I used to say when Alzheimer’s disease started to affect me severely, back in late 2016, “It is as if I can see, but can’t see”. I would be standing at the sink, trying to wash a dish, and notice that I was having to concentrate very hard on doing it. No matter how much I concentrated the experience of coordinating my sight, thinking and doing, were out of synch. It became evident then that this is not just about memory.
I see it in my eyes in the photographs I take of myself and text and send my daughter, to show her I have gotten dressed and groomed, and to say hello. I see it when I look in the mirror.
Now my speaking is becoming affected. Aphasia. This is new, or I’ve just noticed it in the past few weeks. I hear myself, talking to my husband and friends who visit, the words are halting, as I struggle to complete the thought before it’s gone. I hear my own voice and the sound is twanged. I hear myself speak and it sounds like a child. A stammering child. I know I am 64. I know that this is spoken of as a disease of regressing. I’m an old child.
I wrote “why me”? on the shirt, then erased it. When I colored the shirt purple for the colors of the Alzheimer’s Association branding (it looks maroon red here), the indentation from my sharp pencil were inscribed into the paper. The incised lines are visible still. My words were not erased. WHY ME?
Everyone is different of course. When Alzheimer’s hits and it is really Alzheimer’s, the personality changes. Some decline and become sedentary and can’t move much at all. Others become wanderers and agitated if they can’t move. It takes a village to care for an Alzheimer’s person. No one can do it alone, and when caregivers try to, they fray and collapse.
I was an active and engaged professional. I had friends. I was creative, inspired and enthusiastic. I was funny. I worked hard and played hard. I loved my family. loved my kids and loved being with them. Then they grew up and suddenly I fell off the cliff.
My husband/ caregiver (I hate that he refers to himself in that way now, having withdrawn any semblance of a marital relationship) feels imprisoned taking care of me. I reached out to my community, swallowing my pride. I told people I need companionship and can’t prepare meals. Now people visit. They bring food. They spend a little time talking. Some bring their little children. One says I am very companionable. She stays and talks. We’ve become friends. Today she brought me vegan tacos, muffins she baked and soups she made. How kind she is. A friend at the end.
The past week backwards- a week of hellos and goodbyes
Wednesday, April 25, 2018 – I no longer remember each day but I can check on where I was and what I was doing because of my iPhone calendar. It’s my diary in reverse. A way to jolt my memory. Today I had a Zoom chat with my dementia mentor Laurie. She was in a car with her cousin enroute to a dementia training workshop. Bless her, she motivates me and I was up and dressed. Ready to start the day. Then my rabbi came and we talked. He was able to hear the difference in my speaking. So kind of him to visit, Jeanne came and brought lunch. Following her was Sherine, the home health aide and housekeeper. Today was her last day. I avoided speaking with her, as much as possible. I was too internally distraught about her leaving. I thought it would be better not to talk with her much. She went about cleaning the house, and I talked with Jeanne who stayed for the afternoon. Sherine understood me so well when she began. She knew that there were things I could still do and helped me with tasks in the house. She knew where everything goes, and knew what to do. She says she is going to stay home with her baby. I think it’s more about the hours and the money. It’s not worth it to her to work one afternoon a week with me. You can’t buy a friend. I said thank you and goodbye.
Tuesday, April 24, 20 – Rafi who is an intern at the synagogue, visited and said goodbye. This genial fellow had visited every two weeks for three months, and now he’s moving on. Sayonara. I have said goodbye to so many, over the course of my life. This is different. Now when people go it means I will never see them again. Emily came with her baby Hazel. She brought lunch. I read her a few pages of Pat the Bunny . The same book I read to my own kids when they were babies. It goes like this now. People coming and going, and me standing still. I had a Zoom chat with my lovely friend Jackie, who encouraged me to write, when I told her I was having trouble writing. “Just let it flow” she said. This is what flowing looks like in my world. The calendar rules, and the images are right side up and upside down.
Monday, April 23, 2018 – Dementia Mentors Cafe online video Zoom chat. I brought up the very upsetting 60 minutes interview of Carol and Mike Daly that I saw on Sunday. It’s not what people wanted to talk about. So I will talk about it here. I was about to write on Sunday night. All set to let it fly. Then I went on the Alzconnected spouse forum and saw the link to the segment For better or worse: Following a couple from diagnosis to the late stages of Alzheimer’s. In 12 minutes, 55 seconds, we see Carol’s decline from an average 65 year old lady in the early stages of Alzheimer’s, to a 75 year old woman who Mike describes as a vegetable. Seeing Carol in late stage was terrifying, even though I have seen it in person in Michael, the man in the wheelchair at The Rubin Museum. I never knew Michael when he was well or in the early stages. I have only heard that a year and a half ago he was walking and talking and in a chorus. It was seeing the comparison of Carol year by year, condensed to 12 minutes and 55 seconds that was shocking. Knowing that in only six months I have declined so much, and in 2 and 1/2 years, a startling mind numbing amount of decline. In the beginning of their journey, we see Carol and she is 65 and she is conversational and laughing about the meatloaf that she can no longer make. She can no longer read or watch movies but reacts to the mention of the late actor, Clark Gable, cooing that he was so handsome. Three years later she doesn’t know who Clark Gable is. A year after that she doesn’t know her husband’s name. He applies makeup to her face. He dresses and feeds her. He dotes on her. In 2017 she sits silently alone, no longer able to answer questions. But she does react to music when she hears Little Peggy March singing I Will Follow Him and rhythmically vocalizes sounds along with the song. It’s been found that music helps stir memory even in people with late stage. Yet a year later, this year, 2018, she’s shown, her head slumped over, her back rounded, in a chair fully unresponsive and no longer reacts to music or anything. Yet when Mike puts a morsel of food in her mouth, her procedural memory makes her chew and swallow. She has 24/7 care by aides, along with her husband. We see her being dragged from the bed to the bathroom to be washed by her aide. Her husband is asked if he still loves her. He says he loves the Carol who was Carol but this is not Carol. We learn that ten days later she is placed in a nursing home, after ten years of caregiving which has made Mike feel suicidal. He is done, saves himself. Carol is gone but still has a strong pulse. What a horrible disease this is. Treacherous.
Younger onset Alzheimer’s started to unravel Suzy Bishop who was 50 when she was diagnosed. She had been a successful Hollywood movie producer, won an Emmy, and was an adoring wife who raised two sons, one of whom plays baseball for the Seattle Mariners, and created 4MOM, an Alzheimer’s charity in honor of his mom. While Suzie has progressed and has a home health aide 4 days a week now, she is not where Carol is in the disease, which is the intractable end. I didn’t feel as hopeless about her. Her personality is changed and she appears confused as she tries to function in her kitchen, but the operative word is she trying. I found the email for her and her husband in California, and reached out. I sent my blog and asked her husband to read it to her if she can’t read anymore. I never received a response.
Sunday, April 22, 2018 – My husband screamed, “I am leaving, I can’t take it anymore”. Every time I step out the door, I want to kill myself”. What happened? I needed his help getting out of my bed. In order to stand up and put on my robe, and go down the stairs, I needed him. I needed some kindness and I needed to feel loved by him. I am being cared for, but there is no love. He slammed the door, because I asked him to sit on the bed and talk to me. Be with me. He stood on the other side of the room and exploded. “I should have divorced you years ago”. It is cruel when he threatens several times a week to leave, knowing that there is no one else to care for me. Our daughter texts me, “so go into assisted living”. He has screamed, “Go kill yourself”. I wish I had the guts to. He is sadistic. Has physically thrown me out of rooms, pushed me. Eventually his anger passed as I pushed myself up and started the day. It was already afternoon. I went to my list, the one I write every night before I go to bed, with reminders for everything I need to do the next day. I managed to get dressed. We went for a walk. He followed from behind. The weather was warm and sunny, with a little chill in the air. I led the way. I remembered that Little City Books was a destination I used to go to. I remembered it was on First Street, but couldn’t remember the cross street. It came back to me. Bloomfield Street. I found it and we went inside. I used to love bookstores, and would become immersed, reading in the aisles. Now I only eyed the covers, illustrations luring the reader to open and read. I saw Maira Kalman’s, The Principles of Uncertainty. She’s an illustrator I loved and would read her books to my children. She illustrates and writes books for both children and adults. It was the last book I really loved before the Alzheimer’s overwhelmed me.
I was happy to be outside and we headed to the waterfront. I took photos and sent then to some of my dementia buddies on FB messenger. We ended up walking 3 miles along the waterfront and up Sinatra Drive towards our home.
Saturday, April 21, 2018 – Got up early and went to have blood drawn at the lab. The doctor who prescribes thyroid needed to see my labs. I had been there before but now was very conscious of how I have changed since the last time, over a year ago. I said little, wanting to get it over with. We left and went out on the street and headed to our car, which was parked nearby. When we got to it I didn’t realize that I was standing in front of the passenger door and not opening the door. My husband asked “what are you doing?” I have to call this brain frieze. I didn’t know to open the car door and get inside until he said that. I have no idea how long I would stood there. Maybe another a moment. I just went blank.
Friday, April 20, 2018 – Mindful Connections at The Rubin museum was the highlight of the week. Keith arrived at 11:30am and I was raring to go. Glad that the weather was good, but still cold enough to wear my down coat (having trouble with making the transition to wearing a lighter coat). I saw the usual suspects, and the familiarity was a comfort. Michael was there with his aide, Georgia. He was sleeping, but it was nice to see him anyway and I got to speak with Georgia. Maureen was there, and I asked her questions about her life before. She grumbled about her home health aide, when I asked her if she took care of her every day. Scott was there and I found out that he walks through Central Park alone, and goes to restaurants and has a girlfriend, and doesn’t get lost. He said he takes the subway and walks around his neighborhood. Yet speaking with him it is evident that something is off. If I were to graph myself in terms of progression, I’m sort of in between Scott and Maureen. They are my age so it’s younger onset. I know so much about my past, and can be so descriptive. She is not able to describe much because she can’t find the words, forgets the words for the type of work she did, and doesn’t know the name of the borough she lives in. Scott is functioning pretty normally, but has word finding issues. He was accompanied by the companion who I met before, who is much more of a companion than a home health aide. Ira and his wife Sandy who has Alz were there. The well off older gentleman whose name I can’t remember was with a very well dressed loquacious woman who may be his wife, and what appeared to be his daughter. He gestured warmly putting his head on her shoulder, and I saw that this made her look uncomfortable. I observe. It’s what I do now. Mindful Connections is a great place to observe, both the people with dementia and the art.
The docents focused on and talked about Phadmasambava, who is also known as Guru Rinpoche. He was an Indian tantric master who played a major role in bringing Vajrayana Buddhism to Tibet in the eighth century. In this sculpture of him, he wears a lotus hat symbolic of his miraculous lotus birth, adorned with symbols of the sun and moon, tipped with a vultures feather, kings robe, monk’s shawl and jeweled ornaments.
I enjoy seeing looking at the art and talking about it, but I’m not the art connoisseur I used to be. I’m there to observe and interact with the people as much as look and talk about the art. The art is what brings us together.
Thursday, April 19, 2018- I didn’t make it to The Alzheimer’s Association support group. When the alarm rang I couldn’t get up. I felt weak and sick, My brain felt mashed up. I couldn’t do it. I called the social worker who runs the group and emailed her that I didn’t feel well. She wrote back “no worries”. I felt bad about it. That I couldn’t get up and go.
I have the commonest of dementia’s, Alzheimer’s. I used to think I was brilliant. My eyes sparkled and had life in them. Now I can’t think straight, and my eyes look deadened. It shows in my eyes. I tried to capture this in the drawing. My friend and part time aide, Keith, said the drawing looks much older than me. I try to draw what I feel.
How to push when the simplest of things are so hard to do now? Each sentence needs to be corrected now. Words have to be pushed out. My body lumbers. Each thought zigzags between what is now, what is yesterday, what is last week, what is tomorrow.