Remote caregivers are family members who, due to their circumstances, live far away from their elder loved ones and are thus unable to take on a significant role in the day-to-day activities of caregiving. This inability to look after their elder loved one at a critical time can be very frustrating and can lead to serious guilt issues. In order to compensate, many of them try to participate in the caregiving process in the only way they can—by giving well-meaning advice.
Unless the adviser is a trained nurse, a doctor or is in some other way qualified, their advice is largely useless and at best only reiterates what the primary caregiver already knows. This can be very annoying to you, the primary caregiver, especially at a time when you are already grappling with myriad issues that may be overwhelming you.
Also Read | What caring for Amma through her memory loss is teaching me
Desist from responding harshly. At the earliest opportunity, have an all-hands-on-deck family meeting. You could use a tool like Skype, Zoom, Google Hangouts or any of the many video conferencing tools that are available online for free. Set an agenda and run the show. The main purpose of this meeting would be to allay their fears, assuage their guilt and get them to provide you with help that has the potential to ease your burden. A constructive meeting at this point in time will go a long way in helping you manage remote caregivers in a way that is good for everyone.
Given below are a few suggestions for content and tone, but obviously you can do this in your own way. The important thing is to be sincere in whatever you do say.
Explain the current situation, health-wise
You could start by explaining the condition of the patient and convey any prognosis that the doctor may have shared with you. This will help everyone understand the gravity of the situation.
You could convey to them that under the circumstances, you are thankful that the responsibility of being the primary caregiver has fallen on your shoulders and that, on behalf of everyone, you are ready to do the best that you can. This may not be totally true as none of us really want our elders to be unwell or have such responsibility thrust upon us suddenly, but you do need to say it and they do need to hear it. Besides, you are the primary caregiver, so saying this will allow it to sink in for you as well.
Be understanding and get them to be understanding
Tell them that you understand that if one of the others had been in your place, they would have done the same thing. This will help them believe that you are not grudging them their freedom. Also tell them that you are new to this and there is much to learn and it is overwhelming, but you hope to do the best that you can. This will send a clear message that instead of looking to criticize, they should be looking to help you constructively.
Enlist their support and gently set the boundaries
Tell them that you are going to reach out to them when you need help, but that you would be relying heavily on them for moral support, positivity and encouragement if and when you are feeling down. This will give them an idea of the best ways in which you feel they can support you.
Request for time
Inform them that while the role of a caregiver may be new to you, you are working towards streamlining everything. Request them to allow you some time to do so. Use this time to work out how you can utilize their services. Some or all of them could also contribute financially. You could also work out a roster so each of them can plan their visits so they do not overlap, allowing them to take turns being caregivers. At all costs, ensure that they don’t all land up at the same time. This is counterproductive for multiple reasons. For one, they will all be happy to meet each other and it will end up becoming more of a vacation for them than a stint of caregiving to help you out. Two, you will be burdened with too many additional guests at the same time. Finally, with so many helping hands around to share the burden at the same time, they will not be able to appreciate the actual amount of work that goes into caregiving when it is just one person managing it all.
After this, you can throw the discussion open if you are confident that it will be constructive or ask them to come up with ways in which they can help however possible, from wherever they are. This will help you move them towards figuring out what they can do and away from what they think you should be doing.
Sometimes, because of cultural differences, for example, remote caregivers may not understand some of the additional intricacies involved in India. Say, if the nurse fails to show up one day without notice, you know it is something that is likely to happen from time to time and are reconciled to managing without help on those days. But a sibling in the US might jump up and down or go ballistic at the unprofessionalism displayed by the nurse and ask you to change the agency immediately. Little do they know that if you were to do that, you would run out of agencies pretty soon. Lend them a patient ear and calmly explain ground realities to them, emphasizing that you are ready to manage the situation. Help them understand and get them on your side. If they still don’t understand, ignore them and move on.
Similarly, siblings and family living in developed countries may expect all the equipment and services to be of the quality that they have seen in the hospitals there. Explain using numbers, as in the costs for that level of quality versus what you have opted for and its sufficiency, and leave the decision of upgrading to the entire family.
Once you are settled in, have regular meetings, say, once a week. Discuss all issues. Keep the family informed and up-to-date. They will appreciate it and it will show in how they contribute to the caregiving exercise.
Excerpted from The Home Stretch with permission from Penguin Random House India.
Also Read | 'Jole Dobe Na': The afterlife of caregivers