Living With Serious Illness

As much as a family might wish to provide all the care for an ailing loved one, achieving that objective is not always possible. Care giving is hard work. The patient may need 24-hour-a-day attention, and providing one hundred percent of the physical and emotional care for an undetermined period of time may prove to be too much for the family to handle. Fortunately, it's not an all-or-nothing proposition.

The types of care available to your and your family can be provided in many different ways.  Some services are offered at home, some require a move to a specific setting such as an assisted living facility or a nursing home.
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Hospice
Hospice service emphasizes comfort and quality of life. It is specifically designed to relieve any physical, emotional, or spiritual pain experienced by those with an incurable illness. This holistic approach extends to both the patient and the family. Most communities have a local hospice agency where patients can receive care at their residential home, assisted living, retirement apartment or skilled nursing facility.  Hospice does not provide day-in, day-out care, so most people who use this service also have ongoing caregivers available.

Staffing: Hospice uses a team approach to provide physical, emotional, and spiritual support to the patient and his/her family members. The hospice team includes nurses, social workers, and home health aides, as well as volunteers for short respite visits and interfaith chaplains who assist with spiritual concerns. Hospice personnel are trained to maintain comfort on all levels ("comfort care"), with a special emphasis on pain control and management of distressing symptoms.

Hospice services typically include a visit from a nurse as well as help from social workers who can connect the family to social service programs and provide support. Most medical equipment and medications associated with maintaining comfort, like pain medicines, are provided as part of hospice care. Visits from a volunteer are also available and give family caregivers a few hours of respite. Home health aides may come during the week to help with personal care and grooming. In addition, the counsel of a chaplain is available anytime upon request.

The financial side: If the patient is relying upon Medicare to pay for hospice services, two requirements must be met: A physician must indicate that he/she does not believe the patient is likely to live longer than six months; and the patient, family, and physician must agree they do not wish to pursue further curative treatments (for example, chemotherapy or radiation) and instead want to focus on providing comfort care and enhancing quality of life for the time the patient has left.

If the patient has decided to opt for comfort care and let nature take its course, hospice can be extremely helpful for both the person who is ill and for the family caregivers. Physicians often wait for the family to request this service. Unfortunately, many families do not seek hospice care until very late in the disease process. Once they begin to receive hospice support, they often realize they had needed the help weeks and even months earlier. Hospice programs recommend at least two months of care so the patient and family can receive the optimum benefit of the services provided. If you are beginning to think that hospice might be a useful option for your family, we suggest you start the conversation with your doctor, or call your local hospice to find out more information. Sooner is better than later.
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Visiting Nurse Services
Most patients prefer to stay at home as long as they can. The familiar environment provides comfort in and of itself. Visiting nurse services can be ordered by your physician if the patient requires the skilled care of a nurse. With this service, a home health aide may also be available to help with personal care such as bathing and grooming.

Staffing: Services available within the visiting nurse program at Community Nurse & Hospice Care may include: nursing, physical, occupational or speech therapy, medical social work, home health aide, Alzheimer’s care, specialty wound care, telemonitoring for cardiac patients and psychiatric nursing.

The financial side: Many insurers allow for visiting nurse services.  It is important to ensure proper coverage if you are calling in services for yourself.  Referral Center staff at Community Nurse & Hospice Care can also help to determine insurance coverage if you are not sure.  Typically, Medicare and most private insurance will cover skilled care and some personal care, for a limited time. To be eligible, the patient must be considered "homebound" (i.e., leaving home for activities such as medical appointments or church requires considerable effort). Unless the patient is on Medicaid, the cost of supportive services (e.g., meal preparation, light housekeeping, help getting to the bathroom) is not reimbursed by Medicare or insurance and must be paid for by the family.

For more information about the visiting nurse program at Community Nurse & Hospice Care, click on www.communitynurse.com.
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Private Pay at Home
Many home care/visiting nurse agencies offer private pay services at home either alone or to supplement care they are receiving from the agency.  Many patients or their family members elect to private pay for services like personal care and hair dressing, meal preparation, grocery shopping, laundry and companion services.  To learn more about the Private Pay program at Community Nurse & Hospice Care, click on www.communitynurse.com.
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Skilled nursing facilities
Skilled nursing facilities are designed to provide care for patients with numerous or complex personal care needs that require 24-hour-a-day assistance. Depending on the family's finances and caregiving abilities, the best care may involve a move to a skilled nursing facility. If the person you care for is terminally ill and nearing the end of his or her life, you may want to look for a facility that recognizes the special needs that families have at this time. Many skilled nursing facilities have designated private rooms with extra space and beds so family members can visit and stay overnight.

Staffing: At the skilled nursing facility, licensed staff provide supportive, personal, and skilled care services 24 hours a day. In some facilities, the hospice team can also offer spiritual, physical, and social support services for nursing home residents.

The financial side: Medicare has very specific regulations about when it will and won't cover care in a skilled nursing facility. It also includes regulations about when a patient can stay at a skilled nursing facility and also receive hospice care. It is best to talk with the staff of the facility or a hospice social worker to determine if your situation qualifies you for Medicare coverage. Persons with low income may be able to receive assistance from Medicaid if a doctor certifies that they need around-the-clock skilled care.
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Assisted living facilities
If the patient has access to some help, for instance a spouse who is able to provide personal care, assisted living may be a good choice. Assisted living facilities provide assistance with a few tasks such as meal preparation, light housekeeping, and reminders to take medication. These facilities usually comprise unfurnished one-bedroom and studio apartments. They are very social settings and often include organized activities and a central dining room for meals. This arrangement can be very helpful not only for the patient, but also for a caregiving spouse because it offsets the isolation common to people caring for the seriously ill. If the person who is ill needs more help than that provided at assisted living facilities and no spouse or family member is available to give this care, you can usually arrange for home health care or in-home care providers to assist with these needs.

Staffing: Depending on the hiring practices of the facility, nonnursing services may be provided by certified nursing assistants or noncertified personnel. Skilled care must be performed by an LPN or an RN. At most assisted living facilities, a licensed nurse consultant is available but is not necessarily on site every day.

The financial side: Because the care provided in an assisted living facility is considered to be supportive service, Medicare, Medicaid, or insurance companies do not reimburse the cost of the monthly fee. Reimbursable skilled services (i.e., home health care) can be provided in an assisted living facility, as can hospice.
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Adult foster homes
Adult foster homes typically are family-run businesses where the owner of the house takes in older adult boarders who can no longer live on their own. An adult foster home is generally an appropriate choice if the patient needs only minimal help and some supportive or personal care services. (Some foster homes, however, are certified to provide more-intensive care.) As compared with other facilities, adult foster homes are small, with four to eight residents living in a single family home. Some homes provide private bedrooms; others offer the cost savings of sharing with a roommate. Usually the foster home provides the furniture, but residents bring their own personal items to decorate the room. In keeping with the homelike setting, meals are typically served family style, with residents gathering to eat together in the dining room.

Staffing: Depending on the hiring practices of the foster home, supportive and personal care services may be provided by a noncertified or certified nursing assistant. Foster homes usually do not have a licensed nurse on the premises. Regulation of adult foster homes varies quite a bit from state to state.

The financial side: As with an assisted living facility, most of the care provided at a foster home is supportive in nature and therefore is not reimbursed by Medicare or other medical insurance. If the owner of the foster home is amenable, reimbursable skilled care can be provided in the foster home setting by outside services such as hospice or home health care.
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Two safety notes
Many family members worry about the safety of their loved one when they need to have others provide care. To ease your mind, when you call various facilities about their services, you may want to ask if a criminal background check are a routine part of the company's hiring procedure. All of our staff members at Community Nurse & Hospice Care go through a strict hiring process and criminal background check.

It is important to be knowledgeable about the quality of care that agencies provide.  To learn more about how our agency compares to others in the area, the state and nation, click on www.medicare.gov.  Community Nurse & Hospice Care is very proud to have some of the best outcomes for our patients.
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