-Written by our volunteer Aidan Ashbury from CAK-
When a family member or loved one is living with Parkinson’s disease, it can sometimes be difficult to know how to best support, encourage, and care for them. While many with Parkinson’s desire to be fully independent, and many are, as a friend or loved one there are several things you can do to make sure you enhance someone with Parkinson’s quality of life. As a friend, family member, or caregiver, you can witness firsthand the effects and impact Parkinson’s disease can have on someone’s life. Including the physical symptoms such as rigid movements, tremors and poor balance, there are emotional factors as well such as stress, depression, and even anger & frustration. Don’t let these challenges deter you from being the best support you can be. The PJ Parkinson’s Support Group can also be a resource for you as we are focused on providing support groups, movement classes, meals, and advocacy including a helpline. There are some specific things you can do to support and encourage someone with Parkinson’s disease;
Arm Yourself with Knowledge
The first step, and maybe the most critical, is to learn as much as you can about the disease. This knowledge helps you gain a more clear understanding of what your loved one faces, and the daily challenges they may face. There are many organizations and support groups dedicated to Parkinson’s disease. There is also a wealth of information on the internet from studies, white papers, blogs, books, and videos. If possible, it may even be a great idea to attend doctor’s appointments. Being able to hear from a physician and learn more about the unique challenges your loved one faces will be helpful. Having a robust and comprehensive knowledge of Parkinson’s disease will put you in a great position to fully understand what someone living with the disease deals with.
Encourage Your Loved one to Be Open & Honest
Oftentimes a loved one or caregiver is so eager to help that they takeover activities or chores that a person living with Parkinson’s can manage themselves. While intentions are good, this can make someone living with Parkinson’s feel helpless and not in control of their own lives. Be open and ask your loved one how you can help. Tell them to be honest with you about the things that you can do to support them without making them feel helpless or that they have lost control of their lives.
Volunteer to Help Out
Once you have open and honest communication, and boundaries have been established, volunteer to offer assistance regularly. Transportation to appointments, cleaning the house, working the yard, picking up groceries or medications can be extremely helpful for someone living with Parkinson’s disease. Any way you can assist someone with daily activities that you both have agreed to can go a long way in providing support to your loved one.
Assist in Keeping Finances & Insurance Organized
Since someone living with Parkinson’s disease may be somewhat overwhelmed by the physical and emotional challenges of the disease, losing track of finances or making sure insurance is active and forms are filed can be an issue. If your loved one living with Parkinson’s disease is comfortable with you assisting them with their finances and insurance, you can help assist them in getting organized, making sure bills are paid on time, setting up automatic payments, and helping file any insurance forms as needed. You may be able to assist in making phone calls and making sure everything is up-to-date and organized.
Help with Physical Activities
As with everyone, physical activity is critical to keeping those living with Parkinson’s disease as healthy as possible. Physical fitness helps improve balance, strength, and mobility. If your loved one struggles with more strenuous activities, encourage them to take a light walk and offer to walk with them to keep them company and to make sure they stay safe. Other ideas for activity include yoga, swimming, or dancing.
Offer Ideas for Other Activities
Encourage your loved one to get out of the house. Offer to take them to a movie, or to the salon for a massage, or to get their hair and nails done. Often those living with Parkinson’s disease can feel like they are shut in and isolated from others. Offering to get them out of the house and active can really help with their mindset and potentially help mitigate depression.
Make sure you continuously look for changing symptoms or change in overall appearance and care. As symptoms of Parkinson’s disease continue to progress, sometimes a loved one can struggle to maintain their daily care. Daily tasks such as eating, bathing, and taking medication can become a challenge. If needed make sure to make mental notes of how your loved one’s physical appearance changes over time and if needed contact their healthcare provider or get them the additional support they may need such as in-home care, or a regular care provider that visits.
Living with Parkinson’s disease can be extremely frustrating and debilitating and sometimes your loved one may just need to talk and share how they feel. Just lending an ear can be so helpful, and make a huge difference to someone who may be dealing with many challenges. If you have concerns that someone may need professional help, please let that be known to your loved one’s care provider or physician. Navigating Parkinson’s disease with a loved one doesn’t need to leave you feeling helpless. Your role in helping someone living with Parkinson’s disease can be a vital and supportive one.