My wife of nearly 48 years, your mother, sister, daughter, cousin, or friend is dying of amyotrophic lateral sclerosis. The person I have loved the most, hurt the most, and shared the most joy, the most challenges, and the most adventures with is leaving me – and I don’t want her to go. Phyl has been the center of our family, the hub around which our holidays and family events all revolve – and we don’t want her to go. She has been a good friend to many of you, some of you have known her for more than the 50+ years that I can claim – and you don’t want her to go. But for Phyl who is suffering emotionally and physically, who has lost so much – I think it time that we to begin to let her go.
As some of you know, the air hunger caused by poor (no) lung function has increased to the point that she is getting small doses of morphine most of the day to treat or prevent air hunger. While this reduces the anxiety of not being able to get enough air, it also makes her sleepy. She is sleeping much of the day and night. When she has visitors, she struggles to stay awake to listen to the conversation but after a while this makes her fidgety and anxious. Since she can’t talk and her hand movements are limited, she has difficult time telling us what she needs. We play a guessing game that seems exhausting to Phyl and sometimes she just quits trying to tell us what she needs. Sometimes she moans quietly (a few nights ago it went on for 3 hours) and we can’t figure out what is wrong.
My last note mentioned that we got hospice to come to the house and it seems that it was just in time. I needed the help and Phyl needed the drugs! The hospice nurse helped us treat her bed sores and the places where her mask straps were causing redness. Hospice also took over ordering all the meds, saving me the hassle of keeping track and all the trips to the pharmacy. The nurse visited 3 times the first week, 2 times the next and is now on a once a week plan. I also text with her almost every day and get responses within minutes about care for Phyl. This is working out….
But I’m writing now to tell you that Phyl is not doing well. She has not been sleeping at night (but seems to be fine napping during the day). Her communication ability has taken a down turn as those of you who have sent her messages surely noticed. Her right hand has little movement any more and although she was getting better using the head mouse to direct a cursor on the iPad, at this point her neck is too weak to use it to type. She is very frustrated. She can use the head mouse to open messages but not respond. This morning she asked me to read her texts and emails to her for the first time, as this was just easier.
Please do continue your texts and emails. I will read them to her. She can’t zoom or Facetime as it is too difficult. If you want to visit, please feel free to contact Phyl but please also copy me so I can schedule. I know the kids are thinking about a visit soon and you may get bumped for our grandchildren! Sorry….
The bigger problem is with her breathing. She has no lung capacity of her own. We can’t take her respirator mask off for more than 30 seconds. And for the first time, she experienced dyspnea (air hunger) with her respirator mask on. Fortunately, hospice had provided me with liquid morphine which settles her quickly. She had air hunger attacks about once a day last week but for the past few days they have been happening more often.
Morphine works quickly but makes her sleepy and coupled with the anti-anxiety drugs, she spends much of the day in a very unresponsive state. Yesterday she was able to interact a bit with a group of friends and then with family for dinner but today she is lethargic and sleepy again. Without the ability to communicate, it is a real guessing game to try to figure out what she needs; scratch an itch, reposition her legs or head, or rock her chair back etc. So she is pretty uncomfortable much of the time.
Phyl wanted you to know why she has not responded to your emails and texts. She also wanted me to share the attached article about the experimental drug she has been on. We really got lucky to get on the Amylxy trial because it is the first drug in 30 years to actually make a difference in the progress of the ALS symptoms and is far better than the one given previously. The attached article (pdf file above) is really about the two Brown University alumni that developed the drug but the “star” of the article is surely Phyl. Be sure and read the first and last paragraph anyway!
Also, when it came out Phyl’s favorite doc at UMass Medical (who we have been seeing for several years) wrote the following to Phyl….
Sound asleep… I feel, rather than hear a noise in the bed next to me as I awake abruptly to Phyl trying to get my attention. I pop up quickly and see her from the light given off by her ventilator machine. Phyl is pounding her chest…. the signal that she needs the cough machine. Running down the hall to find the cough machine which is still in the living room from yesterday’s use, I’m confused. She needs the cough machine so she is choking on her own saliva, but she has never woken up choking from sleep before. A new first… in 4 years of firsts. A new normal?
I must elevate her bed to a more upright position, remove her face mask from the ventilator, and hold the cough machine mask over her mouth and nose. Pressing the button to activate the forced air, her cheeks blow out like a squirrel with a mouth full of nuts and her eyes open wide in a look of surprise. Her chest heaves out as her lungs fill with air and then suddenly, the machine reverses and becomes a vacuum, drawing air out as she coughs to try to clear her throat. She nods and looks at me with expectation… do it again…. and once more I fill her lungs with air.
After a few of these violent breaths and coughs, there is a quick swallowing motion as she clears her throat of the remaining saliva, nods her head, and begins to relax. She is breathing again in those short desperate, chest heaving motions that say it’s time to put her ventilator mask back on. A smile of relief and her eyes get soft again. The fear that surrounds us both whenever she cannot breathe is released. Back to normal…..
It was only a few weeks ago that I wrote you a long email describing a typical day in the Gerber household. One thing for sure about ALS is that nothing stays the same. So this will be a short note just to let everyone know that we began hospice care today.
I’m writing to explain that while hospice often has the aura of imminent death, please be assured – that is not our plan. People on ALS have been on hospice for a long time. Since there is no effective treatment ant the disease is surely terminal, ALS patients qualify for hospice almost automatically. We decided we needed to take this step to help me care for Phyl. We will have a nurse visit regularly to keep tabs on her. Phyl’s good friend Sherri helped us feel more comfortable with the decision, as Phyl also had the impression that hospice meant “the end.” Phyl told me yesterday that “it is not the end… yet.”
But it is surely a big step. We are still planning on spending August at the same beach house we rented last summer in Rhode Island with our kids and grandchildren! I think hospice will increase the odds that we get there.
Of course, the wild card is COVID. With less than 10% lung capacity at this point, the chances of surviving the virus are pretty small so we are keeping her mostly isolated. At the same time, she has declared that she will not live her life in complete seclusion. She has had one or two friends visit at a time on the back deck, fully masked and 6 ft. away. Jeremy was here for Mother’s Day and we are hopeful that Jake, Shannon, and our grandsons will visit soon. If you want to visit, please contact Phyl (but copy me so I can help organize). Outside visits are preferred.
I apologize for the confusion around New Years Day phone calls. I know many of you texted Phyl to see if she could chat on the phone – as I asked. It has become increasingly difficult however for her to have enough breath to talk for very long. New Years Day was particularly difficult.
Here is what happened…..
Starting in October, Phyl went from using her respirator only at night to using it for a few hours a day. By the end of December, she needed her respirator on an off for much of the day. Christmas Eve was wonderful! She was off the respirator and engaged with our kids and grandchildren for several hours. It was great to see her smile! But she paid for it for the next few days and was not able to get off the respirator more than a few minutes (to eat quickly). I thought she was getting better by New Years Day but it was not so.
Things seem relatively stable right now. She wears her respirator all day and night except to eat and occasionally to chat with friends. Yesterday two of her friends took her to the Montague Book Mill for coffee and a chat. She says she was able to participate in the conversation for about 45 minutes before she needed her respirator again. This is probably the best we can hope for.
Over the past week she has been having lengthy back and forth “conversations” using text messages with several of you. She really enjoys this and is getting comfortable with her new iPad.
So this is how to communicate with Phyl (and I hope you will). Please send her a text message from time to time. You don’t need to say anything important (how’s the weather in Massachusetts is always a good question – and in a few weeks you can start asking about the Red Sox!). If you have the time, back and forth text messages work well. If you have the tool “ What’s App” is another good way to communicate. Of course for those of you who are local, she still loves your visits!
We are scheduled to visit her ALS Clinic next week where we will talk about what’s next. We are hopeful that she is able to stay on the Bipap (bilevel positive airflow pressure) respirator which is “non-invasive”, for a long time. If we can keep her throat and lungs clear, there is no reason we will need to consider the more invasive tracheostomy type respirator. That is major surgery and we don’t want to go there if possible. While communicating and eating is a bit of a challenge, we can manage life on the Bipap respirator. I worry most about Phyl feeling alone and isolated. Communication from you all helps keep her smiling!
Hi gang…. It is New Years Eve day and I’d like to ask you a favor. Would you give Phyl a call sometime tomorrow to wish her a Happy New Year? If you can…. please text in advance so she can let you know if she is able to talk and wait until after 10am (eastern time) as she often sleeps late.
I am asking because she is struggling a bit right now. We were supposed to go to a friends house for New Years Eve dinner tonight but Phyl is not quite up to it. Part of it is the weather and the difficulty getting into someone else’s house due to the steps. But mostly it is her general health. She is just getting over a stomach bug or something and then got her third urinary tract infection in 2 months. This has affected her breathing and her overall strength. And the cold weather really affects her. We are looking forward to seeing our sons and grandkids again at the end of January to celebrate Jeremy’s 30th birthday and then off to Florida for a month! It won’t be easy but it will be great to be warm!
In any case a short phone call (no long conversations) tomorrow would be great! Or just send her a “thinking of you” email or text! She is now wearing her respirator mask most of the day except to eat and for short conversations. Talking is difficult but she is loving communicating on her new iPad!
For me…. I’m feeling healthy and strong but tired as Phyl needs to have her legs moved for her a few times during the night to be comfortable, so there are no solid night’s sleep any longer. Still, I feel grateful for all that we have (family and friends mostly). I’m teaching my online classes which I can do while sitting on the couch next to her in her power chair (she is watching a video of our TWO granddaughters right now – the same video that Brian sent us this morning – over and over again)!
A few of you have remarked that it seems difficult for me… but it’s really not. I love taking care of her and when she smiles it lights up my day! What is difficult and sad is watching her struggle. I wrote an essay recently about the source of my own strength which if you have not yet seen it, here is is: https://changingthestory.net/2019/12/27/why-bother-with-god/.
In any case…. I’ll with you a Happy New Year and thank you for all of your support and love!
I asked Phyl to write a note to you herself. It took her several hours of painstaking hitting her IPad keyboard with a pointer – and she did it. I’ve pasted it into this email below. As her body continues to fail, she struggles to maintain her positive attitude. In her letter, I can feel the struggle. She wrote the following, just for you….
Dear Friends and Family…
Thanksgiving is upon us and it’s a wonderful time to reflect upon what we are grateful for. I know it might be hard to imagine that while dealing with ALS that there are things for me to be thankful for. I’ve had to let go of so much. In its place came an opportunity to feel the overwhelming love of family and friends. And it gave you all an opportunity to express it.
I am grateful for each and every one of you. I’m thankful for the walks around the neighborhood, the prayers, the outings, the problem solving to make situations work for me, the kisses and hugs, the food, the txt, the phone calls, my new bathroom (thx Dad), the chats on the deck (some serious and some hysterically funny) and the shoulders to cry on.
I am grateful beyond words for my incredible partner of 46 years, John. He is my hero, my rock! I couldn’t do this journey without him by my side. He has supported me with his love and his brilliance! He has done so much research that at times he knows more than the Drs! He is always ready and willing, with a smile, to help me in any way.
My heart is bursts with such love and gratitude for my amazing sons. They continue to give me so much joy and love every day. I count my blessings that they each have incredible partners whose love and support have helped them on this journey with me.
There is nothing that comes even close to the joys of being a grandparent! My heart explodes when I’m with them or thinking of them. They are the most precious little unique spirits. Our newest granddaughter, Lucia Tziporah Marine Gerber, was born on Nov 4th. I am so grateful that she is healthy and beautiful and a part of our clan!
I am thankful that there are machines and gadgets to make my life more doable. I’m thankful that I’m a slow ALS progressor!
This disease has made me “stop and smell the roses”!
I am thankful for so much in my life, but I am only human. I get overwhelmed at times with anger, sadness or fear. It is devastating to experience the loss of body functions as I have. That is why I continue to need you all to keep sharing your love and support!
Thank you all and Happy Thanksgiving!
Back to my words (John)….
It is hard to imagine that our journey with ALS has been going on for 4 years. Phyl mentioned that she is grateful that she is a “slow progressor”. In the ALS community, this is relatively rare. Most (about 75%) of the people who developed symptoms at the same time as Phyl have passed. I recently had to put this record together for a doc. Here is a summary of her disease:
Summer 2015 – initial trouble breathing while running
Fall 2016 – foot drop and weakness in left hand
March 15, 2017 – first diagnosis of ALS by a neurologist
August 28, 2017 – began Amylyx experimental drug trial at UMass Medical Center
February 2019 – respirator used over night to help with breathing
April 2019 – feeding tube surgery
July 2019 – began to use the power wheelchair regularly
October 2019 – respirator used part time during the day
At present, she has very little leg movement and some hand and arm movement. This allows her to feed herself and drive her power wheelchair around. We do regular stretching and range of motion activities in the chair to keep her muscles from tightening up. Her hands cramp up pretty badly if they are used too much but otherwise she can position herself to be comfortable in the chair and bed. She asks me to move her legs and feet regularly during the day and several times at night. This seems to work and allows her some comfort.
Those of you who have visited recently know that she needs to use her respirator at least part of the day. She can go for several hours without it so she can eat, chat and enjoy your company. She takes a breath and then is able to say a few words or a sentence and then needs to pull in another labored breath. But as soon as she is not active, the respirator mask goes back on. She wears it in the van while we drive as well. Although she can pull in a breath on her own, the respirator allows her to breathe more easily and sleep through the night. The next step would be a tracheostomy which we discussed with the docs at the Lahey ALS Clinic recently. Phyl has a difficult time thinking about this as it would prevent her from eating and speaking. She continues to hope for results from the experimental drugs she is taking. I do believe they have significantly slowed down the progress of her disease because she had several gaps when she could not take the drugs and I could observe a much more rapid decline during those periods. We have now stockpiled at least 6 months of the two drugs that I believe are helping.
Phyl does better when she has something to look forward to. Our current plan is to enjoy Thanksgiving and Christmas with family and then (hopefully) spend all of February in Florida. We’ve rented a handicap accessible house in Naples. After February, we have no long term plans but Phyl loves springtime in New England and she will direct her friends and some folks we will hire to bring her gardens back to life.
I think I mentioned retirement plans for me in a previous email. That has changed as UMass has asked me to continue to teach from home. I can teach my classes online from now on and still be available at home to support Phyl. So that’s the plan, for now. We have a health care aide who comes in three times a week to help out and we’ll increase her hours as needed.
As long as I stay healthy, we will keep on keeping on. I turned 68 years old last week (and sometimes I feel it). But mostly, I am grateful that I’m physically strong enough to care for my beautiful wife. I’ve been practicing living “one day at a time” for the past 20+ years through my 12 Step Program…. and it has prepared more than I could ever have imagined to be a caregiver. My prayer is that I”m allowed to continue to take care of Phyl for a long long time….
Elena is entertaining her Mom and her two Grandmothers with Jake and Brian in the background
Hello family and friends…. John again – reporting “from the beach.” We are spending two weeks in southern Rhode Island (we head home tomorrow) with family coming and going and most important spending time with our grandchildren! We are a few miles from East Matunuck beach, which is a state beach (cheap parking for us old people) and beach wheelchairs available which can be pushed on the sand, making the beach access possible for Phyl. Transfers from the power wheelchair to the beach chair take a bit of maneuvering (I haven’t dropped her yet) and then we push her down to the water and drop her into a chair in the sand where she can feel the sand on her toes and watch our grandchildren play. We’ve had at least one of my sons around most days to do the heavy lifting but I can do it if we are alone.
She loves the beach, even though it has been frustrating, since she can’t actively play with the kids. Her arms are too weak to dig holes in the sand this year and she is stuck sitting in her chair. Watching Noah on a boogy board both delighted and frustrated her as she always loved playing in the waves herself. Still, she can interact with the kids verbally (she has a microphone and amplifier to project her voice which is weak at times) and the kids often try to include her in their games. This is the third time we’ve rented a house in southern Rhode Island since Phyl was diagnosed and she notices the things she could do the last time and that she can’t do any longer. Last year she was walking slowly with a walker or hiking sticks but there is no more strength in her legs. She has an amazingly bright attitude and huge smiles especially when around Elena, Noah and Colin but then she may fall apart in tears when we are alone. It is heart breaking and wonderful all at the same time.
The house we rented has worked out – mostly. The ramps to get in and out are good but the bathroom is too narrow for us to get her to the toilet. We bought a bedside commode which works well and there is an outdoor shower that I’m able to get her in and out without too much trouble. As always, we make things work. Phyl has been accepting about all the accommodations and adjustments we have to make to get her from place to place but it is getting more difficult.
One night, we went to Providence with Jeremy, Sam, Belita, Brian and Elena to watch a Capoeira performance (a Brazilian martial art that Belita does – when she is not pregnant) and then Waterfire (a monthly event in which they light fires in the river). Lots of people, music, and celebration. We were having fun…. and then it rained – hard! Sam and Jeremy got Phyl to the pick-up spot in her power chair while I tried to get back to them with the van in a huge traffic jam. A kindhearted lady gave Phyl an umbrella, right out of the blue. It was a mess…. and we all got wet. But Phyl thought it was an adventure, even though she got soaked!
One evening we were on the beach for dinner (Food Truck Night in Narragansett) with Belita, Brian, Jake and the kids. Brian and Jake got Phyl down to the beach in a full body sling since there was no beach chair and I got her some amazing blackened fish tacos from one of the trucks. The clam chowder was great although Elean ate most of mine!
It was a nice night until Jake spotted the lightning. Brian and Jake threw Phyl in the sling and hauled her back to the power chair. We just got her into the van just in time, but I think Brian and Jake got wet. Phyl and the kids thought it was all great fun!
Last night Phyl took our sister-in-law Jen, our niece Corey, and our grandson Noah to a local summer theater to see Saturday Night Fever (nope, John Travolta was not playing Tony but it was a great performance). I took them to the theater in the van and helped Phyl navigate the accessibility ramp at the theater and get her into seat. Jen and Corey somehow got her out of the crowded theater after the show (without dropping her). They all had a blast, especially 7-year old Noah. When they got back, Jake, Brian, my brother Dan and I had prepared a lobster and sweet corn dinner for us all. Life on the seashore – Phyl loves lobster! I have to get the lobster meat out of the shell for her as she has little strength in her hands. Yet another small thing that she misses, but the lobster was wonderful.
Most days are less eventful. Before Jake, Noah and Colin arrived to spend a week with us (Shannon had to work) we were alone. We would have breakfast on our deck, plan our day together, often meditate, go to the beach to read (or meet up with Belita and Elena if Brian had to work), come home for dinner and hang out with a movie or reading at night. Some days would include a short trip to a farm stand or fish market. This is pretty much the same schedule we kept in Costa Rica and Aruba where we spent our last two vacations. After 46 years of marriage, we are happy just being together, reading and sitting on the beach but having the kids around was really special.
I loved getting up early (to work on my online classes) while Phyl slept. I would be greeted by Noah and Colin who always arrived early to have breakfast with me. Phyl would get up and have breakfast in her chair out on our deck and we’d plan our day. Yesterday we had a big gang on the beach with Dan, Jen, Corey, Brian, Belita, Elena, Jake, Noah, Colin and Belita’s parents who were visiting from Colorado. Phyl is in her glory surrounded by family. The best part of the vacation was having our grandchildren so nearby! Phyl always has a huge grin on her face when the kids are around.
Today we are headed to the beach one last time before Jake and the kids need to leave. We’ll pack up tomorrow and head back to our regular lives. My classes start soon. I’ll be teaching one class on Tuesday and Thursday afternoons on campus. Phyl has organized for friends to be with her at those times. My other work is all online, so I can do it from home. I mentioned previously that I’ll retire in May so I can be home full time. I suspect there will be a post-retirement appointment organized for me so I can teach a few classes online but it will all be from home. We have a caregiver come in three mornings a week now and our Long Term Health Care Insurance will pay for more if we need it. Phyl will stay busy because she has an amazing group of friends who take her places in the van.
We removed the front passenger seat from the van so Phyl can roll her power chair right in place and sit next to the driver. She is pretty independent in her chair as long as there are no curbs or steps. The power wheelchair is not as “zippy” as her mobility scooter, but the chair is more comfortable and can be put in many positions to rest her back and bring her legs up. She spends most of the day in her power chair (thank God for Medicare as the damn thing was really expensive)! And while she is on a respirator all night, her breathing is still good enough that she can get through the day without it.
We don’t like to think to much about the future, so we’ll keep living one day at a time. We know that no one can predict the future. The prognosis for anyone living with ALS is not good, but we know that a prognosis is not a prediction. Everyone who has this disease experiences something different. Most have a much more rapid progression. A few are slower. But it is always steadily toward less and less ability to control your muscles and we have certainly experienced the constant loss of ability. At the same time, we have gained much from of a community of friends and of course family who show up and share their love and help. We both feel blessed and know that many people with ALS are not as fortunate as we are…
Context: my wife, Phyl Gerber, was diagnosed with Lou Gehrig’s Disease on March 15, 2017. I was her primary caregiver while she experienced loss after loss until she died on June 15, 2020. The ALS community has shorthand for a person who is a caregiver for someone living with ALS. We are called CALS (caregiver for ALS) and the person with the disease is a PALS (person with ALS).
I was moved by an essay written by someone who served as a CALS for more than 10 years until her PALS passed. She wrote on our Facebook Group… “I found myself over the years of caring for my PALS thinking of the phrase, ‘the two shall become one’ and sadly smiling.” Her essay inspired me to share my own experience as a CALS for Phyl over 3-4 years on the same Facebook group which is exclusively for caregivers for people with ALS. It was written without naming Phyl because the group members don’t know her… so she is referred to as “my PALS”.
John M. Gerber
August 2019 (updated April 2021)
When first diagnosed, my PALS suffered anxiety, fear, a sense of loss, a feeling of being cheated out of a “normal” aging process, and deep, deep sadness. As a CALS, Continue reading A Caregiver Perspective→
This post is a celebration of the community of family and friends who have stepped up to support and love my wife, Phyl Gerber, who was diagnosed with ALS (Lou Gehrigs Disease) in the spring of 2017. We have posted Phyl’s speech which she (and I) delivered at the opening ceremony for the 2019 Western Massachusetts Walk-a-Thon fundraiser in Look Park on May 18. Several hundred people attended including about 75 who walked with Phyl.
The following is Phyl’s speech…
Hello family and friends! It does my heart and soul good to see so many people out here to support those of us dealing with ALS. At this time, I am dealing with one of the many symptoms of ALS, a weakened voice. Since I plan to chat a lot today, I want to save my