I
am cutting to the chase with our reality here. My husband was 15 months
of unexplained weight loss that started immediately after a 6-day
hospital stay for bronchitis/pre-pneumonia and a UTI. He stopped
walking, became bedbound and completely dependent for feeding and his
randomly incontinent days within 30 days of that bout. His swallowing
was intermittently good/bad and he needed a lot of cueing to keep him
safe in that arena. He instinctively used methods his speech therapists
had taught him prior to that last hospital stay. Hospice provided his
hospital bed with alternating pressure mattress to help prevent
bedsores.
As his body slowly stopped absorbing
nutrients, he slowly dropped from 186lbs on a 6'2" frame to under 120 at
last weigh-in, then ultimately, cardio-respiratory failure. We are
fairly certain by the end he was well under 100lbs.
In
his last 12 days, his consciousness shut down first, going
unresponsive. Within 24 hours of that, his lungs started to fill and
hospice used comfort measures. 11 days later, he passed peacefully and
pain-free with hospice's help. He was on a subcutaneous fentanyl pain
pump for his last 12 months due to chronic pain syndrome (related to an
earlier pelvic/hip fracture, cervical spine deterioration and a prior
vertebrae fracture in his upper back that were exacerbated by his
bedbound state, plus his neurological pain from deterioration).
His
death certificate states cardio-respiratory failure due to or caused by
Lewy Body Dementia, so I am very thankful his diagnosis is now a part
of the statistical record for LBD.
He really did
still communicate and have several lucid hours throughout the course of
those last 15 months. Up and down on the roller coaster of batches of
unresponsive days/hours to very communicative days. The horrifying
downside to that is, occasionally his lucidity was at a high enough
level that he would actually comprehend his decline and be fully aware
of it. When that happened, it was heartbreaking, and completely surreal
to us to hear and see the old Gary in his frail, deteriorated body, and
yet it was also so wonderful to have him back and aware for those brief
moments, before he fell asleep/and or then went back into the full grips
of Lewy. The varying lucidity seemed to begin and end with a nap or
overnight.
Overall, the hallucinations were less in end stage than early or mid.
Taking
all of our story into consideration: When the Cleveland Clinic
Neurologist told us his PET scan showed Lewy, and that his whole brain
was affected and he would forget how to do everything...we never thought
his consciousness would go first. We were thinking his heart would just
stop, or his breathing, his swallowing...or some other autonomic
function. Instead, it was ultimately his consciousness that went first.
The hospice doctor said his body was too young and just didn't know
enough to stoop...was continuing along, despite his brain deterioration.
He was only 71.
The
end was distressing, yet very expected, considering we'd been through
so many false alarms over his past 2 years. The hospice nurses and staff
kept telling us the signs in his last 2 weeks, but we'd experienced the
same signs several times in his last 2 years...so the only way this
time was different was after 3-4 days of unresponsiveness, he wasn't
even reacting subconsciously to assist us or the staff with his
movements. That was our true sign. Took until day 10 for his
extremities to begin discoloration due to lack of circulation. To us, it
was almost until that discoloration occurred that we ultimately
understood this was truly his imminent end of life. unsure emoticon
