Love at The Bitter End

Suddenly Mad- Love at the Bitter End - drawing of Mimi in the garden

Writing is a way of putting things in some kind of order. It’s the attempt to be seated in my soul and watch this thing, Alzheimer’s, unfold.

Thirteen days ago was Father’s Day. June 17, 2018. It was a beautiful sunny day. I photograph with my iPhone and took a snapshot of my daughter. The drawing was made by looking at that photograph. It doesn’t do her lithe beauty justice, but I tried to capture her likeness. She looks like her papa. Oblong face and and graceful long limbs.

Father’s Day. It was an emotional day. First my son arrived alone, without his wife and baby daughter. I felt so much love for him in that moment, as soon as I saw him and hugged him. On this day I was glad to have a few brief moments alone with him. When my daughter arrived, she presented a gift to her dad. Japanese pajamas from Muji. A navy blue ensemble with a top that ties around the waist, and pants that grace the top of the calf. He went upstairs and put them on his tall and lanky frame. The fit was perfect. As the kids and I sat in the backyard garden, he watered the flowers and plants. Then my daughter and husband went out for a walk, leaving me alone with my son. We sat inside at our large glass dining table and looked at photographs I have kept in a box for a long time. Photographs I had intended to put into albums and never got around to doing. Photographs of him as a baby, his childhood, my daughter’s childhood, birthday parties and cakes with candles, the years my son gave piano recitals – Rachmaninoff, Beethoven, the Chopin Etudes. Photos of the relatives. Happy times together. Victories. Our little glories.

Many of the people in the photos who were so important to us are gone now; my mother-in-law Edith, who died two years ago at age 94 with late onset Alzheimer’s. She was the glue who held the family together. There were photos of her younger brother the beloved uncle Jerome,  who was a brilliant historian, his mind sharp but his body unable to withstand the ravages of illness after illness. Pictures of Milton, my husband’s father who was always so kind to me. He always wanted to be a writer and finally had time to write when he retired. But retirement was brief. He died at age 70 of a massive heart attack, after walking up a hill to fetch a copy of The New York Times. The photos of my sister and her children reminded me of when things were were still congenial between us, and our parents were alive. Photos of my parents from our visits with them in Miami Beach. Photos of them in Hallandale, Florida. Life had promise and endurance.

How could a disease like this happen which abruptly changed everything? How long was this brewing in my brain? I call this time period I am living in now – love at the bitter end. I know that my memory and functionality is being erased by an insidious disease and I am holding on as tightly as I can by writing and remembering.

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The days that followed included an experience at Ruth’s apartment that was frightening. Last Monday soon after I got there, I had to lay down on her bed, and had so much trouble standing and walking, that she attempted to wheel me on the seat of her walker when it was time to go. I called my husband to come and fetch me and take me home, but I couldn’t get up. I couldn’t stand. He had trouble believing me and began to lose his patience. He said he was going to set the alarm on his phone and give me three minutes. I started to panic and cry.  I felt like I was unable to walk. For a few minutes I couldn’t get my body to respond to my own command to get up and walk, though I was telling myself to. When I finally was able to stand, I stumbled down the hall to the elevator where my husband was waiting in the lobby. It was pouring rain outside. He told me it was going to stop, and we could wait it out in the lobby. It did stop raining, and although walking was harder than it had been going there, I was able to walk home holding onto his arm. Prelude to this – my neurologist wanted me to double the cognitive medication Rivastigmine, and I took 2 capsules that day instead of the one I had been taking. The next day my husband called him and told his staff what had happened after I increased the dose. The call back from his nurse practitioner was that if this is how I reacted to the increased dose, I should go back to one capsule. I’ve been taking this medication for a year and a half. I doubt it’s slowed my progression. If anything it seems to have speeded it up. Who knows? I do know there are a host of side effects including Bradicardia (slowed heart beat) and nausea. I’ve noticed that I’ve developed reflux since starting it, and never had that before. It took days to recover and feel somewhat normal in my gait and ability to walk.

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suddenly-mad-triumph-or-alzheimer_s-or-alzheimer_s-close-up-of-ruthie-e1530137434489.jpg

Ruth my friend and confidant has left for Atlanta. Abruptly. She called me on the phone on Monday morning and told me her 48 year old daughter called her and told her she hasn’t been in bed for 3 and 1/2 months. She’s been estranged from her daughter for years. Ruth thinks it’s depression and PTSD, and she bought a plane ticket and left. Gone in a flash. I came to depend on Ruth very quickly as she offered companionship instantly after we met. I would go to her apartment across town, and we would spend time together, almost every day. She saw me have good days and many bad days.

Her presence helped assure me that I would still get around, visit her and we would do things together. Left to my own devices I sit so damned much. There is such a sense of gravity pulling me down (makes me think of the phrase, a body in motion remains in motions, a body at rest remains in rest). Her presence gave me the impetus to push myself. We would go to the bank together where I deposited small checks, and saw that I had not forgotten how to use the ATM, and still knew my pin number. We walked to her veterinarian to pick up medicine for her cat, Gigi, and it helped me orient myself with landmarks I have known for over forty years in this small city. I was devastated when she told me she was leaving. Such is dependence in Alzheimer’s. One gets needy. This is childlike regression in a body and brain that is losing it’s motherboard.

She helped to keep me going. Now she’s gone, and I have no idea when she will return and what I’ll be like when she does get back. It could be months. I now have to find new ways to fill my days. I was so productive before this horrible disease overtook me. I wasn’t always happy but I was okay. Now I am not okay.

My daughter who I love will not have me around when she’s 48. I envy Ruth in having this closure with a daughter who has been estranged from her for many years. She got to heal the dysfunctional relationship by showing up for her daughter in her time of need.

I wish my daughter would take some time to be with me now, even though I can’t be the mom she knew who could take care of her. I love her, and wish she would understand the nature of time passing, and how ephemeral things are. I may not be able to speak or walk or talk later, if I’m still around. It’s already getting very hard to do those things. I reach for her now. I know I try too hard to hold on. It’s very painful for her to be with me now. It pains me to know that.

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Suddenly Mad- Love at the Bitter End La Lanterna di Vitoria Cafe menu

Jackie is a very dear friend who I wish lived in this city!  She is the chair of Dementia Action Alliance and she and her husband live about an hour away in New Jersey. Jackie frequently Zoom chats with me, and consoles me when there was no one else around and I have been full of worry and regret. She and her husband Lon took me to New York on Monday to attend a panel discussion held at New York University called Being Human.

The photograph is from the menu of the restaurant we went to in Greenwich Village. We ordered pizza and eating was no problem, though I thought it would be problematic. At home when I eat, I forget how much I am putting in my mouth, and swallowing has become a problem. Yet eating a few slices of pizza was easy. (That’s part of Alzheimer’s, eating and swallowing. It’s something I always did easily of course. But now this too is frequently hard and takes concentration to do. I literally have to focus on being able to swallow. It’s called dysphagia https://www.agingcare.com/articles/dysphagia-how-to-help-a-loved-one-eat-and-drink-safely-187010.htm and usually happens in late stage. Stages be damned. I’m not in late stage and it’s happening to me now. I don’t think I would be able to write about this if I was in late stage Alzheimer’s, but who knows, this is such a weird disease.

From the restaurant we walked to the NYU School of Law, but still had time to walk around before the program began, and I wanted to get my bearings. We headed up Washington Square West where I saw a powerfully built looking man doing pull ups on a horizontal pole. I looked in the distance and thought I saw 8th Street. Jackie confirmed that that’s what the street sign said. We walked towards it and it’s then that I understood where I was. I had for so many years walked on 8th Street, shopped there for shoes (it used to be littered with shoe stores). I wanted to show Jackie and Lon how Washington Square connected to 6th Ave. and that’s where I would take the PATH train to home. What I understood at that moment was that my conception of the streets and mapping out my location was fragmented. I can find my way when I am extremely familiar with routes I have taken in the past. New locations are now daunting and my fear of getting lost now is what is keeping me from venturing out alone (that and usually having no where to go along with wobbly legs, the fear of falling, and an aversion to crowds and to loud sounds).

Standing on 6th Ave across the street from the PATH train I’d taken hundreds of times, was bittersweet. I was glad to have found my way there to show Jackie, but I hadn’t been there in over two years. It is during these two years I have progressed in this disease. I stared at Citarella on the corner. This is where I shopped when I was in this neighborhood. I used to buy herring, vegetables, fish, cheese, bread and olives there. I used to have a great appetite. As I stood across the street from Citarella and the PATH entrance on 9th street, it felt like I was the ghost of my former self. We headed back down 6th Ave. and then onto 8th Street and turned back onto Washington Square West where we passed a the same very muscular strong bodied man with no shirt on, doing pull ups on a pole.

Suddenly Mad- Love at the Bitter End - NYU Law Building across from Washington Square Park

In the  lecture hall, in the law building at NYU, the panelists were seated and introduced themselves after Mary Fridley, the moderator spoke. She is pro-bono director of The East Side Institute http://eastsideinstitute.org/

Suddenly Mad- Love at the Bitter End - Being Human panel discussion with Mary Fridley, Mary Radowsky, Susan Massad and an art therapist and recreation therapist

The talk aimed to change the “tragedy narrative” that distorts how people living along the dementia spectrum are seen. I know one of the presenters/ panel participants from participating in bi-weekly Zoom chats on Dementia Mentors. She is Mary Radnofsky, a former college professor president of the Socrates Institute. Mary is the first person with dementia to advocate at the UN for the human rights of people living with dementia. Her dementia is caused by subcortical leukoencephalopathy, also known as Binswager’s disease. It’s a form of small vessel vascular dementia caused by damage to the white brain matter. She does not have Alzheimer’s. She travels with Benji, her service dog, who is her constant companion.

Suddenly Mad- Love at the Bitter End - Mary Radnofsky and Benji

The other panelists included Susan Massad, who is a retired primary care physician with 51 years of practice experience. She launched New Timers, a senior theater workshop, and is an East Side Institute faculty member. She has a sister who lives in California who has Alzheimer’s. The youngest panelists, were Nettie Harper who is a recreation therapist, and Katherine Houpt who is an art therapist working in Chicago.

A woman in the audience named June, who I later introduced myself to, told the story of her sister who had younger onset Alzheimer’s. Her sister was in her late fifties when it started and she lived until her early seventies. I sent her my blog, and she wrote me that I’m a fine writer, and that what I am going through sounds very hard and painful and lonely. She wrote that she hopes I can build with Susan Massad and Mary Fridley and others who are trying to change the tragedy narrative of dementia. She wrote that maybe I can do that with them.  She said maybe this will help me.

The discussion centered around the effort to be inclusive and understand that people, even those in later stages of dementia are human, have feelings and are capable of creativity and self expression. Being treated with dignity and respect should always be the goal, and as evidence of this Nettie Harper recalled an Alzheimer’s patient at a facility who the aides complained about as a person who bites and hits and can’t speak. Nettie said she approached the woman and extended her hand. The woman spoke with her and was pleasant and communicative. There was a huge disconnect for Nettie with the way this woman was described to her and what her experience of meeting her was. Having been told that the woman was a biter and hitter, she wondered what actions the aides took with her to elicit this response. Surely the way they related to her, probably  forcibly trying to get her do things like bathe when they wanted her to, must have irked her. Nettie saw that her approach to this woman evoked a positive response, and wondered if the brusque treatment is what characterized her as hostile.

People are not trained to be understanding and patient when dealing with dementia patients. What goes on behind the closed doors of Alzheimer’s units is disgraceful because the aides are overwhelmed in caring for dozens of patients and approach their jobs as assembly lines in which people have to be bathed and changed and fed. These workers, paid on the low end of the scale, are already disgruntled. Given a patient who needs more time and needs to be approached with tender loving care does not typically fit into the time frame of harried underpaid nurses aides.

The problem is a system that warehouses people with dementia, is owned by corporations with underpaid staff who don’t care and expect the patient to be compliant. When they’re not compliant, they are deemed difficult and often medicated to control their behavior. Dignity is not routinely offered to dementia patients. For this people pay upwards of $10,000. a month and much more. I’ve read about patients walking around with feces on their clothes and all over their rooms on www.alzconnected.org in the spouse forum.

Changing the tragedy narrative must include changing the attitude of caregivers who warehouse their loved ones when their care becomes overwhelming. Anything less is putting a Pollyanna face on these horrible terminal diseases and what is needed to create an attitude of respect and dignity.

Changing the tragedy narrative involves so much more than art therapy and recreational therapy. This just tries to sugarcoat the situation and close the closet door on a monster who won’t stay in the closet. I’m all for recreation and creative programs for people with Alzheimer’s and dementia. However, institutionalized care of people who have Alzheimer’s and dementia is routinely hideous in most facilities. Yes, let’s accept the fact that people with dementia are human. That would be a start.

As for people in the earlier to moderate stages like me, who are intent on never going to a nursing home, know that every day we have to outmaneuver this insidious demon, until it overtakes us. Give us the dignity and respect and provide us with kind and considerate care. Don’t warehouse us with untrained workers who are overwhelmed with caring for dozens of dementia patients. Find another way.

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Suddenly Mad- Love at The Bitter End (The Bitter End Cafe)

We passed The Bitter End Cafe on Bleeker Street, on our way to West 3rd Street to get Lon and Jackie’s car for the ride back to New Jersey. It began as a folk music venue in 1961, and became famous for hosting performers like Joan Baez, Joni Mitchell, John Denver, Bob Dylan, Judy Collins, Odetta, Neil Young, Pete Seeger, Peter, Paul and Mary,  and Phil Ochs, and comedians like Woody Allen. During its heyday the Bitter End showcased a wide range of talented and legendary musicians, comedians, and theatrical performers. The name of the cafe says it all. The Bitter End – to the limit of one’s efforts – to the last extremity.

I’ve gone the distance and exceeded the threshold it seems. I’m not that old and yet I am at the bitter end. Next stop – Heaven’s Gate.

 

 

12 thoughts on “Love at The Bitter End

  1. I can’t remember (insert a smile here) have you been diagnosed with Parkinson’s? Some of the symptoms you mention sound like a type of Parkinson’s called Multiple System Atrophy or MSA. It’s a rare disease and difficult to diagnose. It may account for your ability to write so well yet have forgetfulness, moments of inability to move/walk/instability, dysphagia, occasional trouble vocally communicating, chronic depression, GERD/nausea, rigidity. If this is the case it could be that the meds they are using to treat you aren’t the proper ones and are making things worse. I’m taking a shot in the dark here, but a good friend’s husband had MSA and after years of misdiagnosis found a doctor who figured out what was wrong and got proper treatment. Most important they found out what was wrong and it proved to his wife and family that he wasn’t a lazy, no good, complaining waste of a person, which it sounds like your family has made you feel like you are.

    You write so well and in such detail. I realize that you forget things and there are parts of your brain that don’t work like it did before. MSA does affect the brain with some dementia type symptoms. But having a correct diagnosis would give your family and you the knowledge they need to understand you, your symptoms and the future ahead. You may have early onset Alzheimer’s, but some of the symptoms are a bit strange.

    It would be nice if your husband and kids would go to counseling sessions, is that out of the question?

    You are correct about nursing facilities. Staff is underpaid and places are understaffed. They don’t have enough people to allow for the time it takes to attend to people with dementia, people who require enormous amounts of time to get things done because everything must be done SLOWLY and with PATIENCE. Turnover in SNF and memory care is huge because the stress of working in this environment is hugely overwhelming. That means that the people working there generally don’t have experience dealing with people who have dementia or understand their needs. If they do they often don’t stay long because they become frustrated trying to meet the needs of the patient while working within a system that won’t allow for the patient’s needs to be met.

    The biggest issue is money. In order to pay the workers a better salary, to have better staffing, to have more skilled and educated workers, the cost of care would have to increase. The majority of people in nursing homes now and in the future are going to be covered by Medicaid, a tax-funded payment system. Taxpayers aren’t likely to agree to pay the needed tax increase for this care even though they are the ones who will need this coverage for their family members or themselves in the future. It’s a vicious circle. In the olden days, extended families lived close by and tended to their own, life has changed but our caregiving needs haven’t. The problem is we haven’t figured out what to do to replace the quality of extended family care at a price we can afford and few people are willing to talk about that cruel reality.

    I’m glad you’re meeting like-minded people. You have a great mind that should be nurtured for many years to come.

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    • My diagnosis is Alzheimer’s. I have no idea if multiple system atrophy comes into play. As they say, “if you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s”. I am always looking for answers and have read that problems with walking in Alzheimer’s have to do with gait apraxia and are related to degeneration in the frontal lobes. Whatever is causing this it appears to be related to progression, and may signal vascular dementia too- meaning mixed dementia.

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  2. Minna,
    I know how you feel about feeling needy. I have the same issue and find it degrading and hurtful when I reach out and get no response, but I am finding it happens to a lot of people with this illness. You can’t see our disabilities . People expect more from us than we can sometimes give. I am learning to be okay with it. It is what it is. Seems nothing I can do about others . Only myself.
    Oh and yes, damn the stages. I do not fit the stages as well. I was told I have moderate to severe dementia, yet here I am, writing to you. With bad days , I can do not much. So maybe we are not so odd after all. Maybe there are many more just like us, but afraid to speak up. I am starting to think this more lately. Keep writing. I appreciate your honesty.

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    • Julie, I sent you an email, but it bounced back. I really wish i could communicate with you more. Of all the people I met on the Alzconnected site, you seem to get it the most. Sending love. Let me know if it’s possible to speak on the phone. That would be great. -Minna

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    • I think Julie is right about the stages. They are just loose guidelines but don’t fit for most people, because the specific circumstances in each stage don’t apply to individuals in each case. I think there are many more like you who are able to communicate by writing and think on a higher level but aren’t able to do activities of daily living on their own because of early onset Alzheimer’s. It’s just that most of the information that’s shared is about later onset Alz. and elderly people which I think affects people differently.

      You two keep sharing with each other, you seem to understand. And please keep sharing with us so we get it and can help more people because we want to understand. Thanks.

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  3. Hi Minna
    Keep the writing up. It’s brilliant. Love your ability to express yourself so well. In fact your blog has got me thinking about starting my own blog…..Will pray that another ‘Ruth’ will come into your life. I feel your loss especially when these type of people are rare when Alz arrives. It’s been the big issue for Barbara not hearing from her friends. Still we move on and get on with our life.
    Take Care Minna.
    Keep Looking Up
    Jack

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