If someone we love is in the last stages of a terminal illness, or confined to bed rest following a serious accident or injury, or recovering slowly from one debilitating affliction or another, we want to be there to help. It’s a normal impulse, a time-honored response. We cannot, however, always act on that impulse by dropping everything and camping by their bedside. We have full-time jobs, we live thousands of miles apart, we have extended families we cannot uproot.
What to do? How do we manage our own guilt and worry when we cannot do enough, or spend enough time with a loved one in need? First, remember we are not alone in this situation. Find a local support group, or join an online support community. They may offer tips and suggestions that will help you through. And there are some other ideas that may help. Consider, for example:
- Schedule a family meeting. Gather together everyone involved in your loved one’s care in person, by phone or conference call or webchat. And be sure to include the loved one, too. This is a chance for everyone to go over ideas and worries, to discuss your goals and divide up jobs. See that someone is named to summarize the decisions made at the meeting and distribute the notes.
- Get yourself organized. Create a file detailing all the notes about your loved one’s medical condition and any legal and financial matters. List contact information, insurance information, bank account numbers and any other relevant details.
- Research your loved one’s illness and treatment. The more you know about what your loved one is coping with, the better. Find out all you can about the illness or disease – how it develops, how it makes patients feel, what to look for to avert crises, how to help manage changes and upsets. And this understanding may make it easier for you to deal with the doctors involved, too.
- Keep in regular touch with your loved one’s providers. Have your loved one sign a release allowing his or her doctors to discuss medical matters with you (keep a copy in your files, too). Coordinating your patient and all of the caregivers involved is more complex than it might sound. There are frequent communication gaps between one provider and the next, or one phase of the treatment and the next, and of course, things change.
- Ask local friends for help. Stay in regular touch with your loved one’s neighbors and friends. Ask them to check in regularly with your patient, if that is possible. It is a good idea to try to understand what is happening with your loved one on a day-by-day basis.
- Seek professional help. It may be necessary to arrange for help with bathing or showering or other personal needs, or help with meals. A social worker or geriatric care manager could be very helpful here.
- Plan for emergencies. Put aside money and time in case you need to make an unexpected visit or two to pitch in.
- Find out what he or she needs before you get there. Before you visit, ask your loved one what he or she would like help with. Is there something in the house that needs to be looked at or repaired? Do they want to go shopping or visit some place special?
- Look for signs of trouble. How is your loved one doing, really? Are they able to drive or get about safely? Are they eating properly? Is the house clean? Are they taking care of their personal grooming? Are the bills paid on time? Check with neighbors and friends too, to see if they have any worries or observations to share.
- Schedule appointments. If you can, go on a doctor’s appointment with your loved one when you visit. This is your chance to discuss with the doctor your loved one’s health, prescriptions and status, as well as let you ask any questions you might have. Take notes. Check with the doctor, too, about any community resources that may help.
- Set aside quality time. Simple activities – a game of cards, watching a favorite movie, having friends over for a visit, baking some brownies – these help everyone relax and enjoy each other’s company.