Parkinson’s disease (PD) is a progressive condition, which means there will be a progression of care needs as the disease advances. The best time to learn about in-home care options as well as assisted living and skilled nursing facilities is before those options are needed.
Knowing about available options ahead of time will make your life easier if this transition becomes necessary. Remember to take advantage of your network. Friends and family are likely willing and able to help you in various ways, even if they do not live nearby. Your local community is also a good source of diverse resources.
When is it time to get outside help?
Answering this question requires understanding and balancing the wants and needs of both the person with Parkinson’s and the caregiver.
Parkinson’s progresses differently in every person. At first you might just need help with the groceries every now and then. As the disease advances, your needs might evolve to include a day care service, or a home health aide for a few hours at a time. Eventually full-time home care or a skilled nursing facility might be necessary.
Not everyone wants an extra hand, even when you really need it. It can be hard to accept this reality and deal with the emotions it brings up. However, as your loved one’s care needs change, you must continually reevaluate your need for help.
Many people promise to always care for their loved one themselves, at home. It is difficult to anticipate that in late-stage Parkinson’s, many people cannot help with their own movements or activities of daily living. This means regular heavy lifting in addition to a myriad of other daily tasks. You may feel conflicted if you need to break your promise because you don’t have the stamina — or the technical skills — to provide the kind of care your loved one needs.
Ultimately, when it becomes too difficult to balance your own life with your care partner role, or when the physical burden is more than you are capable of, it is time to get outside help.
It can be hard to plan for help with the unpredictability of PD, but if you put it off for too long, you might feel overwhelmed. To start, pick a time of day for a helper to come that is convenient for you. Is there a particular yoga class you’ve been missing or wanting to try? Schedule help so that you can go a couple times a week.
If you progress to getting help for longer hours or more days per week, try to maintain some elements of your routine, so you don’t feel like you’re completely giving up control. For example, you might have outside help come in the afternoons, so you can enjoy your morning routine.
Prepare and Plan for Change
When making the decision to seek support in your caregiving, be sure to consider the impact of a caregiver change on you, any new caregivers, and the person with Parkinson’s. According to research from the Parkinson’s Outcomes Project, caregiver transition can be associated with worsening of clinical outcomes and health-related quality of life.
Caregiver strain is a particular consideration for the non-professional family caregiver introduced to PD care. This does not mean you should remain in an unsustainable caregiving situation. Instead, make sure everyone involved with the transition is prepared, and plan accordingly.
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. Accept limitations and consider having several options, or a back-up plan if your regular assistance is unable to help.
Getting Help from Loved Ones
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.
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. If you care for a woman with Parkinson’s, try to enlist support in one or more of the ways listed above!
Hiring a Paid Caregiver
As you consider hiring a caregiver, assess your personal needs and the needs of your loved one. Think about the tasks you both 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 caregiver must be able to provide the level of assistance you require.
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.
Utilizing an Agency
You can hire a paid caregiver directly or through home health agencies. Home healthcare agencies may be affiliated with hospitals or privately run and focus on the medical aspects of care. Services from these agencies are generally limited by insurance or Medicare to a certain number of visits. Their services may be short or long-term.
Think about whether an individual can provide the services you need or if an agency would be better suited for the job.
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.
Questions to Ask
It is a good idea to interview a potential paid caregiver. Questions can include:
- Are you certified or licensed by any government agency to provide home care?
- Will you perform an in-home assessment prior to starting?
- Can you send me care services provided, in-writing? With a clear description of all rates and fees?
- Will you create a care plan?
- Do you have a list of references?
Questions for an agency (in addition to the above):
- 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?
- Can I update the services provided if our needs change?
- Is there someone I can call with questions or complaints?
Free or Low-Cost Local Assistance
Community-based organizations often provide resources and services for people in the local area, even if you are not a member of that 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.
- Area Agency on Aging: Area Agencies on Aging provide services to aging populations. They often have many locations in every state. Search for your local Area Agency on Aging for information on adult day care, case management, home modification, home health services and 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: If you are comfortable working with a religious organization, they can be a good resource. Contact the one closest to you (regardless of your personal religious affiliation or lack thereof) and make a request for assistance.
- Volunteers: Many college, and even high school, students participate in community service organizations. Young professionals and 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 that train volunteers to stay with your loved one for a few hours while you run errands or attend an appointment.
Find Resources Near You
Preparing Outside Caregivers
Leaving your loved one in someone else’s care is not easy, but is often an invaluable help. Work this other caregivers to familiarize them with your loved one’s particular needs.
Help the secondary caregiver understand Parkinson’s, so they can better relate to your loved one. Even seasoned professionals might not know about Parkinson’s disease, and you shouldn’t assume that others who spend time with your loved one know everything they need to know either!
If you are planning to have someone help you with care, it is a good idea to prepare some materials to educate them about Parkinson’s. Print our About Parkinson’s fact sheet and any other symptom-specific fact sheets at Parkinson.org/Library.
Getting to Know the Person with Parkinson’s
Once they know about the disease, caregivers need to get to know the person. To provide the best possible care for the person with Parkinson’s, it is helpful for the caregivers to understand your loved one’s history, personality and preferences as well as the family situation.
Explain or provide a written document with:
- Daily routine
- Insights on your loved one’s childhood and life (such as, previous occupation)
- Family stories
- Favorite hobbies, likes, dislikes
- Write down names and brief description of relatives or friends who are involved in caring for the person with Parkinson’s.
Make a Care Plan
A care plan is a document that helps ensure that all necessary steps are taken to provide the best possible care on an ongoing basis. You, the person with Parkinson’s, and caregivers should collaborate to develop a care plan and checklist that identifies the care and support needs of the person with Parkinson’s.
Write down all steps that will be taken to address each need. Make the document easy to read, so that all who provide daily care and assistance can easily understand it.
Updating the Care Plan
Communication is key to better care, so make sure to check in regularly with the caregivers, particularly as your loved one’s needs change over time. The plan will need to be updated to reflect the progression of Parkinson’s disease, so this is a good time to evaluate the caregiver relationship.
Voice any concerns about the quality of care being provided. Stay calm and respectful during the conversation but follow up to make sure that problems are addressed.
Remember the Role of a Professional Caregiver
Paid caregivers are hired to keep the person with Parkinson’s safe and look after his or her well-being. Caregiver and care recipient might form a bond over time, but it is important that paid caregivers maintain professional boundaries. They should not become involved in familial or financial conversations and decision-making.
While your role as a family caregiver is emotional and complex, remember that no matter how nice the caregiver is or how much they likes you or your loved one, it is a job.