Where to Find Help
Getting outside help does not necessarily mean hiring services through a home care agency or private in-home caregiver. Take advantage of your network and the kindness of others, but be mindful of potential schedule conflicts, time constraints and burnout in your local helpers. For instance, an adult child living nearby with a job and kids at home may become overwhelmed trying to assist you and the person with Parkinson’s. Accept limitations and consider having several options, or a back-up plan if your regular assistance is unable to help.
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In 2016, the Parkinson’s Foundation hosted a Caregiver Summit for that brought together caregivers from all over the U.S. and the world to share experiences and everyday strategies for coping with the complex problems that arise as a result of Parkinson’s. If you missed the event, don’t worry! All the general sessions were recorded and are available on our YouTube channel.
Who Can Help
The worksheet Adding Family, Friends & Volunteers to Your Caregiving can help you decide who you can ask for help, what job that person can do, and what the time commitment would be.
Family and friends
There are often multiple people involved in the caregiving process. In some cases, there is more than one person providing care and assistance: adult children take morning and night shifts, for example, or several family members pitch in at different times of the day or week. In these situations, it is more obvious who your helpers are.
If you are the primary caregiver, assemble your Caregiver B Team! The members of this team are the people who will be your back-up when you have other obligations or take much-needed respite, or who you call in an emergency. You can also ask for one or two volunteers to be “on call” for you on particularly bad days. Look to local family members, friends and neighbors to fulfill this role. Make sure these individuals have the necessary information and training to fill in on short notice.
Be honest, open and specific regarding what is needed when you ask for and accept help from those who are close to you. Even the healthiest families can be stressed by long-term care. It can help to keep everyone up-to-date on your loved one’s needs and condition.
Community-based organizations often provide resources and services for people in the local area, even if you are not a member of that particular organization. These organizations are not likely to provide hands-on help in the home, but they may provide assistance and services such as transportation or meal delivery. They can also direct you to service providers who can help meet your needs.
Look up your local Area Agency on Aging for information on adult day care, case management, home modification, home health services and much more. This organization can help connect you to services in your community and let you know whether services are free or available on a sliding fee scale. City or county public assistance offices, the public health department or the state insurance commission might also be able to provide help or point you to services and benefits.
Faith-based organizations are another good resource. You can contact the one closest to you (regardless of your personal religious affiliation or lack thereof) and make a request for assistance. Funds and other help, like food vouchers, are intended as short-term solutions, not ongoing support.
Many college and even high school students participate in community service organizations. Young professionals as well as retired people also like to volunteer in the community. Depending on their level of comfort and your own, these volunteers might be able to help with a variety of tasks, from grocery shopping to light housekeeping to basic caregiving.
Check if your town has a volunteer agency; the agency will do background checks and training before assigning volunteers.
Some communities have organized respite volunteer programs who train volunteers to stay with your loved one for a few hours while you run errands or attend an appointment.
Enlisting the help of volunteers will allow you to diversify your support system but will also require flexibility and coordination on your part.
Contact the NPF Helpline! Our Parkinson’s disease information specialists can help you locate resources in your area: 1-800-4PD-INFO (473-4636) or helpline@Parkinson.org.
Did you know?
According to research from the Parkinson’s Outcomes Project, the largest clinical study of Parkinson’s ever conducted, women with Parkinson’s have fewer informal caregiving resources and are more likely to use formal, paid caregiving. So if you care for a woman with Parkinson’s, try to enlist support in one or more of the ways listed above!
Types of Care
There are several types of in-home care providers with varying levels of knowledge, specialization and certification:
- Non-certified aides: These professionals go by many names – home helpers, personal care aides, homemakers, companions – and their roles relate to their titles. Most help around the house, though some can perform routine personal care.
- Certified nurse’s aides (CNA)/home health aides (HHA): These individuals have basic training; they can assist with activities of daily living and perform some basic procedures. They always work under the supervision of other health care professionals.
- Licensed practical nurses (LPN)/licensed vocational nurses (LVN): These nurses must pass state requirements and a national exam and are qualified to perform some procedures, but they must work under the supervision of a registered nurse or physician.
- Registered nurses (RN): RNs have extensive education and must pass a standardized exam to earn their license. They can perform all aspects of skilled care and supervise other members of the home health care team.
- Physical therapists (PT), occupational therapists (OT) and speech therapists (ST): These therapists specialize in regaining or preventing further decline of ability to perform different functions related to daily life.
- Social workers/medical social workers: Social workers assess the home environment and can provide counseling in times of need. They can also help locate community resources.
You can hire these providers directly or through home health agencies. Think about whether an individual can provide the services you need or if an agency would be better suited for the job. For example, does your loved one need 24-hour care? Is it more important to you to have back-up staff available or the familiarity of the same person every day, which an agency may not be able to provide?
If you go with an agency, make sure you are working with one that includes the type of help you are seeking. There are differences in types of agencies, based on types of professionals on staff, what services they are able to provide, and if services are covered by insurance.
If you prefer to hire someone directly, you can place an ad in your local paper or search online. There are many websites that specialize in search for care providers, from companion care to personal care to around-the-clock care.
You might also look for a placement agency. These companies charge a one-time finder’s fee for placing a caregiver in a home.The caregivers are often from other countries and may have limited English proficiency.
What to Look for When Hiring a Caregiver
So you can select the right type of caregiver, you first need to assess both your personal needs and the needs of your loved one. Think about the tasks you and your loved one need help performing. Are you looking for someone to provide hands-on care to your loved one, or to help with household chores like cleaning and cooking so you have more time to provide hands-on care? Do you need someone to manage medications and medical equipment?
The amount and type of support you need will determine the type of caregiver you should hire as well as how much it will cost. In-home care can be expensive, so you will need to budget for this or explore what financial help you might qualify for. The Veterans Administration covers some costs for former servicemen, and some organizations offer respite grants for caregivers.
Once you decide what type of help may be most beneficial, it is time to match your needs with potential caregivers’ qualifications and services offered. First and foremost, the agency or caregiver must be able to provide the level of assistance you require. For example, if you need the caregiver to provide bathing, incontinence care and mobility assistance, make sure you ask if those services are available. If you need the caregiver to administer medications or perform any skilled nursing procedures, it is particularly important to ask if the caregivers are qualified to perform these tasks.
Other questions you should ask include (but are not limited to!) the ones below. The answer to all these questions should be “Yes” for you to consider working with the individual or agency.
- Are you certified or licensed by any government agency to provide home care?
- Will you perform an in-home assessment prior to starting service?
- Do you provide in writing the care services provided and clearly describe all rates and fees?
- Do you carry liability insurance?
- Are caregivers bonded and insured for theft?
- Do you provide back-up coverage in case you or your employee cannot make it to work?
- Will you create a care plan?
- Is there a process for updating the services provided if our needs change?
- Is there someone I can call with questions or complaints?
- Do you have a list of references?
Use these worksheets to help assess whether a particular individual or agency would be a good fit for you and the person with Parkinson’s:
- Questions to Ask a Potential Agency Caregiver
- Questions to Ask a Potential Paid Individual Caregiver