A Guide For Family Caregivers

Family caregivers are so important there is a month for them: November is National Family Homecare Givers month. Spearheaded by CaregiverAction.org, the group began promoting national recognition of family caregivers in 1994. President Clinton signed the first NFC Month Presidential Proclamation in 1997 and every president since has followed suit by issuing an annual proclamation recognizing and honoring family caregivers each November. The mission for the monthly celebration is to recognize and honor family caregivers across the country by:

• raising awareness of family caregiver issues,
• celebrating the efforts of family caregivers,
• educating family caregivers about self-identification, and
• increasing support for family caregivers.

This year’s theme is “Supercharge Your Caregiving.” But to do that, the caregiver must be in a stable state of wellbeing, both physically and emotionally.

Being able to help with the care of an aging relative is a privilege for many, but it is not easy. When one person is expected to provide everyday assistance, coordinate medical care, and be a regular companion, burnout is a real concern. Professional care providers know this is possible and receive training on strategies to avoid being overstressed in a job. Just because you are personally close to a patient doesn’t mean you won’t face many of the same struggles.

When caregivers become depleted, not only does the care provided suffer, but the caregivers themselves will find a loss of joy, increased frustration and often develop health issues.

Typical Signs of Burnout in Caregivers

• Sleep problems
• Changes in eating habits or weight
• Feeling of hopelessness
• Withdrawing from activities once enjoyed
• Neglecting own physical and emotional needs
• Feeling like caregiving is controlling your life
• Becoming more impatient with the patient or others
• Anxious about the future
• Mood swings or signs of depression
• Difficulty coping with everyday activities
• Headaches, stomach issues or other physical problems
• Recurring illness; lower resistance to sickness
• Lack of energy; overwhelming fatigue

Caregiver Strategies for Releasing Stress

There is going to be stress in caring for a loved one and there will be times a caregiver is completely empty. Fortunately, there are self-care practices that can reduce, remove or just delay stress and burnout.

For the Caregiver

As any parent knows, time away from the children, even for just an evening, can change one’s perspective and allow a recharge. Working with aging adults is no different. Choose regular activities to engage in, either alone or with friends, as a reminder that you are more than just a caregiver.

• Give yourself permission to take short or extended breaks. Get out of the house throughout the day, even for 10 minutes. Visit with friends. Pamper yourself with a massage. Take a long bath.
• Take care of yourself. Don’t skip your own doctor’s appointments because you’re too busy. Exercise, eat well and don’t sacrifice sleep.
• Get up 15 minutes earlier and use the time just for you. Sit with your coffee or tea and enjoy it, journal about your struggles and feelings or meditate, pray, or stretch.
• Check into family-leave benefits from your place of work. It could take a huge weight off your shoulders by giving you more hours in your day.
• Be open to new technologies that can help you care for loved ones. (See below for helpful apps)
• If an opportunity comes along for a brief getaway for you, consider utilizing an Assisted Living Community for respite care. Many of these communities offer short-term respite care from 1 week all the way up to 1 month.
• Watch out for signs of depression and don’t delay getting professional help when you need it.
• Give yourself credit for doing the best you can in one of the toughest jobs!

From the Community

• Ask for help! Needing help doesn’t make you a bad caregiver. It simply means you can’t do it alone (no one can do it alone). And be sure to accept offers of help!
• Make a list of your daily activities and tasks. See if you can delegate any of it. Maybe your spouse can make dinner twice a week. Perhaps a friend or relative can run errands or help with laundry. People often want to help but usually need a suggestion on what you need.
• Learn how to communicate effectively with doctors and organize medical information and legal documents so everything is up to date and easy to find.
• Seek support from other caregivers. You are not alone! Communicating with others who are in your situation helps immensely, as does opening up and sharing your frustrations and joys! Online support groups are easily accessible.

With the Patient

It’s hard to think about stress relieving activities with the person you spend the most time with – and who is probably causing a good part of the stress! However, it’s important to remember that your patient is someone you care very deeply for and have shared many good memories with. This person is also a person with feelings and he or she still wants to experience the fun in life. As you are able, try to engage in activities together.

• Enjoy nature. Work in a garden, birdwatch or simply sit outside in the sunshine to lift spirits.
• Participate in an art class. Allow creative juices to flow with no “rules.”
• Have a pamper session. Go to a salon or have a hairstylist or manicurist come to the house to give attention to these small personal care needs.
• Play Bingo or work on a puzzle together. Many older individuals still need mental stimulation, even if they are burdened by health issues.
• Go to a yoga class together. Not only is this good for the body, but it is also very relaxing!

When burnout does occur, there almost always needs to be time away from caregiving responsibilities. It is vitally important to have a trusted person that can step into the primary caregivers’ role for a period of time. Talk with family, friends and health care professionals to identify a reliable individual or service to provide relief.

Additional Support Resources

There are so many different resources available to caregivers through the power of the internet. These websites have links to numerous organizations, provide pertinent information and encourage caregivers to be engaged in support groups.

https://www.caring.com/caregivers
https://www.caregiver.org/caregiver-connect
https://caregiveraction.org/family-caregiver-toolbox

You can also find different apps that can be easily accessible on your phone or tablet. Some helpful ones are grouped below.

Health Needs

Carezone helps caregivers track information by organizing prescriptions, insurance cards, ID cards, and legal documents in one place. It has a place for notes, a task list, medication logging, and uploaded photos. It also allows you to share information with family or other important people; you can even upload a voice message for up to 100 recipients.

eCare21 is a health monitoring system and because everything is tracked in the app, you or a doctor can access the information wherever you are located. The app connects with many fitness tracking devices and compiles the information on a dashboard. You can also create care plans, medication schedules and health snapshots to share with family and friends.

GenieMD tracks and shares health profiles. It helps manage medications, alerts to adverse drug interactions and tracks vitals such as blood pressure, glucose levels, and cholesterol. It also aids in contacting 911 and can be synced with doctors by providing free reports.

One of the most stress causing issues faced by caregivers is medication administration. While not an app, the MedMinder is an automated pill dispensing device that can also provide alerts by text or a phone call. This gives peace of mind that doses aren’t skipped or doubled up.

Community-Based

CaringBridge allows friends and family to stay connected by reading updates on your loved one’s care and leaving encouraging messages on your page. You can choose how private you want your page to be and even start a fundraising drive similar to GoFundMe for your loved one.

Caring Village enables family caregivers to communicate via a secure messaging system where users can create “villages” among friends and relatives to help coordinate the specifics of a loved one’s care. Users can create customizable care plans for their loved ones plus personalized to-do lists.

Lotsa Helping Hands is a free caregiving coordination web service that provides a private, group calendar where tasks needing done can be posted. Family and friends may visit the site and sign up online for a task. The website generates a summary report showing who has volunteered for which tasks and which tasks remain unassigned. The site tracks each task and reminder emails are sent to the appropriate parties.

Unfrazzled allows the user to connect with other family members and share information and responsibilities. You can create to-do lists and journal your thoughts and experiences.

Stress Management

Elder411 offers caregivers more than 500 pieces of advice in 11 areas of care. You’ll find hundreds of tips in the areas of safety, housing, hiring caregiving help, adaptive equipment, communication, legal, mobility, letting go and other key care issues. There’s also a search area and a place for keeping notes.

Headspace helps reduce stress and improve focus. Headspace is meditation made simple, teaching you the life-changing skills of meditation and mindfulness in mere minutes a day.

MyCalmBeat helps manage the stress by leading breathing exercises. Simply set your breathing rate and the length of the exercise and then follow along with the on-screen animation. Controlling your breathing can be a very effective way to lower your stress in the moment.

VirtualHopeBox has different activities designed to distract, inspire, and relax, like short games, guided meditation, and more. It also has “coping cards.” You can tailor each category specifically to your situation too.