Building a Caregiving Team: Finding In-Home Help

Life with a rare disease can require extra at-home help and support. This care varies by person and ranges from skilled hands-on work to running simple errands. Handling all of this may be too much for one person. When this is the case, getting outside help can be the best solution.^1,2

Building a caregiving team

To keep any one person from getting overwhelmed, it helps to build a team of people who can provide extra care. This could include one or more main caregivers, backup carers for emergencies, respite care for taking a short break, and people who can help in other ways.³

Think about who is best suited for what needs doing. For example, a nephew who wants to help but can’t provide hands-on care could do food shopping, driving, or taking notes at a doctor’s appointment. Remember the need for emotional and social care, too. Consider people who could come over just to watch a movie or have a cup of coffee with you.⁴

Managing team members may require juggling multiple schedules. Google’s shared calendars and group mailing lists are free tools that you can use privately for your team. Another service is Lotsa Helping Hands, which offers shared calendars for care team coordination.

Looking for caregivers

Where can you find caregivers? It depends on the type of care you need and how often you need support. It might be as easy as walking next door to ask a neighbor for help. Or, you may need to seek out people with specific training who work with you on a regular schedule.⁴

Ask family, friends, and neighbors

People who are already part of your life could be the first ones you look to for caregiving. Be mindful of their strengths and weaknesses, though, and respect how much and what types of help they are able to provide.⁴

Look for volunteers

Volunteer caregivers may be students, retirees, members of community service groups, and other local people with time and a desire to help. Check your area for volunteer groups or try searching the National Volunteer Caregiver Network.

Get referrals from people you trust

One way to find caregivers is to ask other people who use them or who work with them. If you belong to a support group, talk to other members about their caregiver teams. You can also ask for recommendations from your doctor, nurse, social worker, therapist, and other medical professionals.²

Search through an organization or agency

Government departments, nonprofit organizations, and other groups can connect you to a number of resources. Some of them can also give you advice or help in paying for skilled care. Some places to look include:

Your local Agency on Aging
Many cities, towns, and regions have a program that offers information and resources on care for seniors.

Eldercare Locator
This search tool is provided by the US government’s Administration on Aging and can connect you to various care options. You can also call the service at 1-800-677-1116. They also may be able to help with younger people who need support.

Family Care Navigator
Family Caregiver Alliance offers this state-by-state listing of options for care, including government programs, nonprofit organizations, and private groups.

Visiting Nurse Associations of America (VNAA) - Find a Provider
You can search for home-based care options in VNAA’s list of member groups and agencies, organized by state.

National Adult Day Services Association - For Caregivers
An adult day center can be a great help for caregivers who also work or who need respite care. This website lets you locate nearby services and helps you evaluate whether they are a good fit.

National Respite Locator
This search tool is offered by the ARCH National Respite Network and Resource Center. They also provide resources for seeking funding and choosing the respite care that matches your needs.

Asking the right questions before hiring a caregiver

Before starting the search for a caregiver, it is important to figure out your care needs. Questions to ask yourself include:²

• What care tasks do I need help with?
• How often do I need help with care? For how long – a few hours, an evening, overnight?
• What level of services would be most helpful? Do I need help getting dressed, bathing, cleaning, or cooking?
• Do I need someone with medical training?
• What are my personal likes and dislikes?
• What are my expectations?
• How will I pay for this help?

Other things to consider: Will language or communication be a problem? Is the gender of the caregiver important? Also, be aware of what people will need to know about your living situation. Do you have pets? Is there smoking in your home? Do you have religious requirements?²

Regardless of who you hire, you will need to perform a background check (if they work for themselves) and check their references. One of the advantages of hiring through an agency is that the agency usually performs background checks.²

Taking on a paid caregiver with special training raises more questions, such as:²

• What are their credentials?
• Is their training up-to-date?
• How much experience do they have with this kind of work? Do they have care experience?
• If they work for an agency, what are their reviews or ratings?
• What are their fees, and how is payment handled?

Family Caregiver Alliance provides information on hiring in-home help. This webpage walks you through the steps of assessing your needs, interviewing, carrying out background checks, and arranging payment.