Note from compiler, daughter Julia: This is my father’s notes, gleaned from his Tobii eye tracker, on living with ALS. He reflects on his thoughts, from diagnosis to his final day, getting more detailed over time. 

As you will see, he sounds perfectly healthy as he explains things, even tragically when he is outwardly unable to speak anymore, or even lift his head up. 

I have also added some things in brackets [ ] within the text, for clarification when it felt necessary.

Dov: Journal on my ALS

In July 2019, a few weeks after turning 72, my left hand was having trouble typing. One Sunday on a beautiful beach day with my daughter, Julia, we pulled over along the Pacific Coast Highway. Uncle Mark [a neurologist] called to say this is likely something serious, you need to have tests done yesterday. This scared me deeply, and was the marked start of bad tidings, from the belief that it was just carpal tunnel to something more.

As it got worse, I went in for testing. 

On October 17, I was diagnosed with ALS. We were still able to go to Spain. [with wife, and two daughters. it would be our last trip; my dad loved to travel]. 

By November, I was having trouble buttoning my shirt and tying shoes. I was still able to type, walk, and drive, and I was still working. December 22 was the last time I drove. 

[It was to a donation center with me as a passenger, to clean out the house of clutter for future wheelchair access. He was using just his right arm, as the left was powerless]. 

The next two weeks I took an uber to the office for the following two weeks, until it was too difficult to continue. On January 31, 2020 when I was honored by the city council, I could still walk and talk. [Dad was too humble: he was honored for 46 years of service working for the City of Los Angeles as a lawyer, untangling conflicts and bringing people together. All he asked was for California to do more for ALS research]

What comes next, to continue the analogy, is phase 4. Phase 3 can take, until running out of fuel or something happens for us that something was ALS. The symptoms started in July 2019 not long after my 72nd birthday. I was officially diagnosed in October, but was still able to travel to Spain and continue to work, drive, and in general continue with my life while compensating for the left hand. In early January 2020, life changed and phase 4 began. This rocket is falling, we are waiting to see how much time before the crash. 

I was able to walk and talk on January 31 at the city council and my retirement lunch. 

By late March, the downstairs bathroom ADA accessible construction and the outside accessible lift have been completed and I was able to be moved downstairs. I knew it was to be the last time I would be upstairs. [After 36 years living in that house and sleeping there. He stayed upstairs for 2 weeks, living in that bedroom and on his computer, while his right hand slowly failed, the left already gone, and his legs already unable to carry him upstairs. He ended up being carried downstairs, finally. This was the week before the March 2019 Covid-19 lockdown began. This was also when the first caregiver, full time, arrived.].

It took a while to adjust but turning the den into our bedroom has some advantages. we have a fireplace and double doors leading to the patio filled with flowers and the papaya tree that reminds me of my trip to Vietnam two years ago triggering cherished memories of my trip with Julia, the drawing of two tango dancers reminds me of Buenos Aires with Rachel [youngest daughter], while photos of travel with the kids adorn the mantle.

What follows is the deluge. 

By March, I was in a wheelchair and had a caregiver. I could talk and use my right arm. I was awake much of the night so I sued the time to organize talks on saving and investing. Financial freedom and tracking areas of the Torah that troubled me. During the day I wrote them down, in June and July, with my voice getting weaker, Ben and Christian, my weekend caregiver, would videotape the talks. 

[link to his Financial Freedom Videos, which he made the last 6 months he could still talk. My dad was not one to sit around doing nothing, lol. As his voice failed, he kept making them, I kept editing them as his voice grew weaker, like a time-lapse of the ALS taking his voice from him. You can also learn about his passion for helping people save money ;). https://www.youtube.com/channel/UC6J_mGI0S7cEnKpz7rF_zsA/videos ]

By then I could not feed myself nor use the computer. As summer dragged on, my voice got less understood. I could not continue with the videos. In august, we had a change of caregiver. I was still able to communicate. This made for a smoother transition. I could still talk a bit, which was beginning to be grunts for yes, no, ow, and other noises. I could speak enough so that they were able to type my emails. By October, I was barely understood except for grunts coupled with glances. We were approved for an eye tracking device called tobii. It took a while to arrive. Meanwhile, glances were my link to the world. This was the case for weeks.

One of the results was that assumptions about how I was feeling became the norm just as we often do for animals. It was like I was invisible. The differences between people are so interesting and varied. Especially in the way they relate to me. They will ask if I want this or that which cannot be answered by a shake of the head. Or ask several questions and by the time I answer it's unclear which question is being answered. 

I sometimes feel like this is a bad dream. In my dreams I am healthy. I try to accept my situation and not dwell on feeling cheated of my retirement with mom and more and better travel with my family. This is especially bitter as we have the means, finally. I also feel robbed of my hope to teach finance and Torah. I try instead for 72 good and ever better years, of your mom, my wife of 36 years and the years god gave primarily for the three of you. I have darker thoughts that I don’t voice. Mostly it becomes getting by day to day, and week to week. Each day in which I drink enough and each week that I poop are good.

The three of you are a gift. 

By January 2021, my voice was completely gone and my legs were getting weaker. I have not been able to stand unsupported for a long time, but it is now more difficult. My neck is getting weaker which is making it difficult to use tobii and to eat while sitting in the wheelchair. The bigger problem is my increase in inability to chew. As a result, my food must be of a consistency that I can swallow without chewing. It’s hard to believe that a year ago I could still walk, talk, and feed myself. 

The saliva, it’s thick and plentiful and keeps flowing. It reminds me of the saliva of a giraffe. So voluminous and sticky. So now I'm a giraffe. Aside from the annoyance of constant saliva, the volume made it difficult to chew at first and by February it was almost impossible. So my food by February is of a consistency that I can chew a little but can swallow without chewing. Suddenly in a few weeks my world of food shrank. No more pizza, asian or persian food, bagels or roast chicken. My meals were scrambled eggs, oatmeal and everything else one step above mush. And to make matters worse, it is taking me an hour or more to eat each meal. We are now considering when I am getting a tube to bypass the need to eat. 

One of the more interesting aspects of this experience were the caregivers. Each has their own unique perspective and personality. With one exception they seem to share a common trait that they move slowly in a shambling walk. Every action is at slow speed. There is no rush. What is also interesting is how they have side gigs and are good businessmen. Their income funds property back home since in one or two days they can make a month salary. But having every aspect of life controlled by someone else is challenging, frustrating, and not pleasant in the least. And they often forget things and all I can do is make grunting noises until they hopefully remember. 

By January my grunts were growing weaker and I was relying more on glances. On february 1 we got a new caregiver,  in a short while I could not raise my head as my neck weakened. Now it was difficult to glance as well. 

By late february with my inability to hold my head erect led to other effects such as difficulty in eating and using tobii  and sitting in the wheelchair when watching tv or going on a walk. By the end of february I had to abandon the wheelchair and its relative freedom and ease of being stood up. 

I was now in the power chair. Physically and psychologically I felt more debilitating. I was now entering into a new phase.

One aspect of als involves the caregivers. every aspect of my life is now in the hands of someone other than me.  it is difficult to get used to. it was more tolerable when I could talk. now my grunts are almost inaudible and because I can't hold my hand up it becomes difficult to glance and be understood. 

This inability to communicate has sharpened the differences between my caregivers. 

At the beginning of February I got a new caregiver for the middle of the week. I was still in the manual wheelchair, able to hold my head up and communicate with glances. by mid February all that changed and the differences in my two caregivers came into greater focus. 

My weekend caregiver, if I glance or grunt, makes an effort to determine the problem by asking yes or no questions and trying to figure out the problem. He talks to me, asks questions like if I mind him listening to podcasts and whether I want to listen. He notices whether my hands or feet are in a good position. He cares. 

The new caregiver is very different. instead of asking and trying to figure out the problem, his response is "" I don't understand " and walks away or continues what he's doing. If I'm next to Tobii he will say " write it" even if it's obvious that the problem is that I can't type because Tobii is not positioned right. His other favorite expression is "what do you want me to do "  rather than asking yes or no questions. yet another in " it looks fine to me "  

without warning he stuck a breathing mask on me last week. He sticks the suction device in my mouth without warning or asking me. His rationale is " I'm doing it for your own good. " 

He does not take the time to ask or observe what could be the problem. I figured this would change as he worked with me, if anything it is getting worse.

for weeks I have been trying to explain. some things have improved slightly. for example, he tilts the  position of the power chair a bit sooner. but he still never asks if I need to pee or ask questions to determine the source of my discomfort. otherwise, technically he is a competent caregiver. He also can be charming and funny especially when others are around. 

but I realize that he won't charge. The reason is that in his view I am someone or something he takes care of, and he knows best  any opinion or want on my part is viewed as a distraction and is a demand on his time that impinges on his time to text. I could go on but I hope you get the picture. 

In mid March I got a feeding tube. He started lobbying for it almost as soon as he got here, trying to scare us unless I got one. 

It generally took over an hour to feed me. The feeding tube makes it easier for the caregivers. 

but the greatest impact of his actions, as frustrating as it is pales beside the mental effect. especially with the feeding tube, he now has almost complete control over feeding. this cumulative shift in control diminishes me. I was slowly coming to terms with the reality that I am still me but trapped in a body over which I have less and less control. however I could still communicate my wishes and desires whether by Tobii, grunts or glances. This makes me a person. 

It's a struggle to keep my spirit up especially when on top of that my caregiver increasingly does not acknowledge me. This is now getting worse. Last night after eating dinner, I was sitting watching tv when the caregiver came over and shoved nutrients into my tube. Mom and I were shocked. his response was that it was necessary because of my weight loss. indeed when I was weighed at the hospital I weighed 116 lbs. my previous weight was 165 a year ago, but I felt like a goose being force fed for foie gras. The goose has as much choice as I have. 

The following morning was a repeat of sorts. He was going to give me my als pill through the tube rather than orally, however without asking or telling he poured in Nutrient as well. amazing how outrage doesn't register when you can't vocalize. When I finally got to Tobii and reminded him that it's not to be taken with food but rather an hour prior to eating, his response was that meds should be taken with food. 

 I could go on but what's the point. he is competent though and his actions I'm sure are in my best interests. it's the manner and attitude that is the issue. I feel that I am in an ever narrowing chamber and the importance of my needs being dissolved slowly like watching water dripping and dissolving stone as my resolve melts and resigns itself to this new reality.

The saving grace is that mom notices and that she is on my side. The second saving grace is our weekend caregiver. they and the three of you are my lifeline to sanity. 

In addition working on this memoir and Torah thoughts, is what keeps me going. 

The new caregiver is not a bad guy. He has been here almost two months and getting better. at least I think so. I want to believe that to be the case. His good qualities are that he is competent, has a sense of humor and gets along with mom. and he is frugal. 

Between being frugal, getting along with mom and sounding knowledgeable even when he's wrong, mom defers to him. From his second week here he lobbied for a feeding tube and warned about food getting into my lungs and me getting pneumonia. He loves drama to show how knowledgeable and irrepressible he is. of course left unsaid is that it cuts feeding time from an hour or more to five minutes. as a bonus it removes any control I might have had and gives him full control. 

He is also lobbying for it to be catheterized at night. I have no doubt that in a short time afterwards that catheter will be for daytime use as well, saving him from responding to my need to pee. like a country waiting for an incident to invade its neighbor, he will wait for an incident to use the catheter during the day. 

The walls close in mentally and physically. I realize this is inevitable. 

The day after the g tube surgery I ate a big breakfast and dinner supplemented by two containers of Nutren and water injected in the g tube with no ill effects. The same was true for the next few days. Wednesday night a week after the surgery I was given a large bowl of soup for dinner followed by injections of water. The inevitable result was I peed all night making a difficult night for mom and me. A perfect opportunity for the new caregiver to lobby for a catheter .

Thursday night we ordered in Indian food. He took huge amounts for me including from the spicy dish that he fedb to me, causing terrible coughing. This opening was quickly exploited as proof that I shouldn't be eating anything at all. 

In addition he injected even more water to exceed 1.5 liters for the day and once again lots of overnight peeing. 

It is a difficult situation. 

I worried that mom didn't realize what was going on but I am relieved to know that she sees. He is unrelenting in pushing his agenda. At the same time he is competent and we need him. 

and I suspect that it's only a matter of time before I won't be able to eat and will need a catheter. but I would like to put those off as long as I can.  

I should stop but this weekend brought into sharp focus. The nurse who teaches the use of the g tube said it's best to allow the formula to go down by gravity. The new caregiver prefers pushing because it's faster. His rationale was that it's safer as gravity makes the water go faster. 

every Monday I harbor the hope of change only to be disappointed. this morning without asking or warning he poured the feeding solution down the tube. 

I need to vent. He is  not a bad guy and is competent. The problem is he generally treats me as an object and talks at me rather than to me. 

I don't want to burden mom with this. She has enough on her plate. 

So this is my outlet. 

Every other caregiver has exercised my arms and legs twice a day. The new guy exercises me once or twice a week, but adds a leg and arm massage once or twice a week. 

He keeps me in the folded position while he tidies up rather than tilting the chair to make me comfortable. I think he is improving though. 

I count the days to the weekend to feel like a person. The three of you help as does mom. 

Increasingly I hear discussions and decisions going on without me. I understand, but at times it increasingly feels like I'm fading away. I know it's not intentional but it's a strange experience like I'm slowly fading.  Maybe it can be a film - the vanishing man. 

But I have hope sustained by this belief that people can change.

Friday morning I ate  breakfast of scrambled eggs and a mashed banana. The rest of my meals were through the g tube. On the weekend I ate two meals each day plus nutren, 

Monday. Over the weekend I got used to being treated like a person who has an opinion about his needs and wants. 

Monday I am reminded that doesn't work during the week. 

He is not a bad guy and probably is doing what he believes is best for me. Perhaps he is unaware that he treats me as an object, or that is how I feel in response to his actions. 

When we were in the dining room he and asked for breakfast, I got a lecture that eating was dangerous to my health as I could aspirate and even showed me the definition, and that it's for me to stop eating. Instead it was best to get all food through the g tube for my health and well being. He then proceeded to pour a container of nutren into my g tube. 

I was not happy. After several minutes of silence, during which he was on his cellphone, I again asked for breakfast. His response was that if I aspirated he could be held responsible. It was not only when mom showed up asking why he was not feeding me that I got breakfast. And yes, I did cough, but the tradeoff was worth it. At some point I will stop eating. I know that as well as I know that he is right. I want it to be my decision. 

Remember when I wrote about negotiations I said to think of it as a dance and the other person not as your opponent but a  partner and to enjoy the dance ? I am trying to apply the same principle here and enjoy the dance. And as in negotiations when the stakes are high that is when this is most difficult and most needed. 

The new caregiver does massage my arms and legs. There is a price to be paid however. Previously I always got three showers weekly and one on Sunday. Now I get a massage on Monday instead of a shower, and last week I was given a choice between a massage or shower on Friday. The result was that for the first time I had only one shower that week. Plus Sunday. 

Mom and I are trying to set up a schedule to address this. It takes both of us. 

It's almost like playing chess, plotting moves. 

This was open to solving, the challenge is changing attitudes. 

His favorite phrases are "i don't understand. " And "it looks good to me ." 

In the shower he doesn't communicate so I never know when water will be dumped on my face. 

This morning he shaved my stomach. Surprise!

My hands and arms are unhappy come Monday, knowing that for the next five days they will be placed in tortured positions and my arms hung over the sides of the shower chair and wheelchair like salami in a deli, cutting off circulation. 

Or hanging like the Iberian hams we saw in Spain. 

He is frugal though, a trait near and dear to mom and my heart. But even that can be overdone, in the words of your bubie, " der 'tzie' toug nisht " that is too much is not good. The previous caregiver would go through a dozen or more napkins in a meal, now it's only one but my chin is wet throughout the meal as it sits in a wet goop like a pig in excrement and mud. 

The homecare nurse who came after the g tube was inserted to teach about feeding and care recommended  one litter of water daily. This caregiver questions whether she is a nurse or knows anything. His medical option is that I need at least  1.5 litters a day. That leads to lots of nighttime peeing to which the answer is that a catheter is the answer to our problems. 

There is no end to his medical advice. When my right leg didn't bend when getting me out of bed, mostly because the knee was still on the bed and couldn't bend, he told us authoritatively that I must be on a strong prescription muscle relaxer. 

Since the g tube feeding I have a slight case of diarrhea. His solution is an enema, mom went on line to discover that this is a common side effect. 

It goes on and on. No reason to bore you. 

What a life. I often think that it's not really happening to me. 

Since Monday I have been eating one meal a day. Plus three containers of nutrition via g tube. 

Thursday morning the caregiver gives mom his pseudo medical option that I shouldn't be eating anything or I will get pneumonia and have to go to the hospital. Mom and the caregiver decide that I shouldn't eat from now on. I am laying in bed helplessly as my fate is determined by others.  

My life. This question is when is life still worth living. I used to enjoy life. I have been blessed with a wonderful life notwithstanding its ups and downs. 

Everything in the world is miraculous and interconnected but  still it is often difficult to imagine or believe that there is a god in part because god is hidden from us and in part because there is so much pain and suffering in the world. 

My question is when is life still worth living. All my previous life I have been independent to make my decisions, good or bad. Now they are being made for me, even if they are for my own good. 

I'm not unmindful that many people live their entire lives in horrible circumstances and yet choose to live. Even with this terrible disease I am arguably better off. 

Less than two months ago I could hold my head up, make audible noises, use the manual wheelchair. Stand with support and enjoy eating. Plus I felt that I had some measure of control over my life. 

I am not asked what I want anymore. Decisions are made by others "for what's best for me " 

It's getting to the point where I don't know what I want.  I am being worn down. And truth be told it's easier to skip eating. 

To which Ben made a good observation if I carry a grudge that would not work, only he said it better. 

Thursday still. No breakfast, no vitamins, no coughing and no wet chin. We can save on napkins and bibs and the caregiver doesn't have to interrupt his texting, swiping and games on his cellphone to feed me. 

My grunts are almost inaudible and because my chin rests on my chest, I can't readily communicate my thoughts of needs. I sometimes feel like a dog gazing up at a human, with the same inability to communicate. 

How long I have to eat is ultimately a function of my ability to swallow. I am already unable to chew. It's just a matter of time. 

But if I want to eat I will have to suffer through a lecture on how this is terrible for my lungs and how pneumonia killed his previous client who was too stubborn to listen. I know that soon I will have to stop eating but not quite yet. 

What will convince me to forego eating food is that I am losing my sense of taste, and the pleasure of eating will be gone. 

Indeed on Friday I suffered the scary lecture, and almost decided that it wasn't worth it, especially when he ended with "but if you still want it I will make your food". But I proceeded and had my eggs. There of course was some coughing, which elicited comments about my poor overstressed lungs. 

But I'm glad I ate the eggs. 

On shabbat [Saturday, Jewish Sabbath] I ate nothing. It was Erev Pesach [the night when the holiday starts] and it was easier. Sunday morning I am debating whether or not to eat. It is dawning on me that it is easier to forego eating food. 

Saturday evening we celebrated the seder. The kids were all here, as were Paul and Chris. Mom made a brisket. The kids conducted the seder [Holiday evening]. I contributed a Dvar torah [Like a Jewish opinion article about parts of the text] on miracles and one on slavery . Despite not eating and the occasional pang that I couldn't eat, it was fun. It was also a window to a future and a glimpse of how seder might be celebrated by my kids in the future. 

Not traditional but clearly a lively seder. 

Initially, with no voice and not able to eat, I was concerned that I would be invisible looking in, but I was pleasantly surprised that I was made part of the seder. 

I am getting two showers mid week and one on Sunday. Previous caregivers have always given three mid week. Instead, one shower has been replaced with a massage for my arms and legs. The massage is great but I miss the shower. 

I don’t know why I miss the shower. He doesn't talk to me so I get no warning for example, that I am about to get a face full of water . 

If once again I could go on but what's the point. I do need to ask him to give me a warning. Some of these things are solvable . 

I also need to talk to him about arm and leg exercise. All other caregivers exercised my arms and legs once or twice a day. Now, except for the weekend, I am getting exercise once a week, not counting massage. Once again, solvable 

In spite of these complaints, I am getting to like him. 

Existence is from day to day and week to week.  Basic survival. 

Respect. On the weekends I am spoken to, rather than simply spoken at, that is when I'm spoken with. 

The weekend caregiver is patient and caring. He asks me what I want especially when I am feebly grunting and glancing, he honestly wishes to understand what it is that I need, even though it may require multiple questions. 

.Mid week the caregiver is slightly better. He recently has been asking some questions before declaring "i didn't understand ". 

But I have hope that it will get better. 

On the weekends I am treated as a person. Mid week like a patient. 

Monday. I'm back in hell.  

In her update mom mentioned that I ate on the weekend, which subjected us to a lecture on how this is terrible for my lungs and how pneumonia killed his previous client. Included was an implied criticism of the weekend caregiver and mom for allowing it. 

Mom is caught in the middle between allowing me to eat and trusting that I will know when to stop and the fear and guilt being directed at her. 

I know better than to start the week asking for scrambled eggs. 

Mom did a great job of propping up my head and supporting my neck. After the new guy moved me around my neck was unsupported, but he didn't get it. He plopped the tobii in front of me. It was not well positioned, I typed 'neck'. His response was " what about the neck? " I was forced to add the word ' support  ' while he texted. I realize this may seem petty but to me it underscores the difference between the weekend and mid week. 

When mom expressed surprise that the shot didn't hurt the response again was if it doesn't hurt it's not effective and he wasn't joking. 

There is no communication. If I don't want something on his schedule he concludes that I don't want it at all 

For example one evening when I refused to take the als med he reacted with alarm that I am refusing to take this med and my als will accelerate, he assumed my refusal to be that I didn't want that med anymore. 

The reason why I refused it was that I had just finished dinner and that the med is to be taken two hours after eating. I don't always wait that long but that time was equivalent to taking it with dinner, which seemed not worth it. I tried to explain that this med was to be taken one hour before or two hours after. He doesn't listen. 

His latest medical advice was to address a small rash by shaving my pubic area. Mom was very diplomatic and told him that she would consult the doctor first. Needless to say, no shaving took place. 

Tuesday. Shower day. We are down to two showers from three mid week. I am sitting in the shower chair, which also serves as the commode as I am unable to use the toilet. I am about to pee. Did I mention that he doesn't talk to me or ask me anything in the shower. Just as I am about to let go, he removed the basin. I had to hold it in for the entire time. If it wasn't me it would make great comedy. 

Afterwards I got shaved, mom loves how smooth it feels. This caregiver prides himself on his skills with a razor, and I must admit that he has never nicked my face. But I get shaving cream up my nose and in my mouth. A horrible thought came to me. I wondered if this is what it's like preparing a body for public viewing in an open casket ,. 

In the dining room I mustered the courage to ask for breakfast - scrambled eggs and banana and raspberries . Scrambled eggs and banana and raspberries. I only enjoy breakfast and I don't know how much longer I will be able to eat so I took the plunge and braved what I knew would follow, the guilt trip of how I was ruining my lungs. What helped was mom telling me that she supports my decisions and like the weekend caregiver, trusts that I will know when to stop eating. 

By the way, I did not cough during breakfast nor on the walk that followed. 

Speaking of walks, those also are different between the weekend and mid-week walks.  On weekends it is like taking a walk with a friend. We take different routes and he asks me what direction. When we see something interesting I am asked if I want to stop and look. When a neighbor waives we slow down or stop. 

Mid week the story is different. We are on a preprogrammed route. We move at a steady pace. We stop for no one and nothing. Neighbors waive and are ignored. What used to be grunts are now inaudible sights at best. The walk continues on its set pace and preprogrammed direction. He only looks back at me once or twice to ask if I'm okay. Perhaps this what a self driving vehicle would be like in the future. You input coordinates and off you go. 

I realize it's in keeping with his view, which he expressed to mom recently. His view is that he knows what's best for me and decisions, including those as medication to be taken or to stop feeding me, should be made by the family and him, but not by me. Fortunately mom didn't agree, but it explains a lot. 

It is Tuesday night and eating breakfast didn't seem to matter to my lungs. However I may skip eating and wait until thursday to ask for breakfast again. 

Saliva, one of the unexpected  side effects of ALS is an overabundance of saliva. This has had two main effects, neither pleasant. The first is that it interferes with my ability to chew and taste. 

I am taking two types of medicines to stop or slow the secretions but neither seems to work particularly well. Two things seem to afford the flow of the saliva. The first is when I am laying down and my head is reclining. This also helps me sleep. I don't know how or why this is the case but I am grateful that it does. 

This second is strange. I noticed that when I am fully engaged in something such as writing these pieces, that the greater the effort and concentration the less saliva seems to be produced. Or so it seems to be the case. 

The second effect of the saliva is that I'm drooling, and my chin is not only wet but because my neck is weak, my chin spends a good deal of time resting in a puddle of wetness, 

In addition to the saliva there is the mucus to contend with. It sits in the throat and periodically causes me to cough and sometimes to choke, especially when I am laying down and my head is not raised sufficiently. 

This problem has engendered two fixes. One is that the caregiver has me on heavy duty mucinex which seems to help. The other is using a machine to suction the mucus from the throat. This involves shoving a long suction tube down my throat. It helps suction out the mucus. 

Mom, who was initially skittish about using the suction has become pretty good at it. It is not easy to stick a wand don't someone's throat, especially when you love them. 

Ps - I noticed that on a walk, if I keep my mouth open especially in a breeze, it reduces the saliva flow. 

Rachel returned to Israel this morning. It is Wednesday, the last day of march and the middle of Pesach. I will miss her. 

Ben and Yan are up north. Yan is moving to the silicon valley for work. Ben will end up spending time up there as well. I will miss them. 

Julia makes a point of visiting and spending time with me for which I am grateful. Each of you and mom mean so much to me. 

Mom has not had it easy. The few things I used to handle are now on her plate. She also had to purchase cemetery plots, made more difficult when it's not for a use sometime in the distant future. 

And then there is everything mom does for my care. She is both nurse and administrator, looking after ordering supplies and equipment, hiring and overseeing caregivers and their payments and on top of that looking after me as my caregiver through the night. From 10 pm until 10 am the following morning. 

The previous caregiver turned out to be a piece of work belittling mom and traumatizing her. It was a horrible time and he had to go. Even with the ups and downs of the new caregiver, and my complaining, it is so much better. The previous caregiver verbally abused and bullied mom. The effects and stress on mom manifested itself both psychologically and physically in increased tremors. 

The effects are finally starting to abate .

It's at night when mom really shines. She is my caregiver for twelve hours a day. I am more relaxed during this time. 

I wake her several times a night because I need to pee. She is always caring, patient and never resentful and I can feel her love. I am so fortunate to have her as my wife. 

Wednesday mornings start with the clanging of the garbage trucks going down the alley. I look forward to the noise because it tells me that half the week is almost over. It's strange, the things I look forward to. Previously I looked forward to Wednesday because mom and I would have breakfast at Il Fornaio. Now it's the sound of garbage trucks. 

This caregiver made a big deal that he was going to exercise my arms and legs. All other caregivers did this as a matter of course every day and often twice a day. Now it's once a week, but in fairness I get massages. 

In the afternoon my mouth and throat were dry and I requested a small bowl of banana and raspberries. Amazingly I got them without a lecture about my poor lungs. Maybe mom spoke to him. 

Oh, did I mention that the arm and leg exercise takes less than 15 minutes. 

It's now Wednesday afternoon, only two days left in this week. 

Thursday April 1. Massage. Julia came over and we listened to live music played by Ulf from his parents ' home in Germany [Julia’s partner, professional musician/composer]. What a treat ! It's also amazing technology. 

There's a slim possibility of rain, enough reason for no walk. I am so bored. Even writing is not alleviating the boredom. 

One of the joys of eating, even most of the taste was gone, was something to do " now meals take three minutes. It's great for the caregiver, who can spend uninterrupted hours on his cellphone. 

Life goes on around me ,and I can't join. I have never been "that guy" before. Now I'm that guy in the wheelchair, 

Yes. I'm feeling sorry for myself.

Friday. Shower day. I am transferred from bed to the shower / commode chair.  Without another word I am rolled into the shower. The water is turned on. I am not asked if it's too hot. Nor am I warned before the water hits my face. I am not asked whether I need to pee or poop. As a matter of fact I am not asked or spoken to for almost an hour. When I drop a poop in the shower he washes it down the drain, never asking if I needed to poop more. 

After the shower I am transferred to the wheelchair ., Dressed, lotioned and brushed, all without a word spoken to me. Not out of malice or anger. Rather as if there were no need. I am an object and his job is to clean me, feed me and keep me safe. I wonder whether he is conscious of what he's doing or that it makes me feel like I am being treated as an object. 

I asked for scrambled eggs, banana and raspberries this morning. He should have been a jewish mother or maybe was in a previous life. His use of guilt is second to none. What's worse, he's probably right that it is better for me not to eat. 

The worst aspect of eating is the coughing. This morning I didn't drink. I had noticed that most coughing occurred right after drinking. By skipping the drink I eliminated most coughing. In the past I had no choice, but with the g tube I get enough water. Since coughing is the chief manifestation that I am ruining my lungs and inviting pneumonia, one could conclude that this is a big win for me in the great eating war. Alas, the pleasure associated with eating, when I can only swallow the food and the ability to taste it rapidly diminishing, this is becoming a phyric victory. 

Less than a month after the g tube insert, I am contemplating a complete cessation of food intake through eating. 

This decision is made easier as I notice a definite increase in coughing within an hour after eating. 

It's still Friday April 2 

We went for a walk. Just the caregiver and me. The usual route. We can walk for a block or two in that steady plodding gait without him looking back to see how I'm doing. It was breezy, and the wind blew my spit rag onto my face. 

We plod along as if following an invisible line. The only concession to potholes, if they are large, is that we slow down a  bit. We don't make any efforts to go around. The only conversation is whether to go straight or turn. It is such a different experience. 

I am still coughing hours after eating. This breakfast may have been my last meal. But it will be my decision and therefore no regrets or anger. 

Since I have been unable to chew I have been unable to eat any of my favorite foods for a while. The change from just swallowing to not eating by mouth should not be too traumatic considering the progression. 

Until yesterday I was anticipating eating on the weekend, now I am not sure !

I must give credit to the caregiver for suctioning the mucus all day, because I ate even though he warned me not to. 

It seems bizarre that I will be living on cartons of synthetic formula from now on. It's strange for mom as well. Up to now mom would make sure she brought my favorite foods, even as those were fewer and fewer. 

She is also feeling guilty eating in general, and especially in front of me. This disease has ripple effects beyond me that were completely unforeseen.

April 3 and 4 : weekends are much more relaxing, for me at least, but the effects of my ever drooping neck is more obvious from week to week. 

Sitting in the shower / commode chair or in this wheelchair when it is not in tilt mode was uncomfortable before, but is worse now. My chin is at a ninety degree angle to my body and resting on my chest. In this position I can't grunt, glance at something in an attempt to convey a need or want, or effectively shake my head in response to a 'yes' of 'no' question. If I need to cough the difficult becomes painful. 

Worst of all perhaps is the feeling of utter helplessness that engulfs me. This feeling of helplessness is magnified mid week since that caregiver doesn't communicate much, especially when I am in the shower chair. 

Not so long ago I could sit in the old wheelchair or in the shower chair in our bedroom and watch tv. Now when I am in the shower chair all I can do is stare at the floor. 

Monday, April 5  2021 . 

Eating food. This is the big change. After coughing all day Friday, it seems that giving up eating is probably what I should do. I haven't eaten food since Friday breakfast of scrambled eggs, banana and raspberries with some mashed prunes and vitamins. It now looks like a condemned prisoner's last meal. Had I known, I would have ordered the steak and fries. But wait, I am unable to bite or chew and barely able to swallow. 

Of course I miss eating. This 'tzim tzum' or constriction of what I can eat has been going on for some time. A few months ago I was looking forward to ordering in Persian or Thai take out, or even pizza and having the kids over. Mom even brought home the occasional sushi if she could. 

Slowly all that got struck from the list of things I could eat. Near the end food had to be mashed or blended so it could be swallowed without chewing. 

It didn't affect just me. For 36 years, when mom went to the market, she made sure to buy foods I liked. It was an expression of her love. Even with als, as long as I was eating something, she made sure it was stocked. Eggs, bananas, raspberries and prunes were always stocked, and cholent and ben's compote and even mango sorbet and caramel ice cream in the freezer. It was a bond of love. 

No more. It's as if a piece of us is gone. 

The other effect of my not eating is that mom is feeling guilty eating. And especially in front of me. Once again, this was a shared activity. For thirty six years we ate breakfast together, even though it meant getting up at 5:30  in the morning to do so. 

I've told mom that I don't mind, and like to have her eat with me, I understand how this can be difficult for her, but I really don't mind. On the contrary, I like sharing the space with mom and know that she's eating. 

Monday still. The caregiver arrives at 10:00 a.m., The starting time. Today is massage day. After exchanging pleasantries and mom has left the room, I get a lecture on how I'm beating up my poor lungs and not following the doctor's instructions about not eating and using the nebulizer, but, he says in a disapproving tone, that's up to me if I want to beat up my lungs.

During the almost two hours of massage and other getting ready activities there was virtually no conversation. Later we went for my daily walk. It followed the usual pattern and route. No talking. Almost a straight line, with minimal detours around only the largest potholes, my back and neck got quite the workout. 

I have been coughing all day and much of last night and yesterday. The caregiver ascribed much of the reason to the shaking and bad air quality. 

He was never keen on waks, and now a justification to avoid them. 

The incessant coughing does have me confused. 

I took a very long 'nap' which finally calmed my lungs for a while. 

I do have to be careful. 

---

(Notes from compiler, daughter Julia:)

This is the last of his writings. He passed away only about 12 hours later, Tuesday morning April 6, from Aspiration Pneumonia caused by The germs from food particles, saliva, infecting the airways in the lungs, causing shut-down. On the eye gaze tracker, when I loaded it, his last words were “haha” which I find beautiful.

Flowers were kindly donated to the funeral by our dear friends’ flower shop: “Flower’s Wholesale”. Help their business survive in these difficult times, by stopping by <3. 8032 CA-2, West Hollywood, CA 90046