Call with questions

"Do you ever get tired of this?" Jerry asked recently as I transferred him from one place and position to another.  It was a question encoded in a slurred speech only his mom and I could be expected to understand.  "No, buddy, of course not.  We never get tired of helping you." was my reflexive response.  It wasn't just what he needed to hear.  It was true. 

Jerry 11/20/2022

Ten years ago, last month, we headed off into the unknown with some vague directions.  Doctors with Ph.Ds to spare gave their advice, and we followed along with trepidation, then hope, and eventually some optimism.  Somewhere early 2015, we reached a stopping point on the trip that felt like stability, and we moved on with our life and made typical plans based on logical assumptions.  We felt that things seemed to be on an even keel.  Jerry's relatively minor problems were not getting worse.  No new concerns revealed themselves then, and that would remain the status quo for close to five years.   

We've long lost track of the numbers and types of medical specialists we've seen with Jerry this past ten years.  Neurosurgery, Neuropsychiatry, Neurooncology, Endocrinology, Radiology, All The Therapies, Genetics, Ophthalmology, Radiation Oncology, Neurology, and pretty much anything else you could name ending in -gy.    Janelle and I imagined that with this deep bench of expertise we would at least have logical answers and reliable guidance if things were to take a negative turn.  These experts have seen it all, right? Even when the particulars of a case are very rare, we never contemplated that we would have experts tell us they don't know and.... call us if you have any more questions.   

We don't fault the doctors for us getting stranded on the journey to destination unknown.  During our initial fraught meetings with a team of doctors in October of 2012, we knew there were few guarantees.  They admitted early that the advances in treatment of brain tumors and brain cancers had not kept pace with other types of cancer.  With rare configurations like Jerry's, the team hedged their statements and predictions with 50% five-year survival estimates.    We expected, somehow, that things would either get worse and we could expect an obvious, inevitable outcome, or Jerry would reach stability and have a normal life with some minor modifications.   The eventuality we never considered was that Jerry's life would become dramatically limited, and that his case would stump our experts to the point that they would give up without explicitly admitting so. 

Family trip to Cannon Beach, Oregon in 2022 

We found out what happens when the best doctors are baffled.  They send you to other best doctors, because you're an adult now, or we need fresh eyes on this, or Jerry's main oncologist is retiring, or insert rationale here.  Unfortunately, the other best doctors took a good look, spoke slowly and comfortingly, then told us they also didn't know.  I believe they are also waiting for us to call if we have more questions.  We have not heard from any of Jerry's existing specialists in well over a year, and we don't expect to.   

This is where we find ourselves today.  We're in the middle of nowhere, population 3.  Jerry's siblings will eventually move on with their lives.  This is not their responsibility or burden.   We've been assigned this position by the lottery of life.  We are twenty-four-hour caregivers for our twenty-year-old son who needs significant and often total assistance with every function of living.

Jerry can't walk with any form of assistance, nor can he even stand on his own.  He's an extreme fall risk during any kind of transfer.  He's lost the ability to do so many things that are routine and automatic for the rest of us.  He needs nearly complete assistance with eating, dressing, bathroom, bathing.  Of the things he can feed himself, he's a choking hazard and must be monitored.  He needs supervision every waking hour.  The list of things he can do without assistance is rapidly approaching zero.  Most cruel perhaps is that he's almost entirely lost the ability to make himself understood when he speaks.  We try to work around this problem with an iPad, but it is a constant struggle.  Jerry's cognitive processing speed and ability to remember what he had planned to say are diminished, so many times the moment is lost by the time the device is at the ready.   Often, we figure out his intent through questioning and a process of elimination.  

In the middle of this, somehow, Jerry is a joy to us.  Maybe it's because he laughs with volume and gusto at the slightest silly joke that we deploy about whatever the care chore of the moment happens to be, or a quip about something he's doing or watching or playing.   He is genuinely and abundantly grateful for everything that is done for him.  He is kind and concerned about people.  He thanks whoever is attending to him at the moment through slurred and drowsy speech when one of us transports him to the bathroom in the middle of the night, every night.  He says, "I love you" and "good night" in a manner that is reminiscent of a toddler learning to talk, even if it's 4:45am and he's already been up earlier that night.    

The extent to which Jerry's life is now limited was not something we considered.  Though he appears to understand most things we say to him, his ability to respond in a meaningful and timely manner is profoundly degraded.  We often must interpret what is needed without a fully intelligible response.  Beyond all the physical help he needs, communication is the most worrying long-term concern.  We want him to be able to communicate and advocate for himself as needed.   We fear he will lose what remains of his ability to do so.  

There are some minor changes in the past few years in Jerry's brain scans that might be consistent with this trend of increasing disability.  The question that the doctors seem to be unable to answer is where it will go.   We are struggling to imagine the likelihood or timeline that may leave Jerry bedridden, or unable to eat, or other functions lost that he is barely clinging to now, even as we hope and pray that will not become his reality.        

Jerry on his cruise ship balcony
Dec 2021

We have some outside caregiver assistance now to help us with Jerry when neither of us is available, or to give us an outing for a few hours together from time to time.   We try to include Jerry and bring him places at any feasible opportunity.  We took a family trip last December that involved coast to coast air travel.   It was very difficult in so many ways, but we did it almost entirely for him due to the rapid deterioration in his condition and the concern that he might become incapacitated.    Our hopes of getting another trip to back to Ireland with Jerry seem to be increasingly out of reach.   

We have a few types of wheelchairs for different circumstances, and a variety of other safety equipment to help move him from place-to-place inside our house, without falls, though very little of this equipment would make air travel easier.  Handling Jerry is no simple feat since he outweighs each of us by 100+ pounds.   I describe him as a tall upside-down bowling pin made of lead.  He has no balance, coordination, or meaningful gross motor control.  Without the equipment we have, serious falls would be inevitable, and low speed falls were a regular occurrence until we added specialized transfer equipment this year.  

One of the most profound losses Jerry has suffered is companionship and relationships with friends.  We understand why, and fully accept it.  Jerry's life changed most at a time when he was growing into late-teen years.  His friends all moved into new phases of life, where Jerry could not follow.   Because he can't really express what he is thinking and feeling at a deeper level, we believe he struggles at times with depression.  Some friends have been family to him and have visited him and tried their best to show him that he's not forgotten.   Visiting with Jerry isn't the easiest because Jerry can no longer hold real back and forth conversations.  Those who have tried to keep in touch with Jerry and include him - you know who you are, and we appreciate you very much.     

We continue to search for a new clue, a different opinion, a clinical trial, or anything that might tell us more than we know today.  We've recently self-referred to the Mayo Clinic system to see if they will either reach the same stalemate or present us with new options.  The alternative seems to be watch Jerry decline without a fight.  We are tired, but we're not tired of searching for ways to improve Jerry's life, and we're not tired of helping our boy who didn't deserve to be trapped in a failing body.     

We're back on the road and will report back with anything new.

P.S.   Some people exchange messages with Jerry on Instagram of Facebook Messenger.  We greatly appreciate this, and we know Jerry loves it.  

For anyone willing to write short messages to Jerry, he is able to tap out very short sentences on instant messengers.  He is on instagram and facebook.   @jerry_at_cc  or facebook.com/jerryinorting

His responses are not likely to be very profound or conversational.  He doesn't have much to say, but he loves getting messages from people.  Regardless of whether you think he might not know you or remember you, he won't care.  He loves people.  Say hi.  Send him a picture of you and your people or pets and remind him who you are.  He might respond right away, or in a week.  You never know.   

Jerry and mom, Cannon Beach, Oregon, Summer 2022

Jerry with random street pirate. Fall 2022.

It wasn't my idea.  Summer 2022.  

We are always looking for a reason to get Jerry out of the house. Fall 2022.  

Jerry, Janelle & Miriam in the Caribbean, Dec 2021