How to Remain Friends With Someone Who Has a Terminal Illness

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At my support group Monday our facilitator provided a little insight, which was sad for me to hear, but I had to hear it to make sense of something I have not been able to make sense out of for a long time. You see, at this time last year I was seeing a lot of people. Other bunny moms, friends from the neighborhood, and friends from before, and even a bunch of people from the ALS community. So I posed this question Monday night. I said "in the first two years of ALS, I had so many friends who stopped by. We went to lunch, had tea together here, or even just went out for a walk, or just hung out here. I got emails from everybody. So many people cared, and now I hear from nobody. What happened??"

Well Toby, our facilitator said "many times, people don't want to keep up a friendship with someone they know they are only going to lose" It opened my eyes. I have gotten those "I'm sorry I haven't been around but life is so crazy" emails. Now I get nothing. From anybody. Whole entire weekends go by when I see nobody except my aide. If it weren't for my Jewish Family Services volunteer Judy, I would never get out of the apartment except for medical appointments. I9 can appreciate people being busy, but everybody?? And when I did speak to people, they mentioned going to the theater, out to dinner, parties etc. But suddenly for most of my friends and family, I don't even know what is going on in their lives. This left me with a lot of questions-- What did I do to drive everyone away? Am I that tough to look at? Are they really so so busy? I bought it for a while and waited for their crazy lives to calm down, waited for them to come around again. It never happened. All summer I barely went outside. Fall was worse, winter unbearable.

So, what Toby said, is making sense. I hung on the promises : "We'll go to the city/a museum/a movie/the beach/the park....etc." There were even people who said they were coming, and never showed. I got cards, emails, comments on my blog. They loved me, thought of me, prayed for me. So now I know the truth; they never intended to see me. I'm going to die anyway. Except I'm still here. In the meantime, other people died, people who weren't supposed to die, who weren't terminally ill, or they moved away, or got married, or had babies. So here I sit with the sad knowledge that these people are gone. Their lives are never going to "calm down", the visits won't happen, the outings won't happen. Okay, okay so I have to move on. But where?? I try to break up the monotony by playing computer games, savoring what outings I do have with Judy, the connections I make at ALS functions [where I lose people to death too]

Where do I go? What do I do? How can I meet new people? How do I go places and do things when sometimes a grumpy aide is my only companion, an aide who is into hiphop, Lifetime movies, and has her own life?? There are so many hours one can spend online, so many hours of computer games I can play. Just so many DVDs I can watch. And the little things I could use help with, use a friend's input with -- pictures I want to hang on my walls, organizing I want to do. Just to have someone to drink tea and eat cookies with, sit in the park with, etc. I am also stuck by my own inertia-- it's depression. And yet I feel lucky to still be here, even if there is still a part of me that waits now that the warm weather is here, for that friend's life to "calm down". I just don't know how to get myself to feel that I am doing something worthwhile. Toby said I shouldn't take it personally, that it's not me. But it IS me.

Anyway, I found this on a site for cancer patients. Some of it applies to me, but some doesn't [for instance, I am not going thru chemo treatments. But the message is universal

It's called "Remaining Friends With Someone Who Has a Terminal Illness" and gives tips to the person who says "what do I do/say?" If you still don't want to remain friends with me, fine. But the article might help if you have another friend or family member who has a serious illness.

Governors Gone Crazy and Tragedy for an Aide

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As with everyone else in New York these days, I find myself distracted by the Governor Spitzer sex scandal, the subsequent Governor Paterson extramarital-affair gossip, and the [NJ former governor] McGreevey alleged-menage-a-trois scandal, as well as a tragedy on E.51st St., where a construction crane hit a residential building, killingg seven people. So I haven't updated everyone on my last visit to the doctor.

My blood pressure was down to 140 over 90, which is an improvement from 210 over 118, but it is still too high. Since the Benicar wasn't covered by my Medicare part D drug plan, and would have cost me $70 co-pay, she switched me to Lisinopril, and ACE-inhibitor, and told me to also take the Toprol, an alpha-blocker, again. And, she also added Crestor for the cholesterol. I've lost track of the number of pills I am taking every day. On top of this, my urine specimen showed that I had an infection, so I gt a 7-day round of Cipro. Since the Cipro pills are huge, I thought I would chew it ----- big mistake! Cipro has to be the most vile-tasting pill that ever passed my tongue. This morning was my last dose-- I hope. I managed to swallow down about 10 of the 14 doses, without having it melt on my tongue and totally gross me out. In two days, I have to give another urine sample and I PRAY that this infection is gone, because the thought of taking this medicine again, sends shivers up my spine.

My support group at Beth Israel was very emotional this week. It was Phyllis' first meeting since Stan died. She is doing the Ride for Life ad Advocacy in DC, and I have to think it will be so hard for her. Roberto's two sisters Ivette and Rachel were there Tuesday night, along with three people who lost a parent to ALS, and Susan who lost her son in August.

Another tragedy hit hard here at the beginning of the week. Gulshan, one of my aides, received a phone call from her husband's brother in India that her husband [who has been over there for several months to run a family business], was in a serious automobile accident. On Tuesday night she came to work, and was very distracted, understandably. Se said they needed to induce coma for her husband, in order to ease the swelling in his brain. She was looking forward to the next day, when they would get him out of the coma and she would be able to speak on the phone to him. Her son was already on a plane to India. Gulshan would ot be going unless he took a turn for the worst. Well, he did take a turn for the worst. Shortly after Gulshan arrived home Wednesday morning from her all-night shift, she received a call from India that her husband had passed away. She left for India where she will be for two weeks. I am so sad for her!

A New Earth [Outlook]

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I can finally breathe a sigh of relief knowing that the Medicaid recertification went out. Now it's time to take care of me and my issues. I am loving the Oprah Winfrey/Eckhart Tolle web workshop. Considering the way I have pissed people off and driven them away, it is work I have to do for me. So far it has dealt with forgiveness and separating the self [he refers to this as the "ego"] from material possessions. One of the things that has me stuck and surrounded by my art and craft supplies and other clutter, has been my unwillingness to get rid of that part of my identity. The other factor is of course, time and energy. So last night I set to work scanning my rubber stamp and scrapbooking supplies, to list on eBay..

I have thrown out a lot of stuff, and it was painful. But I have begun to look at the process as a purge of clutter and a way to let new ideas and endeavors enter my life, which it has not been able to do for the clutter that I looked at every minute of the day in this place. A lot of my dealings with people in my life has been affected by the roles I have played in my relationships. Always the planner, the initiator and the organizer, it's been difficult for others and myself to give that up and let others do that for me. And it might be impossible for others to do for me. Ditto for the people I have chosen to be in my life. My friends and colleagues were always type A, driven, busy, and largely high-achieving. That hasn't changed for them; it had to change for me. I am going to name one of my books "Forced to Sit Still and Shut Up", because that is precisely what has happened. If it weren't for ALS, I would be doing the same thing. It was silly of me to expect that, just because I am forced to be still, that my entire social circle should do the same. I need to look for support in a place where there are other people who are able to sit still for a while as well. A fellow PALS once told me that the fact that she got ALS later in life, when her circle of friends was largely retired with grown children who were out of the house, is the reason she is not at a loss to find friends and neighbors to spend time with. It was a startling revelation to me, when this concept clicked for me.

I would love to somehow find a discussion group that I could belong to, to discuss the book and keep doing this work on an ongoing basis. Right now, I am letting myself fulfill this need online, which is fine. The chapter we are currently reading deals with the choice to look at illness as an obstacle to overcome, or as a victimization. I do both, but I need to learn to get rid of my role of "victim". Good news: my aides, when they show their Concepts ID, and are with me, can get into any UA movie for free. The Midway in Forest Hills is a UA theater. So now I don't have to pay double admission to take my aide to the movies, or wait until a friend is available to go to a movie with me!

Mike Smith of Dave Clark Five, Dead at 64

Just when the Dave Clark Five were about to be inducted into the Rock and Roll Hall of Fame, I learned of Mike Smith's [lead singer] death at 64. My idol, Peter Noone of Herman's Hermits, has been raising money for years to get Mike the things he has needed, including a motorized wheelchair, for years. You see, Mike was paralyzed from the ribs down, in a 2003 accident. He fell off a ladder while fixing up his house in Spain, and sustained a spinal cord injury. His death was a result of pneumonia, a common complication in spinal cord injuries.

The Dave Clark Five were part of the British Invasion, started by the Beatles in 1964, and which also included my lads, Herman's Hermits. This band was so much a part of my life. The Dave Clark Five were on the Ed Sullivan Show 12 times, and I probably watched it every time [eating Chinese food of course]

The Blood Pressure Battle Continues

ferncohen.com
The blood-pressure battle goes on. My toprol didn’t help, and my blood pressure is higher than ever. So I went back to the doctor yesterday. She switched me to Benicar, and she also added Crestor for high cholesterol.. She also gave me a two-week supply from her samples, which turned out to be a good thing because, as my aide learned when she brought the prescription to the pharmacy, my Medicare Part D will only cover 25%. That would leave a co-pay of $70. Since this is a hardship for me, the pharmacist will call the doctor on Monday to get an alternative..

On Tuesday, I got fitted for the special shoes to go with my new braces. They will be ready in two weeks. Then I am going to try to get a few physical therapy sessions to see if I can walk a few steps with them.

Monday we had our MDA support group at All Souls Church. Roberto’s two sisters were there, but Roberto’s absence was blatantly obvious. I looked over at the sofa where Stan and Phyllis always sat, and it was empty. Phyllis said she would be back after her 30-day mourning period.

On Thursday Tiegan, the social work intern from ALSA, came to visit and we talked about a project we hope to work on together before her stint is up in May. I also signed up for Oprah’s web eventm a class on “A New Earth” by Eckhart Tolle. It is about finding your life’s purpose, and over a million people from all over the world have signed up. I need to do something spiritual like this.

"Definitely, Maybe" Brings Me Back to the Clinton 90s

This past Sunday, my friend asked me if I wanted to see a movie. I jumped on the chance to go out and see something outside the four walls of my studio apartment. You see, I have ALS/Lou Gehrig’s Disease and I am confined to a wheelchair. Can’t really go anywhere alone, without a friend or my home attendant. My home attendant is nice, but she doesn’t share my taste in movies. I like independent films, and films I can talk about later. She prefers films that take her away from a boring hum-drum job, silly films that remind her that she can dream of a better life than taking care of me. I have many friends, and they do care about me, but from a distance. Since becoming disabled, I’ve had to accept that most of them can’t be bothered to spend time with someone who requires advance planning, can’t pick up anything I drop, and communicates by writing notes or typing into a machine that converts my text to speech [Lou Gehrig has robbed my ability to speak]. Most of my friends have raised their children already, and being with me brings them back to a time they don’t have energy for anymore in their 40s or 50s; they have to put the straw in my drink, fetch what I can’t reach, and help me put on and take off my outerwear. They’ve been there and done that, and they don’t want to deal with that, for someone who is older than first grade.

When I can take along my home attendant, it helps. But some people don’t want an extra person along. Furthermore, I have to pay my HA’s way, a hardship on my fixed disability income. So when this friend e-mailed me, I jumped. She is one of the rare people who will take me out, cut my meat if need be, and even deal with bathroom issues. But we had to choose a movie house within walking distance because wheelchair-accessible paratransit has to be booked the day before, and it’s not easy to get me and my foldable wheelchair in and out of her car. Pickings were slim in the immediate neighborhoods. There were lots of silly movies playing, but no thought-provoking fare. So I picked the lesser of the evils, a film called “Definitely, Maybe” because the TV ads were cute, and featured Abigail Breslin, who was adorable in the title role of “Little Miss Sunshine”, one of my favorite quirky films.

Well, it delivered as promised: a silly romantic comedy where the girls were cutesy and glib, and had those fabulous Manhattan apartments in the right up-and-coming neighborhoods. For anyone who is not from NYC, or has never apartment-hunted there, these apartments do not exist anymore, so don’t bother looking. At one time, you could brave an “edgy” barrio, complete with junkies and bodegas, in the hope that your persistence paid off if you stuck it out [and lived] for the next ten years. At least in Manhattan, there is nothing like this anymore. And even when it did exist, no young person without a trust fund could afford anything without one or more roommates, and for a stair-climb below the third floor.

But I managed to enjoy this movie. The two quirky love-interests, played by Isla Fisher and Rachel Weisz, weren’t gorgeous. And the guy, played by Ryan Reynolds, was cute, but by forty he would look as tired-out and world-weary as any guy you know.
But the part I liked most about this film was the time setting. You see, the main character moves to NYC from the Midwest to work on the Clinton campaign. By the way, that’s Bill, not Hillary. Yes, think back to the presidential campaign of 1992, which was an unbelievable 15+ years ago. Remember when we all wanted change from Bush? Does this sound eerily familiar? I remember it well, but what I really remember vividly is where I was the night of the election.

On that Tuesday night in November of 1992, I was watching the returns in the lobby bar of the Pier 66 Hotel in Fort Lauderdale. I had to get an absentee ballot when my boss at Cayman Airways told me I would be out of town for a sales blitz. I was Northeast USA Area Sales Manager, and I knew this trip would be my last hurrah with this company because they announced they would no longer be flying non-stop out of New York. So it was a time of change for me too. In fact earlier that day I set up an interview with another company by phone; I would meet with them when I returned home to New York.
What was so momentous about that night in the Pier 66 bar was that I was the only one happy about the outcome. My bosses were all staunch Republicans, and this was terrible news to them. My immediate director kept insisting I would keep my job, despite closing up the JFK Airport operation. But I didn’t trust that. When I found a job with another airline, I learned that they never hired anyone in my place.

I remember where I was on Bill Clinton’s Inauguration Day. Now a sales manager with a Chilean airline, I was making a sales call to a travel agency owned by an Ecuadorian immigrant. She had brought in a TV that day to watch the swearing-in of a new president. She felt, as did I, that this was a new era for her adopted country. We both watched William Jefferson Clinton take his oath of office amid a feeling of hope and optimism.

In the film “Definitely, Maybe” the scene jumps to 1994, and then the Monica Lewinsky affair. By then, I was a sales manager for a hotel chain, and I remember sitting around with my colleagues discussing this scandal. There is also a scene from the movie where the couple is listening to Kurt Cobain, and then she gives him the sad news some time later about Cobain’s death. I can recall sitting with those same co-workers discussing that death. For me, the optimism and change represented by those Clinton years was so real. As I write this, it doesn’t look as if Hillary is going to perpetuate that legacy. We are once again anticipating an era of change, albeit not with a Clinton in the White House, but with Barack Obama. Once again, I am hoping for a change from Bush, this time the son. “Definitely, Maybe” transported me back to a time of hope and optimism. I want that feeling again. I am hoping November’s election can give us that.

blood pressure, movies, blinds

ferncohen.com
I have been taking my blood pressure faithfully every day. Despite the 25mg of toprol daily, it still stays at 155-177 over 90-120, which is a potential stroke-in-the-making. I have been trying not to eat junk, and we even cut down on my tube feeding formula. I went with my aide to the grocery yesterday and bought low-fat yogurts to snack on. It’s so tough to get the weight down when you can’t exercise.

This weekend was a long one for the working people out there. So on Sunday Louise was able to take some time, due to the extra day to do errands, and we went to the movies to see “Definitely, Maybe”. It wasn’t my first choice, but I limited myself to the two theaters within “walking” distance [i.e. not needing Access-a-Ride]. Anyway, I’m not a fan of romantic comedy, but this film takes place in the Clinton years, particularly 1992, 1994, and 1997. I know exactly where I was in those years, so it all brought back memories for me. And it means so much when anyone takes time out to get me to Starbucks or a movie, or anyplace outside my four walls. I am never alone, because my aides are always here, but companions to go with me to the mall, to lunch or dinner, coffee shop, the movies, are special. Without that, I can certainly keep myself occupied and even amused, but I am limited to my apartment, which needs improvements [see last paragraph].

I had a triumph this week. For months now, I have not been able to shower or wash my hair. I have been using dry shampoo, and doing sponge-baths with a product called “No Rinse” which I now come to find out is not for long-term use due to the fact that it doesn’t slough away dead skin cells. Therefore if I were bedbound, I would be more prone to bed sores. Anyway, that dry shampoo could never take the place of water and shampoo, and my scalp was always itchy. A couple of weeks ago, I convinced one of the aides to let me get into the kitchen with my wheelchair, which just makes it but if I’m not careful it scrapes the walls [ the walls are a mess, by the way]. And we managed to get my head close enough to the sink that she could use a pitcher to shampoo my hair. But it was a mess, because I couldn’t get my head over the sink, so there was lots of water on the floor, and my clothes got wet. Well, yesterday, after 10 days of no hair-cleaning [I really hate that dry shampoo], I found a better method. I found that I was able to stand while holding on to the sink long enough for the aide to shampoo my hair while my head was totally over the sink. It was fast, it was easy, and now I have clean, shiny hair for a while. Now if only I could get my body into the shower I would be very happy!

I heard that my fellow patient, Mark Nurse, was in the hospital with pneumonia, but he is recovering at home. His wife, mom, and aunt took turns staying with him at the hospital. An ALS patient should never be left alone in a hospital, especially if he can’t speak. I learned this when I was in the hospital having my feeding-tube put in. Nobody knows about ALS, and I had nurses yelling at me, and talking around me as if I couldn’t hear or understand. Even though I had a sign over my bed that said that I could communicate with my writing board, my board had been moved out of my reach, and it was horrible. So an ALS patient must have someone there at all times that knows the disease. Next time I land in a hospital, I will make sure there is someone there with mr always, even if I have to pay my aides out of my pocker!

On Friday, I had my reassessment interview for Access-a-Ride. I was interviewed by a psychologist. Did they think ALS is a psychological illness? Anyway he kept asking me how far I am to the nearest subway station. I said “it is not accessible, so why are you asking me?” He said “just tell me where it is, and what the name of the stop is”. Then he kept asking me for the names of my medications. I pointed to the part of the application where I listed all my drugs. He said “Just tell me the names of your medications. I want to see if you know what medications you take”. Maybe I should have played dumb.

Oh.I forgot something very important. My neighbor Lisa and her new husband Barry treated me to new venetian blinds, and Barry put them up for me. Thank goodness! There are so many other small improvements to make, like moving things around, hanging pictures, and new area rugs, and it frustrates me because I can't do it. So I am at least very appreciative of the blinds!!! The other stuff, well, I'm sure I can figure it all out...