Although I admit I am the first person who says “Do as I say, and not what I do”, it is very important to take care of yourself as you are taking care of your loved one. I know it is against your instincts to focus on yourself when you feel someone needs you more, but it is important to do so.
The caregiver has a very important role in caring for the patient. A caregiver can have a varying amount of duties demanded upon them depending on the needs of the patient. These demands include not only physical actions, but also the mental requirements in keeping the patient from depression and apathy. If the caregiver is feeling imposed on, taken for granted and not appreciated, it will reflect in the care of the patient.
There are simple ways to take care of yourself without sacrificing the needs of the patient. Physical activity is very beneficial, even if it is just a walk around your neighborhood. I try to get to the gym 4-5 times a week to use the treadmill. Even though I would rather just sit and relax, I always feel better after an hour on the treadmill. More enjoyable activities are also helpful, such as a night out with friends, my weekly bowling league and other ways to interact with other people. We joke that our bowling league is really a social event where we happen to bowl at the same time. Other pampering dates, such as manicures, facials, massages, should be scheduled into your routine on a regular basis.
The biggest obstacle in taking care of the caregiver is to overcome the guilt that always comes about when you take time for yourself. The way I ignore this feeling is to remind myself that it is important for the caregiver to feel at peace with their role in their patient’s care. The caregiver will not be doing their job if they are harboring resentment towards their loved one for something that the loved one has no control over. This is not to say we don’t have our times of utter frustration, which we deserve as well as the patient does. But we learn to move past those feelings and take care of ourselves as well as our loved ones.
A little bit about Laurie...I am a MS Caregiver for my daughter, who has had MS symptoms since she was 10 years old. Pediatric MS was rarely recognized in 1999 when we began our MS Journey. 14 years later, I am passionate about finding ways for other families to connect with each other as we are forced to confront this chronic illness. I find a lot of support thanks to the internet and a Facebook group Pediatric MS Alliance. From this group, I have met many families from around the world that are also feeling isolated. From this Facebook group, we have formed the website www.pediatricms.org and are in the process of obtaining nonprofit status, with the goal of connecting families in person as well as informing families of activities and information designed for the pediatric MS patient.