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Parkinson’s Disease and the Caregiver

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What is Parkinson’s Disease?

Parkinson’s Disease (PD) is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinson’s disease results from the destruction of nerve cells in the brain that produce the chemical dopamine.

Caregiving for People Living with Parkinson’s

Caring for a loved one with PD can be a challenging job, especially as the disease progresses.  Get prepared, take care of yourself, get help (don’t try to do it all yourself), work to maintain a good relationship with your loved one, and encourage the person with PD for whom you care, to stay active.  These are the most common tips to follow when dealing with a loved one suffering from PD.  We also have put together a Parkinson’s Caregiver Sheet to help you as well. Early Parkinson’s Disease (PD) usually requires more emotional support and less hands-on care. It is a good time for family members/caregivers to educate themselves about the disease.

Get Prepared

Many resources are available online.  The Parkinson’s Disease Foundation (PDF.org)  has a lot of information about the disease.  Another good source of information would be to accompany the person with Parkinson’s to their medical appointments and ask questions of the doctor, nurse and social worker. The areas to assess include your loved one’s needs – both your perceptions and theirs, your home environment, and your own health, emotional state, and other commitments. The caregiver has to determine how much they can and can’t do themselves and what type of outside support is needed. It is also important to assess current and future financial issues such as health insurance coverage, employment (both caregiver and the person with Parkinson’s), managing expenses, and if/when to get Power of Attorney.

Take Care of Yourself

Probably one of the most important, and sometimes difficult, things caregivers can do is to take care of themselves. This includes maintaining mental and physical health by making and keeping your own medical and dental appointments. As a caregiver, it is important to keep your job whenever possible as it provides not only financial help and possibly insurance coverage, but also a sense of self-esteem. Join a support group for caregivers if possible. Support groups 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. Whenever possible get your sleep, take breaks, make and keep social activities, and try to keep your sense of humor.

Get Help

Get help?  Don’t try to do it all alone. By getting help, a caregiver can lessen their sense of isolation, and it gives you more confidence in your own caregiving ability. Having help increases your ability to think creatively and helps you get those needed breaks. Help is available through local and community services.  For a fee there is in-home care for help with cooking, bathing, dressing, and meal preparation. Additionally, a social worker from your health plan or hospital can connect you with other services.

Foster A Good Relationship

Lastly, maintaining your relationship and communication with the person with Parkinson’s can be the most challenging and rewarding aspect of caregiving. As Parkinson’s Disease progresses, the roles change and the person with Parkinson’s may go from being an independent head of the household to a very dependent person requiring a significant level of care. However, research shows that despite high levels of strain, caregivers with good quality relationships have reduced depression and better physical health. Remember, as a caregiver your service to your loved one is beyond measure in terms of love, depth of care, and concern.

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