Coming Home: When Adult Survivors Depend on Their Parents for Care
Whether we’ve had good parents or bad parents, most children are glad to move away from home. Returning to live with our parents is something most adults avoid at all costs. But a stroke can change that.
When strokes happen to young adults, sometimes their only recourse is to enlist their parents as caregivers. While most parents willingly take on this role out of love for their children, it does not mean that there is no sacrifice involved. We wanted to get some insight into this circumstance, so we talked to Monique Tremaine, Ph.D., who has encountered this situation many times as the head of neuropsychology at Kessler Rehabilitation Institute in West Orange, New Jersey.
She has worked with a number of young survivors who had to move in with their parents and acknowledged that there are all sorts of strains in this situation. “There are questions of independence and having to give up apartments and move back home,” Tremaine said. “It can be quite a strain on the survivor as well as the parents who are trying to accommodate the adult child.”
Coping with these strains is complicated by the needs of the survivor: Are home modifications needed? How much assistance does the survivor need? Are there adequate resources to handle what is needed? Are there cognitive or behavioral challenges? What is the health status of the parent(s)? Do they have medical issues of their own? Can the family afford to bring in extra help?
Clearly there are a lot of potential stressors, all of which can be exacerbated by the nature of the parent-child relationship pre-stroke. “Oftentimes a parent will see an exaggeration of some of the problems that were there before and won’t realize that that’s part of an injury, so that adds emotional stress,” Tremaine said. She suggests that parents join a support group or seek psychotherapy to help them cope with those changes. “A family that has good coping skills prior to an injury is the family who’s going to do better and need less intervention,” she said.
Parent vs. Caregiver
The roles of parent and caregiver are different, though to some extent this depends on the age of the adult child. In the 18-25 age range, the parent and caregiver roles may be closer because independence may not be well established. “Parents will struggle with how much independence is okay,” Tremaine said. “Do you allow the adult to go out and interact with their peer group? There are a lot of questions around things like alcohol, driving and sexuality. In that age range those things become quite a concern.”
In the 25-35 age range, an adult-to-adult relationship has likely been established with the survivor as has their independence. “The question then becomes one of how much privacy versus independence are you going to be able to give based on the survivor’s deficits,” Tremaine said. What level of care is required?
For offspring above age 35, the survivor’s needs have to be considered in relation to a parent’s health because they will be older. Do the parents need additional care? “So I would say that the line between caregiver and parent really becomes thin depending on the situation and the need,” Tremaine said. For instance, some people with stroke can be impulsive or unaware of the environment, more supervision may be required. The defining line between caregiver and parent can become quite blurred.
In particular if there is bad news to be delivered, e.g. ‘you won’t be able to drive,’ she suggests letting the therapists do that. That way it’s a medical professional limiting the survivor’s independence and not a parent. “Oftentimes healthcare providers can absorb a lot of those independence issues by phrasing it in terms of medical orders and that can relieve some of the pressure from the parent,” Tremaine said. The further the stroke family is from access to the medical community, the more responsibility goes to the parent.
Depending on the severity of the stroke, parents may struggle with the recovery process. Tremaine says she commonly sees one of two responses:
First is the overprotective family that defaults to doing too much and jeopardizes a survivor’s ultimate independence. Or they may do too much because it’s easier and quicker than letting the survivor struggle with activities of daily living like getting dressed or cooking.
Second, there is the family that really doesn’t understand the survivor’s deficits and doesn’t set the kind of parameters he or she needs in order to make progress.
Either case can be complicated by the fact that survivors progress and improve, so restrictions that were valid a month ago are no longer valid. Not adjusting can limit the survivor’s autonomy.
Parents do well to remember that whatever their child’s deficits, their relationship is still one of adult to adult. “For instance, avoid words like ‘supervision,’” Tremaine said. No adult child wants to be supervised.
Parents need to be aware that language and tone can be condescending. This is particularly true if there are cognitive or speech deficits that require the caregiver to slow down their speech. “Don’t forget, you are dealing with an adult,” Tremaine said. “And don’t give them a child’s tasks in an effort to improve their cognitive functioning.”
The survivor may show no concern for their parents’ feelings. The part of the brain that processes that information may be injured. As far as their own feelings go, caregivers may need to absorb the stress of the situation and not express their frustrations to the survivor. But bottling up frustration and other negative emotions isn’t healthy for the caregiver either. Turn to a close friend, counselor, clergy or members of a stroke support group so you can get things off your chest without adding to the challenges of caring for an adult child survivor.
Monique Tremaine, Ph.D.
“It’s not that different from actually raising a child,” Tremaine said. “There may be a lack of appreciation of what the parents are going through and that would be because of the stroke itself. This kind of injury may result in a lack of ability to perceive someone else’s perspective. And that can be a real challenge for caregivers in general and parents in particular.”
Self-doubt, guilt and blame
Family caregiving is fraught with self-doubt, and that may be amplified by the opinions and advice of others, especially family. “At the end of the day, you know your child better than anyone so trust your intuition, unless a professional is telling you something very different,” Tremaine said.
The more guilt that’s layered on this situation, the less effective a caregiver is going to be. Guilt and anxiety are crippling and often cause bad behavior. “Bad parenting has a lot to do with guilt and anxiety,” Tremaine said and recommends counseling for parents to help sort through the doubts and self-blame and acknowledge that they’re doing the best that they can.
If the stroke was caused by the survivor’s behavior — alcoholism, drug abuse — the caregiver may blame the child. This emotion will contaminate the relationship and get in the way. This is another place counseling and support groups can help. Your negative feelings about the present are not going to change what’s happened. Making someone feel guilty is not a healthy way to interact and won’t improve the situation.
Every stroke and every family are different, but Tremaine identifies three things — a good amount of intuition, very good support and the ability to access resources — that help create a good outcome.
“It’s important that families realize this isn’t a situation that most people can manage on their own,” Tremaine said. “There are going to be problems. And sometimes those problems are only going to be solved through some kind of outside help and intervention. Being able to access that help is very important.”
Many parents take on the responsibility of caregiving because they feel no one else can do it. While it is good hearted, it may not be a good plan. Here are some things to consider:
• Are you physically capable of doing what’s required? Doing transfers and other physical care puts a caregiver at risk for injury.
• Are you cognitively capable of managing another person’s life? Caregiving requires scheduling and medication management and handling myriad details. How’s your memory, because it will be tested.
• Are you emotionally capable of dealing with a disabled person? Depending on your history with the child, it is possible that you are not the right solution.
These are hard questions that require realistic answers. Tremaine suggests enlisting the help of a psychologist or case manager to investigate these issues.