The best preparation for giving care is to give up all preconceived notions and expectations of what it is going to be like. The experience will be both easier and harder, more joyful and more painful, shorter and longer than we imagine. In other sections of this website we provide practical suggestions for the day-to-day work of caregiving; here we will address what to expect about the experience of being a caregiver for parents, family or others you know.
Preparing to Become a Caregiver for Family or Others
Everyone comes to caregiving from a different place, and each person’s experience is their own. Our society tends to romanticize caregiving and often fails to acknowledge how hard and exhausting it can be. Some of us come to it out of a deep sense of love and devotion, some because there is no one else to do it, some because it is simply the right thing to do. We may be caring for a beloved parent, spouse, or partner; for a dear friend. Or we may feel obligated to give care to someone for whom we have quite complex, even negative, feelings. No matter the circumstances, the most important thing is that we show up.
Some things to think about:
- Caregiving does not happen on a schedule. We rarely know how long we will be giving care. It is important to approach it as a marathon, not a sprint. It is easy to get caught up in the beginning only to realize later that we are overextended.
- Perfection is neither desirable nor possible. Caregiving can be difficult, complex, and overwhelming. Try to aim for good enough and not criticize.
- Caregiving can be messy. Both physically—cleaning up accidents of various kinds and emotionally—who knew a person could have all these feelings?
- Family dynamics often intensify. Everyone tends to act exactly like themselves only more so. Some individuals rise to the occasion, others do not, and we can’t make them.
- Feelings are just feelings, neither bad nor good. Caregiving can be intense and we may be surprised by our feelings or judge ourselves harshly for having certain feelings. Try to be as kind to yourself as you are trying to be to another.
- There are many sources of support. Be creative in reaching out to others for support. Someone who has given care themselves can be a really good, nonjudgmental ear. Also, people who have cared for someone with the same condition as our patient are helpful, as we don’t have to explain the details. Look beyond the family if possible—friends and acquaintances sometimes have just the distance to listen with caring but not to try to ‘fix’. Try to find at least one person to be completely honest with about how it feels—it really does help.
- Everything changes over time. The condition of our patient, our feelings, the demands of the situation.
- Being a caregiver is only part of our identity. It is very easy to get completely devoured by caregiving. If we can hold on to some rituals and activities, no matter how small, that are ours, whether they be coffee out of a certain cup, sitting in a favorite chair, going to yoga, running every day or whatever, it really helps in the long run. It is easy to feel as though we have lost contact with the life that was ours before we started giving care.
- Our greatest gift is our presence. As humans we all yearn to be seen and accepted as we are, even if it is a bit bedraggled. That is the gift we give to those we care for. And that is the gift our inner circle gives us. There is none greater.
Not all the suggestions below may apply to you in your role as a caregiver.
- Make a calendar, digital or paper, of appointments, events, and caregiving schedules. Knowing that nothing will be forgotten makes it easier to relax when not ‘on duty’.
- Make a list of contacts including doctors and other medical people, insurance companies, lawyers, financial advisors, and people to be contacted in emergencies such as family and inner circle members. Include addresses, email, and phone numbers. Make a lot of copies. Put in a prominent place.
- Make a list of medications including dose and when they are to be taken. Bring with you to all doctor appointments.
- Make a list of service providers such as home health, cleaners, gardeners, handymen, and other persons who may provide help around the house.
- Make a list of caregiving tasks so that someone can step in for you if necessary. For example, what the patient likes to eat, where the blood pressure monitor is, that the caregiver needs to put the toothpaste on the toothbrush.
- Look around the house and consider if changes need to be made to accommodate the new circumstances. We have suggestions that may help improve home safety.
- Consider organizing a Facebook group, a blog, or whatever social media you prefer to centralize communications. It can be exhausting to write multiple reports at the end of the day even when you really want to keep people informed.
If the patient is not able to look after their own affairs, the following may be useful:
- Make a list of website ID’s and passwords of the patient and keep in a safe place.
- Make a list of monthly bills and other items to be paid. Make sure you have access to bank accounts. Make a budget so you understand both income and expenses.
- Get all information on insurance policies and contacts.
- Consider getting a broad power of attorney so that you can act on the patient’s behalf. These are available for a fee at LegalZoom and other websites. Make sure you keep digital and paper copies of the executed document.
Inform Other Caregivers
Consider making a notebook containing whichever of the above lists that a daily caregiver may need access to. Be sure to include advance directives, POLST’s (if applicable), DNR’s (if applicable). Leave the notebook in a prominent place.