Things are a daze of forgetfulness unless I look back at my iPhone calendar. Then I remember the events and emotions connected to the previous days. The people I saw, places I went, and the days that I didn’t go anywhere, and how that made me feel. The triumphs of being able to simply go somewhere outside of my home, be dressed neatly and be able to participate instead of just sitting on my couch (a term my friend Margery who also has Alz calls couch lock). The small pleasures of being able to be a part of life. To be present.
I know the last post was June 29. Over two weeks ago. There seems to be a lot of progression in a matter of weeks. More confusion and forgetfulness. The crazy systems I’ve devised to keep functioning are just that – crazy. Nothing about this makes any sense to me, all I know is that I have Alzheimer’s and I keep pushing myself through each day. My brain feels at turns delirious and then slows down so that I can’t think at all. My body is weaker. Walking is getting harder. I am not able to remember things in any kind of order, everything is becoming a kind of blur. The iPhone calendar has been and remains a handy reference for remembering as well as a tool for planning. It tells me the date and time, and lets me set alarms so I can be ready to show up for things. I function because of the support I get, mainly from my husband. Meals are prepared for me, and I eat. I am told it’s time to go and I push myself to stand up and walk. I’m aware all the time of having this disease and how my focus and physicality is altered. I’m conscious that I’m walking through life in a daze, and it’s very hard to be purposeful when my brain is telling me not to be.
Creativity has been challenging. I have found myself sitting in front of the blank page in my sketchbook and not been able to begin drawing, and walk away. I did do a drawing of my husband last week. Before I could keep going and going with a drawing until it developed into something I was satisfied with. Something that surprised me and looked beautiful to me. This time I was only able to stick with it for a short time. He is much handsomer than this. Wish I could capture that. I look at the photographs I take of him and see how this has taken a toll on him. Sadness in his eyes, weariness, and pain in his body. This is an impossible situation. We were planning to continue working for several more years and then retire and enjoy our “golden years”. This disease has robbed us both of that.
My husband tries to find solutions. I have a yoga teacher that he hired. I used to do yoga and attended classes and practiced it alone in the earlier stages of this disease. Now I can’t seem to do it without instruction. Krishna, my teacher, does yoga with a man who lives a few miles away, who is in his seventies and has Alzheimer’s. My husband had put an add on Craig’s List for a home health aide/ companion and Krishna responded suggesting he consider hiring him to teach me yoga. I was very strong before this disease stole my strength, cognition and initiative. I was weight training with a trainer and doing yoga classes once a week. The body remembers and I am able to do many of the asanas, but I need instruction because I have trouble getting started. Once I’m on the mat I can do it. Here are pictures of Krishna assuming yoga poses. He says I am strong, because I can do the poses. I can balance on one leg and hold a tree pose. Unlike his other client who has Alzheimer’s, I do know my right from left, no confusion about that, and can do the balance and Warrior 1,2 and 3 poses, and many of the postures he demonstrates. Doing them alone though and having the discipline to get started alone is another story.
Before Alzheimer’s changed everything, Sundays used to be a day I would be with my husband before both of us readied ourselves for the work week ahead. Now that I’m home so much, Sundays are a day he needs to rest, and I don’t know what to do with myself. I can go out for a walk, but without a destination it doesn’t make sense to me to go walking aimlessly. Beyond a certain distance I become disoriented. I can go to the park which is 2 blocks from my house. I do that a lot. My husband was taking me for walks frequently, but since his back has been bad, that has decreased. So I end up sitting at home playing cognitive games on my iPhone over and over. I get bored and sad. People with Alzheimer’s crave company and companionship. My husband tends to withdraw from me and that makes me sad. I know how boring and withdrawn I have become and he doesn’t really know how to relate to this person who is inhabiting the body of the person who he knew as his wife.
To conquer boredom I always say yes to going on a trip anywhere. My friends Jeanne and Bob offered to take me to Tinton Falls, where they go to see their osteopath (I asked to see him) and have lunch at a restaurant called Mumford’s. I was nervous and anxious about going with them. It takes me so long to get ready in the morning, and that Monday, July 2, I would have to be up by 7am to be ready by 9:15. I usually can’t fall asleep until after 2 am and need hours to get ready. But I was ready on time. Jeanne later told me my expression when I stepped out the door was a look of sheer panic. Once we were driving I relaxed, and saw that we were heading in the direction of Newark airport.
Driving to Tinton Falls took us through roads with trees and greenery. I’ve always lived in an urban setting although my city is quaint and dotted with trees, it is definitely a city. It felt good getting away from the buildings and cement.
We used to go to the beach in the summer, and would drive to upstate New York to go hiking and camping. Summer’s were times for enjoying the outdoors. Memories of years we would drive down to the New Jersey shore come back to me now. The brisk air and open sky crossing the bridge that connects the little islands off the main shore. Towns with beaches and big Victorian houses near the beach. The ferris wheel and the amusement parks we’d go to with my kids. We rented a little house down the shore a few blocks from the beach. My husband bought two crabs for my daughter. Those crabs lived for years in a cage in our bedroom. Memories of hiking on the Appalachian trail, with backpacks filled with food, sleeping bags attached and sleeping in a tent. Renting a house near Woodstock, New York. Our son, just a baby then. The vast lawn in front of the house. Fireflies at night. Dinners with the group of friends we rented the house with. Parties and beer, sitting on the patio in rocking chairs. The years, the summers, a blur, punctuated by sporadic memories, images.
I’d imagined it would take longer getting to Tinton Falls. Bob parked the car and we were there at the osteopath’s building, poof- and we were too early. The doctor wasn’t there yet and the office was locked, so we three went out to sit in the garden.
It was hot, very hot, and Jeanne couldn’t stay outside. I sat with Bob at a table and we talked about Alexandria Ocasio-Cortez who had just won a Congressional seat in New York’s 14th district, defeating the incumbent, Joe Crowley. This was safe talk knowing Bob is a long time Democrat (as am I) and retired lawyer. He is a wonderful guy who has told me about his life story. Born into a family of lawyers and judges, the law was the family business.
The doctor arrived and I walked around the waiting room, while Jeanne went into her appointment and Bob read a book. I spotted this sculpture and snapped a photo. It’s a bronze cast of an ape holding a human scull, sitting on a stack of books. The name DARWIN is inscribed on one of the books. This got me thinking about Darwin and his theories about evolution.
Summary of Darwin’s Theory of Evolution
Clearly I was fit enough to reproduce and survive to nurture my children and family. My son is now 35 and is the father of a little girl who is almost 3 and his wife is pregnant with twins. My daughter is 27, and is not yet married and has no children…yet. I hope she does get married and has a family someday. I think it will provide an anchor for her. I know that my becoming sick with Alzheimer’s has been devastating for her. I want her to have happiness and fulfillment.
I am remembering a woman I knew when I owned an art gallery in the late 1980’s. Her name was Angela and she was in her late twenties and worked for Prudential’s art program. She would come to my gallery and bought artworks for their collection. Angela was pregnant and I was later informed that she died after giving birth to her baby. A tragedy. Women still die in childbirth. Angela seemed so strong and healthy. I was shocked.
I was a survivor and adapted to so many new circumstances until I could no longer adapt. Alzheimer’s even in the earlier stages makes it hard to adapt. It’s a disease that is the antithesis of adaptation.
I wondered if there was any relationship between Darwin and Alzheimer’s and found this- The idea that neurodegenerative dementia may have something to do with evolution is not new. More than 20 years ago, Stanley Rapoport of the National Institutes of Health suggested that Alzheimer’s disease is a human phylogenetic disease, and that diseases such as AD and Down syndrome involve pathological changes in the specific genes, whatever they may be, responsible for the rapid evolution of the human brain (Med. Hypoth. 1989 29:147).
My turn to go into the osteopath’s office, and I told him my story of being overwhelmed by Alzheimer’s, my diagnosis and now finding myself progressing rapidly in the disease. He had me lay down on his osteopathic bed and put his hands under my back and spine and under my head. He suggested I have my dental implants removed. I told him this was out of the question. He said my nervous system is overwhelmed. I asked him if he’d ever met anyone who had this disease. He said yes, a friend of his parents, and that this friend was traveling with his parents in Florida. I knew that this wasn’t likely someone who really has Alzheimer’s disease, at least not insofar as I understand and experience the disease. Maybe the person has mild cognitive impairment, but when it’s Alzheimer’s and there is real progression, regular vacations and life as it was are no longer possible. I wasn’t looking for any magic bullet in visiting this doctor. I know there is no cure. I went because I was curious and wanted to take this trip with Jeanne and Bob. I was curious about what the doctor would say when he examined me. He wrote a note with directions for a breathing exercise- 1:2 ratio – inhalation – exhalation. Start with 2 seconds in, 4 seconds out, then 3 in and 6 out. Oh, if it were only that easy. It was once. It used to be easy to do things like yoga breathing to calm my nervous system. I used to do alternate nostril breathing all the time. I knew how to rebalance myself before I got this disease.
Next stop was our lunch at Mumford’s, a restaurant that Jeanne raves about. We drove down the road and got out and walked past a welcoming hellstrip of day lilies. I followed Jeanne and Bob and we arrived at Mumford’s, a rustic old style restaurant. Inside the restaurant was crowded and the waitress tried to seat us at bar height tables, which would not have worked for me. I went on a hunt for a regular table with chairs and found one and asked if we could sit there. It was a little further away from the other tables behind a long display case filled with cakes, cookies and muffins. I rarely eat in restaurants now. At home I sit and eat at the long kitchen island, and I wear an adult bib my husband bought for me. I know now that eating in public is not easy for me. Neither is choosing something from the menu. Eating meals in general is rather complex now. Figuring out which utensils to use, cutting food, chewing, swallowing. Each step in the process requires concentration. I’ve seen how I’ve tried to cut food with the dull side of a knife. I remember panicking when I was confused about how to eat a half baked squash with a spoon and switch to eating vegetables and chicken which were on the same plate with a knife and fork. The salad I ordered had things in it I could cut with a knife and I put small pieces in my mouth and chewed, swallowed and sipped water to avoid choking. Using utensils at the table that were different from the ones at home took a few seconds of getting used to. A simple pleasure like going to a restaurant with friends for lunch and the act of eating is not something anyone thinks about. For me every step of everything I do requires thinking and processing. This I suppose is why I go so slowly and deliberately with every action I take.
My husband hired another home health aide, Luiza, who is Armenian. She came the following day, Tuesday. My husband had a vacation day and was home too. I had met her the previous week, and understood she knows nothing about Alzheimer’s. My husband instructed her to clean our house, and showed her where the supplies are. When Krishna, the yoga teacher arrived, she watched us do yoga. I was used to Krishna coming and knew to retrieve the visitor parking permit when he left. I was standing at the front door and turned around and Luiza had followed me out. I was alarmed that she was hovering over me. I’m not a wanderer and don’t need to be hovered over. I got upset. After he left, Luiza asked me to play Scrabble with her (she calls it Swabble). I played with her and saw that she doesn’t know many English words. Frustration.
That same day my friend Ruth returned. She’d been gone for two weeks. When she left there was no way of knowing when she’d return. I thought she would move back to Atlanta. I was forlorn and having a hard time being alone so much. Then my husband hired a home health aide/companion, and Ruth was back. Before she left to visit her daughter in Atlanta (her daughter who she had been estranged from and was in bad shape called her and asked her to come), I had been spending nearly everyday with Ruth since we met several months ago. She’d come here and I would walk the half mile to her apartment. I didn’t want Luiza here, now that Ruth was back. My husband had been leaving me meals, and Ruth would remind me to eat. We would go for walks. We would talk. I know that Ruth is not a home health aide. She’s a friend. What I wanted was to be with a friend. Ruth understands the gravity of this disease and has seen me change in the 3 months she’s known me.
Luiza is hired to visit me and clean and cook. So far she is adept at cleaning and helps both Wayne and I by doing that. But when it comes to cooking, Wayne left her a list to make some chicken and told her not to fry it. I saw that she had cut it into strips and was frying it, and told me that some oil is good for me. She made rice with some weird stuff mixed in that was not discernible and it was terrible and I couldn’t eat it and had to throw most of it in the toilet and flush it. So what to do? She can’t cook and I can’t eat what she makes. It’s a problem. She doesn’t have any ideas about what to do with me. I emailed her The Alzheimer’s Resources Directory of New York http://www.adrcnyc.org/print-directory.pdf, in the hopes that maybe she would read it and arrange some things for us to do together. She drives and has a car. Wishful thinking.
I know that this disease is taking me down. Just getting dressed and going anywhere alone is problematic. Sure I can get to Ruth’s. It’s a good thing that I have a friend I can visit. But the reality is that my body is getting weaker and I sit a lot and the confusion and hodgepodge of symptoms is progressing. I can’t expect Luiza to be my savior, suddenly swoop in and motivate me and make sure I eat well when she can’t even cook. The disease is taking me down and there is nothing that anyone can do about it. Luiza sees me dressed. She doesn’t understand that I have to put my clothes on a hanger every night and bring it downstairs along with my shoes to dress the next day. I would feel so embarrassed if she had to dress me. I push and push to appear normal and dressed by the time she arrives, but I am not. I have lost many of my instrumental activities of daily living
- Managing money (i.e., writing checks, handling cash, keeping a budget) (can write a check and handle small amounts of cash, but can’t keep a budget and generally can’t manage money)
- Managing medications(i.e., taking the appropriate dose of medication at the right time) (so far I can manage my medications by checking off on my list after I’ve taken them).
- Cooking (i.e., preparing meals or snacks, microwave/stove usage) (I can’t prepare meals, save for still being able to make scrambled eggs and toast. I can us the microwave but not the oven)
- Housekeeping (i.e., performing light and heavy chores such as dusting or mowing the lawn) (ability to do housework is gone, save for being able to do a few dishes at a time)
- Using appliances (i.e., using the telephone, television, or vacuum appropriately) (I can use my mobile phone, and can still work the remote control on my television. Vacuuming skill and use of the Dyson vacuum cleaner is confusing).
- Shopping (i.e., purchasing, discerning between items) (Not able to go shopping alone. Can discern between items).
- Extracurriculars (i.e., maintaining a hobby or some leisure activities) (I can still draw, and do yoga postures under direction)
So here are some things that I see I can still do-
I am still able to visit my son and his wife and Sat July 7 was my daughter-in-law’s birthday. Her mom and step father threw her a party and I handled it well. I was sociable and eating was no problem. I was nervous about going, but it went okay. People who don’t know me well would never have guessed I have Alzheimer’s or any impairments.
I am still able to go to my therapists office which is blocks from my house. I am still able to walk to Ruth’s.
I am still able to take the bus to New York with my husband, but walking through crowds to go to to the Alzheimer’s Association building requires a lot of support. My husband had to literally hold my arm and direct me and cross the street with me. I felt weak and walking that distance was hard.
I am still able to eat by myself. Use of utensils is intact. I am still able to dress and shower myself.
How long I will be able to do these things and keep pushing I do not know.
I write a list of the things I want to accomplish the next day. Most days little of it get done. Today my husband ordered some new clothes, shoes and bras for me online. I was able to direct the purchases. I miss the days when I could take care of myself. I miss me. The me that I was.
Tomorrow is the exhibit of photographs that I made along with the other members of the support group at The Alzheimer’s Association. I convinced my husband to take me. It’s in New York and a few blocks from the building where where the Alzheimer’s Association is located. I’ve invited Ruth to join us. I have to get to bed now. Before I go to bed i have to write my list and set up my clothes for tomorrow. Such simple things are daunting. I wish they weren’t.