Every month, we host a Care Partner Meetup that brings together our panelists Connie Carpenter-Phinney, Pat Donahoo, and Gail Gitin with Parkinson’s care partners to discuss what it’s like to be a care partner. While we don’t publish a recording of these monthly meetups because of the sensitive nature of the conversation, we do want to share some key takeaways so that even if you can’t join us live, you can still benefit from the expertise of our panelists and community members.
notes from the june care partner meetup
During this session, we talked about guilt, and the many different types people grapple with on the journey of caring for someone with Parkinson’s.
- As a care partner you may feel guilty about many things, and as you read the examples below, recognize that this feeling is common for many care partners, and you are not alone. This month, panelists and attendees expressed feeling guilty about:
- Causing their person’s Parkinson’s symptoms to worsen after a disagreement
- Mentioning their needs to their person with Parkinson’s, especially if they perceive their needs to be greater
- Looking at their partner differently and lamenting over who they used to be versus who they are now
- Comparing their person with Parkinson’s with others
- Making decisions for their partner when their executive functioning is impaired
- Taking time for themselves when they could be doing something for their person with Parkinson’s
Tips for Managing Guilt
- If you can, express your feelings of guilt to other care partners or trusted friends. It may help you feel validated, not alone, and may also provide good insight into some of your concerns.
- Guilt is often a two-way street in Parkinson’s. While you may feel guilty about certain things, your person with Parkinson’s also likely feels guilty for placing this burden on you. Remember that neither of you asked for this and all each of you can do is the best you can.
- One thing that may help ease the guilt for both partners is compromise and the expectation that compromise is continuously necessary. In an example Pat gave, he explains that he may want to go for a four-hour bike ride, but his partner may want him at home to help. If both can communicate about their needs and expect to compromise, they can come to a mutual agreement that Pat will go for a two-hour bike ride and be home for the other two hours to help.
- One option to ease your guilt about spending time away from your person with Parkinson’s may be to invest in certain technologies allowing you to keep an eye on them. Gail suggests buying an apple watch so you can be available by phone no matter what you are doing, and Pat suggests a home security camera system, as it allows him to be able to check on his partner throughout the day when he is away.
- Executive function is undoubtedly affected in people with Parkinson’s, and this can be one of the most difficult things to grapple with. Additionally, medications or Parkinson’s progression can cause your person to not recognize their deficits in skills such as decision making or memory. This leaves you in the difficult position of needing to make decisions for them for their own well-being but meeting resistance. To ease this difficulty, consider bringing in a third party such as a trusted friend, family member, or even your physician to have this discussion with your person with Parkinson’s.
- If your person with Parkinson’s is interested in cycling, ensure that they have enough strength before using a road bike. You may consider using a stationary bike first to build up strength. Then, once you feel stronger, use a road bike (always with a helmet) on paved pathways or quiet roads, slowly working your way up to more physically demanding rides. You may also consider getting an electric or tandem bike. These can help if your person with Parkinson’s has balance issues or is struggling to keep up.