For more than 20 years, Lynn Doscher and Kent Vreeland shared a passion for fishing, the Boston Red Sox, Texas Hold ‘Em, softball games, Florida beaches, Cape Cod summers – and each other.

A lifelong fisherman and professional fishmonger, Kent lived on the waters of the Florida Keys in the sunny winter months, returning to the Cape for summers of fishing, softball and working the area’s seafood markets. When her work schedule permitted, Lynn joined Kent at his second home in Naples, FL where they spent lazy evenings talking with friends, playing cards and enjoying each other’s company. After so many years together, formally marrying seemed somehow beside the point. They were simply bound together forever – or so it seemed.

In late 2006, Kent was diagnosed with lung cancer. He continued working during his treatments, filleting fish for market with an expertise few could match. But after almost a year of battling his illness, Kent decided it was time for help from Avow Hospice, the hospice that serves Naples and Collier County, Florida. He joined the program two days after Christmas, 2007.

Lynn took an extended leave from her job in Massachusetts and flew to Naples to give her beloved Kent the care he needed and wanted at home. With help from Kent’s Avow care team, Lynn fed, bathed, talked to and comforted him. Together, they decided the final celebration of Kent’s life would be about love – their love. They decided to marry.

With time precious and short, Lynn and Kent asked an Avow employee – someone they didn’t know – to notarize their marriage license. The couple immediately took to the employee’s warmth and generosity – so much so that they asked her to perform their wedding ceremony the next day.

On January 11, 2008, Kent and Lynn were married at home in a beautiful service presided over by the Avow staff member. The bride’s ring was a special gift to Lynn from Kent – the pearl mounted in its setting had been a delightful find on a visit to Sea World. Her bouquet was a gift from Avow; the staff member also served as wedding photographer. When asked if he took Lynn to be his wife, Kent softly said “I do” – the first words he’d been able to speak in weeks.

Just two days later Kent passed away with Lynn at his side. Although their marriage was brief, their love lasted a lifetime. The promises they made together were promises they kept.

On a fine September afternoon in 1986, in a parking lot at a shopping center in the suburbs of Philadelphia, Josie Rogers collapsed and suffered a Gran Mal Siezure.  She was 53 years old.  She had been shopping for wallpaper with me,  her husband, for our new home.  The wallpaper store was hot and the day was one of those delightful fall days often experienced in the area.  Josie complained of feeling unwell and while I was opening the car door for her she collapsed on the ground.  Response was swift as was her recovery and a two week stay in hospital was unable to find a reason for the seizure.   She made a good recovery and after a three-month period of anti-seizure medication, her neurologist declared she no longer needed it.

Josie had been under a period of intense stress.   My employment was in the process of transferring to Pennsylvania following a corporate merger of two major corporations.  Because of timing and two children in school, I had been commuting each week for six months while our home in Michigan was on the market.  School was finally out, the family moved to Pennsylvania into a new home.  Our son had completed college and remained in Michigan while our daughter had completed high school and was making college decisions.  Things were generally unsettled and it was this that was blamed for the incident.  We enjoyed an excellent marriage with much love and family harmony and soon settled into our new home.

            Early in 1989 I received an early retirement package from my company that exceeded our career projections.  We had already decided to retire to Naples in Florida and built another new home in Berkshire Lakes.  Although she had since experienced periodic migraines, there had been no further manifestations of the seizure problem.  She had been prone to migraines much earlier in her life but these had ceased around the age of 25.  In 1990 I located a Naples Neurologist and together we decided to investigate further.  In the interim, MRI’s had been invented and were in the early days of use.  An MRI study showed some white matter abnormalities in Josie’s brain scans.  Clinically and psychologically Josie checked out as normal and the Doctor was unable to explain the MRI variations.  The expert on MRI analysis was a doctor in the University of Florida Medical Center in Tampa and an all day visit there which encompassed many tests and further scans produced a conclusion that there was nothing detectably wrong with Josie and, since she passed all the tests with flying colors, the conclusion reached was that the variations were some aberration of the MRI process and had no meaning.  Josie was advised to get on with her life and not worry.

            Over the next few years, Josie continued to have migraines.  These became more intense and were accompanied with visual aura effect.  Some were so severe that she was forced to retire to bed in a darkened room for several days at a time.  The doctor was unable to pin down a diagnosis other than depression which, if it even existed, was not readily apparent.  This was treated with a variety of then new medications, most of which had violent side effects which Josie could not tolerate.  She became more frustrated as time passed without being able to pin down her condition.

            In August of 1994, after attending a wedding of some friends during a trip to Pennsylvania, we were involved in a car accident where a red light runner crashed into a friend’s car where Josie was seated in the front passenger seat, which took the full brunt of the crash.  Her injuries were severe, fractured ribs and pelvis, some spinal involvement and a collapsed lung.  During her intensive care hospital treatment the aberrations of her MRI were discovered.  Josie was on a pain pump which delivered morphine on demand.  She had a low tolerance for any narcotics and was not conforming to the pain management plan in that the morphine was knocking her out and she was hallucinating.  The hospital assumed she had hit her head in the accident but she had been wearing a seat belt and had no visible head injury.  The neurologist who examined her was stumped by the MRI scan but concluded it was not normal and indicative of a problem unrelated to the accident.  Following our return to Naples, much later than intended, and combined with an intensive physical therapy regimen, she began to exhibit personality changes.  These emanated as short temper and extreme forgetfulness.  As time progressed, she began substituting meaningless words in sentences. 

            These symptoms completely baffled her neurologist who sought a second opinion from a colleague who had recently joined their group and was fresh from a Boston teaching hospital where puportedly he had witnessed similar symptoms.  His input was that the cause was a malfunction of the immune system which could be treated with a course of chemotherapy designed to take the immune system down then allowing it to re-form without the disturbing influence.  Josie undertook a course of chemo without it having any visible effect.  Migraines were coming at regular intervals and Josie was becoming more and more out of normal behavior and every attempt at treatment failed.  A psychological profile at this time displayed serious deficiencies.

            In July 1997, the second neurologist had exhausted his attempts to treat the condition.  Brain damage from ischemic type strokes was apparent and Josie was referred to the U of FL Shands Neurological Hospital in Gainsville Florida.  Here she was interred for ten weeks while a body of doctors hypothesized over 137 differing conditions which could show at least some of the symptoms she was now exhibiting.  Following extensive testing, the final three tests required a brain biopsy which was done without producing a diagnosis.  Following this effort, the prognosis was gloomy.  An unknown condition with worsening progressive symptoms and they gave her 18 months to live.  Josie was 64 years of age.

            Upon her return to Naples and as a result of being in bed for ten weeks, Josie needed extensive physical therapy which was provided by placing her in a nursing home which had that facility.  Essentially, she had to learn to stand and walk, a venture she undertook with some spirit.  Short of new treatment ideas, her doctor suggested we try a more intensive chemotherapy which she agreed to.  Following this there appeared to be an improvement in her mental condition and after her return home she was able to enjoy outings with me providing the pulling power with a wheel chair for the longer travel periods.  The next event was another Gran Mal seizure, immediately following a supervised shower.  911 and a hospital visit later resulted in steroids and anti seizure medication being added to her medication protocols.  Side effects from this seizure were deterioration in her motor abilities with her right side suffering the most.  About every three months from then on she suffered a seizure, albeit of short duration.  Each time she was left in a confused state, which lasted two to three days, and there was usually some slight deterioration in her motor abilities with each successive seizure.  Her ability to communicate verbally was impaired yet she still enjoyed being taken out to lunch even though she now needed my assistance in order to eat.

            The next crisis came in February 1999.  Josie suddenly lost the ability to speak and to swallow.  This occurred at dinner time and since she took all her medications by mouth, this became a critical issue particularly with her anti-seizure medication.  By the following morning it was apparent the condition was a lasting one which triggered another trip to the hospital.  Apart from her lack of ability to communicate verbally and swallow, she also had a mildly elevated temperature which suggested an infection possibility.  30 days later it had been determined that there was no infection and the supposition was that the disease had finally affected the Thalamus,   a region of the brain which controlled such auto functions as temperature control and swallowing.  She was being “fed” by intravenous means and discussion reached the punch line when, in front of Josie who although was unable to communicate and was drastically impaired, was clearly cognitive of the ensuing discussion, I was asked whether a feeding tube should be inserted into her stomach, or not.  In terms of timing this was around the 18 months terminal date issued by Shands.  From her body english she clearly understood the underlying import of this decision.  Equally clearly, she was not ready to give in to this still unnamed scourge that was pulling her down.  The deep and intense love that existed between husband and wife overrode all other communication when I agreed to the insertion of the feeding tube.

            A few days later, the feeding tube in place and functioning properly, an intensely embarrassed doctor stated that he had done all he could and was essentially handing in the towel.  He asked me which nursing home I wished to assign my wife to.  From previous experience with nursing homes I explained that I was not going to assign my spouse to a nursing home but that I would continue to carry the responsibility for her nursing care at home.  Josie was 66.

ENTER THE CAVALRY – HOSPICE TO THE RESCUE!

            In preparation for Josie’s return home in March, 1999, I had an interview with the Admissions Staff of Hospice of Naples.  Her doctor had issued a further 18 month prognosis and it was hard to describe the ongoing care needed for a patient with a debilitating no-name condition that was clearly terminal.  The home was inspected and an OK to go ahead resulted in the installation of a hospital bed within the master bedroom, an oxygen supply and a myriad of support requirements with orientation on its use, along with an undaunted team of nursing experts whose claim was that our task was to secure the maximum comfort and care for our patient.  One can imagine the immense relief this was to me, having committed myself to what I anticipated would be a lonely and difficult sojourn in the care of my wife.

            Came the day when Josie was returned home.  She was greeted with Hospice nursing staff who managed her transfer and a preliminary evaluation.  Medications were discussed and organized.  Feeding which was liquid via feeding tube was delivered and demonstrated.  Care of the feeding tube was also carefully reviewed.  Josie was made comfortable and the necessary paperwork was completed.  This was followed by a nurse’s assistant who gave Josie her first bed bath.  This all began a regimen that was to follow for the next five years.  The major nursing consideration was Josie’s comfort and a strict program of repositioning to avoid skin breakdown.  After a short while I became adept at bathing her and this became a major labor of love between us and the attention of the nurse’s aide was discontinued.  A Hospice nurse visited each week and conducted a full examination of Josie’s condition and vitals.  The nurses without exception were of extremely high quality and careful to an extreme.  They were supported by visits from the Hospice Doctor who satisfied herself that all was under control.  A Hospice Chaplain and a social worker visited on a monthly schedule and things quickly fell into a well organized routine.  Roland Nelson was the first chaplain.  He captivated Josie by singing songs of praise and reading spiritual passages during his visit.  One could see the delight in her eyes and the guileless laughter that he managed to bring forth.  I added playing her favorite music which she also clearly enjoyed and spent many hours reading her favorite books to her every day.  Because of her condition she also slept quite a lot. 

            Enter the Hospice volunteers, particularly two stalwarts who attended regularly, one on Tuesdays and the other on Thursdays, with the intent to provide respite for me.  They were supplemented by a large number of random supporters who filled in when the regulars could not make it.  It is noteworthy that only once in five years were Hospice unable to place a volunteer, a remarkable record.

            One particular event was noteworthy.  One morning, shortly after Josie had had her morning bathing, I noticed she had managed to pull out her feeding tube.  I attempted to reinsert it but found that either the hole between her outer skin and the hole in her stomach was misaligned or the stomach had already commenced closing the hole.  A call to Hospice and help was quickly in attendance but, unfortunately, the nurse had no better luck than I had had.  Reinforcements brought in the Hospice doctor who managed to realign the holes but by this time the stomach aperture had already closed down to a much smaller hole which would not allow passage of the feeding tube.  The doctor did however manage to insert a thinner catheter.  While we were all discussing the next step, a visit to the OR, we had the brilliant idea of slightly expanding the balloon on the end of the catheter inserted in Josie’s stomach and by gently extracting it while expanded, we could perhaps sufficiently enlarge the stomach aperture to accept the larger feeding tube without causing Josie too much distress.  The deed accomplished, the feeding tube slid gently into place without causing Josie any distress.  I took extra care to ensure the tube was always securely anchored following that experience.

            About every three months or so, Josie would experience a seizure, despite the anti seizure medication she was taking.  While the blood tests for the level of the medication in her system showed no discrepancy, the seizures were distressing.  Josie was listless immediately following the 30 seconds to a minute event but starting the following day and lasting about a week thereafter, she was surprisingly alert and responsive.  I was still intent on finding out the exact nature of the condition that had pulled her down and noted that she did not appear to be having further regressional attacks of the type that resulted in a reduction of capability which she had been having regularly prior to her last hospitalization.  I started trying to find a reason why this should be.  Was it a natural progression of the condition that after a tremendous amount of selective brain damage, it stopped of its own accord or was there some other reason?  After a great deal of study I discovered that the only significant change was due to two happenings.  One was the liquid food Josie was taking had substantial B6, B12 and folic acid content.  The second was the same discovery with the multi-vitamin she was now taking daily, resulting in substantial amounts over the daily average for these vitamins.

            Further research brought forth the discovery that an amino acid named Homocysteine was controlled by these vitamins.  Homocysteine has a reputation for destruction of vascular tissue when introduced into the blood stream in excessive quantities which was in turn triggered by protein(s) produced within the body where it acted as a carrier to allow the protein to enter the bloodstream.  In trying to determine what protein and was it in excess thereby triggering the excessive Homocysteine or was it a malfunction of the production of homocysteine, we ran into a complex systemic problem beyond our meager resources.  The other question was, was it in fact Homocysteine that was causing the vascular damage to Josie’s brain?  A homocysteine test of Josie’s blood at this stage confirmed a normal level but we had to consider the abundance of the vitamins in her intake at this time.

            The program to keep Josie free of skin conditions was a rigorous one.  It entailed religiously  moving her position every four hours.  The positional choices were on either side or on her back and the selection was made in concert with the rest of her program.  Immediately following night, which she spent on her side, alternating each night, she rested on her back until after her morning bathing schedule. Daytime was spent alternating on either side with evening following the evening feed period propped on her back where she could watch TV, which usually caught her attention.  Afternoons would have her favorite music played from CD’s and later I read to her from books I knew she enjoyed.  While she was unable to communicate through speech, we developed a process of body language, which enabled me to keep her comfortable and understand her wishes to some extent.  I was also able to transfer her to a special wheelchair and take her for long walks around the lakes, chasing, but never catching, the occasional Muscovy duck if it got in our way, an operation which was guaranteed to produce a hearty chuckle from Josie.  If anything, our love for each other reached to new heights during these sessions.  I don’t mean sexually for I had no way of determining if she had any sexual desires and she was certainly not capable in that regard, but in a more spiritual sense.  On one occasion as I was bathing her, lifting her to change positions, through a tremendous effort of will she leaned into me and deposited a kiss on my cheek, one of those extremely emotional moments we shared.

            I have said little about our children.  We have a son and daughter, both happily married with five grandchildren between them.  They both live in South Carolina and maintain close contact with one another and with us.  During their visits to Naples, they were both clearly distressed with their mother’s condition and expected the worst.  Around the time that Josie came under Hospice care, my son started experiencing migraines with aura.  He was 38 years old.  An MRI showed the same early white matter disturbances that Josie’s had.  His neurologist could not explain it but we knew it was the start of the same condition.  This was confirmed when on a visit to Naples I took him to see Josie’s neurologist who had learned a little more about the cause and he had our son take a special blood test, which he had to have done at the U of M medical school at Ann Arbor in Michigan.  U of M were operating a geriatric program and had come across similar symptoms in several of their patients and had determined there was a small vascular organ failure in each of these cases caused, they believed, by a genetic condition.  His blood test came back positive and we learned that a scientist in France had discovered this condition and was naming it CADASIL, an acronym for Cerebral  Autosomal  Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy, basically a medical description of the various symptoms the condition presented.  The cause was a malfunctioning gene in the notch 3 position in the 19^th chromosome, causing an excess production of a protein normally generated in the “Fight or Flight” syndrome.  The excess triggered production of an excess of the amino acid which carried it into the blood stream and caused the damage to the vascular system.  The exact protein and amino acid were still unknown, but the condition was hereditary.  Bad news, even as we now had a name for the condition.

            This news was devastating to our son.  He could see his mother’s condition and it was not a gigantic stretch of imagination to see himself in the same condition, and, with Monday morning quarterbacking, had it occurring sooner rather than later.  We took the experience we had hypothesized from Josie’s experience and put him on a keep fit regimen and heavy doses of B6, B12 and folic acid.  He still experienced migraines with aura but through an internet website we learned that a gentleman in England with Cadasil had learned to control the onset of migraines with an over the counter treatment of L’Arginine.  My son experimented to determine a base daily dose then found when he had symptoms of oncoming migraine all he had to do was to take an additional dose to stop the migraine in its tracks.  This is enabling him to live a normal lifestyle and he has had no further deterioration of the brain damage and white matter degeneration within his brain.

            Meanwhile, Josie showed no further symptoms and her daily routine remained the same, ably supported by the excellent support from Hospice.  In 2003, following the opening of Georgeson House, I was offered a respite.  This involved leaving Josie under Hospice care at Georgeson House while I took a couple of weeks to visit our children.  Until one experiences the relief offered by such a program to a caregiver, the break from a virtual 7x24 hour work week, one cannot appreciate the freedom this generates.  Although I felt extremely nervous, even guilty, at leaving the love of my life in strange hands, Hospice could not have done better in ensuring that I had instant communication access to the nursing staff with daily reports on Josie’s condition and I returned much rested to pick up my task as caregiver.

            On September 23^rd  2004, Josie transitioned from this life, age 71 years.  She had had symptoms of difficulty clearing her airway around midnight and I tried to help by aspirating her mouth and throat and positioning her more comfortably.  She appeared to settle down and eventually fell asleep and I returned to bed.  When I awoke at six o’clock next morning she had apparently just passed peacefully away.  After my tearful personal farewell to the love of my life, I called the Hospice night line and it so happened that Connie Stephenson, a Hospice nurse who had attended Josie much earlier was on duty and came immediately and stayed with me while we waited for the funeral home.  Josie’s body was carefully and reverently removed.

            Much like the day when she moved back into our home in 1999, the Hospice organization went to work and collected all the materiel that had been necessary for Josie’s nursing care and before the day was over only memories were left.  Hospice Chaplains conducted her memorial service which was well attended by many of the Hospice staff and volunteers we had encountered along the way and all our friends in the community.  I took advantage of the Brick Memorial offered by Hospice and received much comfort from the dedication ceremony and the following Remembering Service at the Moorings Chapel, all part of the Hospice support.

            The culmination of Hospice support came when unexpectedly I received a call from the Hospice Bereavement Services, wanting me to know of the many supportive bereavement offerings provided from Hospice and inviting me to talk to Bereavement counselors and/or attend a support group.  For me, grieving was an intensely personal matter, shared only by my children, but I certainly appreciated the knowledge that the entire Hospice organization stood behind me, ready to help in any way they could and all I had to do was to ask.

            Hospice provides a unique support service to the terminally ill patient and their families.  Passage from this life is an experience that awaits us all.  It is extremely comforting and nothing short of a blessing that Hospice stands supremely ready to ensure our final moments in this life are made as peaceful and painless as is possible and that our loved ones are not abandoned to suffer bereavement alone.

- Fred Rogers,  August 2, 2007

The Hospice of Naples nurse arrived unexpectedly as I was interviewing one of our patients receiving care at home. Molly, the patient, had agreed to tell me the story of her journey through ovarian cancer in the hope that it would encourage other women to be persistent in listening to the language of their bodies.

Earlier that morning, Molly had experienced unsteadiness on her feet and a new, unsettling pain in her belly. She had recently been prescribed new medications by the Hospice of Naples physician. Molly attributed her symptoms, along with an annoying fatigue, to the drugs; she planned to ask the Hospice care-givers about changing the dosage, eliminating the medicine altogether, or otherwise adjusting her routine of care. She just wanted to get a good night's sleep and not feel so wobbly as she padded around the house in the pretty blue slippers her daughter had given her the week before.

The Hospice nurse listened to Molly's description of what she had been experiencing and made a few notations in Molly's chart. Then, putting chart and pen aside, the nurse paused briefly before she spoke. Gently she asked Molly to look at her feet. They were showing unmistakable signs of mottling.

"The change in the color of your feet," explained the nurse, "means your body is beginning to shut down and is concentrating on keeping your heart and lungs functioning. The unsteadiness you're experiencing has nothing to do with the drugs -- your disease process is finally taking over.

"That discoloration," the nurse continued quietly, "is going to continue up your legs and you won't be able to regain your sense of balance. Neither are you likely ever again to wake up feeling refreshed like you did before you became ill. It's now time to focus your energy on resting as your disease process prepares your body for death. Over the next few days, you will become increasingly less interested in what's happening around you, and soon, you'll be focused inwardly on only the work of letting go."

As the Public Relations Director for Hospice of Naples, I've had few occasions to witness such intimate and utterly honest interactions between a member of our staff and one of our patients. I wasn't supposed to witness this one, either - I was there to write a story about a brave woman with a cause and a message that were uplifting and aimed at preserving life. Yes, she was "dying," but the house was pretty on a bright and quiet Tuesday morning, and full of flowers; a cat had pushed its silky head into my palm when I took my seat; Molly herself was made up a little bit and seemed to have no trouble talking, smiling and answering my questions.

I watched the nurse's words take shape in Molly's face. She paled slightly, drew in a deeper breath, and gazed directly into the Hospice nurse's eyes. The air was electrified with Molly's raw panic. Then the look between Molly and her nurse changed to one unmistakably filled with love, support and silent but sad acceptance of the truth.

Several weeks earlier, as part of another project, I'd asked the Hospice of Naples staff why they chose to work with the dying. Their answers were heartfelt and inspiring, revealing them to be among the most selfless people I have ever met.

One answer, however, immediately took me to the very moment when Molly's nurse told her that her death was rapidly approaching. It said:

Dying is messy and it hurts. Hospice welcomes the dying with open arms, just the way they are - with all their messiness of mind, emotions, body, spirit and relationships. We want them - we are waiting for them - sometimes when no one else does. Dying is lonely. The person who is dying is losing everyone and everything. Sometimes hospice is the only one who understands that and wants to listen to your loneliness and your grief and to give you a shoulder to lean on. To have the honor of helping others at this most vulnerable and difficult time in their lives is completely transforming for the health care professional. It deepens our souls. It wizens our minds. It expands our compassion and fully opens our hearts. Nothing I ever did, or will ever do, will be as purely good as what I do in caring for the dying.

Please call us if we can help you or a loved one at the end of life.