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“For better, for worse…in sickness and in health…”
About 7 percent of spouses are caring for a partner, according to 2015 statistics from the Pew Research Center. Though it may seem like the ideal arrangement—Mom and Dad can stay home and care for each other—the reality is this: it’s incredibly difficult for many caregiving partners to recognize the need for help and accept it before it’s too late.
Your parents made a vow. They don't want to admit help is needed because, in their minds, that means they've failed. They put themselves last. And some reports show they pay the price: spousal caregivers (aged 66-96) who experience caregiving-stress have a 63 percent higher mortality rate than non-caregiving peers, per a report from the Family Caregiver Alliance.
Caregiving spouses may also be compensating for the true daily needs of their partner. Because your father is caring for your mom 24-7, he sees everything—for better, for worse. He may not tell you just how bad the “for worse” parts are, instead, focusing his updates on the better. Although positivity in caregiving is important, this kind of denial can lead to dangerous outcomes for both parents. It’s vital that adult children dig deeper when it comes to the status of caregiving life at home—and make recommendations for support sooner.
It’s easy to think of your parents as keeping each other company at home, but their relationship has been changed by caregiving—and no spousal caregiver should ever be an island.
As caregiving intensifies (and sometimes when it first begins), many friends fall away. Jolyon Hallows, who cared for his wife Sandra for 20 years, experienced this. After Sandra’s Parkinson's diagnosis, several people she had considered friends said they'd call later but never did. They were too busy to visit. It was painful for Jolyon to watch.
Another heart-wrenching moment—and one of the few times Jolyon saw his wife cry following her diagnosis—was when Sandra lost her driver’s license. The loss of independence and mobility is devastating for many older adults, and it can affect the family caregiver too.
Many of us have experienced something like this. My grandmother never got her driver’s license. When my grandfather was bedridden by Alzheimer’s, she had to rely on family members to drive her to places. But she never wanted to leave his side. She isolated herself by choice.
Over time, with these challenges in the foreground, spousal (and family) caregivers become more focused on the care receiver and cut off contact with friends and sometimes even family. They stop going to church, the library or out to their favorite restaurants. They cancel hair appointments and other social engagements.
The health hazards of loneliness and isolation are incredibly serious. In fact, new research suggests loneliness is a higher risk factor for early death than smoking or obesity. If your father is feeling lonely or depressed while caring for your mother, but he has no support from friends or family to encourage him, what kind of care will he be providing? It’s a sure path to burnout.
Family caregiving is lonely. It's emotionally difficult. But it can also be quite taxing on the body. Fatigue, illness and falls may increase. If Dad is unable to sleep at night because he's afraid Mom will wander, that loss of adequate rest will quickly catch up with him. If both Mom and Dad are unable to exercise as frequently, and the stress of lifting and transferring from bed to wheelchair to couch is taking its toll, both parents may be at risk for falls, injury or illness. When Dad is focused on bringing Mom to the doctor several times a week, she is likely to ignore her own health needs and cancel her medical appointments.
When my grandmother cared for my grandfather, she only ate the food he didn't finish (that she had prepared for him). She denied herself essential nutrition because she was so devoted to his care. She lost weight. She was in frail health. She didn't sleep much for fear of missing something he needed. After he passed away, in addition to her deep grief, she also experienced a number of illnesses that may have been her body's way of catching up from what it had missed while she was caring for him.
Family caregiving is hard work, emotionally, physically, and mentally. When one spouse takes on the hard work of managing a household along with their loved one’s daily care needs—all the while dealing with the roller coaster of emotions this role brings—that spouse is at risk of burnout and even early death if self-care and support are not made a priority.
To give care, you must take care. To provide the best care, you must care for yourself in the best possible way.
The emotionally difficult aspects of caregiving take a toll on the family caregiver, often without them realizing it.
While many seniors are honored to care for their spouses, and that loyalty is undoubtedly inspiring, spousal caregiving is so much more than the daily tasks of bathing, dressing and meal prep (and sometimes, those daily tasks alone are challenging). Put yourself in a spousal caregiver’s shoes. You are watching the person you love suffer from an illness, injury or disease. You are no longer able to have conversations the way you did in the past. The woman who made dinner for your growing family can no longer feed herself.
Every day, spousal caregivers are grieving. They're grieving the losses their spouses are experiencing, but they're also grieving their losses: of friends and social connections, of a job or volunteer work they loved, of the life they once knew or the dreams they had for retirement.
Left unchecked, these intense feelings can lead to anger, resentment, depression and a range of other emotions. A spousal caregiver who feels inadequate to meet his spouse's needs may feel a sense of guilt, failure, frustration. A spousal caregiver whose spouse's personality has changed on account of dementia or another diagnosis may find himself struggling to feel love or compassion towards her partner. Fear of losing independence is a huge underlying concern. Disagreements between adult siblings about care can lead to complicated family dynamics, causing the caregiver and spouse pain, sadness and maybe even feelings of helplessness.
The house itself also tells the story of how caregiving has affected your parents. Keeping a perfect home is undoubtedly an unrealistic goal, especially when caregiving responsibilities take precedence. But maintaining a home is no small task, and when a spouse becomes a caregiver, that task becomes insurmountable.
Dad can't maintain the level of cleanliness he is used to if he's afraid to leave Mom alone in a room for more than five minutes. If Mom was the primary housekeeper, Dad might have a hard time keeping up with the laundry, dishes and cleaning while caring for Mom. Bills may pile up. Finances can quickly go off course. If a spouse not ordinarily responsible for meal prep is cooking on a few hours of sleep and a day of frustrating doctor's appointments, accidents are more likely to happen. If the spouse who needs care can no longer climb a ladder to replace a bulb, the spousal caregiver may try—and in doing so, entertains the risk of a fall or injury—which leaves both caregiver and care receiver without help.
Home care meets caregiving couples—and the families who love them—where they are. And by providing companionship, light housekeeping, transportation, meal prep or help with activities of daily living, they're not replacing the vital work of the spousal caregiver. They're complementing it and allowing it to go on for as long as possible. They're filling in the gaps. They're lightening a load of caregiving so they can work through grief as they care.
That said, always present the idea of home care support as a way for both parents to stay healthy and at home for as long as possible, affirming the value of the care they’re already providing and suggesting the benefits will go both ways—because they do.
For more information on why your elderly parent needs more help than a friend or family caregiver can provide, click here.
You provided assistance when I didn't know where to turn.
You provided assistance when I didn't know where to turn.