Susan Philips
I have been married for almost 40 years. My husband has always been a bit of a mixed bag---passionate, loving but also stubborn, and way too forgetful and dependent. I have always been the more independent of the two, priding myself on knowing how to take care of my needs, knowing where things are. I used to joke that Art needed a second wife to do things for him—find his keys, write down appointments, keep track of pretty much everything. I was amazed that he could run his law office for almost 50 years. How the hell was that possible when he couldn’t find his socks?
Somehow, we were able to stay married. Like most couples, the contradictions never rose to the level of a divorce. Maybe because we had four children between us (he has three and I have one). Maybe because we were always able to laugh and have fun together. Maybe because we loved each other. Maybe because of all of that, I was able to live with the constant: Where is the butter? Do you think someone came into the house and took it?
And then in what seemed like an instant, everything about our life together changed. He had surgery, which led to massive blood clots. Then his bladder stopped functioning which led to 11 trips in two years to the hospital for UTIs, more clots and gall bladder surgery. My life felt like the movie ground hog day. He gets stronger, then another hospitalization, then back home weaker and more helpless. My worst nightmare: I would become his permanent caregiver. No choice. He needed me. I owed him. The balance tipped. Not remembering a pill could cost him his life. Not knowing how to put in a catheter correctly could cause another infection. My life was no longer my own. And this in a nutshell is what I want to talk about. What do you do when the person you married gets sick? When the balance changes. Your relationship changes? Not easy questions.
Here are four main things I have learned.
- First and foremost, don’t run from your feelings. They are what they are. At times you will feel angry and put upon. I remember thinking: If you ask me to rearrange your pillows one more time, I will scream bloody murder. At times, you will feel frustrated. Other times, sad and lonely. What happened to our life? Will we ever make love again? Will we ever go to Maui again? Where did our life together go? What is our “new normal?” Don’t be afraid to talk about this. Find a time when the two of you are not exhausted, a place that is calming, and then talk, really talk. My husband, apart from his forgetfulness, has a lot of pride. He is kind of an alpha man kind of guy. It was hard when he couldn’t take out the trash, carry the groceries, or the worst still, drive. He worried that I was doing too much. He saw the strain in my face. And I wondered if he would survive, live another day. I was scared. We needed to get these feelings out of our body. Sometimes, we would talk for five minutes, other times longer. But the key is to not bury the feelings. If you do, trust me, you will have a permanent scowl on your face that no amount of Botox will erase.
- Leave the house regularly. Go somewhere, anywhere. Find people to stay with your loved one. Maybe it’s your children. Maybe it’s friends. Then take a walk, go to a movie, meet a friend for a drink, or take a nap. Just do something. Don’t use this time to do laundry, mop the floor or return phone calls. This is your time. You will come back refreshed and ready to take on the next demands. It helps if you put this on a calendar. That way when you find yourself wanting to pound your bed with your fists, something I have done regularly, you can remind yourself that you will have time off soon.
- Don’t take on everything. Ask for help. Make a list of things you need and then ask away. Doll out responsibilities. I asked our kids to handle communication. I was horrible at it. I must have created ten different text groups, each with different people. Then one day, one of our kids gently suggested that they take on the task. People were getting confused, he told me. I also asked friends and family to go grocery shopping, pick up prescriptions, and take us to the doctor. Trust me, people want to help. They need you to tell them how.
- Find the humor. Okay, so this is not always easy, but it is important especially if laughing has been an important part of your life together. There are just so many indignities when you get sick, starting with adult diapers. My husband is tall and thin with no tushy. Hard to find ones that really fit well. They kept falling off. And then there are the young nurses in the hospital who give sponge baths. That was a sight to behold. The good thing is that my husband is not shy about these things. But still. It was cringe worthy. And then there were the crazy fights I had with nurses, one of whom told me I was too pushy, which I took as a badge of honor. I told one of them, “Just bring it on.” My husband and I still laugh at that story.
To be honest, even if you follow my four pieces of advice, your life will not be easy, but it might be a bit easier. Fortunately for my family, our story has a good ending. My husband has not been in the hospital for over a year. He is back to working full time, fighting the good fight. While he no longer drives, he has learned how to find services to take him places. Our life, while not what it was before his health scares, is in a pretty good place. We go to movies, hold hands, laugh a lot. Our kids no longer call daily to make sure we are both okay, but there is no doubt that we have all become closer. There is a deeper appreciation of who my husband is. His son, who refers to his dad as “the beast” continues to regularly bring him a root beer float, something he refers to as the medicine. My son continues to bring him cheese enchiladas with double rice, another medicine. We are all amazed at my husband’s strength, will to live, and passion for life. He still goes to demonstrations, protests injustices in the world, and fights to make our world a better place.
It’s impossible not to change as a couple when roles are redefined. In our case, I am pretty sure our marriage has been strengthened by this experience. We have learned about each other—our strengths and weaknesses. We have faced death together. And, while he continues to lose his keys and asks where the butter is (some things never change), we have come out of this with a renewed respect and love for one another.