The Role Of PD Carepartners
Caring for a loved one with PD can be a challenging job, especially as the disease progresses. The best preparation for caregiving starts with education and asking questions of healthcare professionals. Early after a PD diagnosis, more emotional support and less hands-on care are generally required.
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People with Parkinson’s disease rely on carepartners for a wide range of support — from driving them to doctor’s appointments to helping them get dressed. As the disease progresses, dependence on a carepartner increases substantially. Carepartners can help people with Parkinson’s adjust to the disease’s effects on the body. And knowing that a loved one is cared for can help the entire family adjust to the diagnosis.
But the person with Parkinson’s disease isn’t the only one who should be cared for. Carepartners must take care of themselves too as it can be a complicated and physically and emotionally draining experience. See the following recommendations to help keep your energy, spirit, and physique engaged and able to continue the gratifying work of caring for a loved one. |
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Get Prepared
Many resources are available online and public libraries have literature on the disease. Whenever possible, 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 carepartner 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 carepartner and the person with Parkinson’s), managing expenses, and if/when to secure Power of Attorney.
Many resources are available online and public libraries have literature on the disease. Whenever possible, 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 carepartner 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 carepartner and the person with Parkinson’s), managing expenses, and if/when to secure Power of Attorney.
Take Care of Yourself
Probably one of the most important, and sometimes difficult, things carepartners 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 carepartner, 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 carepartners 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.
Probably one of the most important, and sometimes difficult, things carepartners 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 carepartner, 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 carepartners 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.
Photo by Antonio Santos
Get Help
Get help—don’t try to do it all alone. By getting help, a carepartner 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. These include neighbors, friends, places of worship, senior centers, adult day health, Meals on Wheels, and door-to-door vans. 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.
Get help—don’t try to do it all alone. By getting help, a carepartner 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. These include neighbors, friends, places of worship, senior centers, adult day health, Meals on Wheels, and door-to-door vans. 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 dependent person requiring a significant level of care.
Research shows, however, that despite high levels of strain, carepartners with good quality relationships have reduced depression and better physical health. Remember, as a carepartner, your service to your loved one is beyond measure in terms of love, depth of care, and concern.
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 dependent person requiring a significant level of care.
Research shows, however, that despite high levels of strain, carepartners with good quality relationships have reduced depression and better physical health. Remember, as a carepartner, your service to your loved one is beyond measure in terms of love, depth of care, and concern.
Carepartner Resources
VA Caregiver Support Program
Every VA facility has a CSP team that provides support and referrals to services. They provide valuable information about resources that can help you stay informed and supported as you care for your Veteran. Reach out to your CSP team to learn about more events happening in your local area.
Every VA facility has a CSP team that provides support and referrals to services. They provide valuable information about resources that can help you stay informed and supported as you care for your Veteran. Reach out to your CSP team to learn about more events happening in your local area.
Family caregivers and professionals offer advice for finding the right home health aide.
Brain and Life Magazine June 2021
Brain and Life Magazine June 2021
Caregiver Resource Centers -California resources, blog, videos, events and classes Click here
Del Oro CRC http://www.deloro.org/ serving – Alpine, Amador, Calaveras, Colusa, El Dorado, Nevada, Placer, Sacramento, San Joaquin, Sierra, Sutter, Yolo and Yuba counties.
Passages CRC http://www.passagescenter.org/home.html serving - Butte, Colusa, Glenn, Lassen, Modoc, Plumas, Shasta, Siskiyou, Tehema and Trinity counties
Redwood CRC http://www.redwoodcrc.org/ - serving Del Norte, Humboldt, Lake Mendocino, Napa, Sonoma, and Solano counties
Del Oro CRC http://www.deloro.org/ serving – Alpine, Amador, Calaveras, Colusa, El Dorado, Nevada, Placer, Sacramento, San Joaquin, Sierra, Sutter, Yolo and Yuba counties.
Passages CRC http://www.passagescenter.org/home.html serving - Butte, Colusa, Glenn, Lassen, Modoc, Plumas, Shasta, Siskiyou, Tehema and Trinity counties
Redwood CRC http://www.redwoodcrc.org/ - serving Del Norte, Humboldt, Lake Mendocino, Napa, Sonoma, and Solano counties
Davis Phinney Foundation https://davisphinneyfoundation.org/resources/parkinsons-care-partner-resources/
EVERY VICTORY COUNTS® MANUAL FOR CARE PARTNERS
CARE PARTNER MONTHLY MEETUP
THE PARKINSON’S CARE PARTNER RULEBOOK
THE PARKINSON’S CARE PARTNER DIGITAL TOOLBOX
EVERY VICTORY COUNTS® MANUAL FOR CARE PARTNERS
CARE PARTNER MONTHLY MEETUP
THE PARKINSON’S CARE PARTNER RULEBOOK
THE PARKINSON’S CARE PARTNER DIGITAL TOOLBOX
Care Partner Education
Family Caregiver Alliance https://www.caregiver.org/resources-health-issue-or-condition
In English Parkinson's Disease and Caregiving
En Espanol La Enfermedad y el Cuidado de Parkinson
Family Caregiver Alliance https://www.caregiver.org/resources-health-issue-or-condition
In English Parkinson's Disease and Caregiving
En Espanol La Enfermedad y el Cuidado de Parkinson