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Self-Care for Caregivers: Moving Past the Barriers

Self-Care for Caregivers: Moving Past the Barriers

As a caregiver or care partner for a loved one with Parkinson’s disease, it’s likely you’ve been educated in the importance of self-care. Perhaps a well-intentioned family member, medical professional, or support group member gave you some tips on how to implement self-care practices such as an exercise routine, support group, or enjoyable activity. Given the many challenges and transitions that come with Parkinson’s disease, self-care practices can be vital in providing caregivers with the stamina to be in it for the long-haul.

What comes to mind when you hear or read the term “self-care practice”? For many, first thoughts can include: I don’t have the time, I don’t have the resources, or I don’t have the energy. For others, a swell of guilt may come when imagining taking time away from your loved one to devote to taking care of yourself. These are common and understandable responses; however, they do not necessarily have to be barriers to setting a self-care practice. Let’s break two of these down further to address the challenges that may come up.

“I don’t have the time”

As a caregiver, your day may be filled with medical appointments, daily chores, and in later stages of Parkinson’s disease, providing assistance with activities of daily living (ADLs) for your loved one. There indeed may be very little time. However, it could also be that due to stress, it may seem like there is not enough time. One way to actually see where the time is going in your day is to map it out. Consider using a planner to see what times of the day may be available for a brief pause. Second, self-care does not have to be a physical event. Some examples of self-care that can be practiced throughout the day without additional time needed are: listening to music, repeating a mantra, speaking gently to yourself, noticing birds or trees in nature during any time outside during the day.1 Practicing mindfulness is an example of self-care that does not necessarily require any additional time to be set aside.

“I don’t have the resources”

Self-care may require financial and social resources. Certain types of self-care such as a massage or a yoga class can carry with it an expense. Additionally, there may be the lack of social resources in terms of leaving your loved one in the care of another family member or professional for the time that you are out. Oftentimes, families are on a restricted budget due to the costs of treating the disease. It may feel frivolous to spend money on a self-care activity. While this is understandable, it is worth considering the long-term cost of NOT practicing a self-care activity. How will not engaging in self-care impact your overall health and well-being? A second response to consider is self-care does not have to be expensive to be effective. Low cost self-care activities include: nail painting, self-massage, listening to music, spending time with little kids, cooking good food, writing in a journal, or talking with friends.1  Lastly, let’s address the social support component. Sometimes it may seem like no one is available to provide support, and for some this may be true. For others, it may be worth considering if there is the thought “I don’t want to bother x (friend/family)”. If so, it may be getting in the way. Ask yourself, is there a loved one that I trust who can spend time with my partner while I take a break?

Sometimes there are very real barriers to self-care, however they do not mean you have to throw out the idea altogether. A regular and affordable self-care practice can be developed over time. If you get stuck, consider enlisting the support of a friend, family member or therapist. What are some challenges you have found get in the way of taking time for yourself? What ideas or practices have you found to be helpful in sticking to a regular self-care practice as a caregiver?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Linehan, M.M. (2015b). DBT skills training manual (2nd ed). New York: Guilford Press.

Comments

  • etsmith
    2 years ago

    It’s important to acknowledge the very real roadblocks here and the suffering they cause. For many Parkinson’s caregivers, hearing that we “should” do one more thing is extremely frustrating. I say this as someone who is completely committed to self-care and reasonably good at it. I’m not sure that articles like this are helpful. On a bad day, this would make me cry. How about practical info on how you might find someone to help, the words you might use to ask, and resources you might tap? How might someone who is overwhelmed tackle the job of finding respite care? Is there any way to help pay for it? How have other caregivers managed this? For example, one of my husband’s former lunch buddies offered to continue taking him out for lunch once a week. It’s great! I then asked a few other friends if they would be willing to take him out or bring lunch in once a month. Because caregiving is so isolating, I began asking a few single friends over for cocktails and dinner a few times a week. This helps keep me alive as my husband slips farther into dementia. Sometimes concrete suggestions are more helpful than the standard advice.

  • KathysHeart
    2 years ago

    Well said! … It isn’t the cost of self-care that is the problem … it is the cost of respite! With a modest retirement income who can afford to go out for an afternoon when it costs $22-$25/hr. to hire a “sitter” … at this point … my husband does not need meals fixed or help with his personal care … he has MCI and just needs someone to be there with him … I can leave for an hour or two which may sound like a lot of time … it isn’t … during that time I am pushing and clock watching to get errands run … it is not a relaxing time … if ladies in my Sunday School class want to get together for lunch … I can’t go because I have no one to stay with my husband … by the time I drive to the place and back … there goes an hour … if I hired respite care, an afternoon out could cost me $100 before I even set foot in a restaurant … I see in the online support groups where some spouses go off on cruises and vacations and leave their hubbies in a respite care facility … great for them … but for us middle income folks it isn’t doable … Something needs to be done to help us financially … if insurance companies and medicare will pay for psychologist visits for stressed caregivers then why couldn’t they provide some respite care compensation … if we had the opportunity to get a break then we wouldn’t be stressed and need a counselor … seems like the cart is before the horse.

  • JustineJ
    2 years ago

    And if you balance caregiving, and working so you can pay for a caregiver, you have even less time to care for yourself…..no matter what you say.

  • etsmith
    2 years ago

    Justine, I get it! My husband has had Parkinson’s for over 26 years. It’s frustrating trying to recruit help. The link in the reply is helpful. I don’t have any help this week but this is what I did instead: Took my husband on a long walk outside in his wheelchair so I could get some exercise and fresh air; took time to meditate early in the morning before demands began; drove to the beach together just to watch the water. These strategies may not work for you because what feeds us is different for everyone . The worse I feel, the more I know I need a break in the routine. You might begin by committing to find one thing that would feed you.

  • Chris H. moderator
    2 years ago

    We can definitely see how this can complicated this can be, @justinej. There just aren’t enough hours in the day. I wanted to share this article with you that lists some resources available to find help with caregiving, including a link to a national network of volunteer caregivers: https://parkinsonsdisease.net/answers/finding-a-caregiver/. I hope this helps. We’re glad to have you here in the community! – Chris, ParkinsonsDisease.net Team Member

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