Nobody Really Owns anything But we still Love To Shop, is the last drawing I made before early onset Alzheimer’s came on suddenly, spontaneously and has progressed quickly. It’s different from all the drawings I have made since then. Witty and urbane, it illustrates the way I used to think. It contains a message I still believe is true. This material world is not fully real. Everything is illusory. We plan, we attain things, we hunger for adventure, we strive for security and we want stuff. Life is desire. We want. We seek. We shop. And then it all disappears. The tipping point. In an instant it all disappears. Whether you are Rupert Murdoch, Warren Buffet, Jeff Bezos, Bill Gates… a billionaire or pauper, or anyone in between, it’s all going to disappear, because as we all know you can’t take it with you in the end.
That dress I bought from Barney’s, reduced from $2,000. to $50. was such a bargain. Seems like yesterday I was eagerly shopping at Barney’s on Broadway, picking my way through the sale rack. Now Barney’s is in bankruptcy. What’s that dress worth now sitting in the closet. 10 cents or less?
The pretty young woman in the mirror is no more. Her face is lined and there are bags under her eyes. The shiny dark hair has turned gray and is thinning. Who is she now? Is she the same person? The sturdy, handsome young man, his muscles bulging out of his tee shirt, his dazzling smile and gleaming eyes. Where is that boy? He lays in his hospital bed, his formerly bellowing voice now reduced to a whisper. “I love you”, he mews. “I am still your hero. Aren’t I?”
Everything changes. Morphs, declines and disappears. While we are here we tell the story. While we are here we are the story.
I no longer go shopping as I used to. I was that mom and wife who filled the refrigerator with all kinds of goodies, good food and staples. I shlepped and unloaded the packages. I filled the cupboards. I was an excellent cook. My family sat down for dinner together every night. Sometimes my husband was grumpy and tired after a hard day at work. Sometimes the kids fought or teased each other. Sometimes I felt like a drudge. Usually I felt thankful that I had two healthy kids who were smart and capable, a handsome able bodied husband who loved us. These are normal feelings. Life was not easy but we made a warm comfortable home and everyone was thriving. We were a two income family. I worked, I shopped, I cooked, took care of our kids, made sure everyone had clean clothes, shirts were ironed, the carpets were vacuumed, the surfaces dusted and gleaming. We took vacations, sent the kids to camp, threw dinner parties, went to concerts and movies, went out with friends and family. The kids went to good schools. I made films, learned screenwriting, studied art history, wrote lesson plans, mentored students. There were financial problems, emotional meltdowns, health crisis, but nothing seemed insurmountable. I was strong. Then. Ambitious. Always looked forward.
As the saying goes, “Life is what happens to you while you’re busy making other plans”.
I dreamt I was shopping at a large gourmet store that resembled Gourmet Garage or a huge Whole Foods in New York. I was with my husband and daughter, but they were in another part of the store. I stood in front of a display of flowers holding my shopping basket, thinking. In my mind I was designing a shopping basket retrofitted with a built in plastic vase in the corner. This was to be filled with water, so that the stems of flowers would stay wet until purchase. I felt like the old me in the dream. Just shopping and thinking.
In my reality now, a trip to the supermarket is a very big deal. An excursion. My husband will tell me I need the exercise, and after getting my shoes on and concentrating hard as I tie the laces, after putting on my eyeglasses, then struggling to get my coat on, off we go to Shoprite to buy some fruits and vegetables, yogurt and my favorite, ice cream. My husband directs me now as he selects the items. He says “stand here”, and I obediently do just that. We’re both concerned that if I veer away from him, we might get separated and I might start to panic. He holds my arm directing me through the aisles. People pushing shopping carts crisscross and almost bump as they make their way around the busy store. To me this feels like an obstacle course. The lights are so bright and everyone is on their individual mission to fill their carts with food. The cases are filled with so many items. The savage looking meat aisle. The acrid smell from the aisle with cleansers wafts up my nose. There is an intensity to the experience of being there. I look down. He directs me to turn. I turn the wrong way, kind of frozen in space, like a deer caught in the headlights, and I end up facing in the wrong direction. He asks, “what are you doing?” I say, “I don’t know…waiting for you”. He grabs my arm and says, “straight ahead”, and we head to the dairy aisle. Then he says, “I think we have everything”, and we walk over to the scanners that read the bar codes on every item with a laser beam light that translates the binary codes into a coinciding price. He shows me how to properly hold the bar code up to the light and then I place each item on the conveyer belt. He packs the items into two bags, one for most of the items and a lighter one for me to carry. He wants me to feel useful. Even though it is more than likely a hassle for him to have to patiently wait for me to do each thing slowly, he is trying to not do every single thing for me.
A trip to the supermarket is now our date night. The inordinate patience required by the the caregiver spouse of his wife who has dementia is exhausting. Shall we call this love in the age of Alzheimer’s? Or would you call this assisted living?
Portrait of Julie
Julie is my friend who lives in Alabama, that I’ve never met in person. We met on the Alzconnected forums when I emailed her a link to my blog. We text each other, and have been offering each other support for many months. I’d spoken to her on the phone once a little over a year ago. She was diagnosed with possible Frontotemporal Lobar degeneration by one neurologist, but another doctor thinks it is Lewy Bodies. I suspect it’s a form of Semantic dementia. She is five years younger than me. At sixty, the disease has caused her aphasia and she has written to me that it is increasingly harder for her to find the words to speak. I understand this as I stammer in search of words to express myself, searching through my rapidly depleting memory bank and coming up with blanks. We are from wildly different backgrounds. She’s a Christian, a Southerner who grew up as an army brat, the child of a high official, and lived all over the world. It is apparent to me that her devout faith is what eases the burden of becoming so ill in young middle age. She’s also a mom and a grandmother. I asked her if she reads the bible and she wrote yes, but not like she used to. Then she asked me if I did. I reminded her that I was born a Jew and she asked if I have faith. My answer was that I question. She wrote (verbatim), “That’s good. Keep question. Maybe you get answers. Many never even bother even question”.
Julie wrote that she does not go into the Walmart her husband drives them to. She stays in their vehicle with her dogs, and has sent me smiling selfies as she sits in her car with her dogs as she eats chocolate from a miniature Whitman’s sampler. She loves to go with her husband for these drives, but finds the experience of going inside the store causes her too much anxiety. Her way of protecting herself is to withdraw, and find her comfort zone. When she’s not with her husband, the dogs and a cat are her companions. In the time we’ve been texting her brother has visited her, and her best friend from college drove down from Pennsylvania and stayed a few days. Since I’ve never met her in person, I can’t really say I know her. I know her from the composite of words and photos that she has shared. I know that she strives to be okay with her illness, to choose acceptance, and to take care of herself as well she can. I know she was a college athlete and a swimmer. She still stretches and exercises some days. She doesn’t like it when I complain. She concurs that she too suffers, but tells me she is trying to be happy. I know some days are really tough for her. If I had just one word to describe Julie, it would be stoic. The stoic philosopher Epictetus wrote, “when alone call it peace and liberty, and consider yourself the gods’ equal. When in a crowd, think of yourself as a guest at an enormous party, and celebrate the best you can”.
I learn from her, despite my regression, bemoaning my fate with the tendency to dwell on the dark side.
When I wrote her “I want this to be over already”. She texted these words-
“I know. Don’t stay there. Somehow have to change your view. Look less loss. More moving on…Still much to learn here.”
Portrait of Mimi
Portrait of Soren
Portrait of Wayne
These are drawings of the ones who are implicitly tied to me (for better or worse). My loved ones. My adult children and my husband. The people I love. The people who are hurting because everything changed as a result of this “long goodbye” of mine.
I have hundreds of photographs saved in my iPhone. They are a visual history of what has transpired since I became ill. As I scan through them, I see all the people who were a part of my life over the past almost four years, the years of the acute trajectory of this illness. For the most part these people have disappeared. The visitors I call them. Two years ago there were the young mothers, who would stop in with their little kids. That was sweet while it lasted. They’d tell me about themselves and how they came to be sitting in my living room. A few had had a relative who had Alzheimer’s and was now gone. I became someone who people would divulge their life stories to. My living room became a sort of confessional. I thought about those who refused to come near me. I came to realize how tainted I’d become. Maybe people thought they’d catch it to.
Jeanne has been the only one who has stayed since I told her about my diagnosis in September 2017. Jeanne, an unusual woman, 12 years my senior. My Scrabble partner who brings me muffins and dinner every Wednesday, who has escorted me to Lincoln Center Moments and the Metropolitan Museum program for people with dementia.
There are the zoom chats with people with various forms of early dementia. Most of them are still highly functional, living lives with purpose, advocating, traveling. My life is now a far cry from that, and when I describe to them how my symptoms have progressed, they look puzzled.
Jackie, the chair of Dementia Action Alliance has been a big support with weekly zoom chats. She encourages me to keep writing this blog.
Laurie, my dementia mentor, has stuck by me with weekly zoom chats for the last three years. She has not progressed quickly as I have. That is not to say she doesn’t also have symptoms. She does. Sometimes I feel remorseful. Why have I progressed so fast? Then I think about those who are no longer here. Susan Suchan who I met on a zoom chat, who so valiantly battled Primary Progressive Aphasia and cancer, and was only 60 when she died. Or Susie Bishop, a super talented film producer, who I never met, but read about her diagnosis of early onset Alzheimer’s at age 54. She died four months ago at age 59. I know for some this is a five year disease. Pat Summit, the great basketball couch, diagnosed at 59 and gone at age 64. So while I know where this goes, I am still here writing. Battling this monster. Learning to swat away the anger.. Ending the day with sadness, yes, but a smile as well. Learning.
Caarin, my niece, found me in August, boldly coming to my door. My niece who has never met her birth mother, my sister. My sister who has not seen me since before I became ill. Caarin, who knows the work of all the artists, contemporary, modern, ancient…the architects, the writers, the musicians…I used to admire and study. I wondered how that could be. How it is that she loves the illustrations of Maira Kalman, the illustrator who influenced the drawings I made before I became ill. Caarin came today and we went for the walk on the route I try to take every day. Afterwards she took out her knitting needles and yarn, and showed me how to knit a simple stitch, and then several rows of stitches in a red and pink yarn, the color of which I would have selected in a sweater when I used to shop. There is something interesting about this. There is this law of attraction that resides within us that may be part genetic, part cultural, that supersedes this illness. I am grateful for her. She brings light to the end of this tunnel.