Assisted living facilities
At some point, even the most devoted caregiver may need to turn over a significant portion of the loved one’s care to professionals. It’s emotionally very difficult to place a loved one in a long-term care facility, but his or her medical needs, or a caregiver illness, financial realities or other factors may make this essential.
“The level of care Mom needs now is great and we are drowning a bit trying to work and care for her, too. We called hospice, I asked that they be sensitive as we really haven’t discussed all the possible symptoms that she might develop since everyone is so different.”
“Get all your equipment before you sign on hospice; insurance won’t pay for these items once you’re in hospice, but will if you have a home health agency. Some hospices accept people with feeding tubes, BiPAP and CoughAssist but prefer them to be in place.”
“Ask if a facility has ‘ALS protocols’ — procedures useful in caring for people who are paralyzed, speechless or on a vent, such as Hoyer lift operation or communicating via alphabet board. If not, ask administrators if they’re willing to learn about ALS, make changes and train staff to meet the unique needs of ALS patients.”
Most of the time, some percentage of the costs of the facilities described here is covered by private insurance, Medicaid or Medicare, or the person’s SSI or SSDI income. Once a person with ALS goes into long-term care, Medicare may no longer provide certain equipment. Check with an expert to learn what equipment should be obtained prior to moving to a longterm care facility.
Long-Term Care: How to Plan and Pay for It, 9th ed., by Joseph Matthews, NOLO, 2012 (updated annually)
Assisted Living Federation of America, (703) 894-1805
Types of Long-Term Care, Medicare.gov
National Clearinghouse for Long-Term Care Information, U.S. Department of Health and Human Services
Eldercare Locator, U.S. Administration on Aging, (800) 677-1116
Hospice services can provide a transition from care at home to full-time care away from home. Hospice care is available to people in the end stages of a terminal disease.
Hospice staff and volunteers coordinate with the patient, physicians and family members to provide day-to-day care and comfort, in the home or at other locations. Services include administering medications, including those to ease suffering; performing personal hygiene tasks and minor medical procedures; and offering compassionate companionship and support. Most hospice services provide support to the family as well. The hospice service may provide a lot of equipment for the patient at home, including bed, bedside table, alternating pressure mattress, roll-in shower, commode, medications and other supplies.
In general, hospice patients receive only comfort care and symptom management, not life-prolonging devices or therapies. However, pre-existing feeding tubes are OK and some hospice programs also accept patients who already are vented.
Hospice care often is provided in the home, but can be conducted in hospice centers, hospitals, nursing homes or long-term care facilities. The cost is covered under Medicare, Medicaid and most private insurance plans. (See Chapter 7.)
Call local hospice services when your loved one needs help with breathing, feeding, turning, etc. They can do a home evaluation and explain what services may be available and when. Try to find a hospice whose staff is familiar with ALS.
A 2007 study funded by the National Hospice and Palliative Care Organization found that hospice care seems to prolong the lives of some terminally ill patients by days or even months. Some reasons for this may include:
Not Gloom and Doom: Demystifying Hospice, MDA/ALS Newsmagazine, January-February 2010
Research Links Hospice Care with Prolonged Life, MDA/ALS Newsmagazine, July-August 2007
Hospice: Comfort and Care, MDA/ALS Newsmagazine, November 2003
American Hospice Foundation, (800) 347-1413
HospiceDirectory.org, a subsidiary of Hospice Foundation of America, (800) 854-3402
Hospice. A website offering information, as well as local and international listings.
Hospice Patients Alliance, (616) 866-9127
National Hospice and Palliative Care Organization, (800) 658-8898
Assisted living bridges the gap between independent living and nursing homes. Residents in assisted living centers aren’t able to live by themselves but don’t require constant care either. This may be a feasible arrangement for someone with ALS for a period of time, though ultimately the progression of the disease will likely require placement in a hospital, hospice or nursing home.
Assisted living facilities offer help with activities of daily living such as eating, bathing, dressing, laundry, housekeeping and taking medications. The facility should create a service plan for each resident, detailing personalized services required by the resident and guaranteed by the facility, and update it regularly. People who live in newer-model assisted living facilities usually have private apartments, and there are common areas for socializing, as well as a central kitchen and dining room for preparing and eating meals.
In 2012, the national average cost of an assisted living facility was $3,300 per month, which isn’t likely to be covered by insurance. Other terms used for assisted living facilities include: residential care, personal care, adult congregate living care, supported care or enhanced care.
|“Ask if a facility has ‘ALS protocols’ — procedures useful in caring for people who are paralyzed, speechless or on a vent, such as Hoyer lift operation or communicating via alphabet board. If not, ask administrators if they’re willing to learn about ALS, make changes and train staff to meet the unique needs of ALS patients.”|
A nursing home or skilled nursing facility (SNF), also sometimes known as a rest home, is a place of residence for people who require constant nursing care and have significant deficiencies with activities of daily living. Physical, occupational and other rehabilitative therapies are offered. Nursing homes are designed to care for very frail people who can’t care for themselves and have numerous health care requirements.
Inquire about assisted living facilities and nursing homes in the community and be sure they can provide all the care your loved one requires. Be sure they permit ventilators, feeding tubes, etc.
After years of caring for a loved one with ALS, having him or her live outside the home is a drastic transition. It’s another loss to grieve, and usually isn’t a change that anyone welcomes. The caregiver faces the shock of a suddenly changed role, just as the person with ALS may feel abandoned or adrift in unfamiliar surroundings. There’s also a sense of relief for the caregiver as duties are reduced, but it comes mixed with sadness, loss and emptiness.
The caregiver and person being cared for can maintain their close relationship after placement in a long-term care facility, and the caregiver will remain vitally involved in care decisions. The loved one still needs a caring person to be sure that things are going well and the right care is being provided. Get to know the staff at the facility to understand who’s responsible for what and who is your best ally if there are problems.
One positive aspect is that now time together can be focused on each other, rather than on chores to be performed.
Nursing Homes: A Good Move?, MDA/ALS Newsmagazine, January 2007
Nursing Homes: Getting Good Care There, by Sarah Greene Burger et al., The Consumer Voice, 2002
ALS Information for Nursing Home Staff (From Both Sides by Diane Huberty, neurology-certified RN and person living with ALS)
National Consumer Voice for Quality Long-Term Care (formerly National Citizens’ Coalition for Nursing Home Reform), (202) 332-2275
Muscular Dystrophy Association — USA
222 S. Riverside Plaza, Suite 1500
Chicago, Illinois 60606
The Muscular Dystrophy Association (MDA) is a qualified 501(c)(3) tax-exempt organization.
©2015, Muscular Dystrophy Association Inc. All rights reserved.