The fact we will become a caregiver to aging parents is usually a given. We know years later we will have to take care of our spouse (or the other way around). But, when the time comes earlier than expected for our partner — let’s say cancer, Parkinson’s, early onset Alzheimer’s or a chronic condition — it makes for complicated emotions and dynamics.
Even when there is a major health issue but not an imminent illness, there is still the gnawing fear that circumstances could change on a dime.
This is not an abstract feeling for me. My husband has three stents in his heart and a gene that makes him vulnerable to blood clots. The gene was last year’s discovery when he developed a clot in his leg after routine knee surgery.
Did I mention his malignant brain tumor? I’ll skip over it because it was decades (and a different girlfriend) ago. With surgery, it went poof. Yet, he is on medication for that tumor for the rest of his life.
When we go to the emergency room, no matter how busy it is, when they hear “heart” and “blood clot,” he always sails through the line. That is not a distinction that brings pride to a spouse!
Today, my husband takes 13 pills a day but has no restrictions and leads a wonderfully active life. I still worry like mad.
According to the Well Spouse Association, there are seven million caregiver spouses in the U.S. Not surprisingly, a caregiver wife is six times more likely to have depression than a wife who isn’t a caregiver.
Taking care of a parent or in-law is different than a spouse or partner. As my friend whose husband died at age 53 puts it: “The natural order of things is for my parents to die first, but that’s not what happened. When my mother and father died in their 90s, they had lived a very full life. It was a pleasure to be there for them. With my husband, it was horrifying.”
When I asked her what it felt like to go through that year and a half taking care of him, and if she would have done anything differently, she had a lot to say. Other friends weighed in. And, I know what it’s been like for me when a problem has flared up.
Can you relate to these feelings?
- Being overwhelmed — not just logistics, but sometimes undertaking complicated medical and very personal tasks.
- Anger — mad at the situation and them for getting sick and changing your life together.
- Envy — your friends are able to enjoy life with their spouses. “I felt totally out of sync,” says one friend about her husband’s illness.
- Physical and mental exhaustion.
- Depression and grief — your beloved is suffering and/or ill. When they have Alzheimer’s or another dementia, it can be especially devastating.
- Fear — for what your life will be/could be without your spouse.
When the marriage or relationship isn’t great and you have to worry about or deal with their health, those feelings can intensify.
Effective ways to cope
1. Figure out what you can, not what you can’t do, together.
Listening to music side-by-side on the couch if you can’t be at a concert, going for a drive if walking is out, or attending three innings of a ball game instead of nine.
2. Vent away.
Your husband or wife can’t help being sick and probably feels like a burden. Discuss ambivalent feelings with others — friends, online forums (do a search for “online forums for spousal caregivers”), a therapist, clergy or someone else with whom you’re comfortable.
3. Give yourself a break, mentally and physically.
Find ways to slash stress (exercise, a meditation app, a book, a movie). Also, realize that whatever you are feeling is normal. Studies show that family caregivers often neglect their own health and are at great risk for depression and physical problems. You can’t afford to be a martyr.
4. Get help.
We want to be perceived as strong, independent and able to cope. You probably are, but that doesn’t mean doing everything yourself. If you can, consider professional help. An easy way to get help but not have to ask for it face-to-face is through a website such as CaringBridge. Family members post what tasks they need done and friends and family volunteer. You can also update everyone at once about your spouse’s condition.
5. Be smart.
I want to travel more with my husband but there are places I have nixed. They’re either too remote or nearby hospitals are either non-existent or subpar. When we go abroad, I plan to buy insurance - trip insurance (in case something happens before and you have to reschedule or cancel), travel health insurance for the cost of treatment in other countries, and medical evacuation insurance (if there’s an accident or grave illness when we’re away).
The mPassport app provides doctors,dentists, hospitals and emergency contact numbers around the world. The Emergency Medical Center Locator free iPhone app lists thousands of medical centers in more than 100 countries. It’s also wise to research specialists and hospitals before the trip.
Even if you don’t think you’ll need medicine, bring it. You don’t have to worry if some place abroad doesn’t have it when (if) you need it or if it’s counterfeit.
Health is something that is precious and unpredictable. Clearly, you can’t control if your spouse gets sick or what the outcome will be. But you can choose to live life fully on its own terms — and on yours.
Guest post by Sally Abrahms
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