Parkinson’s disease (PD), a progressive disease that changes over time, can make it difficult to provide consistent care for a loved one, even with the best of intentions and training. Being a caretaker for someone with PD can make it challenging to define your role and come up with a predictable routine. Here are some tips to keep in mind in order to minimize daily stress and maximize quality of life for both you and your family member with Parkinson’s Diease.
1. Educate yourself on Parkinson’s Disease symptoms and progression.
It takes time to learn about the disease and PD affects each person differently. The more you know about the symptoms to be on the lookout for, the more prepared you can be in what may be a new change to adapt to. Getting accurate information on PD can help you become a better problem solver by staying observant and educated.
2. Help only where you are needed.
Simple because your loved one may have PD does not mean they are completely helpless. Have an open dialogue about being honest with each other. It can be counterproductive for a caretaker to take over responsibilities that a person with PD can manage. Taking over too soon can demoralize the individual with PD, hurt the relationship, and lead to quicker caregiver burnout if you are doing more than needed.
3. Be a Team Player.
Consider yourself an important member of your loved one’s team, which can include attending doctor visits to learn as much as possible about the unique impact PD is having on your loved one’s life and functioning. Doctor visits are important opportunities to hear about new ideas or ‘look for’s’ from a health care provider, and get suggestions about accommodations you want to try, or medication changes to be aware of.
4. Join a Support Group.
Although PD is an ever-changing disease that affects each individual differently, going through it alone as a caretaker can be lonely and frustrating. Joining a support group will not only help you realize that you are not alone in your struggles and challenges, but it can also be a place to learn about different strategies, treatment plans, providers, medical and financial assistance, and home accommodations.
5. Take the Focus Off Parkinson’s Disease.
Yes, your loved one may be suffering from Parkinson’s, but they are more than their disease. Treat your loved one with dignity and respect, and talk to them as you know them — as a mother, father, spouse, etc., not as a “patient” only. This can help maintain a strong and loving relationship and allow you both to celebrate the good times and make positive memories.