The Moral of the Story

 

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The slides are some of my drawings from the past year. They chronicle a personal visual history of my progression in Alzheimer’s since last summer. A year has passed and I am now retired, having resigned from my position as the chair and head teacher of the art and art history department of the private school where I taught for twenty years. I had also been an adjunct professor at New York University. I was working on an amazing  film project begun as a Fulbright to Poland. My editor had cut a great film from the 35mm footage my crew shot in Poland from my original story inspired by a true story about a dwarf who was my late father’s friend, and survived the Holocaust by hiding in garbage cans. I had completed a great script. I believed I would get this movie made https://vimeo.com/91234297

My life stopped with this disease. I lost my friends. Lost my long time therapist who I had seen for nine years. I lost the respect of my husband, my children. I could no longer be the woman I was. The capable professional, adoring and stylish mother who laughed and gave endlessly of herself was no longer that person. I stopped being able to go food shopping and cook, couldn’t prepare meals, began to have trouble dressing myself. My personality changed. It all happened so fast. I lost my identity! I still had the same name and address and telephone number, but I became someone else. An alien to myself. I felt like a monster had invaded my body. I thought an alien had abducted my brain. I receive Social Security compassionate care allowance now for early onset Alzheimer’s and seek activities and friends who will not shun a person with this dreadful disease.

*****

 

On Friday I went by myself to The Rubin Museum’s Mindfulness Connection’s program for people with dementia. It’s on the third Friday of every month. This was the second time I’d been to the city by myself in almost two years and was the second time I went to Rubin alone. I’ve been attending since October 2017. Ten months. First my daughter took me, then Jill, the young woman who worked as my companion for several months. She quit. Then Keith who I hired as my companion, took me four times, from January through April of this year, 2018. Then Keith quit. I was not going to let that stop me. My husband works on Fridays. He can’t drop everything and take me. I know the route, and in May pushed myself to go alone, though I had a great deal of anxiety about it. The first time there was a sense of triumph. On Friday, I did it again. Though the disease is fast progressing in me (physical symptoms as well as cognitive with agitation/anxiety and depression), and there has been sleep breakage for over two years (I have not had over four hours of continuous sleep in that amount of time), and I am slow and confused about so many things, I’m a fighter, and this is how I am fighting the disease. By not allowing my impairments to rule me constantly and yet they do. It’s paradoxical. It’s hellish. The disease wants me to stop pushing. I can only fight by pushing back. There is a heaviness, a sense of gravity pulling me down. My agility is gone. I feel like I lumber when I walk, and am wobbly. Nevertheless I push.

Suddenly Mad- The Moral of the Story - on the PATH train going myself to Rubin (photographing my reflection)

Here I am on the PATH train, my image reflected in the glass on the door on route to the 14th Street station. I know the route and it’s not a matter of not knowing where to go. It’s the journey that is daunting. I am anxious about being outside. Rudderless. I am slow and everyone passes me. I let them pass, knowing I need more time. I’m not sure whether to stand up when the train reaches the stop, or wait until the doors open and make a fast dash to the door. Indecisive. The slanted step I am not expecting, as I climb the two flights up after arriving, is dealt with. I notice the construction going on at the opposite side of the street, and have to cross the traffic intersection the other way. No big deal, but for a person with Alzheimer’s, any change in what is expected can present an obstacle.

Lin was there when I arrived. She tells me her husband passed away last month and he had Alzheimer’s. She is grieving, but is extremely dignified, composes herself before she becomes tearful as she tells me about him. A pretty, energetic woman, with short cropped white hair, she is volunteering and her compassionate presence is welcome. I showed her my new Medic Alert bracelet, as she had expressed concern last month when I arrived alone and I didn’t have one. It is engraved with the words – Alzheimer’s, Memory Impaired, Allergic to Penicillin, and numbers identifying me to a national service if I get lost.

Across from Lin sat Amelia and her aide, Ray. Amelia looks much younger than her age (75, Ray tells me). She is wearing a hat, a paisley blue and white blouse, hoop earrings, a beaded necklace, a pair of new burgundy New Balance sneakers.  Ray tells me Amelia  was a ballerina and that she had four miscarriages, and has no children, but is married. I introduce myself to her. I immediately find out there is not much Amelia can do. She speaks a few words, but Ray tells me that she is incontinent and under her stretch jeans, I notice the bulge of her diaper. Ray tells me she can’t feed her self. Obviously she doesn’t dress herself either. I may be a little unkempt, but I dress myself, and though it is getting harder, I manage to groom myself and put on some makeup. Amelia says something to me, but I don’t understand what the words are. Ray tells me she said she likes me.

I smile and get up and make my way over to Michael, who has arrived with his aide Georgia, and is seated in his wheelchair, dressed in a spiffy navy polo shirt, jeans and a white baseball cap. I make eye contact when I say say hello, and tell him how much I wish we could have a conversation. He is alert, receptive and tries to speak, but no audible words come out. With Michael, I sense the intelligence, or something about his former personality, a vibrancy, behind all the impairment. He is clearly in late stage dementia, but there is so much desire in him to try and communicate. I’ve seen him when he was depressed and much more withdrawn. That was when his aide, Jaime left, and was replaced by Georgia. Yesterday he looked brighter, more aware than before. Somewhat able to be reached by my words and communication. Michael was a lawyer, and I know he’s a well off man who is financially  prepared for affording his care. His children hired Georgia, who is an excellent aide. He lives in a beautiful part of Manhattan. She takes him to a program through NYU where they work with him, providing cognitive remediation, and I can see Michael is trying. That is the will to live. I see it in Michael. I see the effort he makes to communicate. I see the pride in Georgia that he is learning to say a few words.

Alzheimer’s and what it does to a person is cruel, beyond cruel. Here I am in a much earlier stage of this horrible disease and seeing Michael and Amelia, I know this is not the future I want for myself. Yet the only option has been to to go on each day, or end this while I still can. If I wait too long, I will not have the option. I am hoping something else takes me before I become hopelessly unable to make a choice. Of course we all die. But there is a reason this is the most dreaded disease of all. It’s a relentless monster that takes and takes and takes away everything from a person that makes them who they are. Words, thoughts, personality, mobility, the ability to eat, chew, swallow, piece by piece, the essence of what makes a person who they are is destroyed. I describe it here, and I think I do it very well. I think it’s important to be honest about the ravages of this disease. When it’s really Alzheimer’s it only gets worse. Because I am so aware of details, I use this forum to elucidate exactly what I see. Meeting Amelia was more difficult for me, even harder than seeing Michael in his wheelchair. When it was time to go upstairs to view and discuss the artworks, Amelia needed help coming to a standing position, needed help to get out of the chair and walk (which she can do). It took both Ray and Lin to get her to stand up and turn. Once she was standing up she was able to walk to the elevator and be directed to get on.

Another man, Steve, tall and sturdy with grey hair, wearing a turquoise polo, khaki pants and sneakers (I photograph with my iPhone to remember what I see. It’s because of these  photographs that I can describe these details). Steve got on the elevator to join our group. He was accompanied by his aide. He was conversant and clearly in an earlier stage than Amelia. I asked his aide if he dresses himself. She said his wife lays out clean clothes for him to dress. He said something funny and the people on the elevator laughed. It didn’t register with me. I wish it had. I want to laugh. I’m so humorless. It’s the one thing I miss the most.

*****

Suddenly Mad- The Moral of the Story - Wheel of Life at Rubin

Jeremy and Dawnette gathered us around the composition called The Wheel of Life. I initially faced the TV monitor with an ad about the museum on the screen. I was not orienting myself until Jeremy redirected me to turn my folding metal and fabric chair, and look at the painting. It’s things like this that make me see how disoriented I am. I’m out of sync.

It is said that Wheel of Life was designed by Buddha himself and illustrates his fundamental insights into the nature of existence, rebirth and the cycle of unenlightened existence called samsara. The painting’s details are supposed to remind us of the benefits of positive actions and the dangers of accumulating bad karma through negative actions. I thought of the ominous email message I received from my sister the previous day (and then found out from her that it was my brother in law who actually wrote it). It was nasty and suggested I have this disease because of my karma. But is it true? Did my brother in law get his own long term chronic physical illness because of bad karma? Did Michael end up in late stage Alzheimer’s because of his karma? Did Amelia end up as she is now, progressing in this horrible disease because of karma? There are so many tragedies that the human condition is fraught with. Do the lucky ones prevail because of good karma?

How I wish my sister would have cared enough to come and see me upon learning I have Alzheimer’s. She’s probably afraid to see me. It’s so much easier not to.

How sorry I am for any ill will I have communicated to loved ones and friends. I am sorry for being a fighter, holding onto anger, and not having the will power to walk away. I was abused in my family of origin, abused and neglected. I have been hurt a lot, and when I was well I had the resilience to move on, to value myself and put my energy into positive action. Now I have little energy, little energy to move my body. I have endured blow after blow, loss upon loss. Is this my karma?

I ask G-d for forgiveness for being the ogre that my family has found me to be. I ask for forgiveness from each of them if I have in ways created a karma which made me get this disease, and has made me a burden to my husband and children. I wish it hadn’t happened. Forgive me if I have brought this upon us through my own karma. I wish to be released from the vicious cycle of negative action and thought.

Suddenly Mad- The Moral of the Story - Jeremy docent in front of film projection with offerings of incenseJeremy brought us up to the third floor where we sat in front of two screens projecting images of a Himalayan ritual in which people burned incense as an offering. In Buddhism this is a sacred offering. The burning of incense results in fragrant smoke and teaches the necessity to burn away negative qualities within oneself in order to reveal the pure self within.

I sat next to Ira and his wife Sandy (who has dementia) as we looked at the projections. He is devoted to her care. They were a professional team throughout their marriage, and now are a team living life, together accepting the changes in Sandy, and managing their days by going dancing, attending concerts, visiting museums – filling their days with as much joy as they can. What I see in Ira is that he faces his life with courage, confidence and kindness.  I also see the strain he experiences, but his spirit enables him to be warmhearted, friendly and considerate. It’s a choice to be this sort of person.

Suddenly Mad- The Moral of the story - Rip Van WinkleWhich brings me to Rip Van Winkle. I have begun reading  from a collection of the best known and memorable short stories by great American writers. Rip Van Winkle is a ne’er-do-well who sleeps 20 years and upon waking is startled to find how much the world has changed. Washington Irving the author, shows us that Rip Van Winkle is a character who always has been, is, and always will be. There are millions of people around the world who take his nonchalant view of life, his uncaring, unmotivated attitude and accomplish absolutely nothing. Rip is an icon of the stagnant, the lazy, and the useless. He is the person who goes through life never fully living it and before he knows it, is old and dying wondering where has the time gone.
I was never like Rip Van Winkle, but in Alzheimer’s have seen that I’ve been robbed of my former motivation and lust for life. I’ve become like him, as I had to give up my passions and my work because I could no longer do these things. I do not like the person I have become in this disease. Lazy, self absorbed and fearful. I used to think I’d never retire. I had ideas,  creativity and boundless energy. I was devoted to my children, my teaching and creating art and films, and suddenly the meaning in my life is gone. Poof. Everything that I treasured and had meaning changed. I was independent. Forced to retire, I have had to fight the disease and find new motivation, and it’s been extremely hard to do.  Some of my dementia buddies I meet with on Zoom chat have poured themselves into advocating for people with dementia to have a voice. They advocate for changing laws and are speakers at conventions that show that there is life after diagnosis.

In my way, I do that here in this blog by sharing my thoughts and experiences, my consternation about the stigma of the disease, and how people treat those who have a dementia diagnosis. I share my battle with this treacherous disease, and how people with it manage their lives with caregivers, aides and support. I rail against the system that medicates dementia, and places us in nursing homes, removing us from our communities, our families and friends.

My life is very small now and I do need a good deal of support. There are real fears that involve progression of the disease. But as long as I can, I will continue to find a way to share, and learn and teach.

Suddenly Mad- The Moral of the Story - walking back home from Ruth_s

This is the view as I walk down my street on my way home after visiting my friend Ruth. I am honored that she is my friend. She teaches me with her kindness and acceptance what friendship is. I tell her she is my friend at the end. She allows me to be who I am now and accepts the reality of the changing nature of my impairments. She teaches me acceptance. It’s the hardest lesson to learn. For anyone.

12 thoughts on “The Moral of the Story

  1. Pingback: The Moral of the Story | zuzusays

  2. You do not have Alzheimer’s because of bad karma. You do have Alzheimer’s because of crap inside your brain biology that is damaged and science doesn’t know how to fix. Bad karma doesn’t cause disease. Bad brain chemistry does. That is science.

    I’m sorry there isn’t a good soul who lives near you to escort you to your meetings. I’m glad that you are finding your way yourself. You are doing so well given the brain disease that is trying to stop your progress.

    You have lost so much of your former life and it is obvious that it hurts you in a very deep place. You are, however, finding a new way of teaching others that you don’t yet recognize. As a person who cared for my mother in law, and now works with many others who are carers of persons with dementia, you are helping answer so many questions I’ve had. I needed to know what was being thought by the person who had dementia, how they felt, what their confusions were. You are filling in some of those areas that I was concerned about, verifying my suspicions.

    I used to do classes in the summer with special education kids about fire safety. There was a young lady who had cerebral palsy who was unable to communicate in any way, never had been since birth. When I talked to the kids who were much younger than she was I always tried to speak to her on a more adult level as if she totally understood me. I often thought of how horrible it must be for her if she was totally cognizant inside her head and was only unable to communicate her thoughts and ideas. My mind is always working, whizzing away at the speed of light about everything and I need to share that with someone often, what if hers was too and she had never been able to do that? The thought always bothered me, and it concerned me thinking the same thing about people in a coma, or with dementia, so I always talked to them as if they totally understood what I was saying to them.

    You write so well, you describe everything in detail, you share your feelings so others understand, you communicate. What you write now may not be on the level you used to write, but you have an amazing gift to show people what is going on inside your head as Alzheimer’s changes your perception, function, life. It’s helping us learn what we need to do to help those we care for to remain independent, feel respected, loved, useful. It’s helping those who have dementia know what they will face and how to live their best lives regardless of the challenges. It will help us all continue to fight for the changes that need to be made legally and socially.

    I know it is difficult for a family to cope with chronic illness. There is a lot of past behavior and hurt to overcome, and sometimes it just can’t be put aside to face the challenge of the present. I do hope that your family can somehow read your posts and see who you are now, consider counseling with you so you can all deal with the present so you can all support each other and make the future one of support and peaceful calm. If not consider looking for a new doctor and therapist who will help you find a support person who will look out for your best interest regardless of your family’s opinion so you get the encouragement, activities, care, and guidance you need, even if you need the help of a social worker or lawyer to get that help. You still have the ability to reason and make decisions and think clearly as evidenced by your posts on your blogs.

    One of my favorite songs, by Matchbox Twenty –
    All day
    Staring at the ceiling, making
    Friends with shadows on my wall
    All night
    Hearing voices telling me
    That I should get some sleep because
    Tomorrow might be good for something
    Hold on
    Feeling like I’m headed for a
    Breakdown
    And I don’t know why
    But I’m not crazy, I’m just a little unwell
    I know right now you can’t tell
    But stay awhile and maybe then you’ll see
    A different side of me
    I’m not crazy, I’m just a little impaired
    I know right now you don’t care
    But soon enough you’re gonna think of me
    And how I used to be
    Me
    I’m talking to myself in public
    And dodging glances on the train
    And I know
    I know they’ve all been talkin’ ’bout me
    I can hear them whisper
    And it makes me think there must be something wrong
    With me
    Out of all the hours thinking
    Somehow
    I’ve lost my mind
    But I’m not crazy, I’m just a little unwell
    I know right now you can’t tell
    But stay awhile and maybe then you’ll see
    A different side of me
    I’m not crazy, I’m just a little impaired
    I know right now you don’t care
    But soon enough you’re gonna think of me
    And how I used to be
    I’ve been talking in my sleep
    Pretty soon they’ll come to get me
    Yeah, they’re taking me away
    I’m not crazy, I’m just a little unwell
    I know right now you can’t tell
    But stay awhile and maybe then you’ll see
    A different side of me
    I’m not crazy, I’m just a little impaired
    I know right now you don’t care
    But soon enough you’re gonna think of me
    And how I used to be
    Yeah, how I used to be
    How I used to be
    Well, I’m just a little unwell
    How I used to be
    How I used to be
    I’m just a little unwell

    Continue writing because you are helping others, as well as yourself, more than you know.

    Like

    • Thank you for your long comment and for sending the lyrics from the Matchbox Twenty song. As much as I try to impart what is happening to me, my family members do not understand or improve. What a contrast between you and my daughter-in-law, who yesterday came over for Father’s Day briefly. She said she thinks I am pretending to not be able to speak properly. She thinks I am acting! It gets a person who has Alzheimer’s extremely frustrated. Makes me feel like I would be better off if I sat in a corner and didn’t try to interact at all. My daughter was here too, and it didn’t go well. I end up pleading for more support, and I don’t get it. The daughter in law doesn’t read the posts. I don’t think my son does either. My daughter does. I hope she reads what you wrote.

      Liked by 1 person

  3. Thanks Minna
    Sounds like you are doing great getting around on your own. And I agree with zuzusays that dementia is not bad karma. I have known too many people who have lived very good lives but have also suffered alot. My Barbara is a classic example of that. A devoted mother and wife who never hurt anyone, or did anything bad….When it first happened we were asking, God Why?, why Barbara? but we have come to the conclusion that, that question is not going to be answered. So we ask, How God? how do we live with this and its been very liberating. Still tough though….And yes keep up the writing its very helpful
    Take Care
    Keep Lookin Up
    Jack

    Liked by 1 person

    • Jack, thanks again for your supportive comments. It’s a messed up family who does not want to deal with my needs in this disease. My sister and brother in law are downright cruel. Karma is what my brother in law calls this. Cruel. You have a completely different dynamic with Barbara than my husband has with me. He and my grown children do not know how to deal with this well at all. Yesterday at my home for Father’s Day, my daughter in law said I am pretending to have trouble speaking. Frustrating. Being believed is important. Being supported as much as possible is what is needed from family members. Not this. I am trying as hard as I can to not need so much from them. I do need my husband to understand more, however.

      Liked by 1 person

      • Oh Minna i really feel for you. You certainly need more support. But sadly that support doesn’t always come from where it should. It’s a sad but true fact especially in the alz world.

        I am praying for you that more help and support will come.

        Kia Kaha which means “Stay Strong”

        Keep Looking Up
        Jack

        Liked by 2 people

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