The only people who genuinely understand the complexity of being a caregiver to someone with Parkinson’s disease (PD) are people who are or have been caregivers themselves. That’s why we partnered with Honor to gather helpful tips from the people who know best: experienced caregivers. After hearing from 120 Parkinson’s caregivers, we compiled the top seven tips every Parkinson’s caregiver should know in order to prepare for the journey ahead:
- “It is super important to feel grief yourself, as the caregiver. I did not allow myself that at first, because it was my husband who had Parkinson's, not me. But really, we both had it in our own way — dreams changed, daily life changed and all around you other people are living the life you thought you would have. Allow yourself to feel grief, then move on and be thankful for what you still have.” -Barbara
- “I was a caregiver. My mom passed away nearly two years ago. If I had the chance, I’d do some things exactly the same and some differently. Number one thing is to have empathy. Constantly remind yourself that Parkinson's is a disease and your loved one can't help their physical or mental state. Empathy will promote patience, which is so very important.” -Lori
- “Learn about the disease and realize every person's experience is different. Find a movement disorder specialist and don't be afraid to change. Learn about Parkinson’s medication, treatment, therapy and become an advocate for your loved one. Learn how to appeal coverage/expense issues with your insurance carrier. I always appeal tier three level drugs and always get them reduced. Encourage your loved one to get involved with a support group or exercise programs, like Rock Steady Boxing. Take care of yourself. Ask for help. Find some activity that brings you joy. Travel, hang out with your friends, join a caregiver support group. It’s a long road.” -Joanie
- “Take care of yourself! And research advanced care options before you need them. Communicate to family and friends about how they can help you with specific tasks, it's easier for them to help if they know specifically what you need them to do.” -Lisa
- “Above all, remember to take care of yourself too! If you become burnt out and sick, you will be of no use to anyone including yourself. Exercise, eat well, socialize, laugh. Make time for yourself away from your loved one, for both of you.” -Carol
- “I had to get over the stigma of hospice care, but knowledge is power. They have been wonderful and non-invasive. If I have questions or new developments they are there. The other day I called her to ask the doctor about an antidepressant medication and it was delivered the next day. The supplies for his incontinence has saved me hundreds of dollars along with his Ensure [the nutritional shake].” -Beth
- “As a retired hospice registered nurse and a caregiver for my husband with PD, take advantage of the services a hospice can provide! So many people think hospice is for the last few days or weeks, but they can provide support for six months and even longer if the person continues to show a decline in function, like bathing. Volunteers or care professionals can care for your loved one while you go to the grocery store or out to lunch with friends, or meet with the nurse, social worker or chaplain. They are there for you as well as your husband. It is such an emotional rollercoaster, especially with the cognitive issues.” -Joanie
The tips don’t end here — we want to hear from YOU! Share your caregiving experiences and advice by telling us your My PD Story. Tell us about the challenges you have overcome and what keeps you happy, healthy and hopeful.
Parkinson’s Foundation caregiver resources include:
- Our YouTube channel, where you will find educational videos and caregiver stories from our 2016 Caregiver Summit, which focused on caregivers’ needs.
- CareMAP: this site is your guide to Managing Advanced Parkinson’s.
- Call our free Helpline at 1-800-4PD-INFO (473-4636) or email firstname.lastname@example.org to ask our Parkinson’s specialists your caregiver and Parkinson’s questions.
To learn more about respite or home care, Honor utilizes the Parkinson’s Foundation proprietary care guidance to bringpersonalized care to the homes of people living with Parkinson’s.