On different occasions, my family has hired professionals to help care for my mom. Some people seem to thrive in the job and others just didn’t impress us. To get a better picture of who enters the caregiving field and understand why some succeed, I’ve been interviewing people involved in the care industry.
Nicole W. is a 27-year-old who began her journey in a personal care home with a relatively small number of beds. Given the vast differences between facilities, this was probably a good place for her to start. Before getting the job, Nicole had completed a course to become a Certified Nursing Assistant (CNA). This is a credential to ask about when hiring a caregiver through a service — or if you are checking out an adult day program. Companies that hire CNA’s as caregivers are offering you more than a “baby-sitter.”
As any family caregiver knows, formal training by itself doesn’t prepare people for the trials of working with dementia patients. Nicole felt that being on the job was like a second phase of training that revealed the mental challenges of the work. Fortunately, she started off in a setting that provided patients with a lot of stimulating activities. The facility was also clean and well-organized. From the beginning, she felt like her “work made a real difference for people.” Unfortunately, she was also faced with the tough reality of many jobs in the caregiving industry: the pay was relatively low and they did not give her enough hours to earn a decent salary. So she moved to a new site where she now assists with skilled nursing patients.
As part of the team in a hospital-based facility, she now has duties focused around helping people with the physical impairments brought on by their disease. The toughest issue in her current job is one that distresses many family caregivers: incontinence. There are lots of theories about how to support people as they lose control of their bladder and bowel functions. But in any facility, not all staff members use the same techniques. Once caregivers take away patients’ responsibility for managing their bathroom needs, those with dementia quickly forget what they are supposed to do. If you are researching care options with different providers, make sure to ask about their strategy for dealing with incontinence. Family caregivers know it can be a HUGE, daily challenge.
Nicole believes that as these problems arise, good caregivers must make a deeper emotional journey. At first it was very hard for her to keep from crying when patients would beg repeatedly for things she couldn’t provide. Many cried out for their mothers, their families, their homes — people and places long erased by death or change.Her advice to those newly faced with these situations is to develop a deep reservoir of patience. Not everyone can stay calm while listening to an endless refrain of dementia questions. On our best days it can still be hard to respond with kindness to the 25th repetition of, “Where is my hat?” But Nicole noted that even if you are answering them for the 25th time, a dementia patient thinks each of your responses is your first. She observed that “the caregiver must change their mindset, because the patients can’t change theirs.” Nicole also emphasizes the importance of maintaining your own physical and mental health. She recommends yoga because of its holistic health benefits and she suggests finding a hobby or pastime that you love — because you need to keep regenerating yourself if you want to provide compassionate care.
Members of modern families are often separated by geography. When a parent’s dementia reaches the crisis point, choosing a residential facility can be very hard. It takes cooperation and research to find a site that offers quality care and shared geographic access.
My friend Rob and his siblings have moved their mother three times. Though the moves were necessary to ensure her care and safety, his mom resisted change. The first stop was an assisted living facility in Florida , her long-time state of residence. Her children were spread across the U.S., but she wanted to stay in Florida so they found a site where staff members monitored her safety and well-being on a daily basis. As her condition declined, it become harder for her children to oversee her care from a distance. Rob’s mom then moved to a second Florida facility with more supportive services. When her dementia advanced further, Rob finally moved her to Pennsylvania. After three moves, his family learned a lot about choosing facilities.
When deciding between providers, Rob’s family reviewed incident reports from each facility under consideration. Sites with many incidents may have serious problems with the delivery of care. Anyone can check the incident records of individual nursing homes by going to the Member of the Family website. Once there, you can click on your state, and compare the number of serious incidents reported at each facility. You can also determine whether a facility has been place on the National Watch list. Homes on the National Watch List have had recent survey violations or substantiated complaints of actual harm or immediate jeopardy to residents in their care.
Ultimately, Rob’s family selected a care facility that was close to Rob’s house. This proximity allows him to check on her every day. His siblings fly in periodically to do the same. The site had some violations but Rob felt they were due to the building’s large size. Residents are spread over 24 floors with various levels of care. He believed that choosing a nursing home near his house would allow him to make more visits to monitor his mom’s care. When I asked him whether he saw much variation in quality at her three care providers, Rob said, “There are problems in all these institutions. But being present as an advocate makes a huge difference.” He thinks his mom is getting better care in Pennsylvania, but that is “only because I’m such an active participant in her care.” In his experience, administrators appreciate family involvement as long as issues are presented in a calm, professional way. If he must discuss problems with them, he writes everything down and gives his letter to an administrator to make a record of the matter. He also reminded me that many people go in and out of a dementia patient’s room and families should never leave valuables there. His family learned this lesson the hard way when his father’s wedding band disappeared from his mom’s room.
Rob also suggests that families consider the type of care a loved one will need in the long run. At his mother’s current facility, she has to run out of money and qualify for Medicaid before she can be placed in a skilled nursing unit. Because there is a wait list for those Medicaid beds, she will get progressive care until a bed becomes available. If your loved one moves to an assisted living facility that has no skilled nursing, later on it may be tough to secure a bed at another site. All things considered, if you are considering a move for your loved one, planning ahead ought to come first.