Janet Moore was diagnosed with CBD in 1999 and passed away in February 2010.
I would like to share this heart-warming tribute with you – it was written by her husband Allen. It gives us an inside indication of the journey that family, friends and caregivers travel with people who have terminal illnesses.
My wife Janet started showing symptoms in 1999 at age 56 when she was a TV news producer
for CNN. She developed a tremor in her left hand; had trouble taking notes
and typing; and was having increasing difficulty thinking of the “right”
word. She stopped work in 1999 so that we could find the cause, fix it, and
get her back to work. About a year later we heard for the first time “CBGD.”
It took months more with several specialists, including some hotshots at NIH
and in New York, to “confirm” this likely diagnosis. We tried to keep up our
spirits and live life as well as we could. We had the support of our five
children and stepchildren, and seven grandchildren.
I tried to hide my fear and depression about what was happening. I think she did too.
Her decline continued and she became more and more confused. We brought in a live-in
caregiver in 2004. After breaking a hip in 2005, Janet became permanently
bed-ridden and gradually lost her awareness and ability to communicate. She
started receiving home hospice services later that year.
Janet died last February at a residential hospice in Northern Virginia. She
was clearly ready to go and the family was prepared to say good-bye.
Janet’s wonderful caregiver, Comfort (yes, that really is her name) had a
much-postponed and long-planned trip home to Africa in late January. That
was a logical time to take advantage of Janet’s (and my) right to take five
days of “respite care” in a residential hospice. The program is designed to
give caregivers a break for persons who have been in Medicare’s home hospice
program for at least six months.
Since Janet had been 100% disabled and bed-ridden for nearly five years,
non-communicative in any “normal” sense for several years, and a recipient
of home hospice services for four and a half years (!), it was apparent that
this might well be “her time.” Life is never simple, of course, so
everything was delayed as our dear Comfort was forced to deal with the loss
of a daughter-in-law, a U.N. employee, in the Haitian earthquake.
It’s necessary to schedule respite care in advance because most hospices
only have one or two beds available for it, so I was fortunate to be able to
delay Janet’s stay without losing our spot. I wanted to take care of Janet
by myself for what I realized might be her final days at home. I had plenty
of experience caring for her, but it was Comfort who had the magic touch
when it came to getting Janet to eat.
Things started changing pretty quickly. Janet did not stop eating, but she
slowed down markedly. Never a fast eater, she was even more sluggish and her
intake declined. When they took her to the hospice by ambulance after a
week, she was barely eating or drinking. I wondered how she would respond to
a new environment with strange hands and voices offering her sustenance. The
hospice staff agreed that they would offer Janet food and drink, but they
would not force anything on her. And there would be no feeding tube. One
doctor shared the lovely sentiment, “We don’t want you to worry about her
care. We want you to be free just to be her husband.” And so I was.
I visited a couple of times a day. Janet was beginning to shut down,
refusing to open her mouth for food or water. She slept most of the time. I
had been warned by our hospice nurse that Janet would get even thinner than
she already was–and she had been “skin and bones” for a long time. The
change was dramatic and difficult for those who loved her, but she showed
absolutely no sign of discomfort or awareness.
I stayed by her bedside and stroked her arm and forehead, telling her over
and over our “love story” and mutual devotion. As had been true for a very
long time, she showed no sign of recognition. On the Friday before Super
Bowl Sunday, there was a massive snow storm in Washington, DC. Other family
members and I left her at the hospice that day as the snow began to
accumulate, guessing that she might not see the dawn. But she defied the
odds once last time. The roads were impassable on Saturday, but I visited
her on Sunday. She was barely hanging on, and there was an aura of peace
around her frail body. She was reduced to her beauty and elegance. She died
that night.
The two feet of snow didn’t melt for more than a week, but that didn’t stop
us from having a glorious memorial service for her. The house seemed so
empty without her and Comfort. For weeks, as I got ready to head to my
bedroom, my instinct was to change her one last time before climbing into
bed. I loved her beyond measure when she was healthy, but I may have loved
her even more in her decline because she was so innocent and dependent.
I hated what was happening to her and for a period of time I was very
depressed about it. In the early going, even on a golf course, which
normally helped me put everything out of my head, I couldn’t stop thinking
about losing her. Eventually I got past that and began to rejoice in my
extraordinary good fortune in having this amazing woman in my life, not to
mention special friends who stepped up to walk with us down this difficult
road. My wonderful Comfort allowed me to have a life outside my house,
confident that Janet was getting far better care than I could possibly have
given her. I never stopped loving her or learning from her during those long
years of care. As a good friend of mine once wrote, “Love is not happiness
only.” Janet’s been gone almost nine months now; my life is rich and full;
and I miss her still. May you all know such a love.
> Allen Moore
