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Parkinson’s disease (PD) is a neurological disease that primarily affects motor skills, and in many cases can also attack cognitive ability. With PD, nerve cells are destroyed in areas of the brain that control movement. This area is called the Basal Ganglia, and unfortunately, the damage is usually irreversible.
The Basal Ganglia sends signals to the thalamus and then to the cerebral cortex. This controls movement of the entire body. Nerve cells in the brain communicate by using neurotransmitters. A chemical called dopamine, which is also a neurotransmitter, is produced in a group of cells called the substantia nigra, and this also promotes and controls movement.
When these cells die, they can no longer produce and send dopamine so the signal to move doesn’t get communicated. This is the very essence of Parkinson’s disease, and by the time a person starts to experience adverse motor symptoms of Parkinson’s, they’ve already lost over half of their dopamine producing cells.
While Parkinson’s is a seriously challenging disease, caring for an individual with Parkinson’s can be equally or more challenging, especially because PD is a progressive disease, and the demands get tougher and tougher. Several PD caregivers who have been through the process advise that the key to managing one with PD is through educating yourself on the disease and preparing for your caregiver role.
Early Parkinson’s requires more emotional support and less hands-on care, so early on, it’s a good time for those caring for the PD victim to prepare with education, taking care of yourself, receiving additional help if you need to, encourage the person with PD to stay active and maintaining a good relationship with your PD loved one. Following the below suggestions when caring for those with Parkinson’s Disease can help:
Take Care of Yourself First
More than anything, you as a caregiver have a tremendous responsibility for the care of your PD patient. And more than ever, it’s important for you to take care of yourself first. Can you really take care of someone else with a disability as challenging as Parkinson’s disease when you’re not healthy and fit yourself? The answer is: Probably not. And sure, this is sometimes difficult and easier said than done, but by maintaining good physical and mental health, you are helping yourself and your loved one at the same time. Try to get some physical exercise in every day, even if it’s a 15-minute walk. Research suggests this facilitates a better mental attitude, and equips you with dealing with stress that comes along with being a caregiver. Whenever possible get your sleep, take breaks, make and keep social activities and try to keep your sense of humor as well.
Your mental health is important as well. Join a support group to help you meet people who are going through what you are going through, vent frustrations, give and receive mutual support, and exchange resource information and coping strategies.
Having friendly communication and a healthy relationship with your loved one with Parkinson’s Disease can be tremendously rewarding. As Parkinson’s progresses, family roles can change. A head-of-household, for example, may no longer be able to sustain that role, and may rely on the caregiver to assume that role. Studies suggest that caregivers with a high quality relationship with that person with PD have better physical health and reduced depression.
You’re Not a Lone Ranger. Get Help
If you try to care for someone with Parkinson’s by yourself, and without any external help, this is a recipe for disaster. It’s simply too much stress and work to accomplish on your own. So get the help you need. By doing so, you will feel less isolated and more attached to the outside world. This is important. Additionally, receiving outside help lowers your stress and gives you frequent breaks, which you need. You can find help through support groups, as well as community sanctioned services. If those aren’t available, friends, senior centers, adult health facilities churches, and organizations like Meals on Wheels are all available. Additionally, a social worker from your insurance provider can connect you with other services. There are also fee-based services available, which can help with cooking meals, dressing, and bathing.
Research and Learn about PD
There are plenty of educational resources available to you so you can learn all there is to know about the disease and how to care for a loved one with Parkinson’s. Both online resources and your local library are available at your disposal. Other resources include your loved one’s doctor. It’s a great idea to accompany that person to their doctor’s appointments and ask the doctor questions so you are thoroughly schooled on the disease.
Primary to a caregiver’s education is to assess both yours and the loved one’s needs. These can include topics such as the home environment, both of your emotional states and your own health. As a caregiver, you need to figure out how much you can do alone, and what outside support is required. This can include financial concerns such as expenses, employment for both parties, legal matters, (such as Power-of-Attorney) and insurance.
Caring for a loved one with Parkinson’s Disease is not easy. Caregivers need to assess the way their loved one is cared for along with how the added stress of the disease is playing into your own life. Both you and your loved one with Parkinson’s Disease need to make changes to your daily routines to manage the disease together. With a thought-out plan and taking advantage of available resources and services, you can make both yours and your loved one’s lives both pleasant and enjoyable.