Challenges associated with Parkinson\u2019s 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\u2019s important that care partners prioritize their own well-being while they lend their time, love and support to their loved with living with Parkinson\u2019s.<\/p>\n
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.<\/p>\n
Care partners can experience an array of symptoms that are just as unique as the symptoms of Parkinson\u2019s itself. Symptoms can include:<\/p>\n
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\u2019re caring for.<\/p>\n
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.<\/p>\n
It can develop when:<\/p>\n
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\u2019s would like to maintain responsibility for. This is where communication between care partner and the person living with Parkinson\u2019s is key.\u00a0\u00a0<\/span><\/p>\n 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\u2019s (or others in the family) can create resentment. It\u2019s 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\u2019s can create barriers for people living with Parkinson\u2019s to engage in the self-care their care partners might expect from them.<\/p>\n Institutional support can be everything from work accommodations for care partners, to wait times for medical appointments for the person living with Parkinson\u2019s, to access to support groups for both care partners and those they care for.<\/p>\n When you look at the state of Parkinson\u2019s 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<\/span><\/a> for care partners who are missing work because of their duties, <\/span>long wait times for diagnosis and treatment<\/span><\/a> for people living with Parkinson\u2019s and assisted living options for the person with Parkinson\u2019s are just the tip of the iceberg. \u00a0<\/span><\/p>\n 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.<\/p>\n Care partners can feel a deep commitment to their responsibilities,<\/span> so much so that they begin skipping meals and embarking on sleepless nights because they\u2019re caring for someone with Parkinson\u2019s experiencing sleeplessness themselves.\u00a0 It doesn\u2019t 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.\u00a0<\/span>\u00a0<\/span><\/p>\n Get enough sleep. The Sleep Foundation<\/span><\/a> 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\u2019s. 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. \u00a0\u00a0<\/span><\/p>\n Eat enough food. Prepare food you enjoy and that nourishes your body \u2013 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.\u00a0 \u00a0<\/span><\/p>\n Remaining fluid about what gets accomplished in a day will help keep your expectations in check. A care partner\u2019s 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.\u00a0<\/span>\u00a0<\/span><\/p>\n It may not be something you\u2019ve 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 <\/span>beginners guide to breathwork<\/span><\/a> or downloading the free trial of a meditation app like <\/span>Calm.<\/span><\/a><\/p>\n No one can understand what you\u2019re 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\u2019re alone in your complex feelings.<\/p>\n 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.<\/p>\n Find your support group today<\/span><\/a>.<\/p>\n Learn more about being a care partner, including more self-care tips and communication strategies. Download our Care Partnering Ebook<\/span><\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"When expectations and reality don’t jive<\/h4>\n
Frustration sets in with the lack of institutional support<\/h4>\n
Care partners neglect their own basic needs by eating poorly and not getting enough sleep<\/strong><\/h4>\n
Four tips for avoiding or recovering from burnout<\/h3>\n
1. Prioritize your needs<\/h4>\n
2. Remember that a day\u2019s plan isn\u2019t set in stone<\/h4>\n
4. Explore breathing and meditation techniques<\/h4>\n
5. Find a care partner support group<\/h4>\n