This post is a guide to caregiver survival tips when you have a chronic illness yourself. If your loved one needs your help you jump in without questioning it! But taking time to evaluate what your loved one needs, who else is available to help, and what they can afford, can ensure that you are not doing everything yourself. If you are the only caregiver available you need to be extra careful to watch your stress levels when you yourself are chronically ill.
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Caregiving is widespread and hidden. There are an estimated 43 million informal caregivers in the United States today. As the population ages, you may find yourself thrust into the role of caregiver without giving it conscious consideration. But if you are chronically ill, the cost to your health can be considerable!
Caregiving is disorienting. Roles change when you become a caregiver, and relationships, expectations, and responsibilities can be overturned overnight. Inevitably caregivers experience disorientation because most of us don’t plan to take on caregiving roles. You might not be equipped with the skills to discuss these changes and advocate while you are in the throes of this disorientation. Seeking out the support of a therapist or counselor can help keep things in perspective.
Caregiving is stressful. The stress of caring for another person goes beyond normal work-life stress because you are often on-call 24-7. If your loved one’s health concern is new, or fluctuates, you may feel off-balance, not knowing when you can leave them, or how to attend to your own needs. It can be overwhelming to suddenly have to take into account everything about a loved one’s life: their diet, medications, appointments, and well-being. All of this contributes to putting your own needs on the back burner. The long-term stress of caregiving can cause unaddressed issues in your own health to flare up, making you unable to care for either your loved one or yourself.
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As well, the fatigue and exhaustion that caregivers experience are off the charts, because all of our systems are taxed at once. (See my post on trauma and Vagus Nerve Health)
Trauma therapist Eileen Devine, LCSW writes about how many caregivers experience multiple layers of exhaustion. She lists four layers:
Caregiver Burnout – when you become demoralized, disillusioned, cynical, and exhausted on all levels. (see my Guide to Self-Care)
Relational Stress – when it feels like your relationship with your environment (or other people in your environment) exceeds your resources and endangers your well-being.
Trauma – when your caregiving experience includes trauma on a daily or regular basis from stressful caregiving interactions, medical procedures, medical trauma, or being the target of aggression. (see my Guide to Clearing Trauma for Vagus Nerve Health)
Compassion Fatigue – when you gradually lose compassion over time, resulting from an ongoing relationship with a needy individual.
Each of these conditions separately merits professional help. Together, they are utterly overwhelming. In order to survive as a caregiver, Devine recommends the following tactics:
Recognize your experience for all that it is. Honor your feelings and get professional support when needed. The fatigue, trauma, and stress all need to be named and processed in a healthy way to be able to continue to function.
Choose support wisely and avoid toxic people and relationships who don’t feed you. Don’t hang out with people who take from your already tapped-out energy stores in your downtime. Seek supportive relationships with people who get what you are going through. It can be more challenging to find them, but associating with other caregivers through support groups or online chats can give you the validation you need.
Prioritize yourself and delegate anything and everything that you can. This is for your survival. Figure out how those around you can help, and ask for it. You can’t do everything, and your survival depends on taking care of yourself. Easier said than done. But focus on self-care ideas that give you the most bang for your buck. Take naps, even micro-naps!
Don’t assume that those around you, even your partner or closest friends, understand the full impact of your trauma. Find ways to let them know how you are doing and ask them for help. Making assumptions can create even greater feelings of isolation.
If something brings you joy or is restorative, it should be considered an absolute necessity. Plan ahead for whatever you can, like a massage, a walk with a friend, or ordering food. Then have a bag packed for the instant you have a brief unplanned break, with whatever you need to recharge so that you can take advantage of it. Think about what really feeds you and have it ready to go, like a book, a chocolate bar, or funny videos ready to watch on your phone.
Caregiving is exhausting work. Most caregivers suffer physical ailments as a result of constantly being “on call.” If you have aches or pains, see a chiropractor, get a massage, try to get adequate sleep, get some form of exercise, eat nourishing foods, and drink plenty of water. Being a martyr won’t help you or anyone else. If you have a serious health problem, please attend to it.
I’d love to hear your comments below!
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