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Start the Conversation
The right time to talk about the future is now—even if it’s uncomfortable. Ask your loved one about their wishes, values and preferences on things that matter, from health to finances. If you wait until a fall, accident or serious diagnosis, your choices may be more limited and more difficult to evaluate when everyone’s stress levels are sky-high.
- Look for an opening: Rather than bringing up a tough topic out of the blue, it can help to point to a newspaper story or a relevant comment as a conversation-starter. (Example: “You mentioned your eyes are bothering you. Is this causing problems with reading or driving?”)
- Keep trying: It can be hard for some people to admit they need help. If your first conversation doesn’t go well, gently try again. If you are repeatedly shut out, consider asking another trusted family member, friend or doctor to approach them about your concerns.
- Don’t forget to talk about money: It’s often at the heart of decisions you’ll make as a caregiver. Respectfully ask them to review their bank accounts and health insurance so you can know how much is available to cover potential costs.
- Listen to and respect your loved one’s desires: The person you’re caring for should always participate in discussions about their needs and plans for their future, to the extent that it’s possible.
- Bring others into the conversation: Once you’ve started the discussion, you may wish to ask a few other people close to your loved one—family members or friends—to be part of the process. There may be conflicts, but don’t be afraid to talk through them. Better now than in a time of crisis.
Form a Team
Don’t go it alone. Trying to handle the responsibilities of caregiving yourself can lead to burnout and stress-related health problems. It’s important to reach out to form a larger network of friends, family and community resources that can help you. Remember to consider your loved one part of the team.
- Go deep and wide: Team members need not all live nearby or have huge blocks of time to be of value. Family or friends living at a distance with limited schedules can pitch in with meal organizing, bill paying, or financial assistance. The computer whiz in the family could set up an electronic calendar for dinner delivery or chores.
- Decide who’s in charge: It’s important to have a point person to keep the process moving and make sure everyone on the team understands the plan and priorities. In most families, one person assumes the primary role because he or she lives nearby, has a close relationship, or simply is a take-charge person. That may be you.
- Consider a mediator: It can be useful to engage an unrelated facilitator, such as a social worker or minister, to help keep everyone focused, manage potential disagreements and communicate difficult subjects when meeting with your team.
Make a Plan
Now it’s time to work with your team to develop a plan, thinking both short term—such as determining who will be responsible for each caregiving task—and long term. You can’t anticipate every detail or scenario, but being forward-thinking now will help you respond more quickly and effectively in an emergency. It also helps assure that everyone keeps the focus on what’s best for your loved one.
- Determine roles: Ask your caregiving team members about what tasks they can and are willing to take on, while considering key points. Who is free to travel to medical appointments? Who can prepare meals a few times a week? Who can be responsible for bill paying? If you’re the primary caregiver, delegating even small tasks can make a big difference in your busy schedule.
- Be honest with yourself: What are you prepared to do? If you are uncomfortable with hands-on caregiving tasks, such as helping a loved one bathe, ask if another team member can step in. Or discuss whether there is money available to hire assistance.
- Summarize the plan in writing: A written record will assure that everyone is on the same page and avoid misunderstandings (while remembering, of course, that the plan will likely change as time passes).
- Find the best way to communicate: You may want to set up an email group to keep everyone up to date. And consider using an online scheduling tool such as Lotsa Helping Hands to organize and stay current on who’s doing what, when.
Care for Your Loved One
This step encompasses the others, of course, and every caregiver’s situation is different. But there are a wide range resources and tools that can make your job easier, whether you’re caring for a parent from another state, a spouse with a long-term illness or a family member with dementia. In any caregiving situation, it’s important to know where to get information and assistance.
- Advocate for yourself: Let the doctor know that you are the primary caregiver and need to be informed about your loved one’s condition and the treatments prescribed. Ask for training if you are expected to do procedures you’ve never done at home, such as injecting medication or changing bandages.
- Keep the home safe: If the person you’re caring for has more difficulty getting around or their vision or hearing fades, some simple changes can be made to make their home less hazardous. Consider installing things like handrails, grab bars, nightlights and adjustable shower seats.
- Stay organized: It can feel overwhelming to try to keep track of all the information involved in caregiving—emergency phone numbers, medical appointments, health records.
Care for Yourself
As a family caregiver, it’s easy to forget about your own needs—which is why caregivers are more likely to report high stress levels and suffer from depression, and other health problems. Don’t neglect exercise, sleep and healthy eating, and take time for activities you enjoy. You’ll need to keep up your energy and stay well to care for others.
- Understand caregiving’s costs: Your personal finances can take a hit from family caregiving—which might require time off of work, cutting back on hours, or passing up promotions, as well as paying for things like groceries and prescriptions for your loved one from your own pocket. Try to calculate these costs when budgeting.
- Find out if your workplace is accommodating: Your employer may be fine with your working from home part-time or making certain adjustments to your schedule. If you need more time off, consider asking whether you are covered by the Family and Medical Leave Act. (Many are, but if you work for a small company or haven’t worked for your employer long, you may not be eligible.)
- Give yourself a break: Sometimes caregivers feel guilty about taking time to have fun. Find ways to reduce your stress and enjoy yourself. Many turn to yoga or meditation, or arrange a weekly movie outing with friends. Think about what activities you find relaxing and/or energizing and put them on your to-do list.