“A list of 800 phone numbers and three booklets didn’t help me in the least. I needed someone to actually talk to me—to stay with me—to help me figure out what to do as everything was closing in around me.”
This comment could have come from any of the 90 million family caregivers in the U.S., but it comes from Anne, who lives in Maryland. Anne’s parents, who are in their mid-80s, moved to Florida more six years ago. Anne’s mother, Jane, is the primary caregiver for Anne’s father, who suffered a stroke and subsequent mild dementia. Because Anne is also caregiver for her own husband, she is well informed and tries to anticipate problems. Anne located a geriatric care manager in Florida, and asked for help in reviewing the parents’ paperwork. After looking over the documents, the care manager helped arrange a family meeting to consider changing legal needs. Because of the planned meeting, Anne and her spouse, her brother and his wife were all in Florida with the parents. Then the crisis struck.
“My father fell and broke his hip, and had to be hospitalized. Because of anesthesia and other complications, he became much more argumentative, his incontinence worsened, and the dementia seemed to be increasing. We knew my Mother couldn’t care for him by herself any longer, and now we had to find a place where he could be safe and she could be nearby.”
Anne turned to the geriatric care manager for care counseling and immediate help to weather the crisis. He gave her a list of possible placements, and was able to set up a meeting with an eldercare attorney within 24 hours, so that adjustments could be made to paperwork right away. “For this, he has endeared himself to me forever,” says Anne.
“I visited some nursing homes with my mother. Some were my worst nightmare, but others looked okay. We really couldn’t tell.” Anne then contacted Connie, a care counselor with AdultCare, a subsidiary of Fortis Long Term Care. Adultcare offers care advice for Fortis employees, Fortis policyholders, and their families.
“Connie got the inspection ratings for these nursing homes from government reviews, and helped me figure how the nursing homes ranked on the most important variables. This really helped us make the choice.”
The kind of help Anne needed as a family caregiver is known as care advisory service, or care counseling. Care counseling is the more common term, but connotes therapy to some people. Whatever it is called, it is more than simply providing information. It means real support for both the practical and the personal elements of a crisis or transition, or for a time when the caregiver just can’t cope.
Dealing with the constant demands of caregiving is wearying for anyone, but in times of crisis or transition, special help is needed. As Connie points out, “The impact of caregiving crosses all diagnoses, and all ages. It is the caregiving itself that has the impact. But instead of looking at caregiving, we usually focus on the disease. If the person you care for has a disease that receives a lot of attention, there may be help. But people caring for someone who is just bedbound also face a deeply stressful situation, with no help.” Connie frequently encounters caregivers who are so stressed that they are extremely vulnerable, much like people suffering from chronic stress syndrome. But it is vital for caregivers to be healthy, to continue to help the person they care for.
This is where the care advisor/care counselor is most valuable, helping the caregiver to rally, manage a crisis or transition, and keep going. A good care advisor combines the capabilities of an expert with the sympathetic ear of a trained listener. Because they are outside the family dynamics, they can give objective advice. Because they are knowledgeable and have a base of resources, they can save time and energy. Because they are empathetic, they can assure the caregiver that she or he is not alone.
Care counseling is increasingly available, and it comes from many sources. These include local non-profits agencies, private firms, corporate employers, faith-based groups and associations working with a particular disease or condition. And as caregivers speak out for more “real help for real people,” other groups are hearing the call and responding.
Crises and transitions can take many forms and occur at any time. Robyn had cared for her daughter, who has a degenerative brain disease and who requires ventilator support, for many years, much of the time as a single parent. Last fall she began to realize she was just not able to cope effectively, and asked for help.
Since her daughter’s birth, the Ventilator-Assisted Children Home Program (VACHP) has helped Robyn. Funded by the Commonwealth of Pennsylvania, the program offers care coordination and family advocacy. The VACHP points out that it sees its job as caring for the whole family. “Unless you take care of the whole family, you are missing the boat. If the mom has clinical depression and we don’t get her therapy, she can’t help the child.”
Robyn’s caregiving team recognized that what she needed was some temporary respite care, so that she could re-energize. The team swung into action to assure Robyn that this was the best choice, and found a safe placement for the daughter. Says VACHP, “Her need is right now, and we had to make it happen.”
Sometimes a crisis is not medical or emotional, but financial. Senior citizens in Tulsa, Oklahoma can find help at the Anne and Henry Zarrow Center for Caregiver Support. The Center’s public statement describes the Center in this way: “Family members, friends and neighbors who provide non-professional care for an older loved one may feel frustrated, alone and unsure of where to go for assistance. Now there is a place to turn.”
One care advisor at the Zarrow Center explains her job as immediate and concrete. “In a crisis, our first priority is to find a response that can stabilize the situation. The problem might be that no one has paid the bills, because no one had time to do it or there was no money, and suddenly the electricity is going to be turned off. After we get the electricity udder control, we keep working. Sometimes the most important part is giving people a chance to express their feelings and experiences, to talk with someone who is outside the situation, who appreciates the difficult task they are doing."
Care advisory help often comes from professionals who work in connection with a specific disease or condition. Rebecca's husband has multiple sclerosis, and she has been his caregiver for 15 years. Despite all her experience and knowledge, she found herself exhausted and cranky last year. “I wasn’t sleeping well because Richard was waking up several times a night and needed to use the urinal. I had to get it, help position it, remove it and them try to get myself back to sleep, while dealing with my own nocturnal bladder schedule. I called a care advisor who commiserated with me and assured me that this was a serious issue. She suggested several things—taking my calcium pills before bed, keeping a diary to see if there was a pattern, and calling her back with a report in a few days. Just knowing she was there and help me was calming and beneficial, plus the fact that she helped me deal with a problem in a constructive way.”
Another gift of care advisors is discerning what type of information a caregiver needs, and how much information is “just right.” For example, when Nancy arrived at the hospital to take her 86 year old mother home after a bronchial infection and pneumonia, the hospital discharge team loaded Nancy up with prescriptions, directions, caution warnings, and lists of therapists and phone numbers of health providers she might need to call. Nancy was preoccupied with worrying about getting her mother out of the car at home and how she was going to cope with even more disability, and because of her anxiety she could not really hear and understand what the discharge team was telling her. A care counselor intervened to reframe the situation, helping Nancy by providing just the information necessary for the next steps, and then staying in touch to offer more details when Nancy was ready.
Caregivers immediately recognize the importance of care advisory service, but it can be hard to find this kind of help. Probably the best place to start a search is by checking with local agencies serving the elderly. Because the aging population is increasing so rapidly and their adult children are providing most of the care, care advising is most developed in this specialty. Geriatric care managers have a professional association, and have established certification requirements that not only guide their work, but also present a certification model for other specialties. Given the complexity of caring for the elderly, geriatric care managers may be able to help with a problem confronting a caregiver for a younger person, or may have referral lists for many conditions or types of problems. Family services agencies in many communities maintain lists of professionals and services. For families faced with a specific disease or condition, the association committed to that disease may offer care advice. Or caregivers can be a catalyst for putting care advice into place. The National Capital Chapter of the Multiple Sclerosis Society has an extensive set of caregiver support options, because the members in that area are active in calling for help and finding ways to support the local chapter.