SAIF Golden Charter

The Sandwich Generation

Family members, often the unpaid, unsung heroes of the health system in their care of elderly parents, are needed more than ever, but they are burning out fast.

With increasing demand on health care budgets, hospital places, nursing homes, and rehab or extended care facilities, more and more people are being expected to look after their ageing parents, while supporting and looking after their own children.

They are known as the ‘Sandwich Generation’ because they are middleaged individuals effectively ‘sandwiched’ between the obligation to care for their aging parents, who may be ill, unable to perform various tasks or in need of financial support; and their own children, who still require financial, physical and emotional support.

The dual trends of increasing life expectancy and that of having children at an older age have contributed to this sandwich generation phenomenon. The obligations placed on the sandwich generation demand considerable time, energy and money.

With the added pressures of managing one’s own career and personal issues, as well as the need to contribute to one’s own retirement, these individuals are often under significant stress. In some cases, baby boomers often have to postpone their own retirement because of the added financial obligations of the older and younger generations.

Caring for a loved one can be very rewarding, but it also involves many stresses, such as changes in the family dynamic and established roles, household disruption, financial pressure and the added workload, all of which strain the resources that are available. So is it any wonder that caregivers are the people most prone to burnout?

Here are a few stories on what it is like to be a sandwich generation caregiver:

Debbie’s story

Debbie, a 53-year-old school teacher and a single parent, was working full-time to support herself and her adult son, who has mental health issues. When her father was to be released from hospital after knee surgery, Debbie put her career on hold to provide round-the-clock care to him when his health deteriorated after the surgery.

In addition to mobility challenges caused by the operation, her father has been fighting cancer and dementia for some years, making him a high-needs patient. She had thought he would be going into long-term care, but no spaces were available. Then she learned she was expected to take him home.

The family’s publicly funded home care started at 25 hours per week, but within a short-time, that had dwindled to 11 hours. Debbie was forced to go on a leave of absence in order to be able to stay at home with her father.

With the lack of jobs and over-abundance of available teachers, she worries whether she will be able to return to her old job.

Debbie has not been able to work since last September and has had to go on social assistance. Even at 53, she is beginning to have health challenges of her own, including arthritis in her knees and chronic pain. “I don’t think people understand what you give up and what you lose to do these things,” she told me. “It changes your whole life.”

Hugh’s story

Hugh, a 59-year-old business analyst in the banking industry, took a leave of absence from his job last June to spend the summer with his wife, Eileen, who after four years of challenges was in the late stages of early-onset Alzheimer’s disease.

He wanted to spend as much time with her as possible while she still recognised him, and he planned to use the time to begin the arduous process of applying for long-term care.

With every ability Eileen lost, Hugh gained a new responsibility. He did all the research and paperwork necessary to manage her illness, while ignoring his own health. The stress caused panic attacks, and he eventually had a seizure.

Hugh continued to care for his wife full-time, with the help of home-care workers, throughout the autumn. His employers were understanding, allowing him to work from home and take more time off as he began to plan her transition into a nursing home. She moved into long-term care just after Christmas last year and is now in palliative care. He continues to visit her every other day and remains actively involved in her care. He is now in his fourth year as a caregiver.

Maria’s story

Maria, who is 49, doesn’t know how she will manage when the hospital discharges her 47-year-old husband, who is recovering from an ischemic stroke six months ago that left him with extensive brain damage. Maria, his wife of nine years, was shocked to learn two weeks ago that the hospital wants to send him home even though she says he has limited verbal abilities, uses a walker, is unable to shower or dress without assistance or get into or out of bed without help.

Maria feels strongly that Don needs more rehabilitation in hospital, and she is panicked at the idea of her husband being sent home in his current condition. But the medical team managing his care states emphatically that he is ready.

“The doctors were all expecting Don to die,” she said, in tears. “Miraculously he didn’t, and against all odds he’s made a lot of gains. What he needs is more rehab. Why can’t he get more rehab? That’s what I’d like to know.”

At last report, they had only been offered two hours daily of publicly funded home care. She doesn’t believe Don should be left alone, but with her husband on long-term disability, Maria can’t afford to reduce to part-time hours. All of this puts her in a tough spot between the proverbial rock and hard place.

This is the reality of more and more middle aged lives. Caregiver stress can be particularly damaging, since it is typically a chronic, long-term challenge. These people may face years or even decades of caregiving responsibilities. And of course it can be particularly disheartening when there is little or no hope that their family member will get better.

Without adequate help and support, the stress of caregiving leaves people vulnerable to a wide range of physical and emotional problems, which can vary from heart disease to depression and many other physical and emotional issues, as both Hugh and Debbie discovered.

Even worse, when caregiver stress and compassion fatigue puts one’s own health at risk, it affects our ability to provide care. It hurts both the caregiver and the person they’re caring for. The key point is that caregivers need care too. Managing the stress levels in their own lives is just as important as making sure their family member gets to doctor’s appointments or taking their medication on time.

It has been calculated that distress among unpaid caregivers who bear the heavy burden of looking after their ill, elderly or disabled relatives has doubled in four years due to our aging population and the strain this puts on the existing health care resources. The same research points out that the proportion of family caregivers who had to stop looking after their loves ones due to stress more than doubled over the same four years, rising from roughly 7% to 14%.

The research raises a troubling question: What happens to patients and the health system if unpaid caregivers are unable to provide care?

The answer seems obvious. If distress rises and caregivers increasingly step away from the role, their family members may have nowhere to go but long-term care homes and hospitals. Patients will suffer if they can no longer live in their own homes, as most wish to do, and there will be a substantial cost to the health system.

In fact, this situation has been described as creating a perfect storm for the health systems: a growing need for family caregivers at a time when distress is making them increasingly unable to do the job. And the demographic and social changes that are occurring in our world necessitate that more caregivers will be needed, not fewer. The proportion of older people is on the rise, and long-term care homes or hospitals just don’t have the capacity to absorb the growth of the senior population.

Thankfully, many health authorities have recognised the need to make home and community care a priority, and the importance of supporting caregivers as part of that process.

Next time, we will look at some of these strategies for support.