If you are considering volunteering to help out or to temporarily give respite to the caregiver of a chronically or terminally ill person, there is a lot to consider. Before agreeing to take on such a task, know your own limits. What are you realistically willing or able to do? Are you are you able to participate in the physical tasks of caring for the patient? Would you be afraid to give too much or not enough medicine if you agree to give medication? A lot of responsibility is involved when agreeing to such a task. Some illnesses come with side effects that we do not consider like loss of control of bodily functions and open wounds. These issues are often not in the thoughts of someone that is offering to help during a difficult time. Know that if you are on this journey, you are not alone. Others are trying to do the same thing and stories of tried and true effort can get you through a very difficult time.
Communication is important. It will probably be hard to leave personal feelings and opinions behind. It will take conscious effort to remember that one is there to help and not to tell the family how to deal with their treatments or illnesses. If you are the type of person used to being in the driver’s seat, this will be really hard. Most people that will be offering to do this will probably be just such a personality. Standing aside while knowing that things could be handled differently is harder than people imagine. Instead of telling them that you do not agree with the decisions being made, try to make suggestions. These might go unheard or unacknowledged. Try to think what you will feel if this happens. If you have a hard time letting others make decisions, consider not being involved in these types of discussions.
Sometimes, patients are totally trusting of their caregivers and completely oblivious to their circumstance. They can also be aware of their circumstances and consciously choose denial as their way of coping. Then, there are total control patients and caregivers that want to dictate every step of the care. You should be aware of these circumstances so you do not overstep the boundaries involved in these types of situations. If you find you are in over your head, don’t hesitate to seek further advice from someone that is familiar with these types of care circumstances.
Words, ideas, and thought will get left unsaid. It might be good to make a conscious effort to be present without trying to take over. Some caregivers and patients need to talk about everything that is going on around them, not because they want your opinion, but because they need to hear the thought outloud so they can work it out for themselves. They might just want to hear that you think that they are making good choices.
Sometimes, the best help one can give a family is to help with cleaning and organizing the space in which the care is taking place. Maybe offer to do laundry, wash dishes, or cook dinner. Helping out without taking over can help make the patient and the caregiver’s journey a little easier. It can also be a true blessing to know when all’s said and done that you chose to help out and do the best that you could during times of hardship. It leaves one with a great sense of self satisfaction.
In choosing to become actively involved in the care process, you should try to be aware if the burden of the task at hand has become too much to deal with. Again, communication is important. Communication with the family or someone you can confide in will be important to consider. How you, the volunteer, processes you own experience as you move through it will be important to how you will feel after you leave the situation.
Realize that sometimes the best choice to make is to step aside or to find something else to do when the air becomes intense with emotion and pain. These situations are very personal for the families involved as well as for you, the volunteer. If you can walk away and catch your breath that will help a lot. It can be hard to stop and count to 10 or backwards from 10 when tensions get high. If you find yourself talking too much or getting upset mentally tell yourself to W.A.I.T.(Why Am I Talking). This will help you to consciously pause and regroup your thoughts. I just learned of this from another Hospice Helper and it really resonated with me. It is one of many tried and true tips that people that work regularly with patient care share amongst each other. There are many. I only mentioned a few, but considering these few things will help you be a better helper and make your experience volunteering be more fulfilling.
Remember the family needs you for a different reason than they need their caregiver. It might be difficult once you become emotionally involved in the process of helping to step aside when the caregiver returns or other people step in and out of the situation. Just being more aware of what is going on around you and how you react to different situations can help this be a better journey for all involved.