Monthly Archives: June 2020

Phyl's Story, Spirituality and Wholeness

The First Two Weeks

6 Comments
grandcanyo
Phyl’s spirit was more grand than the Grand Canyon….

I read somewhere that the first two weeks after the loss of a spouse was the “easy part” since there are so many things to do, visitors, cards, practical arrangements, and just plain “busyness.”  I’m not sure it was “easy” but I can attest to the “busy” part.  Family and friends have been keeping me company while I try to navigate the early days of grieving.  Here is a brief update….

Continue reading The First Two Weeks →

Phyl's Story

Obituary

Leave a comment
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.

Continue reading Obituary →

Phyl's Story, Spirituality and Wholeness

The letter I never wanted to write

Leave a comment

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

Phyl's Story

Not much time left

Leave a comment

IMG_4499

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.

Continue reading Not much time left →

Phyl's Story

Phyl is not doing well

Leave a comment
IMG_4337TO;   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….
 
Read More