What can Long-Distance Caregivers do from Afar?
“Caregiving is a constant opportunity to love and answer to the needs of a person.”
The 38th Compassionate Caring Webinar hosted by Bhavana Issar from Caregiver Saathi features Dr Raj Kumar Mani who gives his professional views on “What can long-distance caregivers do from afar”. It is a well-rounded conversation that gives insight into how long-distance caregivers can use technology and effective communication principles to assist local caregivers.
He highlights the emotional and financial challenges of long-distance caregiving. He elucidates communication principles to help long-distance caregivers understand the reality of the situation and ease their own anxieties of not being physically present with their sick family member. Dr Mani touches upon complicated topics of family dynamics and the guilt experienced by a long-distance caregiver.
12:12 – 14:00 Introduction to Speaker
Dr R K Manu is a well-known name in critical care, pulmonology, and sleep medicine. In his career of almost 40 years, he has made his mark in his roles as a pioneer clinician, academician, researcher, teacher, campaigner for humanizing medicine and medical administrator.
14:00 – 15:50 Dr Manu’s views on Long-Distance Caregiving
“Long-distance caregiving is a reality which wasn’t focussed on for a long time, even before the Covid times.”
In today’s world, families are nuclear and dispersed all over the world. Regardless of the distance that separated them, people desire to take care of their ill family members.
“Where there’s a will, there is a way. Where there is a heart, it finds its way.”
The role of a long-distance caregiver hasn’t been recognized until now. Technology has helped discover new and interesting ways of going about it.
15:50 – 17:29 Challenges of Long-Distance Caregiving
“For family caregivers, it is often a story of anguish and desperation.”
Caregiving from a distance can bring a sense of helplessness and this can manifest in stress. They might have reservations about the quality of care delivered by local caregivers. Poor communication can create a breach between what is the reality of the situation and the long-distance caregiver’s perception of it.
17:29 – 20:19 Skills a Long-Distance Caregiver needs to Develop
A long-distance caregiver must first remind themselves that it is viable to care for a loved one without being in their physical presence. In Dr Manu’s opinion, they must initiate open conversations with the local caregiver to understand the situation and its problems.
“You look at a problem not as a problem but as an opportunity to find solutions and make it easier for your loved ones.”
There are new ways of administering care through digital platforms. Technology like video conferencing to communicate and platforms with resources to arrange for amenities like oxygen are helpful. Long-distance caregivers must use this technology to help primary caregivers to the best of their abilities.
20:19 – 34:25 Principles of Communication
“No family caregiver can function effectively without help from the health care professional and vice versa.”
People usually believe they are natural communicators, especially health care professionals. But one must introspect to see how effective they actually are.
For effective communication, the people involved must consider each other as equals. While doctors possess medical knowledge, family caregivers personally know the patient which is also a valuable source of information. Hence, both must be given equal importance.
Family caregivers must communicate with the professional caretaker or healthcare professional to ensure a smooth and accurate flow of information. They should begin the conversation with an open mind but also prepare themselves for any setbacks.
According to a study, 50% of caregiver families experience anxiety and these numbers increase with long-distance caregiving. Talking to healthcare professionals about their reservations and anxieties can alleviate the emotional burden. Noting down worries and doubts they would like to bring up beforehand can help navigate through the conversation with ease.
“We should not have to have preconceived notions. We should come to the table with open minds, feel free to express ourselves and have a good, even exchange.”
35:15 – 39:40 Emotions Experienced by Family Caregivers
Caregivers may experience guilt for not being physically present with their sick loved ones. The guilt may be self-generated, but it is also amplified by other people.
“Very often, the fire of guilt is stoked by well-meaning individuals, well-wishers or even the professional caregivers”
Guilt is unnecessary and unproductive. Caregivers must relinquish their judgements about themselves. Sharing their feelings with the professional caregiver can also be reassuring.
“A well-trained and wise professional caregiver will put you at ease. All that needs to be said is it’s neither your fault nor anybody else’s fault. Even if it is so, it is our collective task to address this to the best of our ability. We can’t set the clock back; we can’t change a single thing that has gone by.”
39:40 – 42:35 How to Deal with the Effects of Family Dynamics on Caregiving?
Bhavana speaks of an instance wherein the daughter was the long-distance caregiver and the daughter in law was the primary caregiver. The family dynamics led to misunderstandings and complicated caregiving.
Dr. Manu says that when the primary caregiver has a lower position in the family hierarchy, it can put undue pressure on them. The focus shifts from caregiving to a power play between family members. Natural tendencies to downplay the primary caregiver in such instances must be curbed for the wellbeing of the sick family member.
42:35 – 48:45 How can Long-Distance Caregivers deal with Complicated Circumstances?
A long-distance caregiver may exhibit different responses to news of poor prognosis or mortality. They may be in denial or anger before they accept the reality. It is important to give decision making adequate consideration and time in such cases.
48:45 – 56:40 Respecting the Deceased Person’s Wishes and Beliefs
It is generally suggested to discuss our wishes with our families beforehand to avoid complicated situations later and ensure that the right decision is taken in case of a medical emergency.
When a family member passes away, it is essential to execute their wishes by first initiating a conversation around it with other family members. The deceased member’s beliefs may not coincide with the family’s. Nevertheless, the best way to help our loved ones is to execute their wishes.
56:40 – 57:40 How is Long-Distance Caregiving Different from Telemedicine?
Telemedicine and long-distance caregiving are undertaken from a distance. Telemedicine involves technical guidance, evaluation and monitoring of the patient through a medical point of view whereas long-distance caregiving relates to the human side of the patient’s wellbeing and assisting the primary caregiver.
57:40 – 1:01:20 Managing Caregiving Expenses
“Economic burden is a huge stress factor. It is not just a stress factor; it can destroy hopes.”
The National Sample Survey shows that a huge number of families live below the poverty line after an ICU admission of a family member due to high costs. Around 40% of families borrow or sells their assets to meet their expenses. The death of the bread earner is a great financial setback and can impact the development and education of children in the family.
As the medical condition of the patient worsens, the medical expenses also increase. Dr Mani says that expenses are often inversely proportional to the longevity of the patient’s life. This once again arises due to a lack of preparatory conversation on the matter.
“The end of life is inevitable, but it is a conversation worth having.”
Health care professionals also need to be realistic about the situation and be wary while suggesting alternate lines of treatment. They must support families and help them accept a poor prognosis and the possibility of mortality.
1:01:20 – 1:03:54 Overview of the Webinar
Bhavana gives an overview of what was discussed during the webinar.