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How to Tell When a Household Member Is Impeding Your Loved One's Care

"Our interventions are often for a limited time, so it ultimately falls on the family to make sure the home environment is working. We're always happy and relieved when a family reaches out to us and asks how they can help."
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Series Part 2 Focus: provide guidance and tips to help family members and patients recognize and address issues behind a hostile home environment that could be jeopardizing the safety and well-being of the patient.

When visiting nurse Linda Miller* and home health aide Karen Johnson* took on the care of Thomas*, a 40-year-old with spina bifida, it was clear that his living environment had serious problems. Thomas's bedroom was also home to his two cats, whose litter box was rarely if ever changed. As a result, the cats were tracking their waste all over the room, including onto his bed. Worse still, Thomas's bed had no sheets, forcing him to lie directly on the mattress. His room was also filled with boxes, making it impossible to properly clean.

As bad as these issues were, there was an even bigger problem lurking in the background as well: Thomas's live-in companion, Sam. Twenty years older than Thomas, Sam had struck up a friendship with him some several years ago. When Thomas's mother passed away, Sam moved in, taking the extra bedroom for his own. Though he tended to many of Thomas's immediate needs, Sam refused to do anything about the filth and clutter in Thomas's room. The cleanliness issue was particularly urgent because Thomas, who was bed-bound, had developed an open pressure ulcer. "My manager and I sat down with both of them and explained that this wasn't just us asking, but that the New York City health department required us to operate in sanitary conditions," notes Linda. "If they wanted us to continue caring for Thomas, they had to address these problems."

Home health care professionals like Linda and Karen's team from Visiting Nurse Service of New York are accustomed to addressing problems like dirt, clutter or lack of nutritious food in the home. But when the troublesome home environment extends to a live-in relative or friend who is actively interfering with home cleanup or other aspects of the client's care, home health aides and other caregivers may need to enlist other family members or even local authorities to help get things on track. "This type of problem is more common than you might think -- when someone in the patient's home impedes the ability of the home care team to carry out their plan of care," said Linda.

For this reason, it's important to be on the alert if you have a loved one who is receiving care at home and may not be getting full cooperation from other household members. Staying in regular touch with your loved one's primary care physician and their home healthcare agency is a good start. The home care case manager can give you regular updates on the patient's health status and any issues that may arise on the home front. Similarly, you should notify the home care team if you think something is amiss. You should also make sure you're listed as your loved one's emergency contact, so the home care agency will call you directly if any serious problem arises.

"I recommend talking periodically with the home health aide as well," says Linda. "Because HHAs spend the most time in their patients' homes, they're the eyes and ears." If home environment problems linger, including issues around adhering to medication when the home care team is not present, or if there is any personal friction between the home health caregivers and others in the patient's home--including the dismissal of a home caregiver for no clear reason--these are all signals for other family members to get more involved.

Linda also recommends the patient's adult children make regular checkup visits to the patient's home, or ask another relative, friend or neighbor to do so for them. "If the other person living with your loved one is incommunicative or unresponsive to your requests or refuses to let you visit, those are clear warning signs," she says. "When you do visit, any signs of neglect should raise a red flag. That includes dishes left in the sink, trash that hasn't been taken out, pet waste that hasn't been cleaned up, dirty bed sheets, pervasive odors and excess clutter." Insufficient or spoiled food in the cabinets and refrigerator are other indications that proper attention is not being paid to the patient's daily needs.

"You should also look closely at your loved one," adds Linda. "If he or she looks or smells terrible, then something is wrong." She advises looking for signs of dehydration or weight loss, as well as unexplained bruises or other skin markings that could indicate a fall or other accident or even physical abuse. Linda recalls assessing a patient with dementia after the patient's home health aide discovered abrasions on her chest and neck. "After examining her, I called the patient's son, who admitted he'd had a fight with his mother and had choked her. I told him, 'You realize I have to call the police now.'" Linda also contacted the local office of New York City's Adult Protective Services (APS) to tell them what happened. The National Adult Protective Services Association is there to support individuals and families throughout the country.

When someone in the household is contributing to a problematic home environment, the first step is usually to arrange for other family members and the home caregiving team to sit down with the household member (and the patient, where appropriate) and explain what the issues are and what needs to be done to address them. If the household member is unreceptive or hostile, then it may be necessary to contact APS or a similar agency. Anyone can make an APS referral for a person at risk, including a home care agency or a relative or friend. The agency will investigate promptly, and will provide any follow-up services needed to remove the risk and help the affected person live safely and independently.

In the case of Thomas and Sam, Linda and Karen's home care team was eventually able to resolve the problem without calling APS. Despite resistance from Sam, they managed to convince him of the need to change the litter box daily and let Karen put clean sheets on the bed and tidy and sweep the room. The last battle involved allowing a wound physician into the home to treat Thomas's wound -- a role that Sam wanted to take on himself, but finally relented on. They also worked to schedule home visits when Sam was out of the house, to minimize any uncomfortable interactions. "It's not that Sam wasn't trying to take care of Thomas," adds Linda. "The issue was that he wanted total control, which was making it impossible for proper care to be given."

In Thomas's situation, there were no other family members around to help rein Sam in and improve Thomas's home environment -- but if there had been, Linda would have welcomed their input. "We want the family to be involved," she says. "Our interventions are often for a limited time, so it ultimately falls on the family to make sure the home environment is working. We're always happy and relieved when a family reaches out to us and asks how they can help."

*Names changed to protect patient's privacy