Years ago when my husband had his first major medical crisis, I could not bring myself to leave the hospital at night. I was scared and sad, and I felt that if he could feel the presence of my love near him, maybe that would be the medicine that would tip the balance toward life when more traditional medicines could not.
Of course, my rational parts told me these feelings were more about me than my husband, but I listened to them anyway. After all, I matter! I slept in a chair in the hospital for a night or two, and then realized I needed to go home to my own bed. He wasn’t really much better than before, but I was.
I needed to feel I had some control in an out-of-control situation, and for me being close by my husband worked. Some people thought I was nuts, but in fact, I was very sane. And even though they could not see it, I was taking care of myself.
Now if I had kept this up longer I would have depleted my energies, so I am not saying you should sleep at the hospital every time your husband is in one. I haven’t slept in a hospital in decades, and my husband has been in many. But in that moment when care giving was first abruptly thrust upon me, I needed to stay near him for a night or two, and it worked for me. You don’t always have to do what well meaning people say you should do. Sometimes yes, but sometimes no.
1.) I understand the value of structure in our lives, so during this most recent crisis I chose to work a few hours in my office each day after things calmed down. I love my work, my husband was safe, and I knew the routine of work would give me comfort and remind me that life is more than a hospital room.
I also left my car at the hospital after visiting him each morning, and I walked to work, to the grocery, and to every errand. Exercise is the best stress reliever on the market. After work, I walked back to the hospital and spent a few hours talking with my husband.
The ground was covered with snow, the sun was out, and I had glorious walks. Many walks ended with a happy and joyous wife walking into her husband’s hospital room — another kind of potent medicine for both of us!
2.) I’m kind of compulsive, so after the initial crisis I searched until I found a friend of a friend who taught me all I could absorb about my husband’s new medical problem. This was not an attempt to second guess the doctors, but my own need to have a deeper knowledge of complicated issues. I told myself that I wanted to understand enough about cardiology to ask the right questions, and make more informed decisions. Some of that is true. But it is also true that I just feel more in control when I have more information. It’s just who I am. Again, I allowed me to be who I am. I went with my strengths, my authenticity. Someone else might want to know nothing, and that would be right for him or her. We are who we are and that will take us far in the tough times.
3.) I made a choice to stay centered.
I made the choice to ‘choose’ my thoughts and not ‘borrow trouble’ as my grandmother used to say. I did not project into the future. I lived in each moment and dealt with the issues of that moment.
And I made the choice to concentrate on learning, supporting and advocating for my husband, while still understanding the limits of medical science and the pressures on medical workers who work hard to serve others.
And I made the choice to see the humor in things, to laugh, smile, and savor the whiff of joy when it floated by.
Finally, my husband came home, which leads me to…
4.) We live in an extended family home with my daughter, son-in-law, and their three kids. There is a great deal of support for me here and for my husband. Always get more support if you need it. Call a church, senior center or the hospital and see what they have for you. Reach out. Call friends and ask neighbors for tea. You need support. I do not care how tough you are. Isolation is the care giver’s enemy. Here is why:
5.) Eventually even the toughest of us have to let down. But it is only when we feel safe and protected that we can finally relax enough to just think about ourselves. Care giving is a big responsibility, but that responsibility starts with caring for ourselves.
So after my husband was home and safe and life was a little normal, I had a couple of bumpy days. I felt sort of wimpy. I comforted myself (comfort is sometimes spelled c-h-o-c-o-l-a-t-e) and accepted comfort from others. It was the best thing I could do. This ‘down time’ helped me build up my reserves again, and within a day or two, I felt centered and like myself.
I have learned that real control often means not needing to be in control. I choose to make a choice to roll with the punches, listen to my feelings, use my brain, choose my thoughts, get support when I need it, and take care of myself in ways that are authentic to me. And I am just fine with not doing everything perfectly! I want the same for you.
Here’s the deal: I do not want to be a care giver. The term care giver makes me think I have to give care all the time and get nothing in return. I do not agree with those who call care giving a sacred honor. I mean, I love my husband and often care for him, but care giving can be even grittier than love!
Thinking of myself as a care giver makes me feel isolated. Then, I feel tired and, eventually, I’ll feel resentful. I do not want to feel resentful because I love Brooks, I like to feel that love, and I want to love him the way he wants to be loved. If I am resentful or angry then it would be all about me and not so good for either of us. Resentfulness would turn our authentic and gritty love into a concrete wall.
I also refuse to see Brooks as only a care receiver. He is much more than that.
This changed paradigm from care giver to care partners, allows me to love Brooks without resentment and in the ways he likes to be loved. It sets Brooks up to know his value to me and to the world, to understand and feel that while many situations have changed, he still owns the power to love me the way I like to be loved.
We remain the two stubborn, determined, tough, fun loving, and funny people we were the night we met. And as care partners, the love affair continues, no matter what.