All posts by jgerber123

I teach sustainable food and farming at the University of Massachusetts and try to contribute to my local community without causing too much harm....

Phyl is not doing well

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….
 
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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 afterlife

A 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…..

Continue reading A day in the life of Phyl (and John)

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?

gazette

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?

An update on Phyl (from Florida)

leaving
Leaving Amherst on a cold day in January

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)

When someone is grieving….

I wish I had written this myself…..

John Gerber


The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” ~Henri Nouwen

It’s hard to stand at the edge of someone else’s grief.

There’s the awkwardness. You always feel a little like an uninvited guest who arrived late and missed the first half of the conversation—a conversation that turns out to be a wrestle between another person and the deepest parts of their own soul.

What can you say when you realize you’ve barged in on an interaction so intimate, so personal that you just want to avert your eyes and slink quietly away?

Then there are the triggers. Continue reading When someone is grieving….

Communicating with Phyl from now on…

TO:  Friends and Family

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!

Love to you all…..

John


Click here for the next email in Phyl’s story

A New Year’s Day Request

TO:  Phyl’s Friends and Family list….

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! 

Peace….

John


Click here for the next email in Phyl’s story