Someone thought it would be a good idea to hear Marcia’s perspective as a caregiver in dealing with along term illness. Here are some of her thoughts:
It is difficult because you can’t take away the pain that your loved one is experiencing. You do what you can to encourage your spouse and make them comfortable. You don’t think of it as a chore, but rather a gift of love. But being on call 24/7 puts certain stress on you that sometimes is hard to bear. Caring for a person with a long term illness is a lot like the responsibilities of caring for a child. Even when your loved one wants to be independent and do things for themselves, you are always in demand and available. It seems there is no getting away from the situation. It is an all consuming task.
You want to be at the hospital all the time to support your husband, but also need to get away for a good night sleep and to handle chores etc. But when you are away, you want to be back at the hospital, even though being confined to one room adds it own stress. It is a feeling that pulls you in two directions at once. Falling asleep at home can be difficult. What helps me is singing hymns and praying until I fall asleep.
This experience takes you out of your comfort zone. You’re having to do things you just as soon not do. Sometimes it is simple things like driving back and forth to the hospital or paying bills. You end up taking on roles that were usually your husband’s, or at least you would have more of his help for making decisions. Suddenly, you find yourself not only a mate but also a legal and medical advocate for your spouse, making decisions and setting up appointments, tracking medications, and dealing with insurance and finances. Because you are in the hospital room most the time, you end up being part of the nursing staff. And yet, after juggling all these roles, you also need to be a loving spouse and friend.
Sometimes people expect to feel bad and so they do. Others look for the best that is possible and so they expect more of themselves which in turn makes them feel and cope better. This applies both to the patient and the caregiver.
What has kept me sane in this season of life is much more than maintaining a positive attitude. The real strength has come from God in both the big and small things. Our every day devotions, bible reading, and talking to God throughout the day has helped to de-stress my life. He takes the excess burden off me. I could choose to worry or dwell on the bad stuff. But in the face of so many unknowns, I choose to trust God to direct our lives no matter which direction they go.
“Trust in the Lord with all your heart and lean not on your own understanding;
In all your ways submit to him and he will make your paths straight.” Proverbs 3:5-6