In a prior article, we discussed how to support a patient’s family or friends forced into a sudden and unexpected caregiving role due to illness or injury. Supporting these “surprise” caregivers requires a focus on providing the details of the immediate condition and being clear about what assistance the patient will need to recover. Sometimes, both patient and caregiver will take some time to come to terms with a new normal. But not all caregivers are pressed into service unexpectedly.
Patients with chronic or progressively debilitating conditions also require caregiver support. Their caregivers will need your assistance to be ready as the patient’s condition changes over time.
This weekend, telephone traffic will spike across the country as children of all ages reach out to their mothers to express thanks for delivering them safely into the world. 2014 marks the 100thanniversary of Woodrow Wilson’s establishment of Mother’s Day as a national holiday. A few years earlier, West Virginia native Anna Jarvis, who herself was never a mother, had initiated the idea of a holiday to honor the dedication and sacrifice of mothers around the world. The day provides a great opportunity to consider not only the care provided by one’s mother, but also the care that she may require in the future. Encourage your patients to start these conversations – for themselves or for their own parents or other loved ones who may require future care.
Though such a conversation may seem a “downer” on a day of celebration, ensuring that a trusted family member or friend has been designated as health care agent will provide peace of mind when the answers are urgently needed. Plus, it can be a catalyst to talking more comfortably about topics that are frequently avoided.
Here is one family’s recent experience:
Rob, Alex and Andrew enjoyed a middle-class upbringing in the Midwest. After college, they moved to the Northeast. Their parents, Frank and Regina, worked into their early sixties before starting to experience some heath problems. As was the case for many baby boomers, Frank and Regina both started smoking at a young age. Regina had quit smoking in the ’80s, but Frank continued to smoke at least a pack of cigarettes daily. During a holiday gathering prior to their parents’ retirement, the “boys” noticed that Regina seemed to be mixing up their names more than usual. When they asked Frank if their mother had been having any problems, he brushed off their concerns as just normal “old person stuff” that he too was experiencing.
A year and a half later, Alex visited his parents while on a business trip. Regina’s memory lapses seemed to Alex to be starkly worse, but Frank did not seem concerned. Alex called his brothers to share his concerns. Rob suggested that since Frank lived with her every day, he was better situated to know what was going on. Andrew, who’d recently lost his job while also welcoming a second child to his own family, said that he was concerned if Alex was concerned, but was not presently able to do anything about it. Alex also noticed that Frank’s always-active woodworking shop in the garage appeared to be abandoned. His father said it was getting too dusty, and that he’d start coughing and be unable to stop if he got sawdust in his lungs.
Regina gave Alex an update on some friends of the family, reporting that a couple with whom they’d spent much of their leisure time, Tom and Helen, had moved to Florida to be nearer to their own children due to a cardiovascular illness facing their friend Tom. She jokingly suggested that Alex just take his parents home with him. That way, she said, they’d be closer to their grandchildren. His mother seemed like her old self during the conversation, and Alex thought maybe he had overreacted to what he perceived as memory impairment.
Three months later, Frank suffered a minor stroke, and was hospitalized for two weeks. The family discovered that Frank had only been pretending to visit the doctor for several years after being told that his smoking, and not the dust in his wood shop, was the likely cause of his frequent coughing. His doctor had suggested a CT scan to screen for lung cancer, which Frank had declined. Now, his family pressed for the procedure, which revealed early stage cancer. Rob and Alex spent a week with Regina while Frank was still in the hospital, and noticed post-it notes around the house where they’d never been present before. Their mother seemed easily distracted and mentioned a few times that she wondered what time their father would be home for dinner.
The situation above is extremely common. Families today are often separated by distance, which makes it difficult to fit regular check-ins into the schedule. Serious conditions can go unnoticed, or be minimized or denied completely before an accident or incident makes plain the true reality of the situation. While it would have been nice for the family above to have been pro-active in discussing Frank and Regina’s advancing age and deteriorating health, they did not take this helpful step. Now, they’re facing the reality of how they’ll deal with caring for both parents for what could be an extended period.
New caregivers tend to consider how to remedy an immediate problem. The family above elected to move their parents to live with the eldest brother Rob, believing that they would be better equipped to manage the situation without such a large distance between them. They’d confirmed their mother’s dementia through some tests with her doctor prior to moving, but were unprepared for the dramatic increase in confusion brought on by transplanting her to an unfamiliar home, town and state. Finding new doctors for both parents proved challenging, so there was a gap in care. Frank’s new doctor had a different plan to treat his lung cancer, which required more daytime office visits than anyone was expecting. Rob and his wife became increasingly frustrated with Alex and Andrew, who would help “when they could” but were often unavailable due to work or family constraints.
The simple reality is that very few families are equipped to take on full-time care of another adult – let alone two additional adults, who themselves are dealing with a dramatic change of lifestyle. So what can be done to help families like this make a successful transition into a new, sustainable situation?
1. Provide an Education
Every illness or condition has an average trajectory. Help your patients and their families understand the reality of what they’re facing,and what it will mean for their lifestyle(s) over time. Will they be able to remain independent? For how long? Do they require regular treatments? For patients with dementia, is there a caregiver already lined up? What kinds of facilities are available in case a family or friend is not able to provide care? What costs are involved in these facilities?
2. Coach the Caregiver(s)
Rob, Alex and Andrew should have met to discuss the long-term needs of their parents. If they’ve not done so already, they should decide which of them are willing to serve as health care agent via a health care proxy designation (perhaps paired with durable power of attorney) for each parent, then suggest the solution to the parents. In the event either parent is unable to make medical decisions, this will be extremely important.
Once the possible caregivers have a clear picture as to what to expect, it’s critical to ask them to be honest as to their true ability to respond to what will be needed. Can Rob’s family truly host both Frank and Regina? As Regina’s dementia progresses, can she be left alone while Frank is transported to his cancer treatments? Can Alex or Andrew commit to providing any portion of the necessary care? Would it be better to keep the parents in their hometown, with known medical providers and a social network of friends?
Sometimes, this honest conversation will result in a drastically different outcome from the one everyone assumes will be the solution. While everyone may desire one solution, it may be impossible to achieve. Once Rob, Alex and Andrew seriously consider what they’re able to do, they may decide it’s not feasible to take both or either parent into their own homes. They may realize that proper care for Regina will only be available in an assisted living facility. They may conclude that a visiting professional caregiver will be necessary for Frank’s cancer treatment. Or, they may find out that Rob and his family will have to bear the primary responsibility for care if Alex and Andrew are unable to help. Knowing this in advance will help every family member avoid the resentment that can arise when one sibling does more than another.
3. Develop a Plan
If Rob’s family decides, after the conversation, that they’re able to take Frank into their home, they’ll need a plan to manage his condition. Since he’s been avoiding medical care, he’ll need to be connected with all appropriate specialists. He’ll need additional physical help when weakened by his treatments. He’ll be undergoing tremendous change in addition to his illness, so a social worker or therapist should be consulted to provide some assistance in navigating the transition. This provider should be alert for depression, which is very common for folks facing the loss of independence. Since he’s moving away from his social support system, he’ll need to be connected to peers who share his interests in his new hometown.
Once Frank settles in to a new routine at Rob’s house, the group will need to contemplate the next stages of Frank’s care. If the cancer doesn’t improve, or becomes worse, will Frank stay with Rob’s family? If Frank requires specialized equipment, will he be able to use it at Rob’s house? How will the family talk about Frank’s illness and mortality to the three grandchildren living in the house?
4. Get Connected
Encourage your patient’s caregivers to join and regularly attend a local caregiver support group. In addition, they should visit the great, deep resources available at the following websites: The National Alliance for Caregiving, the AARP, the United States Department of Health and Human Services Administration on Aging, the Caregiver Action Network, and the Family Caregiver Alliance.
The family won’t be able to completely avoid surprises, but by knowing what is coming, and by having a support system of knowledgeable peers who’ve gone through the same things, they’ll be able to prepare themselves with the information and skills to manage the care to the best of their abilities.