Here are five big “sore points” that undermine family caregiving — and what to do about them:
Sore point #1: Lack of privacy
Everyone in a caregiving family needs privacy — the freedom to exist in their own space.
Having physical privacy means having boundaries that let everyone in the house get away from 24/7 interactions. It’s especially challenging in small living spaces or when the live-in elder has dementia. The disinhibition (loss of social appropriateness) that can be part of a dementia like Alzheimer’s can lead a loved one to barge into bedrooms and bathrooms, for example.
Having mental privacy means being able to continue some version of long-established family time and traditions. While it’s important to weave a live-in guest into family life, this needs to be balanced against the risk of alienating kids and spouses who may miss old routines or come to feel ignored.
“The time and energy of caregiving, by necessity, must be taken away from other things, especially family,” says geriatric psychiatrist Ken Robbins of the University of Wisconsin-Madison, who counsels family caregivers. “This may be the biggest issue for caregivers.”
Lack of privacy: Solutions
Make necessary home improvements to allow the live-in elder to have his or her own space, not just for sleeping but also for living: a TV set and comfortable chair, a desk, opportunities to get out of the house. Avoid making a child share a room with an elder if you can. Explore whether a parent’s assets can be used to fund a modest addition to a caregiving adult child’s home, rationalized as a cheaper alternative than out-of-home care.
Establish household rules everyone agrees on for the use of the TV, the kitchen, and other possible points of conflict. Keep in mind, though, that in the case of dementia, rules become less realistic as the disease progresses.
Remain conscious of maintaining one-on-one time with other family members. Your live-in elder doesn’t always have to come first with you; use respite care or other relatives to supplement care.
Don’t put vacations, school or sports events, or other previous family activities on indefinite hold.
Use locks and a low-key response to help manage disinhibition; explain it to kids so they’re not frightened.
If boundary-intruding becomes overwhelming, talk to the doctor about making sure medications (like antianxiety drugs) or alcohol use aren’t contributing to the problem. If aggression is the problem and it can’t be managed with behavior modification or medication, realize this can be a deal-breaker for home care. Everyone in the house — including you — must be safe.
Sore point #2: Ignoring sleep deprivation
The common scenario: The live-in elder’s sleep-wake cycle gets mixed up. This disrupts the sleep of the caregiver, who’s already burning the candle at both ends to manage everyone’s needs. This lack of sleep then imperils the caregiver’s mental and physical health.
Sleep problems are often dismissed by caregivers for two common, misguided reasons, says geriatric psychiatrist Ken Robbins. First, they assume that poor sleep is part of aging or of dementia, and that nothing can be done about it. Second, they fear that addressing sleep problems is “selfish,” only for their benefit.
In fact, resolving runaway sleep problems helps everyone. The elder whose sleep issues are addressed will experience better mood, more energy, and less pain; sleep is closely connected with all three conditions. And the caregiver who makes his or her own sleep a priority will be better able to cope with caregiving stresses and will have more energy for every part of life.
Ignoring sleep deprivation: Solutions
First make sure your loved one’s basic “sleep hygiene” is in order: No stimulating beverages or activity late in the day. A quiet, dark room. Proper clothing for sleep (elders sometimes nod off in their day clothes). No TV or electronics used in the bedroom at night. Use of a proper, comfortable bed, not a lounge chair. (An elder may “turn in” but never actually get in bed.)
Next, make sure your own sleep habits are similarly healthy. That 5 p.m. coffee crutch or after-dinner drink? Not a good idea.
Run a medication review with a doctor to make sure no meds are interfering with sleep. Benzodiazepines used for depression and as short-term sleep aids can actually prevent sleep, Robbins says; these include drugs such as ProSom, Restoril, Xanax, and Valium.
If you’ve done everything you can to create a healthy sleep environment, discuss sleep issues with your loved one’s doctor. A mixed-up sleep-wake cycle is not a normal part of aging. It is a feature of dementia (because brain changes can mess up circadian rhythms), but it can often be remedied by a good household routine and by addressing the person’s fears to reduce anxiety. At last resort, medications may be prescribed to improve sleep health.
Sore point #3: Lone-soldier syndrome
Caregivers too often fall into “lone-soldier” mode thinking without even realizing it. Feeling responsible for a loved one, they assume the full burden, marching forward without regard to their own emotional needs. Eventual result: one badly wounded soldier who’s not much good to anyone.
In reality, it takes a whole army to manage caregiving effectively. Failing to have emotional outlets where you can vent and “be yourself,” and failing to let others share the practical burdens, results in a surefire recipe for falling down — or giving up.
Lone-soldier syndrome: Solutions
Let go of old ideas that asking for help is a sign of weakness. If ever you needed other people in your life, it’s now.
Join a caregiver support group. “I push families to join a support group,” says Ken Robbins. “It’s really hard just to talk to friends. They get tired of listening to you or have little to offer besides a pat on the back.” Groups offer a level of emotional support and group-think problem solving and idea sharing that’s different from what a mental health counselor provides in one-on-one sessions. To find a group, ask your doctor or your local Area Agency on Aging, or try an online group.
See a counselor if you’re experiencing signs of depression. It’s no stigma to get help; caregivers (and especially dementia caregivers) are in fact at higher risk for depression.
Arrange monthly or, ideally, weekly respite breaks.
Sore point #4: Not anticipating what’s coming next
Like firefighters, caregivers tend to stomp out one flaring crisis after another. Unfortunately, it’s an exhausting way to live and fuels the stressful feeling that your life is at the mercy of an unpredictable force in your home.
“Feeling a lack of control comes in part from a lack of knowledge about what to expect,” geriatric psychiatrist Ken Robbins says. “Especially with dementia, being able to step back and see a bigger picture can help you make appropriate plans and then feel more on top of things.”
Not anticipating: Solutions
Make contingency plans. “Live in the moment” is good advice to help you manage stress, but don’t do so at the expense of a little advance planning. Once a week, devote an hour to focusing on “if this, then this” scenarios. This type of thinking helps you at least begin the process of considering where you might find more help, what kind of home modifications would help and how you’d get them done, alternative living situations, and so on.
Make lists of your options, or of places and people you can contact to solve potential problems common to your situation.
Learn as much as you can about your loved one’s condition(s) and how it/they typically progress.Caregivers are sometimes reluctant to “read too far ahead” for fear they can’t relate to later disease stages. They’re also prey to fear of “jinxing” — worrying that if they think about something, it might come true. Diseases are realities, not wishes. Ask your loved one’s doctor to be candid about the prognosis and course of the disease, read info online, ask others who’ve been there.
If your loved one has dementia, understand the various stages, where your loved one likely is, and what to do next.
Consider a support group. These help caregivers visualize future problems, as they’re expressed by other group members.
Sore point #5: Overwhelming care tasks
Perhaps the most difficult home-care deal-breakers are practical matters that go beyond the caregiver’s ability to manage. Chief among these: incontinence, heavy lifting, wandering behaviors in someone with dementia. Both urinary incontinence and fecal incontinence, for example, are among leading causes of nursing-home placement. A small or frail wife of a big man who needs help is another tough scenario.
“These situations often do end up where care has to be in a facility — and that may be a good solution for everyone,” psychiatrist Ken Robbins says. “Sometimes, though, there’s an easy answer that allows home care to continue.”
Overwhelming care tasks: Solutions
Be sure there’s been a through physical exam to see if a problem, such as incontinence, is fixable. Adult diapers and toileting schedules, or a change in medications, may make incontinence more manageable, for example. Frequent falls and problems getting up are other physiological problems that may be treatable.
For behavioral issues such as wandering, learn the basic ways to address the problem (for example: floor alarms, locks, reducing anxiety) and see if they make a difference.
Explore whether bringing in more help, such as personal care assistants or nurse aides, can buy time and get you through difficult challenges (such as bathing and dressing).
Make sure you’re not trying to solve the problem alone. Brainstorm possible solutions with other family members, a social worker or geriatric care manager, doctors, and friends — including virtual ones — who may have experienced similar issues.
If you’ve explored every option and things still aren’t working, ask yourself if you’re resisting out-of- home placement because of guilt. “Step back,” Robbins says. “If a problem is dangerous to either one of you, ask yourself why you’re being so persistent about not making a change.” He often finds that when caregivers are no longer frustrated and angry with their loved ones all the time, they’re better able to spend emotional energy enjoying one another again.