Caregiving is never easy and it takes many people to provide the
appropriate support services for all. Traditionally, we think
of the physician as the point person for primary care. However,
with all of our medical advances, most diseases have become chronic
illnesses that require a range of health, social, emotional,
environmental and physical services in addition to medical care.
Since the health and social service systems are fragmented and
difficult to navigate, private care management has evolved to create
a partnership that guides families through the caregiving process.
This partnership between the care manager and the family
facilitates the coordination of appropriate care at the appropriate
time, in the right setting and in accordance with the preferences
and resources of each situation. What a colleague of mine
calls the “Goldilocks” approach to individualizing care for each
situation. Rather than trying to describe the partnership
between the family and the care manager, below is an actual
situation that resulted in assuring that the care recipients were
well provided for, the family was given peace of mind, and the
doctor had someone who could assure that his plan of care was
actually being implemented in the home.
One Family’s Story
Mr. and Mrs. Chasser (not their
real name) were faced with multiple care decisions as they were
living in South Florida away from their family and beginning to deal
with long term care needs. They were a worldly couple who had
saved enough financial resources to meet their needs in retirement.
They had done some traveling and were now content to stay at home as
they began to experience some physical and cognitive changes.
was 82 and relatively healthy, though he was beginning to experience
some memory loss. For this reason he had asked his wife to
take over the daily money management. Mrs. C was 80 and had a
heart condition for many years. She began to tire more easily.
She also had some osteoporosis that caused discomfort and limited
her ability to walk long distances.
was also becoming increasingly anxious. She remembered her
mother-in-law’s “senility” and feared this was happening to her
husband. She had never had to be responsible for money
management, investments or legal issues and did not know what she
would do if her husband lost his ability to handle these needs.
On the other hand, she was afraid to ask him to teach her because he
was very sensitive about his memory loss and she did not want to
trip to visit their grandchildren, Mrs. C experienced a stroke that
caused her to become very weak and she lost her language.
Although she was expected to regain some of her mobility and speech,
she would never be as active again. While Mrs. C was in the
hospital and rehabilitation center, Mr. C realized that he could not
manage at home alone. He was unable to take care of the
shopping, meal preparation, laundry or housekeeping. He also
had difficulty dressing himself because his wife had always laid out
his clothes for him. He became very frightened and began to
knock on the neighbors’ doors at all hours of the day and night.
one neighbor called the Chasser’s son to express her concern.
The son had not been aware of the extent of his father’s memory loss
or his inability to manage at home alone. Mr. C kept telling
his son, Brian, that he was managing just fine. Brian flew in
to visit his parents, as planned, when his mother was going to be
discharged from the hospital to a long term care facility for
rehabilitation. Upon arriving at his parent’s home, Brian
found his father sitting in the dark crying because he could not
remember when his son was coming and he thought that his wife had
already been moved and he could not remember where she was sent.
Furthermore, there was no food in the house, which was unkempt and
Mr. C was wearing dirty clothes. Brian suspected that his
father hadn’t bathed in several days.
the hospital social worker was able to assist Brian with his
mother’s care, she was unable to help with his father because he was
not a patient. She suggested that Brian hire a private care
manager, who would be able to help him coordinate the care of both
parents regardless of the settings they were in. The care
manager could also help with integrating the different services and
payer sources to provide the optimal plan most efficiently.
manager spoke with Brian and discovered that there were several
levels of need and a variety of sources of support for his parents.
After an assessment of each parent, the care manager helped Brian to
determine the best care for his parents at this point and to help
him identify what the future needs might be as well.
Chasser did go to a rehab facility where her care was covered by her
Medicare and supplemental insurance policies for two weeks.
Depending upon her progress, the care manager would help the family
determine if she should stay in the facility or come home to
continue therapy. Because the Chassers had a long term care
policy, they would be able to continue rehabilitation beyond the
Medicare benefit period.
Chasser also needed extensive care. The care manager felt that
Mr. C was experiencing an exacerbation of his cognitive losses
because of the stress of his wife’s illness that was causing him to
feel frightened and stressed to the point of depression. The
care manager arranged for a complete neurological and psychiatric
work-up through a local memory disorder center. This resulted
in a diagnosis of probable Alzheimer’s disease. This diagnosis
qualified Mr. C to access benefits for home care under his long term
care policy as well. An aide was placed with Mr. C at home on
a twenty four hour basis. This was seen as temporary until his
wife’s plan of care was more definite.
manager also arranged community services for Mr. C. It was
felt that he could benefit from a day care program to provide him
with stimulation and socialization, while his wife was in treatment.
A medication dispenser was brought into the home to assure
compliance with medication routines. Grab bars and a shower
seat were added to the bathroom to make it safer. A personal
emergency response system was installed in an effort to determine if
Mr. C could learn to use it in anticipation of his wife returning
home and the possible need for this service.
manager also worked with Brian to help him understand how the long
term care policy would work and how to allocate its use so that the
pool of funds would not be depleted too quickly. This was a
particular concern for Mr. C because he was healthy and could live
with his dementing illness for many years. If he used all of
his benefits early on in the disease process, this would leave him
without support in the later stages of the illness when he would
need more help, not less.
manager was able to work with this family to bring Mrs. C home after
her rehab stay. They were able to be alone for 14 hours each
day with the ERS in place. Gradually, as Mrs. C became more
frail and Mr. C more forgetful, they had to again have 24 hour care.
Mr. C, however, was able to continue in day care so that the aide
would not be overwhelmed with the care of both of them every day.
months later, when Mrs. C died, the care manager helped the family
support Mr. C through his grief and eventually move him to an
Alzheimer’s specific assisted living facility. After a brief
adjustment period, Mr. C began to flourish in the new residence.
He began participating in social activities, he made many friends
and he once again seemed content.
and the rest of the family were grateful to the care manager who
helped them navigate a complex, fragmented system of health and
social services for his parents. Because of his lack of
knowledge of these systems and the particular illnesses that his
parents had, he felt that he would not have been able to handle his
parents’ care as well as he had. He was also relieved that
although they spent their own resources to pay for their care, there
was still an estate that would help him with his children’s college
education. Finally, as a result of the education he received
through this wrenching experience, Brian began to work on his own
financial, insurance and legal planning for the potentiality of his
own disability. He did not want his children to be left
without guidance, as he had by his own parents.
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