Parkinson’s psychosis care decisions: Working with your parent’s spouse
While it’s helpful to have support, sharing Parkinson’s psychosis care decisions with your parent’s spouse can present unique challenges of its own. You may find that you disagree about how to best care for your parent, or you may feel more or less involved than you’d like to be.
If you’re having trouble setting clear boundaries, talking openly about your parent’s symptoms, or resolving disagreements about their care, keep reading for actionable tips.
Understanding the unique roles of adult children and spouses in caregiving
If you see your parent only occasionally, and their spouse lives with and takes care of them daily, the two of you likely have a very different picture of your parent’s health. Changes in their behavior may seem sudden or drastic to you, while they may seem subtle or gradual to your parent’s spouse.
Keep in mind that both perspectives are valuable. You may notice things that your other parent or stepparent doesn’t until you point them out. Conversely, they may be able to provide useful context that you wouldn’t otherwise get during short, infrequent visits.
How to talk openly about visual changes or delusions as a family team
To reduce conflict, there are a few things you can keep in mind when navigating Parkinson’s care with a stepparent or parent.
Focus on the facts
Parkinson’s psychosis symptoms can be upsetting to witness, making conversations about them emotionally charged. This, in turn, can open the door for miscommunication. While it’s important to allow space for everyone’s emotions, focusing on the facts can help if you’re feeling disconnected. For example, “I noticed Dad is hallucinating more frequently during our visits” provides a common ground to start a conversation.
Be curious
Rather than blaming or making assumptions, it’s helpful to stay curious about your parent’s day-to-day care and symptoms, especially if you’re not always there to witness these things firsthand. For example, a question like “When Mom hallucinated another person in the room yesterday, you didn’t seem surprised. Has that been happening more frequently?” is open, nonjudgmental, and allows space for your parent’s spouse to fill you in before you probe deeper.
Create a shared symptom record
Ask if your parent’s spouse would be open to creating a shared log of your parent’s Parkinson’s psychosis symptoms. For example, you could create a shared notebook online that you both can access. Your parent’s spouse can take notes about day-to-day symptoms there, and you can add to it after your visits. That way, you’ll both have access to the same information, and there will be no surprises during doctor’s visits.
Set the stage
Be sure to open conversations with a clear goal. For example, you could say something like, “Over my last few weekly visits with Mom, I’ve noticed some changes that worry me. Do you have time to talk about this? I’d like to share what I’ve noticed and hear from you what it’s been like day to day. I want to make sure we’re on the same page before her next doctor’s appointment.”
Handling disagreements over medication, treatments, and daily support
Even with the best intentions, disagreements over your parent’s care are inevitable. Here are some suggestions for making Parkinson’s psychosis care decisions with your parent’s spouse a little more manageable.
Make the patient central to decision-making
If your parent is still able to participate in medical decisions, include them in conversations whenever possible so their preferences remain central.
Break large decisions into small ones
It can be tempting to bundle lots of decisions — like whether medications need to be adjusted, when your parent needs a higher level of care, or if the home environment is working well — into one. However, it’s much less overwhelming to make decisions one at a time.
Set trial periods before making permanent decisions
Try setting a trial period — for example, 1 to 2 weeks — to see how a change to your parent’s care works before committing to it permanently. Knowing that you can make a shift later can take some of the stress off of making decisions.
Allow the doctor’s input to be a resolution
There may be times when you and family simply can’t see eye to eye. If you’ve hit a wall, each of you should try writing out what you’ve witnessed, and what you think should be done about it. Then, bring these written viewpoints to the next appointment and share them with the doctor. Ask them to explain which approach best aligns with your parent’s symptoms, goals, and safety.
Focus on goals rather than opinions
It’s likely that you and your parent’s spouse won’t always see eye to eye, but try to stay focused on your shared goals. For example, you may say you’re very concerned that your parent seems confused and disoriented before bed. If your stepparent brushes this off and accuses you of overreacting, instead of blaming them for not being more proactive, remind them (and yourself) that you each want the same thing: For your parent to be as comfortable as possible. Then discuss how you can best achieve that.
Setting healthy boundaries while putting your parent’s comfort first
Caring for someone with Parkinson’s psychosis can be all-consuming. They may need help with basic tasks and require around-the-clock care. It can be easy to fall into a pattern of dropping everything and putting them first while ignoring your own needs in the process. However, this causes burnout, making it harder to care for them effectively.
Take advantage of the fact that you have at least two people committed to caring for your parent. You don’t need to do everything yourself, and neither do they. Instead, split up tasks based on what each person does best, taking into account availability and logistical constraints, while still prioritizing your parent’s comfort . For example, if your parent’s spouse is already handling all aspects of daily care, perhaps you could be the point person for scheduling appointments or reviewing insurance options. Splitting up tasks will help each of you feel involved without becoming overwhelmed.
When to seek outside help from a counselor or family mediator
Even with the best of intentions, it’s natural to sometimes reach an impasse when coordinating care for a parent with Parkinson’s. If you and your family feel that you’ve exhausted all tools at your disposal and still cannot agree, know that it’s OK to need outside help. You may find it helpful to seek counseling as a family. Alternatively, family mediators can also help settle disputes.
Essential next steps for families
Here are some steps you can take as you work toward reducing family conflict over Parkinson’s treatment.
- Schedule a family check-in: This is best done at a time when everyone feels calm, and there are no active disagreements. Find a time that you and your parent’s spouse can talk privately without distractions.
- Create a shared symptom log: This could be a shared digital notebook or paper log that you can each access. You can both use this as your shared record so that you stay aware of what you’re each noticing, and when. You can also refer back to it as a team when talking with your parent’s doctor.
- Set up a counseling appointment, if necessary: If you feel you’re at an impasse, seek help resolving conflicts. You can try reaching out to your parent’s neurology clinic to see if they can refer you to a social worker who can assist you with support options. Alternatively, you can seek help from a private counselor.
You and your parent’s spouse won’t always agree, and that’s normal. What matters most is maintaining open communication and keeping your parent’s comfort, dignity, and safety at the center of every decision.
Parkinson's News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
