When the news comes, when those words are spoken, your lives are never the same. The words themselves are always different, but their meaning is the same: death is on its way. Your partner in life, the one you love in so many deeply rooted ways, is going to suffer through an illness and eventually pass on. For so many of us, it is just too much to grasp at first. It takes time to realize how life will change, at least in the small ways. And it is all those small daily things that mean so much in life. That first phone call to the hospital begins the acceptance. Then comes the search for mobility aids, specialist appointments, home care equipment; these are the tasks that make your role as caregiver emerge so gracefully.
Yet, as a caregiver you will be met with suffocating emotions that can be too shameful to acknowledge. Bouts of anger, frustration, and guilt become daily emotions. You feel anger at the situation, frustration with what your life has become, and guilt about feeling such strong emotions and having bad thoughts when your loved one is suffering so much. Understand these are natural reactions to the situation. You are the rock in the relationship right now, the bedrock that holds up your ill partner.
Beneath all that strength is a deep cavern of boiling lava. As your stress level rises with every passing day of care-giving, the lava boils up more and more. Cracks in the bedrock occur, friction between the rock plates creates sparks, and spurts of steam appear. Those bad thoughts and feelings of anger are just your subconscious bedrock trying to let off steam, preventing an eventual eruption. Find a way to de-stress so those bad thoughts and guilt don’t overtake your life. Have a daily cry, go to the gym, head to the shooting range, go to a movie, and find something that allows you to release anger and frustration.
When you are caring for someone so ill, it can be very easy to fall into a pattern of enabling. Have a private conversation with the doctor, therapist, specialist, whoever can give you a clear idea of exactly what your partner is capable of doing. Be realistic about expectations, and push them to take responsibility for what they can. As the caregiver, if you can avoid the trap of enabling, your level of resentment will diminish and you will help to avoid the creation of an invalid. There is no need to be an iron fist of discipline. Communicate with your partner about common expectations, then set some ground rules for all those helpful family members.
When there is a terminally ill person in the family, it can become very easy to say “we will skip it this year, because John is so ill” or “it’s just too much”. Sure it is far easier to stay home during a family function, or skip the holidays, but part of what makes life worth living is participating in all those annual celebrations. Just because someone dear to you is gravely ill, it doesn’t mean they have already stopped living or they wouldn’t get enjoyment from a family event. In fact, it is during those monotonous days of being ill that we enjoy life’s events most. Ask for help, and don’t be afraid to request special circumstances for including your ill partner. The effort put in will always come back in the happiness given during such a hard time, namely memories.
This is the important one: give yourself permission to ask for help and care for yourself. There is nothing wrong with asking for help. No one can care for the terminally ill all on their own, 24 hours a day, seven days a week, four weeks a month, and so on. If that were true, we wouldn’t have nurses in the ICU doing 12 hour shifts a couple times a week. Ask for help.
Give yourself permission to care for yourself. It is okay to head to the spa or go shopping for a couple of hours. Those are the things that help us feel like more than just a caregiver, because you are so much more. Plus, if you are feeling good about yourself, you will be a better caregiver. Your happiness will make your loved one feel like less of a burden. In caring for them, care for yourself.
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