The Way We Were
How to be a caregiver and still be a couple after a stroke
‘Three weeks ago, I was flying around the world. Now I can't go to the bathroom by myself.’
‘I told him a joke, and he burst out crying; I told him my brother died, and he burst out laughing.’
‘She was the love of my life..I can't believe I said that. I'm talking like she's gone. And she's right here.’
Stroke survivors and their spouses are daunted by the task of coming home to the familiar space that marked them as husband and wife. In the time it took to say, "I do," all those many years ago, a tiny blood clot broke loose and changed their entire landscape.
The man who once checked every door before he went to bed may not know where the doors are anymore. The novelist wife may not remember how to read. Lifetime roles get reversed in a blink. Can you be a caregiver and a couple at the same time?
"For couples, the loss of who they were together, is profound. So the sooner they try to reestablish what they reasonably can do as a couple, the better, with the knowledge that some aspects may change forever," says Sharon Ostwald, PhD, RN, professor and Isla Carroll Turner Chair in Gerontological Nursing at The University of Texas Health Science Center at Houston (UTHealth) School of Nursing, Center on Aging.
The way we are
Usually the job of redefining a mutually satisfying future together will fall to the primary caregiver, the spouse, during the most stressful and lonely time ever.
The impending fear of loss of intimacy as a couple can be as paralyzing as the stroke itself. Sex, depending on age and its importance to the relationship pre-stroke, need not be a thing to fear or relinquish. "Generally if you were sexually active before the stroke, you can return to it safely," Ostwald says.
Pay attention to fatigue levels: make love in the morning, not at the end of the day when you are both exhausted, Ostwald suggests. Change positions to accommodate weaker limbs. Realize that society imbues a man with a need to perform, so your husband may feel frightened that he's not up to the task. You might fear that sex will bring on another stroke. Depression, a typical and treatable offshoot of stroke, both for survivor and caregiver, may trample sexual desire altogether.
So, talk about it. "You may each be suffering your own silent agonies, with neither of you wanting to bring it up," Ostwald says. "It may be that you simply need to resume non-sexual intimacy more than anything else."
The way I am becoming
The hard facts are that the largest percentage of improvement post-stroke occurs in the first six months. Profound fatigue, depression and frustration are part of the recovery phase for both of you. Sometimes these will all disappear. Sometimes not.
The key to maintaining a "couple" mentality in the looming shadow of fulltime care giving, is accepting what the new reality is and finding a way to flourish during the process of recovery.
"The problem with stroke though, is that you don't always know how long the recovery will be, or how much will occur, " Ostwald says. Caregivers burn themselves out by trying to be perfect; stroke survivors feel tremendous guilt from becoming a burden. And neither know how to give themselves permission to stop feeling this way.
So, take a fresh look at what is, what will be, what you can change, and what you can accept. In order to be a healthy and loving couple in the face of your "new" relationship with one another, you might first have to form one with yourself.
Change, acceptance and the wisdom to know the difference
- Accept the fact that this is not the same spouse you married. But then again, neither are you. We all change every day.
- Accept that both of you are evolving through their stroke.
- Accept help. Be specific with offers from friends and family about what you need. People want to help, and you need the help.
- Accept social invitations. It’s easy to turn down those invitations. But one day, people will quit asking.
- Change your temptation to give all of yourself to your loved one. If you’re lost and burned out, there are no options for your loved one. You can only give what you have.
- Accept that your scintillating dialogue as a couple may morph into a monologue for a while. Accept that your loved one is mourning the loss of verbal expression as he knew it, even if it’s temporary.
- Accept that you will lose your temper. You will resent the bed pan, resent the bed and resent the person in the bed. And you will feel guilty for the resentment. Accept your new status as Human Being, forgive yourself and move on.
- Change your temptation to neglect your own care. Stress and fatigue put you at risk for a whole host of woes. Take a break, take a nap, a shower, a walk. Most important, take your neighbor up on her offer to sit with your loved one for an hour. (Then, take a breath if she doesn’t do it exactly the way you wanted. It was an hour you didn’t have before.)
- Have the wisdom to know the difference between creating dependence and promoting your loved one’s own independence.
- There's a difference between doing for them and caring for them.