. I looked around the Social Security office and saw people I’d seen in my community that I formerly considered the losers. That was when I was an active normal person, but now I saw myself sitting with them waiting for my number to be called. I felt so glum that my life had come to this point. I never associated with these people, and used to feel high and mighty compared to them. I would offer them money if I passed them in the street, but never imagined myself in similar financial circumstances. Now I was sitting with them at the social security office. Mine was a special appointment with a man in the back office, to sign the paperwork for SSDI disability due to early Alzheimer’s. I found out that I will be receiving a third of what I was making when I was well and employed as the chair of my department. I walked home with my husband, and passed a few people I knew for many many years, who did not acknowledge me. I suspect it’s because word is out about me having Alzheimer’s in my small city, where I’ve lived for 40 years, and that stigma is raising it’s ugly face. It saddens me that people think I don’t have feelings, and treat me differently, and that these folks rushed past me and didn’t say hello. My internal pity party was raging.

Yet, for today, I am glad that I made dinner for my husband and myself. My new friend who knows I have this disease, sent me this recipe, after she invited me for lunch, where she served this in exquisite china, in her beautiful home.

I am not alone. I was proactive and found a social network through Dementia Alliance International and I Zoom chat with others diagnosed with varying early stage dementias, every week.

I found my friend and dementia mentor in Laurie Scherrer, who I also Zoom chat and text with (special thanks to Gary LeBlanc who created Dementia Mentors to connect people with dementia and help motivate us in an online community).  I’m able to Zoom chat, write my blog, and communicate. There are those with this disease, I have been told, some who are in the early stages, some who are younger than me, who can’t use a computer, who can’t write or read any longer. That day may come for me, but it is not here yet. My life has changed and every day has it’s challenges. What I do need to be thankful for, when I fall deep into the abyss, which I have done often and fallen hard, again and again, is to be grateful for what I still can do and for the care and understanding that is present in my life now.

Laurie Scherrer is adamant about maintaining her independence, despite having early Alzheimer’s and Fronto Temperol dementia. She hasn’t lost the ability to do many things that have felt impossible for me. She has created accommodations for herself to make it possible to still lead as normal a life as she possibly can. She still drives a little, shops and cooks (although her husband puts the casseroles etc. in the oven for her as she has burned herself badly trying to cook). She has created systems for cleaning her lovely furniture, and for making beds, and dressing, and even knowing how to pack her suitcase for traveling so it is easier for her to get dressed. She and her husband still do quite a bit of traveling together because of the accommodations she has put in place for herself. She has confided in me that many of the startling losses I have experienced, have been challenges for her too. I had just assumed that because she can do these things, she isn’t as progressed as me. She might not be as progressed, but she has certainly experienced losses. It might be that I am progressing faster, or was diagnosed later in the process. But one thing I do know. She is my inspiration to tackle things that I am still be able to do, and she helps to keep me on track and believing that my will can be stronger than my woe.

https://dementiadaze.com/

What works for you? Tell me how anything here is relatable. It might be running or exercise, watching butterflies or drinking bullet proof coffee, or riding your motorcycle, or doing yoga and then sitting quietly in meditative pose. What is your routine and how do you keep yourself motivated?

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