Sometimes caring for someone with dementia takes a toll on the caregiver and their family. We asked a psychologist how to tell if assisted living is right for your parent or loved one.
More than 15 million Americans devote time and energy to caring for a loved one with Alzheimer’s disease or other dementia, according to the Alzheimer’s Association, but sometimes the cost of caregiving becomes too high. Caregivers find themselves unable to bear the burden of providing home health care without suffering from stress and illness themselves. At that point, it may be time to consider whether to move a loved one into assisted living if their health needs become too much to handle at home.
Signs that Your Loved One May Need Assisted Living
Moving a family member into residential care is never an easy decision. However, there are some telltale signs that caregivers can look for in order to recognize when it’s time for assisted living:
- Wandering: In later stages of dementia, the risk posed by wandering becomes much greater, notes Rita Vasquez, M.A., an MFTI Clinician at Quail Lakes Counseling Center in Stockton, California. “They can wander even if you just take the time to go to the bathroom,” she says, and the probability of falls and injuries increases.
- Sundowning: “Sundowner syndrome” — very agitated behavior that becomes more pronounced later in the day — is a common characteristic of those with Alzheimer’s. Vasquez says that this can take a heavy toll on caregivers, and when it begins to severely disrupt family routines, this may be a sign that the caregiving burden is too hard to handle.
- Aggression: Verbal, physical, and even sexual aggression frequently happen in those with dementia, and caregivers and other family members may suffer or begin to feel resentful. “I tell people when they’re getting to that state, it’s time to start considering placement,” says Vasquez.
- Home safety issues: Ask yourself honest questions about your senior family member’s health and your own abilities to care for them. Is the person with dementia becoming unsafe in their current home?
- Escalating care needs: Is the health of the person with dementia or my health as a caregiver at risk? Are the person’s care needs beyond my physical abilities? If you’re answering yes to those questions, it might be time to have that tough family conversation.
- Caregiver stress: Stress and other caregiver symptoms can be just as telling a sign as the dementia behaviors described above.
Caregiver Stress May Indicate a Need for Help
An article in the New York Times discussed the psychological costs of caregiving and of making difficult care decisions, which some professionals are likening to the effects of post-traumatic stress disorder. Caregivers may experience symptoms like “intrusive thoughts, disabling anxiety, hyper-vigilance, avoidance behaviors,” and more. Rita Vasquez attributes these symptoms not only to the pressures of caring for someone with dementia, but also to the disruptions to normal sleep and eating patterns that result when one is spending so much time on caregiving: “When the brain is always on alert, many things are going to happen — you’re not going to eat well, your nutrition is going to go down,” and physical health suffers. The emotional, mental and physical toll of caregiving can be particularly pronounced for spouses of those who need care. In one of the families Vasquez works with, the wife and primary caregiver is 80 years old. “She’s taking care of her 85-year-old husband and it’s draining her,” Vasquez says. “When he fell recently, she couldn’t pick him up and had to call the paramedics.” In cases like this, it might be clear immediately when the demands of care become too great. In other cases, it might not be so obvious. However, if you are feeling isolated and alone, or if you begin to feel resentful of your loved one, it might be time to examine the source of those feelings, says Vasquez. “Sleep deprivation, anger, resentment, all those things will become part of what happens to a caregiver,” she says. “And, of course, the guilt, when you think, ‘I’m not doing enough.’” When that happens, it’s important to recognize how much you’ve been giving to your loved one, and perhaps tell yourself, “Okay, I’m not living a life for myself anymore, I’m living for that person.”
My Loved One Needs More Help Than I Can Give — What Now?
Deciding between assisted living vs in-home care is never easy, and caregiver guilt and grief are common reactions to moving seniors out of their homes. As Rita Vasquez puts it, “We lose our family member twice: once to the disease, and again when they pass.” Caregivers may wonder if they could or should have done more; they may feel separation anxiety in moving their loved one to another location. If family dynamics are difficult — if, for instance, a caregiver caring for a parent had an unhappy childhood — that may further complicate the decision process. This is why planning ahead is so important: “If you know your family member is in the early stages of [illness], first and foremost you want to get all your paperwork together,” Vasquez says. “It’s in our culture that we don’t want to talk about those things,” but before dementia begins to affect your loved one’s cognitive health, it’s important to have someone help them collect the right paperwork and make those critical decisions, whether it’s a friend, family member, or physician. Planning ahead, getting informed, and involving the appropriate persons in the decision will ultimately help ease the process when it’s time to move your loved one into care. The best way to be there for them, Vasquez says, is to know that they are in the proper place for getting the care that they need. Visit communities before choosing one, and make sure they have activities and medical support appropriate to dementia patients. Ultimately, she says, try to remember that if you’ve done that research “They are going to thrive wherever you send them.”
Caring for the Caregiver
As a caregiver, it can be difficult enough to find time to care for your senior loved one, let alone yourself — even if your family member is in residential care. But staying healthy is one of the best things you can do to provide the support your loved one needs. Arranging a short stint in respite care is one way to get some time to rest and recuperate, especially if you are caring for someone at home. Taking care of your mental health is also critical, and there are many benefits to seeking out a circle of support to bolster you when times are difficult. Counseling, therapy, and support groups all exist to help family members going through transitions relating to Alzheimer’s and dementia. Check with the facility that your loved one is moving to, suggests Vasquez, who has led caregiver support groups and coordinated family services at a local residential care facility. Many care homes, she says, offer support groups and other resources for families. These resources can help you come to terms with the idea that sometimes the best decision for the health and happiness of both parties is putting your loved one into care. “We have to know that as a human being, we can only do so much without taxing our health,” says Vasquez.
Reprinted from A Place for Mom