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Family Matters
 Caring for aging parents is often a challenge for
adult children. Adding Alzheimer’s disease (AD)
or another dementia to the mix can make the
situation even more complicated. Trying to ensure your
parent is safe and receiving adequate care can seem quite
scary and, at times, even impossible. The Wilsons
understand this all too well.
Carla Wilson lives by herself in the Lower East Side
neighborhood she has called home for more than 50
years. Diagnosed with AD approximately three years ago,
at age 70, Carla had been symptomatic for some time.
In an effort to keep Carla in her own home for as long
as possible, her five children worked collaboratively and
spoke regularly about the best course of action to protect
Carla’s safety,well-being and dignity. With three of Carla’s
children living locally in New York City, one in Virginia,
and another in Puerto Rico, they felt confident they
could provide the care their mother needed as her
Alzheimer’s disease progressed.
Together they developed a plan to provide Mom with
as much assistance as they could. With Carla’s savings
depleted, the children began to think outside the box.
They started to rotate their schedules, using their vacation
time from work, to stay with Carla. They also had found
and registered Carla in an adult day health program, for
which they were paying privately at a rate of $200 per day.
The high cost enabled them to enroll Carla only twice a
week. This worked for a while.
Carla enjoyed the adult day program and the children
were getting by with their rotation plan. That is, until
their vacation days started to run out and their resources
dry up.
Realizing they could not continue like this much
longer and unsure of where else to turn, Elisa, the
daughter who lives out of state, called the NYC Chapter’s
24-hour Helpline for assistance.
Through further conversations with Elisa, it became clear that their arrangement was
not going to work on a longterm
basis. Not only were Carla’s
needs continuing to increase, but
her children—all five of them—
were burning out and going
broke. They had neither the
means nor the time to take
much-needed vacations.
Elisa explained that the family
had applied for Medicaid on
Carla’s behalf and were awaiting a
decision in terms of what kind of
coverage Carla would receive.
“What, if anything, can be done in the meantime to try
and take some of the pressure off of the children?” Elisa
asked.
With the assistance of their Care Consultant, they
applied for a Financial Assistance grant through the NYC
Chapter. A grant was approved to cover the cost of Carla’s
adult day program while they waited to hear from
Medicaid.
No sooner had the grant been approved than Elisa called
with the news that Carla had been approved by Medicaid
for the cost of the adult day program as well as for the
provision of home care services to ensure Carla’s safety.
The family’s relief was palpable, though short-lived. Carla
had a difficult time adjusting to the home attendant sent by
the agency. The family continues to try and think outside
the box in terms of identifying new ways to introduce the
home attendant in a way that Carla can accept.
Navigating the home care system can be difficult. The
family still struggles today, but they are steadfastly working to
ensure Carla is both safe and comfortable with the new
arrangement, and they are making progress. While it isn’t
always perfect, Carla’s children continue to work together as
a team to provide their mother with the care she so deserves.
If you would like to meet with a care consultant, please call the Chapter at 646-744-2900 or our 24-hour Helpline at
800-272-3900.
Caregivers featured in this series have agreed to share their stories. Names have been changed
to protect their anonymity.
— Matt Kudish, MSW
Director,
Helpline &
Care Consultation
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