Even for those who view it as an honor and a privilege, taking on the care of a loved one can be one of the most challenging opportunities of a person’s life. What are the chances you, or your children, will be faced with this life changing event? Fairly high . . . . because family size is trending smaller, with fewer children to care for parents, or other family members. And as the baby boomers creep toward the fall and winter of their lives, the population of elderly persons continues to increase, along with the need for some level of functional care. With the rising cost of professional care, more and more families are taking it on themselves.
Having been a caregiver with my mom for her mother, I can tell you it rocked our world. Even though I truly felt it was an honor to give back to my very much loved grandmother, I was not prepared for the gamut of emotion, the influx of responsibility and information, and the test it put on family relationships. If you are lucky, the transition will take place gradually - periodic adjustments will go smoothly and no one gets burnt out. But if it happens suddenly, the learning curve is often brutally overwhelming. The best thing you can do for yourself at any stage in care-giving, is to get organized. Get organized so that your energy and focus can be spent on what matters most: you and the ones you love.
Below are a few things to help you get started, as well as some tips on how to stay balanced:
Access to Important Documents:
- Medical: medical directives, DNRs, Health Care Power of Attorney, Living Wills, disability/health/dental/long term care/life insurance, contact information for all doctors, detailed information regarding prescriptions.
- Personal: will, birth/marriage/divorce certificates, driver’s license, organ donation, military record, passport/visa, Durable Power of Attorney.
- Financial: banking, deeds, loans and bills, investments.
- Final wishes regarding funeral arrangements/wake, music, passages to be read, who will officiate. Some people find this hard to do, and if your patient refuses, trust in your ability to put something nice together when/if the time comes.
- Share this opportunity with others to give back. Family members, friends, church family, etc. can do something to help Grandpa (prepare a meal, laundry, errands, mowing the lawn, reading to Grampa, etc.) Or they can help you. Say “yes please!” to assistance – everyone will benefit.
- Dedicate some kind of notebook or binder for all things related to the patient so that it is in one easy-to-access place. There are free sources online of charts and clever ideas to help with schedules, medication and medical information. AARP is a great resource.
- Identify action items, and assign each task a level of importance. Set priorities first, taking care of less important details later.
- Discuss what needs to be done, by whom, how often and for how long, how it will be paid for, and at what location.
- Embrace the theme of simplification regarding meals, physical space, schedules, obligations and responsibilities . . .all with the goal of making way for new and evolving circumstances, as well as peace of mind.
- Delegate as many of your non-care giving responsibilities as possible. If you're busy with an aging or ill person, every one in your immediate family can learn new tasks and share the load. You may receive a lot of complaining over this, but ask them if they want to be the ones to bathe Grammy. Trust me, they'll get over it.
Comfort and Compassion:
- Remember your personal needs. You will need to refuel, gain perspective, and work through any number of frustrations. Know your limits and respect them.
- Lean on the healing power of relationships and emotional support. Family nights, outings, visits from friends, activities, phone calls, or simple conversation can take both your minds off illness temporarily.
- Utilize online tools: from caregiver calendars, lists and charts to support groups.
- Not all patients are sweet and cooperative all of the time. My grandmother was an independent woman who, for all her love and humor, could be downright obstinate at the funniest things (like ice cream for breakfast!) Try to keep in mind how difficult is for a person to give up their cherished independence, to rely on others, to come face to face their mortality. As much and as often as possible, include your loved one on family decisions, such as: what movie tonight? which of these three colors should we paint the walls? Ask for input and advice and let them contribute any work they are capable of doing so they feel valued and that they have a solid role in the family. Especially include them about about decisions pertaining to their own life.
- Break the rules sometimes. Relax together. Laugh! Have a glass of wine or a cup of coffee together. Listen to each other. It will go a long way in gaining cooperation from the patient, and ease your burden as well.
- Give everyone a generous learning curve, including you and the patient. If perfection or hyper-vigilance is a part of who you are, work very hard to let go in things that don’t really matter. What really matters in this chapter of your life, and perhaps the last chapter of your loved one, is love.