Portrait of my daughter September 24, 2018
We don’t know what will happen. One day we’re flying high, doing great, the next we come crashing down and the damage is irreparable. Life throws curveballs, especially near the end. But I’m convinced that I am still learning. Spirit will show the way.
Alzheimer’s is a physical disease that attacks the brain AND body. So spirit has become the most important aspect of the journey, but it takes having a body on this earthly plane to continue to develop spirit. So much to atone for, so many apologies to make (in earnest) before I say goodbye. Do not judge me. Cleansing the spirit takes work and time. I need to be able to own my life review. Forgive the angry ones that have hurt me. They don’t know any better. Forgive myself.
This is a very hard disease to live with. My genetic and physical imperative is to keep going, keep pushing. This is my Alzheimer’s pilgrimage. My body is becoming weaker, but there will be a healing of my spirit.
I have been trying too hard to figure things out. That’s not the answer. I am constantly correcting when I write and then I start over. I am fighting this dreadful disease by pushing away the mistakes, the cobwebs.
Although I obviously know the English language, as it’s my native tongue, writing coherent thoughts is harder and harder to do. Nothing about this disease makes sense but I keep trying to make sense of it. I will try to stay on track and continue to describe my experience progressing in Alzheimer’s. There is more spirit left than brain cells. I’ve been trying to write this post for many many days now. One sentence at a time.
Ruth, who lives in an apartment a half mile away, has become an almost constant companion, my closest friend since I met her last April. Her sister Jeanne introduced us. I met Jeanne through my synagogue, and she has been visiting me once a week for many months, and has been bringing lunch and dinner on Wednesdays. Ruth moved to Hoboken from Atlanta almost a year ago. Both sisters have big hearts and a lot of compassion. I would have never gotten to know either of them if not for having Alzheimer’s. Ruth is 73 and Jeanne is 77, and they are very different from each other, but nevertheless are true sisters who care about and love each other. Ruth is a Jehovah’s witness who was born Jewish. Jeanne is a long time member of the synagogue and a member of the chorus, who has lived in this town about as long as I have. Sadly my own only sister and only sibling, who knows I have Alzheimer’s, has not seen me in over four years. I would like to see her one last time, but most likely won’t. It is a double blessing that these two sisters have befriended me.
I have called Ruth my friend at the end. She flew to Atlanta to visit her daughter and family and will be there until Tuesday, October 9. I was worried about getting through this period without her support. At times it’s worse than I thought it would be. At times it’s okay.
A person with Alzheimer’s needs support, and I was afraid that being alone especially when my husband is not here, would be untenable. He is the one who does so much for me and for us. He shops and cooks and takes care of the house and all the finances, AND he works full time. The poor thing, he is exhausted as taking care of his Alzheimer’s wife and everything else he does is so much work. Ruth’s presence has allowed him to rest when he gets home from work, which he needs badly.
It’s more than a week (almost two weeks, I think) since Yom Kippur, the day of atonement. I wanted to go, so Jeanne came over and we walked to the synagogue, a half mile from my home. I sat next to her in the row directly in front of the bimah (the raised platform in the synagogue from which the Torah is read and services led). Jeanne is a soprano in the chorus and was there to sing Neilah with the rabbi. It is the concluding service and is a special prayer service that is only held on Yom Kippur. It is the time when final prayers of repentance are recited. During the repetition of Ne’ila Amidah, the ark remained open and I stood up and prayed for my loved ones, my son and daughter, and my husband. My granddaughter and the twins my daughter-in-law is carrying that are due in around three weeks. I did not pray for myself.
Throughout the High Holy Days Jews pray to be written in the book of Life, during Ne’ila this is replaced by seal. I did not pray to be sealed in the book of life, but I prayed for atonement and I prayed for them, my progeny and my husband, that they should be sealed in the book of life.
The day after the Neilah service, Jeanne walked with me again to synagogue to hear and sing Yizkor, the memorial service recited for deceased parents and other relatives. The name of the prayer means “May He remember”. Not only do many who recite the prayer find it to be a moving, emotional experience, it also has the power to elevate spiritually the souls of the departed. Yizkor is predicated on the Jewish concept of the immortality of the soul.
I read the line from Psalm 51 “The sacrifices of G-d are a broken spirit; a shattered and contrite heart, O G-d, you will not despise”.
I cry out to G-d, “Is my heart sufficiently shattered, Lord? Is my spirit sufficiently broken?” “The days of our years are seventy; or if, because of strength, they are eighty years, yet their pride is but trouble and wretchedness; for it is soon cut off, and we fly away.”
I am 64 years old! I don’t deserve this. I don’t. To experience the diminishment of my life because my brain is dying is unfair and tragic. I don’t deserve to live in such a chronically confused state, without full agency, with diminishing strength. I think of the film Unforgiven when Gene Hackman says, “I don’t deserve to die like this.”Eastwood’s reply is simply, “Deserves got nothing to do with it.”
The Baal Shem Tov said the broken heart is the ax that smashes all the locks on the doors of heaven.
At the conclusion of Yom Kippur the children came up to the bimah and Havdalah (Hebrew for “separation” and refers to the verbal declaration made at the end of Shabbat or a Jewish holiday, in which the holy day is separated from the mundane period that follows). Since Jewish days begin and end with nightfall, havdalah may be said only once darkness has fallen.
I was flooded with memories of my daughter singing here as a child. My son standing on the bimah at his bar mitzvah with Stephanie, the woman rabbi, who was the second woman in the country ordained as a conservative rabbi. That was 1995. My daughter was three. My late parents were there and my father who was well versed in Hebrew prayers, sang on the bimah. I hold onto the memories. My anchor is memory and I do not want to forget. I continually read that this happens in Alzheimer’s, that loved ones are not recognized and the relationships are not remembered. I will never forget them. Let me not forget my children and let them not forget me. That’s my prayer.
I know there are those who have their own tsuris (Yiddish for troubles and woes) in this community. However, for most it will be a year of normality, with it’s ups and downs. Most are not thinking about living through the coming winter, which is my concern now for both my husband and me.
I cry at night when I finally lay myself down in my bed. It’s usually after 2 am. Day and night have switched and it’s very hard to get myself to bed.
I do not want to progress further, but I’m aware that I can’t stop this insidious decline unless I off myself. I do not have anosognosia, a term that applies to people who have Alzheimer’s and do not know it. I’ve read that some become blissfully unaware. I am completely aware of losing my cognition and along with that my motivation and my strength. I’m aware that my writing is disjointed. I’m writing anyway. I have struggled to maintain a modicum of independence, wash dishes, and do laundry. I have progressed rapidly in the disease, only having been definitively diagnosed less than two years ago through imaging of my brain which revealed atrophy of my the temporal and parietal lobes. I know that this is fast progression. Some are diagnosed and plateau with short term memory loss for a long time. I have spiraled quickly.
Will I be able to write and walk and talk, dress myself and go with Jeanne to the synagogue as the weather gets colder? Will I be able to put on my down winter coat myself, that my husband bought for me early in the disease in 2016? Will I still be able to play Scrabble (which I do every week with Jeanne and with my daughter when she visits)? How will I change? Will I give up or keep going? Is it my choice?
My daughter plays Scrabble with me when she visits. It’s something we can still do together. She doesn’t spend enough time here to witness my progression.
People who are progressed in Alzheimer’s often lose the ability to express themselves with words. They use fewer and fewer words and often stop speaking. I can still speak and can have a conversation, but now there are times a stream of babble spews forth from my mouth as it did the other day, when my husband brought me downstairs for breakfast. Unbeknowst to me, he was recording me on his phone and later played it for me. He called it Alzheimer’s rap. Out came a litany of disconnected and nonsensical words, some of which rhymed. I did not have control over what I was saying, The words tumbled out of my mouth in a disorganized incoherent manner. This has been happening more often. I’ve read about what is called word salad, and watched a video of a woman who had Alzheimer’s who was unable to speak fluently or make sense. It happens in Primary Progressive Aphasia which is a form of Fronto-temperol lobar degeneration, but also happens to those with Alzheimer’s. Like everything else that has been sudden about this illness, this has now been happening to me.
Has G-d forsaken me? How could this disease take me and break me and scramble my brain so quickly? I have been looking to G-d to repair my broken spirit. He cannot repair my broken brain, can’t restore the disrupted synapses or repair my enlarged ventricles, but He can apply salve to my broken spirit.
Half moon phase
I was diagnosed twice, September 2016 when the first neurologist ordered a Spect scan, and again in February 2017, when the second neurologist ordered the FDG Pet CT. Both scans showed the pattern of Alzheimer’s. The disease began with full force in 2015 with major depression and tremendous anxiety. I went to a psychiatrist who put me on Welbutrin, SAMe, along with Lorazapan and Klonopin at bedtime. Rather than helping, the drugs unmasked the disease in the making. I began to stutter. Became hyper verbal. Lost my previously normal sleep cycle. Fragmented my thoughts and changed my personality. For a time I became aggressive, angry and paranoid. I did not know what the hell was happening to me.
Memory of the past is mixed up with the present and I can’t keep my mind on one thing long enough to complete a thought. What is happening is global impairment. A full on attack and destruction of my brain in every lobe. Progression. Brain atrophy. I write in clipped sentences. Does this convey what is happening to me?
My husband told me to write out the gibberish I was speaking. Alzheimer’s rap. Alzheimer’s Hip Hop. Words come out of my mouth that are disembodied artifacts. The poetry of brain disease.
The third Friday of every month is a program at The Rubin Museum called Mindful Connections. I’ve been attending since June 2017. It’s where I’ve learned more about what Alzheimer’s really looks like as people who have the diagnosis progress. I’ve met people in all stages of the disease there.
A year ago Michael seemed much the same as he is now, in a wheelchair, mute, incontinent, paraplegic and cared for by home health aides 24/7 who bring him to the museum almost every month. I’ve read that people who have Alzheimer’s and are in late stage can live for years if their carer feeds them and provides good 24/7 care. Michael is a living breathing example of this. When I first met him, Jaime was his aide, and then for a long time Georgia was his aide. He was well cared for by Georgia, neatly dressed, well fed and more alert. She said she taught him to say her name and I witnessed his attempts to speak. Last Friday my husband drove us to the program, and Michael sat with his new aide, looking a little unkempt, and certainly not alert as he was with Georgia. The new aide sat next to him texting on his phone, while Michael sat in his wheelchair asleep. Laura who runs the program greeted us at the long table. I sat with Annie whose bright smile and kind demeanor relaxed me. The usual suspects were there; Scott the former plastic surgeon, the very tall Peter with his kind aide who is a foot shorter than him, Linn who volunteers and who told me her late husband had been in an Alzheimer’s chorus with Michael eight years ago.
I pushed myself hard to get ready to be there on time. What I realized once I was there is that I have progressed a lot. A year ago when I first met Michael, my speech was normal. I had just started to write this blog. My walking was not affected. I was able to come with my daughter and later with my companions, first Jill and then Keith, and still later by myself on the PATH train alone. I walked normally without feeling imbalanced. Now walking is effortful, and I have to push myself. It has been a year. Now it is a hurdle to ready myself so that my husband can take me by car. I can still walk down the wide spiral stairs at the museum, instead of taking the elevator but it takes concentration and effort. I’m cautious and hold the banister.
Jeremy brought us up to the second floor and showed us a scroll painting of Red Avalokiteshvara, a bodhisattva who are traditionally described as beings that aspire to attain enlightenment and help others to achieve it. He is standing with his right hand in a gesture of giving and holding a stalk of lotus with his left.
Jeremy and Dawnette showed us the upper section of a Torana or gateway. It was used as the top of a portal entry to a temple or shrine. To me the central figure resembles a monkey, but we are told it is supposed to be a winged lion. The lion is holding and consuming two large serpents. beside them are crocodile like mythical creatures symbolizing both celestial and terrestrial water circulating between heaven and earth.
Next, Jeremy seated us in front of the Tibetan Buddhist Shrine Room which re-creates an immersive sacred space in which we encounter Himalayan art as it is used in practice. The objects represent the fundamental Buddhist acts of offering, prayer, contemplation, and devotion. It includes more than one hundred objects, including sculptures, paintings, offering bowls, musical instruments, and ritual objects. I had seen it before and the elaborate room offered me no meditative comfort.
The shrine seemed so remote to me this time until I looked at the left side and saw that here is where the monk would sit and offer tea to the devotees. I pictured myself seated there among the offerings, the pair of oboes played by the monks. For a moment I was transported to the 12th century and sat with the monks.
The program is always over too soon. My attention span is longer than many who come here. I used to spend hours in museums looking at and discussing art with my students, and I wanted to see more. I asked Dawnette to tell me about an installation called The Road to Sanchi by an Israeli artist, Ghiora Aharoni, which was installed to the left of the Tibetan shrine Room. Obsolete taxi meters are outfitted with video screens that capture Aharoni’s travels to sacred sites across India for Hindus, Jews, Muslims and Buddhists. The title refers to one of the most important sites in Buddhism, famous for it’s Great Stupa built over the relics of the Buddha. Sanchi and the other sites, including the oldest synagogue at Mattancherry, the Sufi shrine at Nizmuddin in Dehli, and the ghats of Varnasi, are never seen in the videos. The journeys become the vehicles for examining the prism of time and the act of pilgrimage.
These objects, discarded obsolete taxi meters with films of journeys to pilgrimage sites, made more sense to me as art – spoke more to me about my condition and yearning for spiritual peace, than any of the ancient objects we had seen that day.
Out on the street again. Seventh Avenue, and headed for the parking garage. A billow of steam erupting from a tube coming out of the ground. New York City streets are famous for this. To me it signaled the release of tension. The street breathing.
We’re behind a truck on route to the Lincoln tunnel. I see how the museum and the art carries over into the street. Serpents and bodhisattvas. Serpents painted on the back of a truck. Symbols everywhere. Art is everywhere. Warriors of the spirit.
A pilgrimage is a journey or search of moral or spiritual significance. Typically, it is a journey to a shrine or other location of importance to a person’s beliefs and faith, although sometimes it can be a metaphorical journey into someone’s own beliefs. This is my Alzheimer’s pilgrimage. It’s a journey and it continues…