Phyllis Ann Ebner Gerber passed peacefully on June 15 following a 5-year illness. She was surrounded by flowers, her family, a rose scented candle and Beatles music. Phyl, as she was known to everyone, spent her early years in West Haven, CT and at a young age moved to Great Neck, NY where she attended Saddle Rock Elementary School and Great Neck North Junior and Senior High Schools. As a 10th grader, she met John Gerber who was a senior, and began a 50+ year relationship. Phyl attended the University of Hartford for two years before marrying John in 1973. They lived in Ithaca, NY for 5 years where Phyl learned to become a potter, often selling her wares at local craft fairs. They moved to St. Croix in the U.S. Virgin Islands in 1978 where Jacob was born and then to Urbana, IL in 1979. Phyl loved her life as a fulltime mom in Urbana, where Brian and Jeremy were born and her boys spent their early years. The family moved to Amherst, MA in 1992, where Phyl worked as a potter and a teaching assistant for special needs children at the Wildwood Elementary School until she retired in 2013.
The letter I never wanted to write
TO: Family and Friends….
This is the letter I never wanted to write. Your friend, family member, and my wife of almost 48 years passed away peacefully last night, surrounded by her children, lots of flowers, a rose scented candle, and Beetles music. Phyl just ran out of time. Her breathing has been getting worse for the past year and finally her lungs quit on her, even with the mask and respirator.
The past two weeks have been tough as she struggled to breathe and lost her ability to communicate. When she experienced air hunger, we gave her morphine which gave her some relief. Yesterday morning I helped her dress and took her into the dining room in her power wheelchair. She had three doses of morphine before she got comfortable, but this also made her groggy. We didn’t think she was aware of what was going on around her, but when she heard our grandchildren playing at the dining room table Phyl perked up and waived to them weakly.
We kept her comfortable all day with morphine. She seemed to perk up when her brother Howard call, but she slept most of the day. Her breathing became weaker and weaker all day and we knew she was transitioning when her oxygen level began to drop. Jake, Brian, Jeremy and his wife Sam, and I held her hands, rubbed her legs, talked to her, and cried until her breathing stopped altogether at 2:45am. It was a relief as she was suffering. She passed very peacefully.
Phyl will be cremated and we are planning a celebration of life sometime in the fall, hopefully associated with the ALS Walk-a-Thon in Look Park. More on that later. We’ll also ask for donations in lieu of flowers etc. for the ALS Association of Massachusetts which has been very good to us. Here is the link if you would like to help;
http://web.alsa.org/site/TR/Walks/Massachusetts?team_id=386635&pg=team&fr_id=14146
I’ll tell you more in another letter, as I’m exhausted and can’t think.
Love to you all…..
John
Click here for Phyl’s obituary
After her passing…… a few posts about John after….
June 28, 2020 – The first two weeks
July 4, 2020 – Navigating Transitions
August 15 – After Two Months
Not much time left
TO: Friends and Family…
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.
Phyl is not doing well
TO; Friends and family…..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….
Thoughts on life and the afterlife
I’m really not sure why anyone would be interested in my thoughts on the afterlife but it helps me to clarify my own thinking when I write. So I did. I’ve been thinking about death a lot as several close friends have died recently and the corona virus has surely put death in the news. These sort of ponderings seem to happen to many people as they age. I offer these ideas in a public forum in hopes that some readers might share their own thought/feelings about life and death (in the Comments box below).
SO HERE GOES…
First, I’m not terribly fond of the word “afterlife” – even though I used it in the title. Most people know what is meant by the term afterlife, so it is useful. But the word “afterlife” feels too final as I have come to believe in the continuation of consciousness after the death of the physical body. For me, the death experience appears to be more of a transition to another form of existence, a continuation – not an ending. I need a better word to describe the “condition of being that follows once the spirit-self has left its bodily container.” Perhaps you have a suggestion.
I surely don’t have a picture in mind of a heaven with “pearly white gates, hanging out with old friends playing harps in the clouds etc.”, I do understand why that description might be a useful story to tell children and I suspect it can be a comfort to those who believe. But it’s just a bit too easy for me to accept what seems more like a fairy tale than a thoughtful depiction of the state of existence that continues following the demise of the body. Nevertheless, I believe that we live forever, as suggested in Francis Hodgson Burnett’s classic book, The Secret Garden.
Continue reading Thoughts on life and the afterlifeA day in the life of Phyl (and John)
TO: Friends and Family
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…..
And hospice begins
TO: Family and Friends
FROM: John
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.
Continue reading And hospice begins Will we head viral lessons from “broken” tulips?
By LAWRENCE J. WINSHIP
For the Daily Hampshire Gazette – April 25, 2020
Hundreds of years ago, the flowering bulb markets of Holland were overcome by tulip mania. Buyers bid up highly desired varieties to astronomical prices, paying enormous sums for rarity and flamboyance. Fortunes were made and lost. One of the most sought-after varieties was the Semper Augustus, with striking streaks of white in its red petals — strange, magnificent, and deadly to other tulips.
Not until 1928 was it shown that the dramatic white streaks in the Semper Augustus tulips were caused by a viral infection, spread by aphids, and ultimately lethal to all infected tulips and lilies. But so highly desired and valuable were these infected plants that it took years before government stepped in to protect the bulb industry. Continue reading Will we head viral lessons from “broken” tulips?
There is love…
An update on Phyl (from Florida)
This is a story about our month in Florida. We decided that our winter break from the cold needed to be someplace we could drive to, since getting on and off an airplane has proved pretty difficult and we need our wheelchair accessible van to get around. So we drove to Naples, FL where we rented a small house for the month of February.
The drive down was uneventful (thank goodness) and we took our time. Finding wheelchair accessible rest stops has become my new hobby. We booked accessible hotels one day in advance and it worked out.
One night we spent at Jekyl Island, GA where we had spent many spring vacations with the kids, my brother and my parents. Phyl recalled the beach where Jake took off on a wind surfer and couldn’t turn around. John swam out to “save” him and they both had to be towed back by a local fisherman. And there was the beach were Jeremy lost his beloved toy train “Percy” in the sand – which Phyl says is still out there! And another beach where John and his Dad Continue reading An update on Phyl (from Florida)
