We discussed preparing for the holidays during this month’s Care Partner Meetup. 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.
Holidays are stressful enough without adding Parkinson’s to the mix. Our panelists and participants came up with some great suggestions for actions care partners can take to make the season less stressful. Hopefully, these will help you have a great holiday season!
- Make compromises and accommodations. If you’re traveling, make sure your accommodations are set up for your need before you get there. Ask for foods that your person with Parkinson’s needs and make sure that meal times can go along with your person with Parkinson’s schedule. If a packed schedule is happening over a holiday weekend, ask for more breaks or try to have an itinerary with places that make resting possible. Your person with Parkinson’s wants to participate, so work with your family to ensure you all have fun.
- As your person with Parkinson’s develops new symptoms, previous holiday traditions may have to change, like carving a turkey or playing tag football. Reframe those traditions with your adult children. If your person with Parkinson’s was the one who carved the turkey but can’t now because of his Parkinson’s, perhaps you could pass the task to your child so that they can pass it on to theirs. If your family usually takes a nature walk, consider driving to a scenic overlook and appreciate the fall colors that way. Invite your children to make plans with you so they can participate in the new and modified traditions. Whatever you do this year can be a new tradition.
- Let guests know what you need. If your person with Parkinson’s needs to sleep at a particular time, let your guests know that the party will end before then, so no one is surprised. Tell your guests if you need people to bring food because you can’t make an entire four-course meal and also care for your person with Parkinson’s. If you have family staying over, consider staying at a hotel, so your person with Parkinson’s has a place to take a break or have a space in your home designated for quiet time. Have a trusted family member or friend be your assistant so that you can have fun and so someone else knows what your person with Parkinson’s may need. The holidays bring people together, so use them to help you.
- Sometimes, family members must understand that things have changed for your family. They understand that your person has Parkinson’s but don’t truly understand what that means. Here are some ways to deal with this issue:
- Have compassion for their unhappiness. You have days when Parkinson’s is too much too. They are experiencing those feelings at an already emotional time of year. Give them grace. Examine your reactions to their behavior and have compassion for their feelings. Grieve the loss of the “ideal” family together and then make plans for creating new memories.
- Create firm boundaries with them. Your person with Parkinson’s will be putting on their best face. That doesn’t mean they don’t still need the same accommodations. Make sure your family understands there are limits to what your person with Parkinson’s can and should do. Do not let them cross those boundaries, even if they say, “oh, they’re fine; stop being a worry wart.” You aren’t. You know your person with Parkinson’s best. Don’t let anyone tell you differently.
- Have “proof.” This also goes for doctors’ appointments. If people don’t believe you that your person with Parkinson’s has severe motor symptoms, take videos during OFF times as examples. People sometimes need to see to believe, and if you want them to accept limits, you may have to show them. This also will take a lot of pressure off your person with Parkinson’s, so they don’t feel like they have to be ON the entire holidays.