The drawing is a self portrait, surrounded by people, images I’ve drawn of some of the people in my life now. The physical act of drawing consumes me, trying to make the marks conform to what I want them to do, but unable to deftly apply my skills as I once did. I awkwardly sharpen the colored pencils with a blade. They keep breaking when I use the sharpener. The beautiful paper I used to use in creating a portfolio, is now replaced by simple Japanese sketchbooks. I don’t make studies any longer, as I used to in preparation for a series with a theme. I simply start and proceed. What comes out is the pathos, mirroring back my emotional state. In this drawing are some rudimentary images of my children, my granddaughter, my kind friend Jackie, an erudite outspoken man I met (whose wife has probable Alzheimer’s) named Joseph. I’ve drawn the home health aides employed to keep me company, keep me mobile and help me complete tasks. There is so much apathy and I have to push myself hard to write and draw and stick with it.
My paid companions are a dreaded need for a woman my age. Only three years ago, I was completely independent and functioning normally. How strange my life is now. How merciless is this disease, robbing me of memory and thoughts. My self.
In my attempt to fight this horrible disease, I document the journey. I use words and images. What else is there left but to document the journey? My unfiltered emotions. The disorientation. The fear. The lack of motivation. The confusion, and slow but predictable loss over bodily functions beginning. Myoclonus- twitching of muscles in parts of my body. Pushing my broken self forward. Out of the bed, into the robe, lurching to put on the slipper socks, down the spiral stairs, stiff legged and slow, urging myself to shower, dress, eat the berries, the yogurt. Scrambled eggs with toast this afternoon, offered to me by my husband, who is my weary caregiver. Forcing myself to eat, when appetite is no longer a reliable signal. It is after 2 pm, and I am finally dressed and eating breakfast and taking the Rivastigmine and baby aspirin. The day is short when one can’t get out of bed until 12pm. Night falls and I am on the computer, or reading. No one calls. My husband withdraws to his bedroom, which was our bedroom. Now it is his room to withdraw to and rest and sleep. I sleep in the adjoining bedroom, unable to get there and through my bedtime ritual until after 1 am and often much later. When I tried months ago to sleep with him, I panicked, because I couldn’t figure out how I would be able to get my robe and my phone and things from the other bedroom, and collect my clothes which were placed on a hanger along with my shoes, in the other room, where I assemble my clothing for the next day. I imagine this makes no sense to you. As I write about it, it makes no sense to me either. Yet the steps of gathering myself and my things to proceed downstairs to get washed and dressed, confused me so much that it sent me into an agitated anxious state.
Last week, I panicked when I was hungry. It was very late afternoon, and I was on a Zoom chat support group called Dementia Mentors Cafe, with others who have a garden variety of neurological impairments and diagnosis – Lewy bodies, Vascular dementia, mild cognitive impairment not otherwise specified. I am the only one with Alzheimer’s, the commonest of dementias. I muted myself and went to the refrigerator in the other room. I took out the foil covered plate my husband had left for me, with it’s post it note that said Big Lunch. I have gotten into a peculiar habit of leaving myself a place setting with a napkin upon which there is a spoon, a fork and a knife, along with a ceramic cup and small plate. When I took the foil off the plate, there was a half of an acorn squash that had been baked, a portion of prepared quinoia, and a large piece of baked chicken, that my husband had prepared the night before. I panicked because eating the baked acorn squash with it’s green skin, required thought. How to consume it?! I did not know how to eat it! Was I to microwave the plate with the food piled on it, and figure out how to get it into my mouth after, or did I need to scoop out the pulp from the squash with a spoon, cut the chicken in pieces, first? Such a simple decision, and I was confused and shocked. I wanted to get back on the Zoom chat. I ended up scraping the pulp from the squash with the knife, and cutting up the chicken, making a mess on the plate, and putting the plate in the microwave, taking a fork, and going back to sit in front of the computer where I was muted and the Zoom chat was still going on. I didn’t want to call attention to my panic. I sat muted and chewed and swallowed, feeding myself with the fork. When I was done, I went to wash the dish and fork, and went back to the chat, and shared this story with the others about how I forgot how to eat because I couldn’t figure out which utensil to use. The host of the meeting, said that she had that same morning shaken a protein shake without the top on, and all the ingredients got all over her kitchen. We laughed. I am not the only one losing my mind! __________________________________________________________________________________________
The change in my perception- the way in which people look hyper-real, like cartoon versions of themselves, makes me feel like this is a nightmare I can’t wake up from. This is what insanity looks like and feels like. I tried to contain it and sat quietly next to my husband, who was driving us to our son’s home yesterday. I know he is tired of my comments and narration. When we got there, I immediately ran to play with my 2 and 1/2 year old granddaughter, who is very smart and very active. She and I are sort of communicating on the same level now. She needs attention and engagement, and so do I. She doesn’t judge me. She calls me grandma. I see that she is doing so many things- make believe, counting, puzzles, and is even able to work a remote control car. Her world is closer to mine now, then that of my son and daughter-in-law, both working lawyers. My daughter-in-law had a grandfather who had Alzheimer’s. He was probably in his late 70’s when he died. She remembers that he would go out and get lost. She told me he became incontinent and her grandmother finally was unable to take care of him, and placed him in a nursing home, where he soon died. She thinks that by the time a person is at that point, they don’t know the difference between being in a facility and being in their own home. I don’t believe that is the case. The person just doesn’t have the ability to protest. They are helpless. They have lost the ability to communicate, but they certainly must experience sadness and feel displaced.
I have the ability and awareness to discern another’s emotions but can’t always follow a conversation. I make an effort to understand and ask people to repeat what they mean.
My time with my therapist is spent in a good deal of cognitive behavioral training. I’ve read that the caregiver should not argue with their loved ones who have Alzheimer’s. My husband says, Yes, Minna a lot. I know this is meant to get him off the hook, so that he appears to be agreeing and doesn’t have to get angry (of course, I’ve already forgotten what he’s agreeing with). Rather than argue with him, I have turned more inward, keeping silent.
Trying to convey normalcy, while experiencing anything but normalcy. Isolation despite being with others. Awareness of the schism between myself and others, those with dementia and those who are “normal”. I’m isolated in my confusion and slowness. This is my safe zone, where I can write about what this feels like.
My words and my art work do not do enough to convey what is experienced. It would be more evident if you were to watch me typing this, correcting words, as my fingers type out letters and go back and correct, correct, correct. I delete sentences I write into paragraphs, then write others, and delete again. My intentions are one thing, and something else comes out. Auguste Dieter, the first Alzheimer’s patient said it, I am losing myself.
I say, I’m getting lost in myself.
I tried to befriend people who have Alzheimer’s during my visits to The Rubin museum for their Mindfulness Connections series for people with dementia. I thought that a woman I met in November, who appeared to be in the early stages (walking, talking, well dressed and groomed), and who is a year older than me, might be able to use email or a cell phone, and would be able to be in contact with me. I asked her if she used a computer and a mobile phone, and found out the first time I met her, that she isn’t able to do that. She said yes she can, but her aide told me, she doesn’t use email or a phone, but she plays with things (whatever that means). Her home health aide, a Jamaican woman who wears her hair in dozens of thin braids, answers for her, every time I asked a question. I saw them again this past Friday at The Rubin. I was with Keith, my companion, and this was the second time we’d attended the program together. At the museum entrance, I spotted this woman with her aide. The woman followed her like a duckling follows a mother duck. Known as imprinting, it is a natural biological phenomenon that occurs in newly-born birds and mammals, allowing them to form a bond with their mother as well as providing them with information about their own identity.
When we sat at the long table set up for participants to gather, I began to converse with the woman, and not with the aide. The aide then answered my questions, that were directed at the woman, inserting herself into our conversation. This woman seemed capable of speaking for herself, although slowly. Answering my questions evidently made her think. She did not fully remember our meeting a few months ago, but indicated that recognized me. I asked her about her children. I learned she has 2 sons. Then the aide abruptly signaled the woman to go outside with her. I asked why she had to intervene in this way, and why can’t we just talk. The aide says she knows better, that she knows what will happen, and she has to remove her and walk outside. How I would have wanted to convey to this aide that this woman may need and welcome her support, but why did she have to substitute her decisions for what this woman may have wanted to do, which was to sit and try and converse. What threat did I pose to this woman, I wonder, in the mind of her aide? Might she be harmed by trying to engage in a conversation? Was my directness, an affront, directing questions and trying to converse with her? A person with dementia is an adult who is struggling to regain their place in the world. Why not allow the person to try and converse and be with others, for heavens sakes?
I saw Michael, the formerly brilliant lawyer, in his wheelchair. He is in late stage Alzheimer’s, and a stroke has taken everything from him. I learned about Michael from his aide Jaime, who is no longer taking care of him. He was with a woman, a new aide, and I approached them, and tried to greet Michael. Previously he was alert when I spoke to him and would try to say something, he could be drawn out. Now when this new aide roused him, he was unable to connect at all. The new aide and I concurred that he missed Jaime, and was depressed. Yes, I believe that even in the late stage, a person feels, and has an emotional response to loss. __________________________________________________________________________________________
Two groups were formed and I wisely went with the one that Robert, an energetic junior historian and docent was leading. He took us to see an installation of two film screens. The piece is called KORA, by Arthur Liouo. It was conceived as single channel film, but adapted to two screens in the presentation. The films are seen at staggered points in their duration, allowing viewers to consider the video from two moments in time. A ritual pilgrimage is captured, in which people are walking a path up the mountain, circling Mount Kailash, rising in elevation. This mountain is considered the embodiment of the divine in Buddhism, Hinduism Jainism and Bon. The ritual is believed to cleanse past negativity, ward off misfortune, and accumulate positive spiritual merit. Kora is a Tibetan word for revolution or circumambulation, and refers to the ritual practice of walking around a sacred object or site.
I yearned to be there and walk with those who have the strength to walk and traverse the path up the mountain, lifting themselves into the sublime. As the elevation rises, the landscape and season appear to shift, from verdant green hills to snow-topped peaks, furthering a sense of a place belonging to something beyond the mortal realm.
Joseph is a man I was seated next to as Robert described the artifacts in a Buddhist shrine we were sitting in front of.
My ears pricked up as Joseph spoke about the objects knowledgeably. Joseph unpacked his wealth of knowledge articulately. He has seen many objects and shrines from Buddhist temples in his travels with his wife (who he says has Alzheimer’s, and was seated next to him). I introduced myself. This time I was less interested in the objects, then I was during previous visits. I wanted to socialize and learn about this man who had traveled the globe, and I found out referred to himself as a 12th century man. In a short time, we were standing by the elevator, separated from the tour, and I listened to him describe the book of Job, and the lessons that Job learned in response to his grievous losses. Job refused to blame G-d for his travails. Job never lost his faith in G-d, even under the most heartbreaking circumstances that tested him to his core. Joseph recounted how Job’s three friends, instead of comforting him, gave him bad advice and even accused him of committing sins so grievous that G-d was punishing him with misery.
Job knew G-d well enough to know that G-d did not work that way; in fact, he had such an intimate, personal relationship with Him that he was able to say, “Though He slay me, yet will I hope in Him; I will surely defend my ways to His face”.
I asked Joseph for his email address so I could send him my blog. The next day he wrote me, saying he was delighted to receive my message. He too felt that we were meant to meet.
He wrote the following –