Respite Care

Respite care is a service that provides a much needed break for family caregivers.

Respite care gives you time to take care of yourself—because if you don’t take care of YOU, you cannot care for your loved one.

There are many different ways to use respite care. It can be provided in your home or elsewhere. A support network of family and friends can come over to help, or you can pay a professional agency or individual.

Families often rely on a variety of arrangements. Decide what works best for you. Regularly scheduled days and times can allow you to exercise, run errands, meet friends for lunch, etc. ​

Help from family and friends

Most families organize loved ones who volunteer their time. Nowadays helpful online tools like Lotsa Helping Hands and Caring Bridge can make coordination much easier. The ALS Association’s Care Connection program can show you how this model works.

How much will it cost?

It's free.

What else?

  • There is probably more support available than you realize. Family and friends often want to help, but may not be sure what they can do.
  • It is usually easiest when a close friend or relative coordinates the process.​

Home care agencies

You can hire an agency that sends trained caregivers to your home on a predetermined schedule. ​

How much will it cost?

Rates will vary by agency and location. They may charge $19–$25 per hour, with minimum blocks of four hours.

What else?

  • Agencies are more expensive than individual caregivers, but you will be ensured consistency and reliability. If your regular caregiver cannot make it, another will fill in.
  • Agencies will take care of paperwork, logistics, and training. ​

Individual caregivers

You can hire an independent caregiver to come to your home on a set schedule.

How much will it cost?

Rates will vary, but individual caregivers may charge $10–$15 per hour.

What else?

  • Hiring an individual caregiver should be less expensive than an agency, but there may not be a backup option if your caregiver gets sick or goes on vacation.
  • You will be responsible for paperwork like tax forms and other standard employer insurance and benefits.

Additional Information

Most people have to pay out of pocket for respite and non-medical long-term care. Medicare will not cover respite care, unless it's for hospice.

Here are some ways you might be able to receive assistance:

  • Some state Medicaid programs cover long-term care services.
  • If you purchased a long-term care policy before your ALS diagnosis, check your policy to find out what is covered.
  • Ask your local ALS Association chapter if they have a free respite program.
  • Talk with your ALS clinic social worker to find out if there is assistance available through your state or faith-based or charitable organizations.​​
  • The VA health program includes many benefits including respite care benefits.

Veterans

Ask the VA about your respite care benefits.