Various studies have quoted that 40-60% of caregivers may die before patients.
“It’s not selfish to mask up first, in fact, it’s mandatory”.
Home care of the elderly and sick by their family members is widely practised in India. Patients are admitted to hospitals only for acute deterioration of their medical conditions. Convalescence and recovery, as well as chronic therapy is often home managed by family members. This is particularly applicable for neurological conditions (strokes, dementia and mental illnesses) and conditions with severe orthopaedic disabilities.
Why do we do this? The reasons are a mix of financial and social. Many families cannot afford the financial burden of a prolonged hospitalization. Even for people with financial resources, leaving the elderly and ailing for long periods of time in a hospital is viewed as abandonment and generally looked down upon. There is also a serious paucity of affordable step-down facilities for such patients. While home care comes with huge advantages in terms of lower costs and familiarity of a comfortable home environment for the sick, it also has its own risks and disadvantages.
A recent unexpected death in my own family serves as a case in point. An octogenarian couple stay by themselves in a Tier 2 city of north India. It’s a standard urban tale—all their children are doing well for themselves and have moved to greener pastures. The male spouse of the family is in reasonable health, except for mild, age-related vision and hearing impairment. The female spouse is seriously handicapped and bedridden with multiple spine and orthopaedic disabilities. She also underwent a recent surgery for cancer.
The only caregiver in the family, for all physical and medical needs, was the husband’s younger, unmarried and healthy brother, who stayed with them. One morning, we were rudely shocked to hear about the caregiver’s sudden demise following a brief febrile illness.
Obviously, in addition to extreme sadness, this resulted in disarray and chaos for the entire family with fear and consternation about the future health as well as logistic arrangements for care of the elderly couple. If one thinks this is a rare occurrence, look again. Various studies have quoted that 40-60% of caregivers may die before patients.
Of course, this data is usually from patients suffering from Alzheimer’s disease or dementia, in my experience, this applies across other chronic diseases as well. Why this paradox? Several reasons—most being logical and intuitive— contribute to the “caregivers’ paradox”. Three of them are foremost. Prolonged and sustained physical and mental stress, lack of attention to self-care and chronic longterm depression.
PROLONGED PHYSICAL AND MENTA L STRESS
It is obvious that physical comfort and well-being of the ailing occupies a large proportion of time and resources in a caring family. However, it is not easy to look after a person with chronic, debilitating illness. Mere tasks of daily living, which we often take for granted while in good health, can become demanding when they need to be performed for others on a long-term basis. The problem gets compounded if the patient is obese, bed ridden, demented or has emotional needs such as a special child.
LACK OF ATTENTI ON TO SELF-CARE
The process of taking care of the infirm often comes at a cost of ignoring the health of the caregiver. This stems from erratic meals, lack of routine exercise, ignoring routine medical evaluation and an element of denial of symptoms. The last, in particular, plays a crucial role. Many caregivers do not pay due attention to minor symptoms such as gastric discomfort (a common mimic of cardiac conditions), breathlessness or a febrile illness.
CHRONIC DEPRESSION
The relentless and seemingly unending process of caregiving naturally leads to depression. Erratic sleeping hours and a lack of celebratory occasions further contribute to gloom in a home with a chronically ill member. Seasonal variation also contributes, with winters and lack of adequate sunlight further worsening depression. More than physical symptoms, subtle signs of depression in a caregiver, are even more commonly ignored. It is now well understood that mood disorders—depression in particular—are major contributors to lowering immunity and to cardiaovascular diseases such as heart attacks. It is therefore not rare to encounter shocking news of caregivers unexpectedly falling seriously ill or succumbing to illnesses that weren’t anticipated.
How can one mitigate the risks? If the stress factors associated with chronic caregiving are intuitive, measures to reduce these risks are also fairly simple and logical. Caregivers should look after their own health as well. This is easier said than done. Caregivers should try and eat well, sleep adequately and incorporate daily exercise into their schedules. Exercise in particular, has an immense therapeutic benefit in reducing stress and depression. Attention must be paid to two additional preventive strategies—regular health examinations and heeding seemingly minor symptoms.
Monitoring blood pressure, blood sugar, oxygen saturation and blood biochemical parameters regularly (easier now with home collection facilities), go a long way in reducing medical risks associated with caregiving. Similarly, every effort should be made to recognize and not disavow seemingly minor symptoms. There is no harm in getting oneself evaluated for an innocuous illness rather than presuming that “all is well”. Employ an intermediary where possible, learn to detach— where not possible!
And yes, technology is also an intermediary. Have you ever wondered why the caregiver’s paradox does not apply to professional caregivers (such as nurses) and house helps? In my opinion, this is because they, while doing their job professionally and regularly, have fixed working schedules and are not necessarily emotionally attached to the patient. Family caregivers, on the other hand, are emotionally connected and have no fixed hours. Hence, I often advise patients who seek (and perhaps heed) my advice, to employ an intermediary help to look after the ailing. This is particularly relevant for nighttime care and to render physical help when the patient is bedridden or heavy. Use of technology such as motorized wheel chairs, high-low beds are also immensely useful in these situations.
FIX A ROUTINE, TA KE A BREAK
Human mind is wired in a way that it looks forward to an end to tedious times. Hence, in chronic caregiving, if the caregiver follows a daily routine (pretty much like school timetables), the mind sees an end to a tedious task and the feeling of hopelessness gets lightened. Similarly, short breaks from the arduous unending routines, also help tremendously. Taking care of an ailing family member is not easy. It comes with its own risks and troubles. Many of these are under recognized and hence unalleviated. While many religious and spiritual scriptures have highlighted the “karmic” benefits of caring for a fellow human being, it is equally important to look after oneself and not fall prey to the delusional law of personal invincibility. So, caregivers, please “love thyself” as well. Prof Hemant Madan is an Interventional Cardiologist and Programme Head, Cardiac Sciences for Narayana Health.