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Finding Information About Long-Term Home Care

James was a big man – 6’ 4” and weighing 235 lbs. He had smoked since he was 14-years old and, at 65, he learned that the coughing and wheezing which had bothered him for years was a serious lung disease, Chronic Obstructive Pulmonary Disease (COPD). The illness made him short-of-breath even when he moved just a short distance in a room. He could not drive anymore and felt “stuck” at home. He was no longer able to to get dressed or shower on his own. His big size made it difficult for his wife, Marie, to help him. She was much smaller than her husband, and had arthritis with swollen and painful joints.

James had been told to stop smoking but, to cope with his boredom and fear, he continued to chain-smoke. Marie had to be sure she was available to give him more oxygen when he needed it. Several times they had to go the emergency room because he was gasping for air. Marie was exhausted and overwhelmed. She did not drive, and just managing daily life and medical appointments was very difficult. She felt hopeless and helpless and blamed herself for her husband’s suffering.

A friend suggested to Marie that she look into the Senior Benefit Information Center (SBIC) at her local library to get help figuring out how to manage her situation (links to SBIC Website and SBIC Contact Information). There, Marie found Nancy, a trained and well-informed volunteer. Marie talked to Nancy about how difficult and stressful her life had become, how she needed help with James, and how expensive all the prescription drugs had become.

She asked Nancy if Medicare could pay for home care for James. Nancy explained that Medicare only pays for home care for a limited time, generally after a hospital stay while a patient is getting skilled nursing care and rehabilitation therapy. The expectation is that the patient will get back to normal function and the services will end in a reasonable and predictable period of time.

Nancy told Marie that, unfortunately, Medicare does not pay for long-term homemaker services; nor does it pay for help with personal care when this is the only care a person needs. Medicare does not pay for a companion or a housekeeper or someone to do the shopping and laundry, or to help with showering, dressing and getting to the bathroom. This type of care (called Custodial Care has to be paid for privately, by Medicaid, or by long-term care insurance.

Nancy noted that James was already too sick to be eligible for long-term care insurance, which must be purchased before any serious diagnosis, and Marie felt that there was no way she and James could afford to pay for home care on their own. Nancy explained to Marie how to get in touch with a geriatric care manager who would be able to help the couple apply for Medicaid and Managed Long-Term Care Services (MLTC). She also told them about RideConnect and ParaTransit, so she and James could get assistance with their transportation needs. Nancy also mentioned that Medicare pays for an annual screening for depression and mental health counseling services from a clinical social worker or psychologist who is Medicare-certified and accepts assignment.

As Marie left Nancy, she felt relieved and in better control. She now knew that there were resources available for her and James that could make life easier for both of them.