“Joe is still loving and caring and has a great sense of humor, but he’s not Joe and that’s scary and painful,” says his wife CJ, who has written a book about their saga called One Pedal at a Time.
“The physical work of caregiving makes me tired, but I can get over that. It’s the emotional turmoil of watching my husband be different than he had been, and seeing the change in this vibrant man who I love so much.”
A changed relationship
As of 2009, there were nearly 3.5 million spousal caregivers, according to an AARP study. With people living longer, that number is expected to grow.
And while being a caregiver to a parent is tough, when it’s your beloved husband or wife, “In addition to all the usual challenges that come with caregiving responsibilities, it’s also a big change in the marriage relationship,” says John Schall, CEO of Caregiver Action Network, a national family caregiver organization. “There are new issues of dependency and it can get in the way of intimacy. The marriage dynamic has to adapt to a new normal.”
Those who married older spouses may find that a 15-year age difference that didn’t matter in their 20s and 30s can seem huge when one is 65, and the other, 80.
Diana Denholm’s husband was 16 years older. The psychotherapist and author of The Caregiving Wife’s Handbook cared for him for 11 years, while he suffered colon cancer and then congestive heart failure.
“When a spouse dies it’s horrible but it’s over,” Denholm says. “When the spouse has a chronic condition or all of a sudden something serious happens, it is an ongoing ordeal. The couple doesn’t know what to expect from each other. It totally changes the game from what it was. There can be excruciating loss.”
The physical and emotional drain
In the last 23 years, Steve McMillian’s wife Wendy has had breast cancer, multiple sclerosis, and another rare auto immune disease that creates open wounds on her leg. She gets around in an electric wheelchair.
Caregiver Steve McMillian
While they have an aide during the week, Steve, who has knee problems, handles nights and weekends. That can mean getting Wendy out of bed, bathing and dressing her, checking wounds, making sure she is fed, and helping her to the toilet. Sleep at their Alexandria, Va., home is often interrupted by nightly trips to the bathroom.
Like most spousal caregivers, Steve, 61, has had to make the transition from a partnership to a solo act. Work. Household chores. Grocery shopping. Paying bills. Managing medications. Coordinating and providing care. Shuttling to doctor appointments.
“There is no one else I would rather be with, but it wears on you,” says Steve.
That stress and exhaustion can take a toll. According to one study, older spousal caregivers have a 63% increased of dying over those of the same demographic who aren’t caring for a spouse.
Keeping it together
If you’re caring for your spouse, it’s normal to feel conflicted emotions, experts say — everything from guilt to resentment to anxiety and even jealousy of other happy couples. These strategies can help you cope.
Focus on what you can still do as a couple. You both love the symphony, but your husband can’t sit for hours? Go to the concert and leave at intermission. Or listen to your favorites at home. Your wife can’t fly? Plan shorter car trips.
Find the right outlets. It’s normal to feel resentment, but you have to avoid taking out anger on your spouse (who likely already feels like a burden). Instead, seek out in person or online support groups such as the Well Spouse Association or Caregiver Action Network, disease specific organizations, a therapist, member of the clergy, sibling or close friend.
Ask for help. Too often, people will say the absolute wrong thing, or not offer the help you need most.
Unfortunately, that means you will often need to take the initiative. If you’re feeling lonely, ask a friend out for coffee, a movie, a walk or make time for a long phone call. Need food or transportation for a doctor’s appointment or something else? CaringBridge lets family members request help, and volunteers to sign up for it.
Promote independence. No adult likes to feel dependent, so give your spouse whatever control they can handle.
If your spouse has difficulty walking or with fine motor tasks, consider investing in voice-enabled smart-home technology, so they don’t have to ask you to turn on the lights, play music, or change the TV channel. Other devices can help remind them when to take medication, to lock the door, and more.
Find caregiving-specific resources. If your spouse has Alzheimer’s, check whether local museums and theaters have special programs for people with dementia and their family caregivers. Some towns and organizations have memory cafes, which are places where family caregivers and those with memory issues gather and engage in structured activities or conversation. You can look for a memory café in your area here.
You may also be able to find respite services via your local Area Agency on Aging, the Family Caregiver Alliance’s Family Care Navigator, the federal government’s Eldercare Locator or Caregiver Support and your human resources department at work.