In this Edition:

Intergenerational relationships are often complicated by the need for providing complex, chronic care over the span of many years. While families have known for a long time that most chronic care is provided in the home setting by family members, the government is just getting around to the recognition that we need to “redesign the health care delivery system to provide targeted, accessible, continuous and coordinated, family-centered care to high-need populations,” as announced in the New England Journal of Medicine, in September 2008.

Since 1967, the American Academy of Pediatrics (AAP), the World Health Organization, the American Academy of Family Physicians and others have been promoting the concept of the “patient centered medical home” according to the NEJM article. This concept takes several forms, but primarily recognizes that families are responsible for much of the complex care that is provided to the chronically ill. It also recognizes that communication among healthcare professionals and across settings has been less than ideal for the care recipient and his/her support system. This leaves families, who have no medical training, to:

• coordinate care
• communicate with a multiplicity of professionals
• watch for new symptoms
• report medication interactions and side effects
• monitor nutrition
• and monitor and provide for safety needs

That’s a heavy load! And these tasks don’t even recognize the need to have a family relationship with the care recipient, with other family members or the need for the usual daily activities that it takes to keep a household running.

It is true that there have been some limited programs that test more comprehensive models of care such as the PACE Program (Program of All-inclusive Care for the Elderly) and the Social HMOs. However, these programs tend to serve small numbers of individuals, in specific geographic areas, and usually with limited financial resources. None of these programs have become available on a national basis to the majority of people with chronic health concerns.

Caring for a loved one, while leading an otherwise normally complicated life puts enormous stress on families. The stresses are:

• Physical - from giving physical help and even for long distance care givers who have to use vacation time to visit ill relatives


• Emotional - creating feelings of inadequacy, concerns about doing one’s best and making the “right” choices for a loved one, and often guilt about one’s feelings toward the care recipient


• Social - caregivers often become socially isolated because they are too tired to make the effort to be social and because friends sometimes pull away from people with chronic health problems


• Financial - research reports that caregiving families have higher than average out of pocket medical expenses – often as much as $5,000 – $10,000/year

Although Rona Bartelstone Associates, a member of the SeniorBridge Family, isn’t providing the comprehensive care of the medical home, we are working to fulfill many of the tasks that families take on, in order to reduce their sense of stress and burden. By relieving some of the responsibility for all of the care that is needed, families can hopefully save their energy and their resources to have a more fulfilling relationship with the care recipient. Rather than focusing exclusively on the task of care, family members can have the time and the luxury of relating to their loved one as a person rather than as a “responsibility” all of the time.

This relief, as explained in the success story this month, can provide a great deal of peace of mind to the family and to the care recipient, who often wishes not to be a burden. Call us today if you have concerns about caring for a loved one, 800.678.7224.

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One day the Care Manager received a call that Mr. H had fallen and fractured his hip. He was having surgery and his son would be down to visit. For the next six months he was in hospitals and rehabilitation facilities several times as the hip was not healing properly. Also, he had developed a wound that was not healing. His sons and the Care Manager spoke continuously and they felt connected to their father knowing that he was receiving appropriate care and that they were well informed. When he was discharged from therapy, Nina Rothstein, LCSW, worked with the family to access Medicaid financial support because he had spent down his funds and he would be entering a long term care nursing facility.

The Care Manager carefully monitored all medical decisions, treatment and care in conjunction with the service providers and the family. Mr. H had so many doctors and services that it was important to make sure that all communication was accurate and timely to assure the quality and consistency of his care. Ms. Rothstein visited the client at least once a week to review the medical charts, speak to his physical, occupational and speech therapists, the dieticians, wound care nurses, nurses aides, unit nurses and social workers. This careful monitoring from the hospital setting to the rehabilitation facility and finally to the nursing home was crucial to assure that Mr. H had care that was consistent with his needs, resources and preferences, while respecting his individuality and dignity.

In time, it became evident that this client was declining and not going to recover from his illnesses. The Care Manager spoke often with Mr. H and the family about his end of life wishes for himself and his family. This support along with the years of trust and relationship gave Mr. H and his family the “peace of mind” they needed to get through a challenging time and the ultimate loss of self and parent.

When intergenerational relationships can be supported through health and emotional challenges, there is an opportunity to appreciate one another and to grow from the transitions that life requires. Facing chronic illness and the end of life are never easy. With the support of a Care Manager who understands both the physical and emotional needs of older adults and their families, even these times of “crisis” can be eased.

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Harriet Goldstein: In Memorium

The world of Social Work lost one of its role models recently with the passing of our beloved Harriet Goldstein, who worked on behalf of the disadvantaged until the very day of her death. Harriet was passionate about her chosen profession and the opportunities that it gave her (and her colleagues) to have a positive impact on the lives touched by her work. She worked in programs that addressed the entire lifespan, and she was always a fierce advocate, a demanding teacher, an indefatigable innovator, a prolific writer and a tireless community organizer. Her personality was boundless, as was her ability to love, laugh and savor life and relationships. She was a unique gem who graced the lives of everyone fortunate enough to know her.

We at Rona Bartelstone Associates were among those fortunate enough to call her friend, to revel in her personality and to learn from her example. She lives on in our hearts and in the fervor with which we pursue our careers as professional social workers. Our prayer is peace for her soul and her family and that we may emulate all of her best qualities! Go in peace Harriet and be a light for our path – we have a long way to go!

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