Should I call this despair?

Suddenly Mad - Desperation (portrait of Mimi)Portrait of Mimi (October 2019)

I’ve been despairing and then having no choice, accepting whatever happens and trying to go with the flow when I can. I can’t plan anymore beyond the next day. Yes, I’m watching myself disappear while still tracking the changes. I don’t fit in anywhere anymore. Being in the middle stages of whatever kind of dementia this is- Alzheimer’s, or Alzheimer’s and Vascular dementia. Maybe it will always be an unsolved mystery. But the despair I feel from not relating to what others are experiencing, has gotten me booted out from a form of support that I counted on and was part of my routine. I won’t say much more about this. I’m smart enough to know that this unraveling of my life is part of this disease. I am not at fault. I know what I know. I know that people with their varying early dementias, or mild cognitive impairment- those who can drive, those who travel independently, prepare meals and go to the market, pay their bills and oversee their finances…and do the things that normal people do…are not where I am in this disease. There is stigma and lack of empathy within the dementia community as well as outside of it. It doesn’t matter that my clarion call is truthful. Case closed.

So here I am again, after an absence of almost two months. I can still type with two fingers. I recognize when I’ve made a typo. I can still draw as evidenced by the portrait of my daughter. I can still use my iPhone. I can still still text. That’s become my mainstay and ultimately one the most important things I still retain. I’ve been texting with a lovely woman, Julie, in Alabama, who probably has a form of Frontotemporal dementia, who wrote me she can no longer speak, yet her writing is eloquent and clear, and she sends me videos and photographs, and she describes her life to me. This has become a friendship as we tell each other what our daily experiences are. She is honest and some of her days are difficult with pacing and agitation. Her husband is supportive and takes her for slow lazy country drives when he gets home from work. She sends me photos of complex jigsaw puzzles she has been working on, and tells me she was able to insert five pieces that day. She complains of fatigue. I commiserate. I have not had a solid 8 hours of sleep in over three years. I ask her if she sleeps. She said she doesn’t know and asks her husband. She thinks she sleeps but her husband says she doesn’t. I tell her my sleep is fragmented, broken, and she says that may be what is happening to her. She says she is up and down all night. I just lay there when I can’t sleep. I wait until it overtakes me. Glad to know one person who while experiencing “dementia” differently, is caring and reaching out to me. It helps us both to not feel isolated. She spends most of her days alone. She manages to get some things done. She wrote that she cleans her house in spurts, and then rests a lot in between. I am not able to clean. I wash the few dishes that I use, and can sometimes do the rest if there are others in the sink. I can still do my own laundry and can fold the clothes and put them away where I know they are going to be. If any of my things are moved to other drawers, I would not be able to find them. Our friendship is comprised of checking in with each other daily by text and commiserating about how it’s going. She lives in a beautiful house with lots of land and two dogs and manages somehow to be alone most of the time, waiting for her husband to return from work. I on the other hand can’t stand being alone all day. I need the motivation of having another around me to give me the oomph to do anything, whether it is getting dressed or going out. I’ve also been texting daily with another friend, Susan, who I met on Dementia Alliance International zoom chat support group. She doesn’t have a definitive diagnosis but has been struggling with symptoms of PD and fears it may also be Lewy Bodies. These are my two texting friends. Two wonderful women who are in their early sixties who are coping with the onset of dementia. Very different symptoms, very different coping skills. Just to have them in my life as people I can be honest with, away from the herd of judgement and yes, stigma, that exists is heartening.

Caarin and Jeanne have been taking me to Lincoln Center Moments, the program for people with dementia. I push myself to be ready to go. On Friday, Caarin came at noon and because she drove there and parked in a parking garage across the street, we were able to get there before one o’clock. Jeanne doesn’t drive, so we have to take an Uber.

I’ve been able to go to the last three programs because of them. When I went with Jeanne we saw short documentary portraits of historic libraries in New York City and clips from the 1960’s neighborhood around Lincoln Center library. We saw that neighborhood when the great jazz pianist Thelonious Monk lived across the street and clips of him playing live at The Village Gate. Last week when I went with Caarin, we enjoyed a concert by Steve Herring and friends, with their amazing operatic voices and classical musicianship, that showed that the sixth decade of each century in the modern world seems to be a particularly vibrant time that pushes musical innovation toward the next century. They played and sang opera from the 1660’s and 1760’s (JC Bach and Mozart), and from the 1860’s (Franz Liszt and Johannes Brahms). Steve Herring and another musician performed a piece called Clapping Music, by the contemporary composer Steve Reich written in the 1960’s, for two people clapping. They sang One Hand, One Heart from West Side Story. The lyrics by Leonard Bernstein and Stephen Sondheim, is a duet sung by the characters Maria and Tony, while they have a make believe wedding. Steve Herring then closed with a rousing rendition of I Feel Good, by James Brown, the progenitor of funk music, and often referred to as the “Godfather of Soul”. On Friday,  Caarin drove to Lincoln Center again and we heard the consummate vocals and guitar and piano of Celisse Henderson and her band.

Suddenly Mad- Desperation (Lincoln Center Moments - Evan Leslie presents old films from Lincoln Center library - Thelonius Monk)Evan Leslie presents a film about The Lincoln Center library in the 1960’s. This is an image of jazz pianist Thelonious Monk who lived in that neighborhood. San Juan Hill was a community in what is now occupied by Lincoln Center. It’s residents were mostly African American, African Caribbean, and Puerto Rican, and comprised one of the largest black communities in New York before World War 1.

suddenly-mad-desperation-lincoln-center-moments-program-steve-herring.jpgSteve Herring singing James Brown’s, I Feel Good.

Suddenly Mad- Desperation - (Lincoln Center Moments - Celisse)Celisse Henderson sings Aretha Franklin, Chain, Chain, Chain.

I stay for the after-program in which the people with dementia and their care partners are led in discussions, music making, singing and art making. I am always very observant to see if any of the people who have dementia participate. My comments are usually pretty off the wall and illicit a laugh from the art and music therapists who run the program. For instance when asked to complete the sentence – I am…, I proclaimed that I am atypical, vociferous (although I think vehement would have described me better), ferocious. The people with dementia in the after program did not speak for the most part, save for a woman who is 101 who clearly is in the throws of extreme old age rather than dementia. It is mainly the caregivers and companions who participate.

Then there’s still the trips to The Rubin Museum’s Mindful Connections program which my husband takes me to on the third Friday of the month. I look forward to these because I’m encouraged to participate. I’m one of the few with a neurodegenerative affliction who has something to say about the art. The last time I went though I was almost speechless when presented with this image. It kind of looks like what I feel like.

Suddenly Mad- Desperation - (Rubin Museum - Tsherin Sherpa)UFO No. 3 2016        Acrylic, ink and gold pen on cotton                  Tsherin Sherpa

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Walking 

To have a disease that impacts my physical mobility and speech is the biggest setback of this illness. To see that my mobility has declined so much in the last year is startling. Last year at this time, around Halloween, I was out and about taking photographs of children in their costumes, walking outside by myself, fully oriented to my location, able to cross the street alone, without anxiety and physically and emotionally confident. Now when I go out alone it is usually only around the block or to the park two blocks away, and back. When I go for walks on streets further away, it is always with my husband or my companion, Theresa. This is because of the changes in my mobility and also because my coordination and reflexes are slowed. No, I do not want to use a walker or rollator. Using a device to walk would not make it easier to cross the street or do the route that I still walk, which amounts to 1.8 miles. This town is filled with children on their scooters and people that ride their bicycles on the sidewalk. I can just envision a crash between a bike and a walker. I’m faster on foot. I want to avoid this sort of accident.

I push myself to go and get out of my house when I have the opportunity, and I am especially interested to see and experience new things, within reason. This is why I was thrilled when my niece Caarin drove me to her house which is around 13 miles away. She lives in an old Victorian three story shingled house with her husband Eric, which means there are a lot of stairs to climb. I climbed up the stairs to the entrance, then stepped inside and saw the steep staircases that leads to the next two floors. That staircases have become an obstacle is one of the startling facts of this illness. I can still climb stairs, but have to go slow and carefully, holding the banister. I used to bolt up stairs. I remember climbing two at a time only four years ago. She showed me the kitchen and living room and dining room with it’s Shaker style chairs on the first floor. I met her cute 2 year old little bulldog. Then I asked to see the rest of the house and we climbed the stairs to the second floor where she showed me her bedroom flanked by two authentic Noguchi lamps. Eric showed me the sitting room and pointed out a framed boyhood collection of superhero costumes, toy robots and movie posters from the 1940’s. Then Caarin showed me her studio where she knits and runs her knitting business, creating beautiful bold colored sweaters, ponchos, mittens, gloves and hats. She has 150 people creating her patterns all over the world!

Suddenly Mad- Desperation (visit to Caarins home Sept 28)Caarin’s work table with samples of her knitting. On the table is a photograph of her late mother  Carol (the woman who adopted her) who died three years ago, and a photograph of her grandmother, Charlotte.

Then we climbed up to the third floor, where their kids have their bedrooms. Their children, Charlotte and Jasper, are now in college, and I felt like a spy deciphering their personalities from the contents in their rooms. Jasper is a wildly prolific artist, and his room is filled with his artwork, Charlotte’s bedroom is tidy with a Navaho rug and a few photographs. Another room between their bedrooms contains a sewing machine on a desk. Some of her photographs and drawings dot the walls.

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Suddenly Mad- Desperation (synagogue Bima Yom KippurOctober 8 and 9 was Yom Kippur, the holiest day on the Jewish calendar. Jeanne accompanied me to the synagogue. Known as the Day of Atonement, I did not pray for myself to be inscribed, but prayed for my family- for my daughter, my son and his babies, my grandchildren and my husband.

On the way home, as I walked carefully in the dark with Jeanne, we ran into Monique and her husband and mother, who is in her mid 70’s and has been diagnosed with Alzheimer’s. Her mom is thin and tall and there is no evidence of mobility decline. I observed her as she walked. Monique says she has no short term memory, and she could not have a conversation with her as she does with me. I ponder this. How is it that I who am about ten years younger than her mom, now have trouble walking while she appears to be unaffected? What I would give to not have had such a fast decline. It’s 3 years from diagnosis and I think it’s four years since this started. I am now 65 and a 1/2.

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Suddenly Mad - Desperation (trip to Theresa’s apartment in Bayonne)Theresa, my companion’s apartment in Bayonne.

Last week Theresa, my companion/ home health aide, invited me to visit her apartment. She just bought a new car, and I told her I wanted to see where she lived. So she drove us to the New Jersey Turnpike, past the Liberty Science Center and Liberty State Park. She had met Monique on one of our walks, so I told her about the time in 2002 when Monique was a volunteer at an event held at that location that honored the filmmakers selected for the Back East Picture Show where my documentary Back to Gombin screened. My film did not win the award that evening. That went to the playwright Israel Horowitz for his documentary 3 Weeks After Paradise.

We drove on to Bayonne and Theresa parked near the Catholic church she goes to every day. She lives two blocks away and we walked to her building. Up a short flight of stairs to enter, and then up another flight to her apartment. she showed me her bedroom and the bedroom where her daughter Michelle who died only three months ago at the age of 37, used to sleep.

Life is so strange. Why are some fated for glory, some for doom? I was still striving to make movies when I became ill with this insidious disease. It just wasn’t meant to be.

So my hope and prayers are for the next generation and the next after that. My daughter, my son and his children. My daughter is a television and film producer and last week she produced a festival of women’s films at a movie theater in Manhattan. I did not attend because, with my now obvious decline it might have embarrassed her. I can no longer “dress up” and when I speak I stammer and my behavior is often odd. So I suggested that Caarin attend and she did and sent me a photograph of my beautiful daughter presenting and another photo of her greeting guests at what was a sold out event. My time is over, and the strange thing about this is I am watching myself end in slow motion.

Suddenly Mad- Desperation (trip back from Theresa’s apartment - David Bowie mural)Returning from Theresa’s I pointed out this mural to her. It’s a 180 foot tall mural of David Bowie painted on the side of a building in Jersey City by Brazilian artist Eduardo Kobra. I once passed David Bowie briefly on the staircase at the old Whitney Museum, in the stairwell. He smiled and said hello. Now he is gone and I remember that moment. I saw him again at an exhibit of his friend, the musician, Lou Reed’s photographs. He stood with Lou chatting along with his wife, the model Iman, and and Lou Reed’s wife, the performance artist, Laurie Anderson. Now Lou Reed has passed away as well. If there IS a heaven, those are two I would like to hang out with. Maybe we could dance,

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Suddenly Mad- Desperation (a sign embedded in a tree - Sept 21)Took this photograph of an old street sign in Hoboken enveloped by a tree while on a walk with my husband.

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More walking

Last Saturday I went for my last great walk. It revealed how limited my mobility is now but it was a beautiful day despite this. My husband drove us to the Hartshorn Arboretum and bird sanctuary. The foliage in the trees are changing color and autumn was blazing as the green gives way to red and gold. I was able to walk on flat and some of the slightly sloped hills. I was able to walk up and down the steps around the main buildings and along the path that encircled a much lower sloping hill with 3 miles of trails leading through the diversity of flora and fauna. I tried to walk through some of the trails with my husband, but when they became narrow and steep, I couldn’t manage it, and we had to turn back.

Before we left a lovely Asian man asked us if we’d like him to take our picture. My husband put his arm around my shoulder and we both smiled.

Suddenly Mad - Desperation (Arboretum and mobility)

13 thoughts on “Should I call this despair?

  1. Makes me sad that you think “There is stigma and lack of empathy within the dementia community as well as outside of it.”….our differences, our rates of decline are beyond our control but your ability to type, like me simply with 2 fingers, is comforting for me. O’m often criticised for still being able to type but then I think of you and others and know I;m not some freak, know I;m not alone…..x

    Liked by 1 person

    • Wendy, I was referring to my own personal experience when I wrote that there is stigma within the dementia community as well as outside it. I was a member of Dementia Mentors, an online support group. Recently I was removed as a member because I was very outspoken about my struggles. It was an important part of my life to chat with members, but now I am prohibited from going on the chats by the co-founder (who does not have dementia), Gary LeBlanc. My removal from my social network has made me extremely sad and very isolated. Fortunately, the co-founder of Dementia Mentors, Harry Urban, invited me to participate in his online support group on Friday evenings at 9pm. -Minna

      Liked by 2 people

  2. Minna – I’m so glad you were able to push through and write this post. I know how much effort this takes and I know that you were unsure that you could manage to do it. You bring people together through your blog and community is so important as this is a mighty lonely journey. I’m really happy to hear that you have developed texting relationships with other women who are also suffering from dementia – it is helpful to compare experiences – and frustrating as well.

    It was an honor to have you visit my house – and I thank you for only posting a picture of my work table. At the moment my studio looks like a bomb went off as I’m photographing my work and have rearranged everything. On your tour you saw much of the mess that I try desperately to hide and ignore on a daily basis. Oh boy. Only you Minna, that is definitely off limits for the public at large. (0;

    Love you love you love you,
    Caarin

    Liked by 1 person

    • Caarin, I’ve gotten a number of good responses to this post. I also send it out to people as an email, so those comments don’t appear here. Teepa Snow (teepasnow.com) who is an expert in dementia care and is famous in the field wrote to me. This is what she wrote-

      Hey Minna

      I think you have written, photographed, and drawn some exceptional images, thoughts, and realities.

      I am wondering if you would be interested in having these shared out on a page we are developing on our website by PLwD for everyone to see, experience, and reflect upon.

      I have been active in many dementia oriented programs and organizations. I absolutely agree that even within the community of those living with various forms of dementia there is some sort of hierarchy – of “still looks and passes normal-most of the time”, “can pass if accompanied”, and then “impaired”, and then ”absent”.

      It seems as if there is a desire or inability to simply create to community of us…variously abled and interesting and interested people who sometimes want to be with one another and sometimes need solitude or time to be differently engaged…

      I’m not sure why this is so hard to get to be… the concept of an “US” not a “Us” vs or compared to “Them”

      It is such a challenging dynamic to address… as people are challenged by their own changes, it seems they can tolerate and accept the changes of others with less grace and acceptance. People without dementia can either get on board or totally reject the idea that they could be part of this world and improve their own brain fitness, by participating and learning and growing from these experiences…

      It sounds as though the care partners are benefitting from programs, it is too sad to me, that those who are the ones living with dementia are perhaps relegated to observers only due to the inability of the leaders of these groups to bridge the gap… and allowing supporters to be the primary focus… although they too need opportunities to experience art, music, and new perspectives….

      Any thoughts from your world view?

      I hate that you despair. You are so able, so similar, and yet so different than you used to be… Is it the changes or the current state of abilities that cause your distress? It sounds as though your friendship with Julie is important to her and speaks volumes of your continued spiritual practical support of others.

      Over my many years of involvement in the world of dementia, I constantly am amazed with the variety of preserved and changed abilities…

      You, David, Kate, Lauren, and so many of my friends living with brain changes are the most remarkable professors and teachers…. I only hope, if I join your ranks, I will do as well, for as long… and maybe by then at least some of the stigma can be reduced, barriers to living well addressed, and opportunities expanded in truly meaningful ways…..

      Thank you for sharing with me.

      Consider whether you would be open to posting.

      And a follow-up question on a practical issue. You mentioned the challenges of stair climbing. How is stair descending. I have had a number of people who can go up, but coming down requires “step-together” patterns or they have ride the elevator down after climbing a few floors for a fitness program in the winter months…

      Many thanks and blessings for the day!

      Teepa

      Until There’s A Cure, There’s Care™

      Teepa Snow, MS, OTR/L, FAOTA

      Dementia Care & Training Specialist

      Owner, Positive Approach, LLC

      http://www.teepasnow.com

      ___________________________________________________________________________________
      I haven’t written back to her yet, but will.

      Of course I had the sense to not post pictures of your inner sanctum. I did want to write about the visit though and think the photo of your work table is a beautiful still life.

      Love you,
      Minna

      Liked by 1 person

  3. A most lovely post, Minna. I always enjoy your journey of your daily life, your thoughts, your words, your feelings on everything. To me your life sounds very rich and full of texture. Sometimes you give me strength to finish a job or go to my classes (exercise and a senior continued learning). Lately I’ve been exhausted with dealing with my difficult neighbour. Your post is a welcome break from my obsessive thoughts of her. 🙂
    Thank you for all your hard work of writing and sharing.

    Love
    Lily

    Like

    • Hi Lily, Thanks for continuing to read my blog. I’m glad it gives you strength to finish a job or go to your classes. It takes a lot of cognition and motivation to keep writing and posting. I wanted to still share what is going with me. -Minna

      Liked by 1 person

  4. Beautiful entry, Minna. I am glad you are still getting out some. When I am in town end of December – beginning of January we will go on one of our walks.

    Dina

    Like

  5. Hi Dina,

    I’ve been missing you and glad at least we can still connect through the blog. It will be winter when you come at the end of December, beginning of January. We’ll have to bundle up. hope I can still go out with you. Let me know when you have the date.

    Love,
    Minna

    Like

  6. Hi Minna
    Its been a while since I’ve written. My wife Barbara has been declining in her journey with alzheimers. She’s still functioning quite well but its been hard seeing the decline. Ive finished work and am on chemotherapy for my cancer. Needless to say it’s been a tough time. But we are so thankful for our children and her siblings who have been a tremendous help.

    Your blogs are always interesting as my son is an artist. He works as Exhibition Manager in our local art gallery. His dream job. As a musician I think its wonderful that they have music performances. Music is such a powerful and emotive art form.
    I have written a song about Barbara ftlm a carers perspective and I would love to send a copy to you. Are you able to access it if you give me your email address? Thanks. Take Care
    Keep Lookin Up
    Jack

    Like

  7. Pingback: In the Blogs – October 2019 – When The Fog Lifts

  8. Hi Jack,

    I meant to write you sooner, but here I am now saying hello. I am sorry to hear about your travails, especially your chemotherapy which is a burden I had no idea you were undergoing. Is Barbara aware that you are struggling too? You say she is still functioning quite well but so hard to see her decline. I know each person who has this disease experiences it differently, so when you say she is functioning okay do you mean she is still walking and talking, but forgetting more? Is she withdrawing more and quieter? I notice all patterns of this disease are so different. With me there is more physical decline – balance, walking, and talking and sleep – the elusive sleep! Today was actually one of my better days. Maybe because I listened to my husband and got on my exercise bicycle. Could only do 6 minutes but it improved my mood and stopped the agitation that has been pervasive. My friend Jeanne came over and we went for a little walk in the park. Cold here, but it was sunny, so i was glad to catch a fee rays. Then we played Scrabble and I beat her. I joked that my tombstone should say “Alzheimer’s Scrabble Champion”. My husband said, “Isn’t that an Oxymoron?”

    I would love to hear the song you wrote for Barbara. Not sure how I would hear it if you sent it to my email address. Maybe as an attachment?

    Warmly,
    Minna

    Like

  9. Can send song as an attachment. Just need your email address…Barbara is just making comments about why didnt we marry, when we’ve just celebrated 47 years. She also sometimes forgets I’m going through chemo. But were still having fun and looking at the donut, not the hole in the middle!

    Like

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