Care partners need care too

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Challenges associated with Parkinson’s aren’t limited to those who receive the diagnosis. It also impacts those who assume the role of care partner, often leading to burnout. It’s important that care partners prioritize their own well-being while they lend their time, love and support to their loved with living with Parkinson’s.

What is care partner burnout?

Care partner burnout can be defined as a state of physical, emotional and mental exhaustion that develops while taking on the role of care partner.

Care partners can experience an array of symptoms that are just as unique as the symptoms of Parkinson’s itself. Symptoms can include:

  • a weakened immune system
  • change in appetite and sleep patterns
  • the use of medications or alcohol for coping
  • mood swings
  • withdrawal from family and friends, and the hobbies you once enjoyed
  • and in serious cases even feelings of self-harming or harming the person being cared for

The intensity of burnout can be scary for care partners and those around them. Despite having these feelings, many care partners also feel guilty if they spend time on themselves rather than on the person they’re caring for.

How does burnout happen?

Burnout can occur when care partners don’t get the help they need, or if they try to do more than they are able to physically, financially or emotionally.

It can develop when:

There is role confusion

Role confusion occurs when there are no boundaries or delineations made around what the care partner is responsible for and what the person living with Parkinson’s would like to maintain responsibility for. This is where communication between care partner and the person living with Parkinson’s is key.  

When expectations and reality don’t jive

Expectations such as receiving ongoing appreciation and gratitude for providing care or hoping to see an equal amount of effort from the person living with Parkinson’s (or others in the family) can create resentment. It’s important to note that everything from apathy and depression to facial masking and loss of voice can prevent a care partner from hearing gratitude for their support from a person living with Parkinson’s. Similarly, the non-motor symptoms of Parkinson’s can create barriers for people living with Parkinson’s to engage in the self-care their care partners might expect from them.

Frustration sets in with the lack of institutional support

Institutional support can be everything from work accommodations for care partners, to wait times for medical appointments for the person living with Parkinson’s, to access to support groups for both care partners and those they care for.

When you look at the state of Parkinson’s in Canada, it’s easy to see why frustration can set in as gaps in care at the institutional level can be found everywhere. Limited paid accommodations for care partners who are missing work because of their duties, long wait times for diagnosis and treatment for people living with Parkinson’s and assisted living options for the person with Parkinson’s are just the tip of the iceberg.  

Instead I would talk about the costs and challenges of accessing safe and reliable assisted living options when the needs of the PwP are too great. This is a much more frequent and pressing issue for CPs.

Care partners neglect their own basic needs by eating poorly and not getting enough sleep

Care partners can feel a deep commitment to their responsibilities, so much so that they begin skipping meals and embarking on sleepless nights because they’re caring for someone with Parkinson’s experiencing sleeplessness themselves.  It doesn’t take long for sleep deprivation and a lack of nutrition to take their toll on our ability to manage our moods and behaviours, resulting in care partner burnout.  

Four tips for avoiding or recovering from burnout

1. Prioritize your needs

Get enough sleep. The Sleep Foundation recommends seven to nine hours of sleep per night for adults between the ages of 26 and 64 years old, and seven to eight hours of sleep per night for ages 65 and up. The person you care for may struggle with sleep due to their Parkinson’s. Be creative in the ways you can enable their care during the night so you can get the rest you need. Such as setting up separate beds or bedrooms or hiring an overnight respite worker to come into your home occasionally.   

Eat enough food. Prepare food you enjoy and that nourishes your body – even if it means cooking a separate meal for yourself. Find simple recipes and begin slowly incorporating them into your routine to get back to eating well. Also, consider reaching out to neighbours and friends who have extended the offer to help and ask them to prepare meals for you every once in a while.   

2. Remember that a day’s plan isn’t set in stone

Remaining fluid about what gets accomplished in a day will help keep your expectations in check. A care partner’s work is never finished. If the stress of getting things done weighs on you, create a daily routine to help accomplish what matters most and let the rest happen as it may. Surrendering to this mindset as a care partner can be difficult but so very worth it.  

4. Explore breathing and meditation techniques

It may not be something you’ve considered before, but when faced with burnout, why not step out of your comfort zone and experiment with breathwork and meditation? A great way to start is by finding a beginners guide to breathwork or downloading the free trial of a meditation app like Calm.

5. Find a care partner support group

No one can understand what you’re going through like another care partner. While your experience and emotions feel deeply isolating, there are others who are living through very similar situations and can offer an invaluable level of support and solidarity during a time where it’s easy to believe you’re alone in your complex feelings.

You are not alone. Join a support group, either virtually or locally in-person. You may be surprised by the connections you make and how different your experience as a care partner can be as a result.

Find your support group today.

Learn more about being a care partner, including more self-care tips and communication strategies. Download our Care Partnering Ebook.