This is the last drawing I made of my husband Wayne. I call it Beauty Boy because to me he is the most beautiful person in the world. Our situation is difficult, troubling and tragic. I have Alzheimer’s that has progressed and Wayne has stage 4 metasticized lung cancer and has had many courses of radiation and has begun chemotherapy. I love his attitude. He appreciates every day, takes pleasure in every little thing – the flowers he sees, the song of the cardinal, and sends me photos and plays the recordings he makes of birds. The drawing shows him in a robe. The background is bursting with flowers, and it a scene in which he rules the mesmerizing universe, with two owls standing beside him. The wise owls are his sentry’s. They guard him.
Writing now is very hard, but I still want to express myself. What has happened is that my thoughts are fragmented. Memory is spotty. I see a face in my minds eye and try and think of the name. It doesn’t come. I reach for my phone, then realize I don’t know where to start to look. Is It someone that I knew that I want to remember?
In other words, I am getting lost. Lost in a place where I can’t find my way. Physically I know where I am. I still know my address, the city I live in, and remember my phone number.
I recognize my family, my friend Jeanne, my friend Janet, my friend Razel, my niece Caarin, my friend Jackie… It’s not being lost physically, it’s accessing information. Processing my thoughts. And in my case a loss of control over my body. Moving around. Functioning. I can walk, but feel imbalanced. I think this is called Ataxia and it can include gait abnormality. It’s obvious that I’m ultra cautious walking down stairs.
I sit much of the time. I have to remind myself to get up and walk around. I know that I began pacing around my living room so that I would not forget how to walk. But that action became a part of my routine when I get downstairs in the morning, because I don’t know what to do with myself to start the day. Then I take my robe off and hang it up in the bathroom on a hook, and go to the notebook I keep on the kitchen island to write the list for the day. On the list, I write what I have to do that day. But I also write and rewrite who I want to contact, the people who have written to me in response to this blog. I do not write to them, and for this I apologize.
I remember that my friend rabbi Michael Schudrich told me he was getting married again and that he thought this would make me happy. I’ll be honest, I am happy that Michael has found happiness but I am jealous that while he is blessed, my husband and I are facing the end of our lives.
I no longer go outside by myself. Why? Fear? I don’t think I’ll get lost. I still know the layout of the streets.
On my list I keep writing to contact my old friend Jeff, who was my colleague and also a teacher at the school where I chaired the art and art history department. He had been sending me updates but stopped writing, I guess when I stopped answering him and responding by email. I write his name and underline it, so I won’t forget him. Jeff are you reading this? Do you wonder what will become of me? How I am managing?
I heard from my friend Dina, when I wrote about my husband’s diagnosis. She asked if there was anything she could do. Dina moved to Montana from New Jersey. What could you do Dina from Montana? You could send me a text or an email, and check in with me. You could tell me what it’s like living in Montana and how your daughter, Jaeli is faring. How is Todd? Is his brother in the nursing home okay?
I write the name Judith O’Connor, who I’ve never met in person, but befriended in a forum called Alzconnected. Judith, you used to send me links to virtual tours of museums, and jpegs of your paintings. I am still here and this drawing is the last artwork I made.
I write the name Yvonne S. who I’ve known for years through our synagogue. I wonder if you realize we are still here and know what is going on with us. Did rabbi Scheinberg talk to you about us? I asked him to. I was so sorry to hear about the death of your brother. I never wrote that and I am sorry about that.
I write the name Stuart Waldman, whose wife Maryanne died after living with Fronto Temperol Dementia for seven or eight years. Do you know that I still think about you?
I hear from my first best friend, Maxine, by text on the holidays. I remembered her birthday on April 7 and wrote to her. That is two days before my sons birthday on April 9.
I think about Harriet T., who I know from my synagogue, and is the wife of my former film editor, Harry. Harry used to visit me when i first became ill. Thank you Harriet for sending us some meals. Your Sarah got married and is now a mother too. Did you know Soren has four children now? Ellie is five and half and the twins Michael and Sara are two and half, and baby Ian is now nine months old.
I don’t want to be forgotten. I am afraid. Of course I am afraid. The two worst diseases have befallen us and I am unable to take care of our finances and I don’t know what will become of us. We take it one day at a time. Our daughter is the only one who is responsible for both of us now. My husband is my caregiver, and in a sense she is his caregiver, checking in on him daily by texting and calls and coming here on weekends, making sure we are eating, making sure he gets rest, making sure he walks and exercises and drinks enough water. Going to Memorial Sloan Kettering with him for chemo and oncology appointments.
Jeanne drops off meals once a week. Janet does this also but she fell and broke her toe and won’t be able to help for many weeks. We are grateful to Caarin my niece who visits and brings meals every few weeks and takes me out for walks.. Razel calls me on Facetime once a week. My friend Larry facetimes me on Tuesdays. I zoom chat with Jackie Pinkowitz on Wednesday nights.
I would never have imagined that we would be in this position. It shows that anything can happen. We’re not that old. Both sixty seven. Time is our enemy and time is also our friend.
They say Alzheimer’s is hardest for those who are aware of the losses. The frustration. The attempt to keep going. The fighting to stay present. The grit it takes to fight. To keep fighting amid the losses. To still be here.