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.
And… more changes.   We have been successful for the past few weeks helping Phyl have a bit of soup just to give her something to eat.  At this point, her swallowing won’t even allow that.  Thanks to everyone who has been sending creamy soups, but that too is over now.  Her nutrition is 100% through her feeding tube which is much safer than trying to swallow.
Finally, if you have written to her recently you may not have gotten a reply.  Her hand is much weaker and she is having difficulty typing on the iPad.  She is learning to use a head mouse to type but it’s not easy.  PLEASE CONTINUE TO SEND HER MESSAGES (texts and email are best)…..  but please don’t worry if there is a very short or no reply.  If you want a sure reply, just copy me.
Sorry to have to bring more bad news…..   the past week or so has been really hard, but the hospice nurse has already helped make Phyl more comfortable.  This is the good news!
And thanks for all of your continued support and best wishes.  We both appreciate all of your love….
Oh yes….. Sue Marx and Phyl had a parade!  Check it out….

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