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. 

Mr. C 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. 

Mrs. C 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 upset him. 

After a 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.

Finally, 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.

While 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.

The care 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.

Mrs. 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. 

Mr. 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.  

The care 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. 

The care 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.

The care 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.

Eighteen 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. 

Brian 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.

Rona S. Bartelstone is the CEO of Rona Bartelstone Associates, Inc., a national private care management company founded in 1981 to serve the needs of older adults, the disabled and their families.  For more information,  contact her at rbartelstone@rbacare.com

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