Coronavirus, Alzheimer’s and me.

Suddenly Mad- portrait of TheresaPortrait of Theresa

So much has happened over the past month with the invasion of the Coronavirus pandemic. Numbers elude me, though I read the New York Times and listen to the news. Hundreds of thousands affected globally, now close to a half million. Almost twenty thousand have died.

New York City, where I was born, and the city I always considered home, even though I lived a stones throw away across the Hudson River, is now the epicenter of the virus in the U.S.  The streets of New York City, the most vibrant, lively, nuanced, most multicultural city in the world, is now an eerie largely deserted place.

I’ve been sick with Alzheimer’s for a long time now. I was forced to retire from teaching a year after the diagnosis in 2016, but I know that I was ill a year before that. There were signs. This disease is treacherous. Early on it manifested as recurrent depression and anxiety, but now after four plus years, I have many motor signs, a lot of difficulty walking any distance, and my steps could be described as short and shuffling. I no longer go outside on my own, always accompanied by my husband or my companion, Theresa.  My language, or ability to speak sounds odd, like I am a robotic child is one way to describe it. I can make myself understood, but my sentences are often mixed up, poorly arranged, and I spit them out quickly to communicate a need, a thought, before it disappears. Giving myself directions out loud is the norm. Repetition and stuttering, beyond my control. I wake up to this alien who starts speaking Alzheimers. Babbling. Incoherent words that make absolutely no sense. I often wake with the thought, “oh no, I’m still here”. Another day to battle this, with the realization that every day it gets harder.

Hoboken, my small city, a metro hub of Manhattan, where I’ve lived  for forty three years, is now on self isolation meaning shelter in place due to the Coronavirus pandemic. People are advised to stay home and self isolate as much as possible. This is much like what my life has been like for the last few years anyway, but now the few friends I have who would visit and sometimes walk with me in the park, are also in self isolation. My already small world has shrunk.

My husband who had been driving to Connecticut three days a week and working remotely the other two, is now working remotely five days a week. I marvel at how he manages to do everything, the food shopping, cooking, paying bills, working on his computer, and helping me get out of bed, keeping me focused on starting my day, managing my recurrent panic and anxiety, as I beseech him to stay in the room or nearby as I get dressed. He listens to me babble, encourages me to walk, get off the damn couch, and move my body. He’s acutely aware of how declined I have become. It’s a very sad situation.

We still go for walks, the same boring route to the viaduct and back, because this is what I am familiar with, and the streets are wide enough to accommodate both of us. 1.8 miles is as much as I can handle. I run out of steam very easily. Not just physically but cognitively. My brain can’t handle too much now, which is why writing is frustrating and slow. I know what I feel, I have a sense of what I want to say, but the words are stymied. I start to type and the word is misspelled. I correct it and then forget what I wanted to say.

When I go for walks now, either with my husband or Theresa, there are now more parents tending to their little children on the street. Hoboken is on shelter in place, but you can’t keep little kids in the house all day. The playgrounds are closed but the parks are open. I look ahead of me and see a little kid riding a bike or a scooter coming towards us and I ask Theresa or my husband, “what should we do?”. My reflexes are slow, and I wobble and veer to the right and left. “Let’s cross the street”, Theresa says as she takes my arm. Then she suggests we cross again, and I turn with her, step gingerly off the curb and hobble across the cobblestones. Stepping up to the sidewalk level again, a span of about five inches, feels like conquest.

My husband joked that he should carry a tape measure to show people what keeping six feet apart looks like. He’s vulnerable to this virus, not only because he’s over 65, but also because he had surgery on a lung twenty seven years ago for spontaneous pneumothorax, and unfortunately he smoked for many decades. We are both vulnerable. Yet thankfully he remains pretty strong and healthy. He’s always been a walker and a hiker, and he goes out many times a day, now keeping a safe distance away from others. Since he is now working remotely five days a week, he can’t pay that much attention to me, and so Theresa who started to work for us over a year ago as my companion and aide, is still on board. She has witnessed the ravages of Alzheimer’s as it continues to strip me of strength, my balance and my executive function. I was a strong woman before I succumbed to this illness, and though I have honestly not wanted to live anymore, my body and spirit and faith have pushed me to hold on. Theresa has helped me to manage a modicum of routine on the two afternoons she comes here. We go for walks in an effort to keep me mobile, we share stories about our families, she has taught me to crochet, she cleans my kitchen and bathrooms, she vacuums the carpets, helps me do the laundry and makes my bed. Doesn’t sound like much, but her presence has been an important part of my life.

I’ve learned from her.

Last July, her daughter Michelle died in her sleep at the age of 37. Michelle had led a difficult life. There had been drug addiction and bad relationships. Though she was a college graduate she had no clear cut goals. Over the years, Theresa tried to help her, brought her to therapists, but recently told me she didn’t think Michelle wanted to live, found it too hard.

How anyone gets over the death of a child is beyond me, but Theresa has managed to carry on. She began grief counseling and little by little, she resumed her life. Then her brother, Thomas, was diagnosed with pancreatic cancer at the age of 63. That was two months ago. After five weeks of chemotherapy, his body failed him, and he died over a week ago. Just like that. Gone.

Theresa’s presence has taught me that while life is complex, unbalanced and unfair and often tragic, love is the glue. She practices acceptance. Her faith is strong and bound by her determination to serve. She continues to put one foot in front of the other, relishes in the love of her grandchildren and accepts each of her four remaining children, three daughters and a son, for who they are.

Love. I feel this so strongly now when my husband comes into the bedroom in the morning asking me if I want to get up. Do I need any help? He smiles. He beams when I smile back at him and tell him how much I love him. How much I appreciate everything he is doing. We’ve been dealt the tragic blow, and yet love remains. In fact it has grown. Sure, I miss our passion, sleeping together, making love, and falling asleep spent in each others arms. The trips we use to take. Hiking with our kids in the Southwest. Visiting our late parents in Florida. Swimming in the ocean. Laughing. He always made me laugh. And still does sometimes. He is the one now who encourages me to be honest, to write about what the experience of having this disease is really like for me. The difficulty. The confusion. The sadness. Time slipping away. One day after another, each a little harder for me than the last. Yet I believe because we have known love we will not forget.

Suddenly Mad- Last program at Lincoln Center Moments

ISOLATION

New York is on lockdown. The programs I was still able to attend are now closed. No more trips to the Rubin Museum. No more excursions to Lincoln Center.

This is a photo from Lincoln Center Moments. It was the last time I went to New York with Jeanne. It was a great ensemble that played jazz renditions of Broadway tunes. So in Love. I Got Rhythm. My Favorite Things. Summertime.

Now my friend Jeanne, who is 78, and who would come every Wednesday to play Scrabble with me, and bring a meal, is no longer playing Scrabble with me or visiting. Last week she dropped off a meal and stood behind the glass door in my vestibule and waved to me. The people who would visit me and keep me conversant, which is important in fighting this disease, are no longer visiting. Razel introduced me to an African game called Mancalla. Then she got a bad cold and then Coronavirus invaded. I haven’t heard from her in weeks. Our daughter and her boyfriend left their Manhattan apartment and are staying at his parents home in Long Island. My daughter used to come here every few weeks, we’d have dinner together and she’d tell me about her world travels for the TV show she has been producing. Now the company that produces the show has “paused” her work as non essential until she is able to work with her team again, travel and shoot more film. Manhattan is a ghost town and she escaped. It wouldn’t have worked for her to come here. I hardly sleep and she wouldn’t have had the patience to deal with me. So it’s better this way, but I haven’t seen her in many weeks, and really have no idea when I’ll be able to see her again. I text her every day, and she texts back, so we’re in contact, but I miss her. I wouldn’t have wanted to usurp her life the way my late mother in law did when her daughter took care of her for the last five years of her life, only regaining herself back after her mom’s death. But I’m still a mom and even a text, an email shared of an essay my daughter wrote for the film festival she produces, is appreciated. At least I know she is safe and well. I can’t visit my son or see my delightful grand-babies. He sends photos of them. The last was a picture of Michael standing on a stool which he had carried over to the piano by himself. He and his wife are both working remotely. He is a lawyer for a famous racing car company in Italy. Will that company survive? I worry.  He says they still need a lawyer in the US to handle their business. But what is the business is no longer? They have three children, twin babies and a four year old and a mortgage. I haven’t seen them in many weeks. I wonder when I will ever get to see them again.

Isolation is hard for everyone during this plague but Isolation is bad for Alzheimer’s in a different way. I am in a state of decline. For me it was a victory when I was able to get dressed and ready and get into the car for the drive to my son’s house. I would sit with Ellie and read to her. I could lift the twins and hug them. I was watching them grow and develop. I got to see them go from crawling to walking to playing with each other. Will I get to hear them speak when they start to talk? Will they know who I am? Will I still be able to read to them, lift them and put my arms around them?

I still go for walks with my husband and with Theresa, but the shrinking of my life is profound. I am lonely and tired of this life. I wish for a healed world and happiness for my husband, for him to be free of this burden of care for me. I want him to love again, to experience life again without all this sadness. He deserves a better life and I pray for him, I pray for my son and his family. I pray for strength and happiness for my daughter.

As for me, I know that the future holds no promise. It is their future I am concerned with.

For me it’s always the present, hanging on to the present, until the present is no more.

As for me, I hope my passing is swift, because I do not want to become more of a burden. Forgive me my transgressions, those who feel I have hurt them. I did not know you mattered so much. Now I don’t matter very much. It hurts to be discarded because of a disease. It hurts to be facing the end and know it. I would have preferred it to be swift and poof, it’s over.

A stillness is coming. The gift of going in my sleep would be appreciated.

 

20 thoughts on “Coronavirus, Alzheimer’s and me.

  1. Minna,

    It is a very sad time in our world right now. I can only imagine how much harder it is for you.

    When you talk about being a burden to your husband it reminds me of my mother saying the same things to me. But I can assure you, I never felt she was a burden and I’m very sure your husband doesn’t feel you’re a burden either.

    You are right when you say LOVE is what keeps things going. Scripture says in 1 Corinthians: “And now these three remain; faith, hope and love. But the greatest of these is love.”

    Minna, there is nothing to forgive for stating your thoughts and wishes. You have been and still are strong in many ways, yet I understand you are tired of this dreadful disease. For the record, YOU matter to me! I feel I’ve gained a brilliant amazing friend. I always look forward to your posts and when I don’t hear anything for a long time I worry.

    Our city is doing a church-wide study on “What’s After Life”. If you can, I encourage you to watch the videos at http://www.whatsafterlife.com. I pray this will give you some peace and calm in the midst of your struggles.

    Love and Light to you my friend ~

    Like

    • Dear Linda,
      I just want you to know that your caring words are a virtual hug. You know what I’m feeling, you’ve been through it with your mother.
      We are doing shelter in place in our home, except to go for walks together in our neighborhood. Walking is my exercise now and my husband sees to it that we walk together for 2 miles almost every day. Theresa hasn’t been here for a few weeks due to the Coronavirus threat. We text daily. I text and Facetime with our daughter who is staying far out in Long Island, having escaped the Manhattan apartment she shares with her boyfriend. Our son calls and texts and send photos of Michael and Sara, the twin babies, and Ellie our 4 1/2 year old granddaughter. Haven’t seen them in many weeks. Just glad that all of them are managing during this strange and threatening time.
      Thank you for your warmth and friendship.
      Minna

      Liked by 1 person

  2. Hi Minna
    It was good to read your blog. Good to hear you and your husband are still having a laugh. Its something i try to do with Barbara every day too. she is doing good but declining.

    You are right that Love Remains. Its one thing that will never leave us. I hope my song can be an encouragement to you when you need it

    Keep Lookin Up Minna
    Jack

    Like

    • Hi Jack, It’s been a while since I wrote and posted. Thank you for your comment. We’re hunkered down with the treacherous threat of Coronavirus. Except for walks in the neighborhood with my husband, we aren’t getting out much. Sending my caring thoughts to you and Barbara across the sea.
      Minna

      Like

  3. Dear, brave Minna,
    So good to read your post, courageously tackling each day. Putting one foot in front of the other. I live in a small resort-like town with tourists descending from a hotspot of the virus. So we are staying home as much as possible. We told our children not to visit, even though they don’t live very far away. We avoid contact with neighbors. These are hard times. I am sorry you have to experience them as well.
    Love is what sustains us. We tell each other every day how much we love each other. It carries us through the day.
    I hope you can continue sharing your life with us. There are many people out in cyberspace who care deeply about you and your family. We all love you.
    Wishing you strength and joy along the way, Ruth

    Like

    • Dear Ruth,
      It’s getting harder to write and blog, but I am still here. We are in lockdown in Hoboken, mostly staying in, except for a 2 mile walk I take with Wayne almost every day. Our daughter is staying far out in Long Island with her boyfriend, having escaped their Manhattan apartment weeks ago. Our son and his wife and their very young children live about 45 minutes away, but we can’t see them. We have Facetimed with them and they send photos every day by text. It means a great deal that you think of me and write. Wishing you strength and love.
      Minna

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  4. Hi Minna,
    Unfortunately times are hard right now and especially harder for you. I am very happy to see that you still have the courage to write about everything that is going on in your life with your illness. It is very uplifting and positive to hear what you manage to tackle everyday. I look forward to reading more.
    Thank you and best wishes,
    Theresa Macaluso

    Like

  5. These past couple of weeks have been rough for you and I wish I was there to help you cope. I miss our walks and sharing stories with you. Despite everything you are going through, DO NOT GIVE UP. You’re life is worth living even though you may feel mentally and physically limited. Although; I’d never be able to tell from reading your stories! It’s eloquently written and evokes a lot of different emotions. I am now helping my father keep safe from this virus by staying with him and you share a lot of the same emotions. These times are causing a lot of depression amongst us all and I wish I knew how to make both of you feel better. All I know is, better days are coming. The loneliness you feel now will soon be over and everyone will have learned a very important lesson:
    Cherish the time you have with your loved ones, neighbors, and friends. We’ve been locked up with nothing but technology to keep us occupied during this pandemic. We all need to disconnect ourselves from the electronics and t.v. and interact and visit each other more.

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  6. Everything is getting harder. My Stephen is going through the steps too.
    I miss taking him to our groups. I hope we all can go back to the Rubin, where we met you and Wayne.
    You are still incredibly articulate.
    I enjoy your writing. Don’t stop

    Like

    • Dear Arlynn, I keep encouraging Wayne to get in touch with you. Perhaps you will take the initiative and email him? I think you can be supportive of each other in what is now an even more isolating time. The caregiver/spouses need real support and I know that is hard to come by with early onset Alz. Stephen and I were not old fogies when we were hit with this disease and that makes our experience and that of our spouses and loved ones so different.
      Judy who is one of the docents at Rubin wrote that they are thinking of having online presentations for the Mindfulness Connections program. Hope that comes to pass and that you and Stephen can attend on zoom if it does.
      -Minna

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  7. Minna, I support people with dementia here in UK and am moved by your story. The most frustrating thing for me has been that I am not allowed to give support as I used to running cognitive stimulation groups for my lovely clients. Technology is a great help but my clients say it does not replace physical presence. Hang in there and keep going. You are loved and you are important.

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    • Thank you Mary for your comment. Co-vid isolation has been hard for everyone. Frustrating for the caregivers and for the dementia patients. You are doing important work lending your support. Technology allows me to attend Dementia Alliance International zoom support groups, and Dementia Action Alliance zoom groups. Social support remains important to us.

      Like

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