Soren and Michael
Reading my words and seeing my drawings does not really tell you what my experience is. It only tells you that I can still draw and write. Writing is important to me. It’s a transformation of the waste that is turning my brain into a trash bin. It’s a way to allow my reality to be what it is, and reflect on it. It’s a way to get unstuck. It is here that I can be truthful about what this disease really does to people who have it, and what it is doing to me.
Facts: Alzheimer’s shortens a person’s life. Younger onset usually progresses fast. A 50 year person with Alzheimer’s loses 5 times as many years of life as a 75 year old with this disease. Some progress faster than others. Before it becomes fatal, it breaks down the body, makes a person weak, until they can’t physically move around by themselves. I have seen it. Michael who was a partner in his law firm, is 70 and has had Alz for 10 years. I’ve seen him in his wheelchair unable to move his arms or legs, unable to speak. He is cared for 24/7. Fed, bathed, diapered, transferred from the bed to the chair. I’ve seen a sixty year old woman shuffling, stooped, unable to speak. I sat with a woman who could not remember that she was an adjunct professor at a prestigious university and whose husband leads her around by the hand, or she would wander off. I have seen the wheelchair brigade at Lincoln Center after the program for people who have dementia. I glanced at the woman in the wheelchair holding a soiled stuffed animal, unable to speak, as her home health aide stood behind her texting on her phone.
I know each person who has Alzheimer’s is different. Many who are diagnosed do not appear to have a progressive neurodegenerative disease. They aren’t able to do math anymore or read an analog clock. They have lost some of their abilities. But they seem normal. They are either at the earliest stage or actually may not have the disease. I know a man who is 65 and was a plastic surgeon who was diagnosed 5 years ago. He certainly can’t perform surgery any longer, but I’ve watched him and see that in many ways he appears perfectly normal. There are the ones who die very fast, that I have read about, dying within two to five years. The Alzconnected forum (www.alconnected.org) is a place where caregivers and spouses share their stories. There are so many stories of younger onset, and how rapidly the disease progresses in many. Some are incontinent within a few years, can’t feed themselves, and talk to inanimate objects. Some are wanderers and some lose the ability to ambulate early.
I’ve heard this difference in levels of progression referred to as the snowflake theory by a man who is an Alzheimer’s Association advocate and was diagnosed in 2014 at the age of 54. That’s five years. He travels all over as an advocate to bring awareness to the disease. He must be progressing really slowly. I saw a photo of him on FB wearing a bright blue shirt and an immaculately tailored pink suit. I was not hallucinating. As wild as that sounds, a person with Alzheimer’s is not together enough to groom themselves with that kind of precision, unless they have a personal groomer/tailor. But what do I know? I have Alzheimer’s.
So, obviously I don’t believe in the snowflake theory. I understand that some progress more slowly but they progress. I think that many are misdiagnosed. They may have mild cognitive impairment and won’t ever progress. Some on the zoom chats are living mostly normal lives, and still functioning quite well, while others are losing the ability to speak or use a computer, or swallow or walk and are dropping like fleas within two to five years. It’s said the brain is so complex that there’s no way of knowing until there’s an autopsy.
Don’t fault me for being honest and questioning. I just know what I am experiencing, and what I see with my own eyes, and how devastating it has been for me and for my family. I do not want to minimize the symptoms some are experiencing who have been diagnosed with Alz, or Lewy bodies or FTD. But when I see some decline within a few years and become a totally different person, and I see others who hold their own and travel and give talks and presentations, I have to wonder if they have a neurodegenerative disease or if maybe they really have something else. Only time will tell.
There is a big can’t in my want. The desire is there to do more, to write, to fight this disease harder, but my drive, the fire, the passion, the energy, the directed behavior – is impaired. My mobility has decreased exponentially. I am finding it harder and harder to walk, especially outside. Rarely do I go out alone now. I don’t know how to dress for the weather. Always cold, I am still wearing long johns under my pants. Yesterday it was warm and Theresa and I went out. I was wearing my down winter coat and was many blocks from my home and sweating. My sleep is fragmented. I sleep an hour and wake, then three hours. My appetite for food is gone most of the day, but then I get ravenously hungry at 2 or 3 am and eat ice cream. I’ve gotten fat as a result. It’s embarrassing. I am certainly not as well as the people I meet on the dementia zoom chats, and I am not as declined as many I’ve seen in person who are incoherent and unreachable. I am a point where I need help with basic activities of daily living and have a part time companion who is supportive, goes for walks with me, has taught me to crochet, and helps to clean my house. My husband prepares my meals, and my friend Jeanne brings a meal once a week. I’ve accepted it. I do not have the energy to fight this disease much longer. It has sapped my life force. It was diagnosed as Alzheimer’s but now my liver enzymes are very high and it’s looking like my immune system is failing. Still, I can still smile and play Scrabble. I force myself to shower. I do my own laundry. I can use an iPhone, and text and I play Lumosity. Make no mistake about it, this is a tragic disease, and this decline in me has happened in less than 3 years since the diagnosis.
I worry for my daughter. This has impacted her greatly. She is beautiful but looks so sad. Daughters need their mothers in their twenties, but she has lost hers, even though I am still alive. My daughter still calls me mama, and it breaks my heart because I am hardly the mama I was. I tell her I love her in texts every day. I pray for her happiness every day. my illness has made her so sad. Some daughters become stronger when they lose their mothers to diseases like cancer. But losing one’s mother to Alzheimer’s is a slow deleterious process. It is torture for the person going through it, and it is torture for the family members to witness. I love that girl and mama can’t make it better.
Only being with me tells the story. The blog is only pictures and words.
Theresa knows. Jeanne has a good idea what this is like, because she spends time with me and has watched me struggle transferring food she has brought me from a container to a plate. She has been my friend and come to my home once a week for the better part of a year. She has seen the progression. My husband obviously knows. He is the one who witnesses me pushing myself to get out of bed, chew and swallow food, fear getting dressed because it’s so confusing and anxiety provoking to not remember how to choose appropriate clothes for the season, to have to dress from clothes on a hanger prepared the night before. He sees me reading my list, and checking off each thing I am able to do. He gets angry when I ask him what is next. He says to look at my list.
The very nature of living with this disease is terrifying enough when I am alone. Add to this people who were diagnosed with Alzheimer’s, who are functioning well for years and years, who travel, and laugh and socialize, and jump out of planes (!) and I feel guilty that I am not able to be like them, that I am struggling to get through each day. Why am I progressing faster? Snowflake theory?
There’s only one way to get off this train, and I am afraid. I cried in the arms of Krishna, my yoga teacher. I was too weak to do the asanas. I cried that I am afraid to die, that I am afraid to be alone, afraid to die alone. The tough ones will say, “but we all die alone”. The funny ones will quote Bugs Bunny (“No one gets out of this alive”). The ones of strong faith will assure themselves they are going to heaven. The highly educated caregivers without faith are practical. They caution to not allow the disease to take two people. They advise that their job is to survive, because the person with the disease will not.
I cried, after feeling so weak that I could barely walk home after the walk with Theresa. I cried because I’m getting weaker and I know what that means. In 2015 I was weight training and riding my bicycle 5-10 miles a day. I was teaching eight classes. I had rewritten a script that was Hollywood bound. Four years ago. Now it is hard to take a deep breath, food textures feel so strange in my mouth, it’s hard to gather the food inside my mouth and swallow.
A year ago my walking was not affected. My speech was more or less normal, although I would lose my train of thought while describing something, I could jar my memory and get back on track. Now there is babbling and incoherent words strung together. Words comes out of my mouth and I do not recognize the person who is speaking, although I know it’s me. I hear the voice of a little girl, I do not recognize. Would an exorcist help?
Enough of that torturous rant. Enough.
Now gratitude. My daughter always reminds me to have gratitude. I will heed the sage wisdom she has developed at the tender age of 28.
I have lived long and worked and played hard. My time is waning but I got to see three grandchildren born. The beautiful babies! I have seen my son marry and thrive. I am blessed to have a beautiful daughter, the jewel in the crown, who I adore. My husband tells me he loves me. He is under a great strain taking care of me and himself, yes, working, driving far back and forth to work, and managing everything. But he tells me he loves me. So good to hear that, even though I know how it pains him to see me like this.
So I cried in Krishna’s arms. Such a release. I have not been able to cry in over a year. I am grateful to have been able to cry. The only way to release the pain is to feel it.
After he left, I crocheted some more of the brown yarn that Theresa brings. I am grateful that I can do that. I am grateful that Theresa comes to see me. She held my arm as we walked. I needed her there, next to me. She teaches me to be grateful. To accept help. I am accepting the help given.
The brown scarf I am crocheting
I have gratitude for the Passover seder we attended at my son’s home. I have not been able to cook or prepare recipes for years. In order to have a seder, I told my daughter in law, I would prepare the chicken soup and the matzoh balls, the choroset, the roasted asparagus and the seder plate. It was all because of Theresa and her motivating me, believing in me, that i was able to do it. I sent her the recipes and she shopped for and brought the ingredients. I showed her how I used to make the soup and the matzoh balls. She assisted me, but I did most of the cooking She helped take out the pot and helped me set up the small Cuisinart, to grind the walnuts and shred the apples for the chorset, which was my specialty. She made the brisket from the recipe I sent her, and it was delicious. She roasted the lamb shank for the Seder plate. I assembled it – the egg, the bitter herbs, the parsley, the choroset, the roasted lamb shank, the matzoh, the lettuce (vegetable). Here we were in my kitchen, Theresa, the good Catholic girl, learning about making the food for a Seder, from me. There I was wearing my adult bib in place of an apron, and we prepared these foods together – me teaching her about the tradition, and it’s significance- remembering how this holiday was so sweet and special for me growing up in the Bronx — how it signaled a time of joy and togetherness. I wanted to feel some of that again. When we arrived on Saturday evening, my “muchtanesta” (Yiddish for my daughter-in-law’s mother) had already set the long table. Elina’s brother and girlfriend were there, as was Elina’s step father, who made a matzoh babka and a turkey. Elina distributed the haggadah’s (the text recited at the Seder, that includes a narrative of the Exodus). Ellie, my granddaughter, was dancing around excitedly. The twin babies slept soundly. I ended up leading the Seder. My timid withdrawn self was shelved that night, as I taught Elina’s brother and his girlfriend the songs Dayenu and Chad Gadya.
These are the lyrics to Chad Gadya. I used to love singing this along with my father and mother and sister. The kid (the goat) symbolizes the people of Israel, the innocent little goat devoured successively by one power after another. The ultimate hope is that one day the Eternal one, would destroy the Angel of death, and the human propensity for conquest and violence. Israel would live in peace and harmony with her neighbors, and all would be right with the world.
One kid, one kid, that father bought for two Zuzim. One kid, One kid.
And the cat came and ate the kid that father bought for two Zuzim. One kid, one kid.
And the dog came and bit the cat that ate the goat, that father bought for tow Zuzim. One kid, one kid.
And the stick came and hit the dog, that bit the cat, that ate the kid, that father bought for two Zuzim. One kid. One kid.
And a fire came and burned the stick, that beat the dog, that bit the cat that father bought for two Zuzim. One kid, one kid.
And the water came and put out the fire, that burned the stick, that beat the dog, that bit the cat, that father bought for tow Zuzim. One kid. One kid.
And an ox came and drank the water that put out the fire, that burned the stick, that beat the dog that bit the cat that ate the kid, that father bought for two Zuzim. One kid, one kid.
And the butcher came and slaughtered the ox, that drank the water, that put out the fire, that burned the stick, that beat the dog, that bit the cat, that father bought for two Zuzim. One kid, one kid.
Then the angel of death came and slaughtered the butcher, who slaughtered the ox, that drank the water, that put out the fire, that burned the stick, that beat the dog, that father bought for two Zuzim. One kid. One kid.
Then the Holy One, Blessed is he, came and slaughtered the angel of death, who slaughtered the butcher, who slaughtered the ox, that drank the water, that quenched the fire, that burnt the stick, that beat the dog, that bit the cat, that ate the kid, that father bought for Zuzim. One kid. One kid.
Musical Shabbat at USH
On the last day of Passover a gunman opened fire at a synagogue in Poway, California, near San Diego, killing a 60 year old woman, Lori Gilbert Kaye, and wounding three others, including the rabbi. The rabbi shepherded the remaining congregants to safety, and he waited for the authorities to arrive. Despite his wound, he got up and spoke to those who remained inside. “Just giving everyone the courage to know that it was just 70 years ago during the Holocaust we were gunned down like this, and I want to let my fellow Americans know that we’re not going to let this happen.”
I think about my late parents and how their families were murdered in Poland. How they rebuilt their lives and loved living in America. My mother died two weeks before 9/11, in 2001. She would have been devastated to see this violence happening in our country and throughout the world. The religious violence, the divisive racism. But history repeats itself, and the hatred we see all over cuts across all religions and races. The Christchurch massacre in New Zealand in March. The bombings in Sri Lanka on Easter Sunday. Last October the shooting in the Tree of Life synagogue in Pittsburgh. Last week the Poway synagogue outside San Diego. The world has not learned a lesson. As long as the economy keeps afloat and people can swipe their debit and credit cards, skyscrapers continue to built and business is booming. Mo money, mo money, mo money. The news is just a flash on the buzz feed.
Walking with Jeanne