Family caregivers form the foundation of primary health care for patients with terminal illness, mental illness, chronic diseases, and addictions. Depending on the life stage and age, spouses, siblings, parents, children, sometimes extended families, are the primary caregivers. This is especially true in the Indian cultural context, where families feel duty bound to be there for the person in need. Family caregiving is the norm and people do not give up the responsibility to professionals or institutions. Doctors, therapists, nurses, and healthcare workers are there to help, but their impact on the day to day life is minimal.
More often than not, the role of the caregiver is taken as granted and looked upon as something that the person ‘must’ do. Whether it is taking care of a paralytic family member, a special needs child or a parent suffering from Alzheimer’s Syndrome or dementia; the caregiver is expected to just assume the role naturally and start supporting the patient. There is rarely a lead time or a transition period to ease into the role or a training manual to family caregiving. Families may have the best intentions and even continue to do a great job over a long period of time. Yet there are many challenges that caregivers face on a day-to-day basis, that need to be acknowledged and addressed.
1) Am I physically strong enough for caregiving? (Physical challenges)
Taking care of someone often requires physical presence around the patient, helping them navigate through the day. Special needs children and patients with chronic diseases require continuous monitoring. In some cases, patients need help getting up and moving about, even using the bathroom. In others, one has to be at the constant beck and call to assist with minor life activities. The resultant physical stress and fatigue can be strenuous. Family caregivers are sometimes not able to take a break, even when they fall sick themselves. Having household help or stay-at-home healthcare workers can help but isn’t an option for everyone.
2) What exactly is the family caregiving journey like? (Knowledge resources)
Family caregiving is a journey for which there is actually no map available, other than maybe Google. There are some support groups and online forums. However, they are more focused on patient care or new treatments. One finds more information on the different ways to help a special needs child than how to support the mother of a special needs child. There is practically very little information available about coping mechanisms for spouses of paralytic patients or dementia patients. That is where Caregiver Saathi proves to be the perfect helping hand. We understand that though the patient is the one who needs care, the caregiver also needs a support network. Join the network to clarify all your doubts and apprehensions about family caregiving. You will meet other people who are in the same boat as you but have probably been rowing for a while. So they can help you chart out your course better.
3) How expensive will it be and how will I arrange the money? (Financial challenges)
The financial burden of caregiving is something that traditional families do not like to talk about. Caregivers are suddenly in charge of taking financial decisions on behalf of the patient. Insurance claims, medical bills, day-to-day finances, long-term care expenses – all of this comes with the territory. Sometimes the patient may not have financial assets of his/her own and the caregivers spend their own money to take care of things. Asking friends and relatives, using resources like Milaap are available options but it isn’t always easy. Thinking of money or sparing any expenses while caregiving feels wrong. Hence, family caregivers go to any lengths to ensure the best care that money can buy. Now if only they had a support group who could suggest less expensive options they have tried.
4) Caregiving is taking its toll on me and but how do I deal with it? (Emotional challenges)
The illness or disability of a loved one is as much a shock for the family as it is for the patient. There is a sense of loss, disappointment, and confusion about the way forward. Most of the time, the family is rushed to take decisions even before they have processed their own feelings. Caregivers put their own lives on a hold for a while, which can turn into months or even years. When it is not feasible to hit the pause button, family caregiving can become an additional burden. Patients are not always in a position to show gratitude and sometimes, even resist assistance. Anger, hopelessness, frustration, regret, even a sense of guilt, family caregiving can lead to a lot of negative emotions. Quite often, caregivers feel they need to put up a positive and strong face, to give hope to the patient and everyone around. This makes it that much more difficult for them to ask for emotional help or even accept that they need help. Support networks like Caregiver Saathi can actually offer help proactively, offering avenues for caregivers to be able to talk to someone who understands.
5) What about my needs? (Personal challenges)
A caregiver’s routine day pretty much revolves around the patient he/she is tending to. They have to be prepared for all possible scenarios and up-to-date with the latest information about the patient’s condition. It takes immense patience and stamina, to deal with the many people on behalf of the patients. Doctors brush off their observations and sometimes patients themselves do not follow instructions. Amidst all this chaos, the caregivers are left doing a thankless job, working hard but not always achieving their goals. They have limited free time to pursue their own interests and passions. The few people they do interact with, do not understand their life and its challenges. Even people who visit them, are more interested in knowing about the patient than them. So there is often a gnawing feeling inside them about their own lives and personal affairs.
These are just some of the challenges of family caregiving. Depending on the patients they are looking after and their own personal situation, they have many other struggles. The larger community labels the fine work they are doing as noble, making them examples for other people. Yet they do not recognize the deep scars that this duty often leaves on them and their immediate families. Caregiver Saathi is committed to being the go-to friend of these invisible warriors. Sometimes knowing that help and support exists is not enough. So we would like to actively reach out and make family caregiving a little easier.
“About the Author”
“Marketer by training, wordsmith by choice. Words have never failed me. Feminist. Foodie. Forever in search of an intelligent conversation. Some say I should be a lawyer. Give me a premise and I can argue both sides. I think whichever side I take a stand for wins. Come debate with me if you think otherwise. Bring facts, unless you are God or Shahrukh Khan.”