Packing your caregiver toolkit
Maybe you planned on becoming a family caregiver at some point, but it’s more likely that you didn’t. Caregiving often starts small before morphing into a full-time job. Sometimes, it’s a sudden life change that you never saw coming.
Katherine Tullis cares for her mother, who has Parkinson’s disease and diabetes.
“I managed a group home for 10 years for disability,” she told Healthline. “I didn’t fall into this because of my work. They [my 10 siblings] told me, ‘YOU have no children.’” Tullis, who has multiple sclerosis, now cares for two children as well.
Caregiving can be emotionally and physically challenging. It’s also a rewarding, selfless act. But it shouldn’t come at the expense of your own health and well-being.
Here are 10 tools for getting organized and balancing caregiving with self-care.
Gather important documents and keep them in a file box or safe. It’ll save time and stress later.
- contact information for family and friends
- contact information for doctors and other healthcare providers
- health insurance information, as well as other insurance policies
- banking and other financial information
- living will, power of attorney, medical power of attorney, last will and testament
- timeline of your own health history
For information that resides online, create a “bookmark” on your computer for easy access. Consider installing a password manager to safely store usernames and passwords.
Only about 26 percent of Americans currently have a living will. Jill Johnson-Young knows all about the importance of legal documents. She was caregiver to her first wife, who had breast cancer and pulmonary fibrosis, and then her second wife, who had Lewy body dementia.
“They need all their advance directives and legal documents in order as soon as possible because things can change very quickly,” she told Healthline. “It’s a terrible thing to be making decisions as a group, especially in blended families.”
2. Medication management
Almost one third of adults in the United States take at least five medications. Adverse drug events cause almost 700,000 emergency room visits and 100,000 hospitalizations each year.
You can help prevent a life-threatening emergency by creating a medication log or spreadsheet. It will also make your own life a bit easier.
List each medication and include:
- who prescribed it, when, and why
- number of refills and refill date
Try to work with only one pharmacy, or list the pharmacy for each medication.
Dietary supplements and over-the-counter medications can interact with prescription drugs, so include them in your log. Bring a copy with you to all of your doctor appointments.
Use a daily pill organizer and set alarms for medication times. Store drugs in a safe place.
3. Caregiver calendar
A planning calendar may be the most important thing you can do to get organized. Color coding can help you easily pick out doctor appointments and other important activities.
Another type of caregiving calendar allows you to request help with particular duties. Friends can claim items, which you can track online.
Here are a few examples:
Dave Balch is caregiver for his wife, who has brain damage from treatment for metastatic breast cancer. He shared some practical advice on keeping loved ones up-to-date.
4. Home accommodations
Jody Wade has cared for several family members. She recommends taking advantage of assistive devices.
“Absolutely, you want grab bars in a shower and the bathroom,” she told Healthline. “And teach [older adults] to use safe-technique to get dressed. Put a chair in the bedroom so they can sit as they get dressed and not fall.”
Falls are a problem. In 2013, 2.5 million nonfatal falls were treated in emergency rooms, and over 700,000 required admission to the hospital.
- Clear clutter and arrange furniture so there’s room to walk.
- Get rid of loose rugs and keep electrical cords out of the way.
- Use nightlights and motion detection lights.
- Add nonslip adhesive strips to stairways and non-skid mats in the bathroom.
- Install handrails on both sides of stairs or install a chair lift.
- Keep frequently used items within easy reach.
5. Me time
It can happen so slowly that you don’t even notice it as you push your own social needs aside.
Studies show that caregivers who used adult day care services for relatives with dementia had lower levels of stress, anger, and depression, and increased well-being after three months than those who didn’t.
Even something as simple a friendly phone call can reduce distress in caregivers. Enhanced social support can also help with caregiver depression.
Taking some “me time” isn’t a selfish act. When you feel better, you’re a better caregiver, too.
6. Mutual respect
Research indicates that giving joy and pleasure to a patient can foster feelings of well-being for the caregiver.
The person you’re caring for is dependent on you. When you take time to listen and acknowledge their feelings, they tend to feel more secure. The simple act of speaking kindly to patients can improve their happiness and reduce stress and anxiety.
“You have to respect them,” said Jennifer Rowe, caregiver for her mother, who has macular degeneration. “Don’t treat the person as an invalid. Don’t talk down. That is very demoralizing. It will make them feel even worse inside and not have the will to keep going and to fight what they have. You do the tears yourself when they're not looking.”
At times, it seems more efficient to do everything yourself. That may not be for the best, though.
Andrew Bayley was caregiver to his late wife and now takes care of his 100-year-old mother-in-law. When his wife was her mother’s caregiver, she made a daily checklist for her mother.
“Simple things like open the blinds, wash your eyeglasses, make the bed, get the paper, put out a fresh dish towel, wind the clock. It helps her feel like she’s accomplishing something, doing her part and not completely relying on someone else. She likes checking things off her to-do list,” said Bayley.
Caregivers should strive for objectivity about the opinions of the person they’re caring for regarding their care. That person’s wishes should be followed whenever it’s safe to do so.
Valerie Green has been a caregiver to several family members.
When you hit your limits, it’s time for some self-care. It could be as simple as a morning sleeping in without interruption or a night at the movies.
Reach out for help and take time to nurture yourself. After all, if you aren’t in good shape, you can’t do your best for the person you’re caring for.
9. Balance and boundaries
Evelyn Polk is a long-term caregiver for her sister, who has Down syndrome. She shared the most important thing she’s learned since becoming a caregiver.
“The necessity of finding and maintaining balance in taking care of my physical, emotional, mental, and spiritual needs and not feeling guilty for leaving my sister at times,” she said.
Boundaries can get blurry when you’re caring for a family member. If your loved one needs care on a full-time basis, recognize that you can’t go it alone.
You have a life to live. Your own health and other relationships are at stake, so learn to say “no” when it’s appropriate. Otherwise, resentment may spill over into the relationship.
10. Support system
Johnson-Young said she never met a caregiver who would actually ask for help unless you forced them into it. She said you need a tribe.
If you don’t have a readymade tribe, consider a local caregiver support group. You can find more information from the following organizations:
Why the caregiver tools matter
“We do the best we can, given our situations,” said Deana Hendrikson, caregiver for her late mother, who had lung cancer. She now speaks on behalf of LUNG FORCE to help others caring for someone with lung cancer.
“It's easy to look back and think, ‘I should’ve done this,’ or ‘I wish I’d been more patient,’ or ‘We should’ve seen Dr. Xyz.’ Forgive yourself. There is no healing without forgiveness.”
In the event of an airplane emergency, they tell you to put your own oxygen mask on before assisting others. It’s a good piece of advice for caregiving, too.