You and your spouse have plans, big plans for your retirement, for your children, and for your family. You have expectations. Suddenly, everything changes. Your spouse develops some mysterious symptoms that evolve into full-blown illness. It’s a persistent, chronic illness that leaves him weak and in pain, irritable, and emotionally unavailable. While his doctors play with different medications and suggest different courses of treatment, you are responsible for his palliative care and for keeping him comfortable.
At first you remain hopeful and vigilant. The doctors WILL come up with a treatment plan, because you WANT it to be so. You’re positive with the kids, despite their concerns that you’re not telling them something. You rally them the way a commander rallies his troops before going into battle. While your spouse sleeps, you bake cookies with them, take them to the park, and snuggle with them extra time. As the days turn to weeks, nothing changes. His mood worsens. You become despondent and wonder how long you can sustain this?
Months into the illness, you lose your cool, and yell at him. It wasn’t his fault. His moaning and kicking kept you awake and you didn’t sleep. In fact, you haven’t really slept in weeks. Then your oldest daughter’s teacher calls. Your daughter hasn’t been turning in assignments. Then your mother calls and wants to talk.
“How could you talk about nonsense when I’m dealing with something important!” you say.
“You don’t need to be sharp with me,” she says. “I’m only trying to help. Perhaps you should find someone to talk to.”
All you want to do is scream, “why can’t everyone do what they’re supposed to do?’
That’s when it hits you. This is your “new normal.” You are co-parenting those children that you both made and you’re doing it alone. And you’re the caregiver for your spouse too.
At this point, you consider options. You could run away. You could ignore the problems. Or, you could accept this new normal and find ways to make life better for you, your spouse, and the kids.
Before you can make lots of changes, you must grieve. In fact, both of you must grieve the loss of life you had hoped for. Perhaps, because of the illness, your spouse had to give up his livelihood. You’ve possibly lost the freedom to come and go. Perhaps you’ve had to take a leave of absence from your job to care for him. Whatever the changes, acknowledge that both of you must work through the loss.
Next, make up a master calendar, one that the entire family can see. No doubt, your spouse will have additional doctors appointments. You will have more responsibilities relating to his care. Have your children add their afterschool activities and social activities to the calendar. Involving your children in the calendar will empower and involve them.
Communicate any challenges you’re having, either with his illness or with family problems. You are still a partnership and while you’re the caregiver and he the patient, treating your marriage like a partnership will help maintain an emotional intimacy. Also, don’t be afraid to express challenges to other family members. You don’t have to be a superhero in the caregiving business. You’re human. You have emotions. And, you have limitations too. A dear friend and former army wife gave me sage advice during my husband’s first year-long deployment. Make a list of 100 friends and acquaintances who’ve offered “let me know if I can do anything.” Hold them to it. When you have a hard night, if you need a cup of coffee, or someone to vent to, move down the list. It’s good to know you have people to talk to, you don’t have to over-burden best friends, and you show those on the list that you value them.
If you can, ask friends to solicit help from your community either in the form of car-pool or meals. In 2007, I had knee surgery and couldn’t get off the couch. We had seven children at home, some of whom had jobs and needed rides. While I’m not great at asking for help, I did follow this advice. I called anyone I knew, told them the situation, and asked for a helping hand. While not everyone could offer rides, some did. Others paid me visits or called to send wishes. A few ran errands or did my shopping. CareCalendar.org is a great organizational tool that helps members of a community to organize meals and other services to people in need.
Take care of your own health. According to Linda Carroll of Today.com, it’s not uncommon for the spouse/caregiver of an ill spouse to die suddenly. Caregivers tend to neglect their own health and place the needs of the ill spouse first. You can’t be an effective parent for your children if you die suddenly. That also means taking care of your emotional health. Don’t forget about friendships. Carve out time for yourself, talk on the phone, socialize, and maintain hobbies.
Let your kids be kids. They should know when you’re having a hard day; but they don’t need to know the intricacies of the struggles you face (unless they’re adults and are emotionally capable of participating in the care). Despite the illness, you should communicate firm boundaries, what you and your spouse expect of them, and take an authoritative parenting approach. According to Psychology Today, an authoritative parent is firm but warm. An authoritative parent knows how to parent from a distance and knows when to step in and let go.
One important note. It’s scary for a child when a parent is ill and while some kids are naturally empathetic, some children might be afraid to go near the ill parent. While your spouse cannot be the same person, it’s important for both your children and your spouse to embrace the time together. If your child seems reticent, have an open and honest conversation with him and guide him back.
Finally, despite the change in roles, treat your marriage like a marriage. Schedule time for a date, even if it’s a movie in the living room. You and your spouse need to fortify hard times with moments of intimacy.