Navigating the role of a caregiver, particularly for a family member, is a profound and challenging journey. The process unfolds in several distinct stages, each marked by its own set of emotional and practical hurdles.
The Realization
The first level is “The Realization” that something is very wrong with your family member and accepting responsibility for taking action despite their protestations. Then, it is time for the caregiver to “Keep Calm and Carry On.” Then you’re asked to sign forms right and left, permitting this or that; with every signature, you become increasingly aware of how much their life is in your hands—very stressful.
Wait & See
The second level is the “Wait and See” phase—as caregivers, waiting is a fact of life. You wait for test results, for surgeries to be over, and for doctors to return your calls. You learn to sit in waiting rooms for hours and hours, remaining calm and reassuring your patients to keep calm. “Everything will be alright” falls from your lips hundreds of times, but you also have no idea if that is, in fact, the case. The truth is, you feel like you’re jumping out of your skin—deep cleansing breaths can help you through this phase.
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Living With the Unexpected
The next level is “Living With the Unexpected,” as in “He or She has been diagnosed with…” and upon hearing it, the impact sends you reeling. It’s amazing how often the problem that brought you to a doctor becomes something different and much bigger. Then you feel a sense of “Rallying the Troops”—the virtual soldiers inside your head come together to get things done in a crisis: What do I need to do first? Who do I have to call? What do I have to have in the house? How can I do this alone? Who can I ask for help? What’s next? How will our lives be changed? How long does he have to live?
Falling apart would have to wait until the worst periods of stress were over. The pressures of caregiving crystallize your sense of good judgment—lists, charts, and all manner of organizing tools can make you feel more secure that you wouldn’t forget to buy or do anything regarding your patient’s care.
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The New Normal
The next level was finding “The New Normal.” Caregivers generally put the patient first and think of themselves as afterthoughts. You get tired of hearing, “You know you have to take care of yourself first because if anything happens to you…” We know this already! And it’s easier said than done; caregivers get around to taking care of themselves to whatever extent they can.
Some patients get well. Some don’t. Some go into remission, but know whatever it is may come back. It’s hard living with this hanging over your head. Which leads to “Pre-Grieving.” Whether you’re grieving for the life that was and will never be the same again or for the anticipated loss of a loved one, you’re going through a mourning phase. You generally present a brave front to the world. So what can you do with all the feelings coming up? Some of you can get therapy, either privately or through the primary facility managing your loved one’s care, but all of us can find a pencil and paper and jot how you’re feeling down.
Journaling is an excellent way of alleviating stress. By writing down the day’s events, how you experienced them, and how you felt as a result, you’ve taken a step to “unload” the weight of the burden you bear.
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Living with Loss
The last level is “Living with Loss.” For many, that means losing the person you were caring for. For others, it’s losing the way you used to live. The pre-grieving should’ve equipped you for this, but only to a degree. Nothing can prepare you for the reality of finality. There will be those who feel the end is a blessing, that their loved one has suffered enough, but they will still grieve. There is no fixed timetable for experiencing heartache; this doesn’t mean you don’t get on with your life because you will, but the pain is still present. Permit yourself to feel however you want to feel without guilt.
Caregiver stress will never be a non-issue, but you can see that by accepting the reality that you can’t control everything, examining exactly what you can do will help you keep it in check. No matter where you are in your caregiving journey, these simple practices will provide some relief. And always remember, you’re not alone.
