People generate movement when a signal is sent from the Basal Ganglia to the thalamus and then to the cerebral cortex. 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 promotes and controls movement.
When the cells die, they can no longer produce and send dopamine so the signal to move doesn’t get communicated. By the time a person starts to experience adverse motor symptoms of Parkinson’s, they’ve already lost approximately 50% of their dopamine producing cells. This is the essence of what happens to the human body when an individual is diagnosed with this dreaded disease.
Equally as challenging as the disease itself, is the care for an individual with Parkinson’s. Caring for a loved one with PD is not only extremely difficult, but as the disease progresses, it gets tougher and tougher. Several PD caregivers who have been through the process say educating yourself on the disease and preparing for your caregiver role is vital. 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:
Tons of resources are available for you to learn about Parkinson’s Disease, either in your libraries or online. 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 insurance, expenses, employment for both parties and legal matters, such as Power-of-Attorney.
Don’t do it alone
You can’t do this alone, 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, churches, adult health facilities, friends, Meals on Wheels and senior centers are available, or a social worker from your insurance provider can connect you with other services. There are also fee-based services available, which can help with bathing, cooking, meals and dressing.
Value your time with your PD loved one
Having a healthy and friendly relationship and communication with the person with Parkinson’s Disease can be tremendously rewarding. As PD progresses, family roles can change. For example, a head-of-household may no longer be able to sustain that role, and may rely on the caregiver to assume that role. Research suggests that caregivers with a high quality relationship with that person with PD have reduced depression and better physical health.
Caregiver’s physical health
Finally, and probably the most important, take care of yourself. Sure, this is sometimes difficult, but by maintaining good physical and mental health, you are helping yourself and your loved one. 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.
With respect to your mental health, join a support group to help you meet people who are going through what you are going though, vent frustrations, give and receive mutual support, and exchange resource information and coping strategies.
Caring for a loved one with Parkinson’s Disease is difficult enough. 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.