Addressing the Challenges Caregivers of People with Parkinson's Face

from guest contributor, OT doctoral student Ariel Schmidt

On average, a caregiver will spend the equivalent of a fulltime job on caregiving duties. While this blog post may be aimed for the families and loved ones of those with Parkinson’s disease, it is something everyone can learn from. This is a list of some of the more common challenges many face as a caregiver and advice on the situation.

  • Patience: There may be times when you, as a caregiver, feel like your patience is being tested. This can happen in many forms, but just remember that your loved one is not being slow or taking their time on purpose. Find a way to help decrease your frustration or perhaps you can find humor in the situation.

  • Allowing a person living with Parkinson’s to complete the task vs. completing it for them: This is so hard! It is hard to watch someone struggle with simple task that seems like it should be automatic. The initial reaction is to just do it for them and move on. While this may be the easier and faster solution, it will cause problems later down the road. It is important to allow our loved one with Parkinson’s to complete tasks independently, even if it means it takes longer. This will help maintain their pride and independence. Keep in mind that there are devices such as a button hooks or sock aides available to make day to day tasks easier. There may be a time when you are at the grocery store or running errands. Will your loved one be able to dress themselves without your help or will they have to wait till you return?

  • Communicating with doctors, neurologists, and other medical professionals: Going to appointments is intimidating, but there are a several things you can do to go to the appointment prepared.

    • Attend the meeting with your loved one. The more ears the better. You also see things that the person with Parkinson's may not be aware of. Sometimes a different perspective can be beneficial.

    • Do research before the appointment. By having a solid foundation, you may be able to better communicate and understand what the doctor is talking about.

    • Make a list of questions, concerns, or comments you have. You may think, “I’ll ask about this when I see the doctor next,” but many times the appointment becomes overwhelming and questions or concerns are forgotten. You only have limited time with your doctor or neurologist every couple of months, so make the most out of the time you have.

  • Advocating for Parkinson’s: This is a huge topic and it is so important. For more information refer back to the previous blog post about advocacy. Or do your own research to see what type of advocacy efforts you can find.

  • Planning to leave the house: This can seem like a daunting task, but there are a few things that can be done to make leaving the house a much easier task. First, plan ahead. Know where you are going and what you will need. Place all items that you will need for your outing in one place. This will help save time and help you feel like you are prepared to leave. It will also help save energy for the person with Parkinson's. Next, give yourself extra time. This will decrease stress levels significantly. Bringing your Aware in Care kit is another way to help you feel more prepared when leaving the house.

  • Helping with anxiety: This looks different for everyone, but encourage your loved one to talk about their anxious feelings. See if they are able identify what is making them feel that way. If so, try to brainstorm calming activities. This could be talking through the situation to make them feel more comfortable, playing their favorite music, take some deep breaths with them, or role play the situation. Another option would be to try an app that focuses on stress relief such as Calm or Headspace. Find what works for them!

  • Being away from family members: While some have the pleasure of having children, grandchildren, siblings, etc. nearby, others may have family that lives in a different state. Many have reported that they feel more supported with family around. If you have family that is far away, consider setting up a weekly phone/Zoom call with them. This gives everyone something to look forward to, and it allows you to be more connected. Secondly, be open and honest with them. Though your struggles and difficulties may seem overwhelming, remember you are not a burden. Seek help from other trusted individuals. Be open to accepting and requesting help from other family members.

  • Palliative Care: It may seem like a scary term, but in reality, it is a huge resource available to you. The goal of palliative care is to provide comfort care, symptom management, offer support to families, and reduce stress. Palliative care begins at diagnosis, not end of life. Many times, spouses of people with Parkinson's feel that they do not have the chance to focus on their own mental health. It is important that you take the time to focus on you so you may better care for your loved one. Kansas Palliative & Hospice Care has presented at The Parkinson’s Exercise and Wellness Center in the past and provided some valuable insights to the services they offer. They are trusted by our coaches and know how to help our fighters and their families.

Remember, fighting back against Parkinson’s is a joint effort! So work together as a team to find out how to best serve yourself as a caregiver and your loved one with Parkinson’s.