Life does not stop with a Parkinson’s diagnosis – but things change. Sometimes the person with Parkinson’s and the primary caregiver isolate themselves, withdrawing gradually from participation in the community and prior social life. This can happen for a variety of reasons: the Parkinson’s partner’s preference that “only s/he can meet my needs”; the caregiver’s belief that no one else can adequately provide care or should be saddled with the burden; or the financial pressures of hiring help to facilitate social involvement. Whatever the reason, don’t let it happen to you!
Self-Care Isn’t Optional. It’s Mandatory!
You can’t be a good caregiver to someone else if you don’t take care of yourself, and taking care of yourself requires finding balance in your life. Regular breaks from caregiving are an essential part of this balance. Take an hour daily, an afternoon weekly or a day monthly – whatever you can manage. These breaks from your daily routines and responsibilities, often called “respite,” are especially important if you care full-time and are with the person you care for 24 hours a day. Counseling, adult day care, a home health aide or whatever solution you come up with should be looked at as early interventions, not last-ditch alternatives.
In 2016, the Parkinson’s Foundation hosted a Caregiver Summit that brought together caregivers from all over the U.S. and the world to share experiences and everyday strategies for caring for the person with Parkinson’s and caring for yourself. If you missed the event, don’t worry! All the general sessions were recorded and are available on our YouTube channel.
Respite can range from a few hours to a longer vacation and can be achieved in a variety of ways. Time off can help both you and the person with Parkinson’s relax and recharge, as well as socialize with other people.
Prepare Your Back-Up Team
Regardless of the length of time you will spend away from caregiving, you need your backup team ready. Prepare and train one or two friends or family members to fill in for you, or investigate local respite care options. In-home services are available with a range of options, including companion, home health and housekeeping services. Out-of-home respite care options include adult day programs and residential facilities, which may offer the option to stay for a night, a few days or even a few weeks. Use this respite care locator to find respite options available near you.
Take Time Off
When you are comfortable with your respite care solution, regularly schedule time away from your caregiving responsibilities. This may be something as simple as turning off the cell phone and checking into a nearby hotel, but it is essential for long-term caregivers.
Seeking help does not make you a failure, and it is not selfish. It is an insurance policy against overtaxing yourself, so you can continue to provide quality care for the person with Parkinson’s.
It is even possible to enjoy time away from your role as caregiver while spending time with your loved one. The biggest joy-killers in your relationship are your hands-on duties, so a short outing or trip together (to a destination where care is provided) can be an opportunity to find joy in your relationship with the person you care for.
All caregivers need an inner circle of friends they can call day or night without feeling like they are imposing. But friends are not there only so you can vent or ask them for help.
Maintaining your social connections is an integral part of your emotional wellbeing. Stay connected with family and friends. Plan activities with them if they are local, or keep in touch through e-mails, texts and phone calls. Talk about things other than caregiving.
Join a club and pursue your hobbies. As a caregiver for someone with PD, your life is different than it used to be, but your social interactions should not be limited to the person you care for. A simple change of scenery can be mentally stimulating and emotionally refreshing.
If you have or had a career in any field that is relevant to the experience with Parkinson’s, others in your family will look to you to take responsibility for decisions. For example, if you are a doctor, relatives might ask you to confirm every recommendation made by the care team; if you are a lawyer, family might expect you to draft Legal documents in which you spell out your end-of-life wishes. These often come in two parts. The first, sometimes called a living will, advises your doctor and healthcare team of your wishes for end-of-life care, such as whether you want to be resuscitated or placed on a respirator if your heart or breathing stop. This decision is referred to as DNR, Do Not Resuscitate, or AND, Allow Natural Death. The second part of an advance directive, often called a medical power of attorney, designates a person you want to make your healthcare or end-of-life decisions should you become unable to do so for yourself. and other legal documents. If you feel comfortable assuming these responsibilities, that is your prerogative. However, it is ok if you want to step out of your professional role and just be the spouse, son or sister. Your role as caregiver is a job in its own right, and there are outside parties that can help you make objective decisions and prepare paperwork.
If you work in addition to caring for your loved one with Parkinson’s, you have distinct benefits, such as financial independence, time away from caring and social networks, but you also have additional challenges. If you are considering leaving work to assume full-time caregiving duties, ask yourself the following questions:
- Can I manage with less money (and any effect on a pension or retirement plan)?
- How do I feel about the potential loss of independence, social contact and valuable skills?
There are alternatives to resigning, such as taking a career break or early retirement. The decisions you make about work will depend on your personal circumstances. It is important to assess your needs and get as much information as you can about your options before making any decisions.
Should I Tell My Employer that I Am a Caregiver?
Sharing that you are a caregiver is not a requirement, but your employer may be able to offer flexibility and might be more understanding of sudden absences or requests for leave if he or she is aware of your situation. As a working caregiver, you are likely to need a range of support:
- Time each day to call or check on the person you care for
- Flexible working arrangements (part-time or remote work)
- Leave arrangements (paid or unpaid at your employer’s discretion, to cover intensive periods of care)
Look into your company’s personnel policies.
Your employer might offer programs or special assistance for caregivers. Check your employee handbook or staff website, or talk to someone from the human resources department. If you are a member of a union, a union representative might be able to negotiate with your employer on your behalf.
Prepare in advance.
Before you approach your boss, decide if you are only going to inform him or her of your caregiver status, or if you are going to request specific accommodations. Jot down the most important points you want to be sure to cover.
Be upfront and positive.
When you meet with your supervisor, highlight your strong points and the things you do well. Then indicate your willingness to work together to identify potential accommodations to help you continue to do your job and maintain your role as caregiver.
Get it in writing.
Send an e-mail to your manager or HR representative with your understanding of the agreed upon conditions. This will give everyone a reference point.
It is likewise a personal choice whether you decide to tell coworkers about your role as caregiver. If there is someone at work that you trust, you might find it helpful to talk to that person about your situation.
Can I Get Time Off in an Emergency?
The Family Medical Leave Act (FMLA) entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave. Among other reasons, eligible employees are entitled to twelve workweeks of leave in a 12-month period to care for your spouse, child or parent who has a serious health condition.
Situations where leave might be taken include:
- An acute emergency, such as a fall, that results in an ambulance visit
- A disruption or breakdown in care arrangements
- If the person you care for falls ill
- The need to make longer-term arrangements for the person you care for