For the last three years, my family has cared for my grandmother at her home by cooking her meals, ensuring she takes her medication, and socializing with her. While caregiving has improved my grandmother’s quality of life, it was more taxing at first than we thought, often being an expensive, lengthy, and stressful part of our day. Now, we’ve developed a caregiving plan that includes others who can help manage certain tasks. This ensures my grandmother gets the help she needs while also allowing us, her primary caregivers, to manage our own lives.
As the Baby Boomer generation gets older, the need and awareness of proper caregiving is becoming increasingly more important. According to the U.S. Census Bureau, by 2034, there will be 77 million people 65 years and older compared to 76.5 million under the age of 18. This will be the first time in U.S. history that the number of adults outweighs the number of children under 18.
With this unprecedented event on the horizon, Sally Fittsizer, volunteer at Arkansas AARP and leader of AARP’s speaker’s bureau, says that it’s time to start the caregiving conversation with our older family members (and those who will need care in the future). “Every caregiving situation is unique, but AARP gathered information from experts in the field to develop a Prepare to Care DIY guide that includes five key points that support both the caregiver and the person in need.”
- Start the conversation.
- Form your team.
- Make a plan.
- Find support.
- Care for yourself.
Start (and continue) the conversation.
Starting the conversation early with the person who needs help is important. “Most people wait until after a crisis to start the caregiver conversation,” Sally says, “but then you’re dealing with so many other things that it can be hard to prepare yourself and your parent or aging family member about the caregiving process.” Once you start the conversation, keep it going. Ensure that your conversations include the person being cared for.
Focus the conversations on need. “Learn to ask the right questions to prepare the older person for what’s ahead,” Sally says. “Is your father going to come live with you? Will he continue to live independently with a visiting nurse? Will you put him in an assisted living facility?” Learn what’s important to the person you’re caring for and begin planning around their values. “What’s important to them? What hobbies do they want to continue?” Sally adds.
Timing is key. Sally recommends using “instances” to begin or continue the caregiving conversation. “If they left the stove one while they were out of the house or got lost while driving, that’s a good time to talk about it.” Using instances to reinforce the need for additional support and make plans to avoid the next incident is a great way to ease into the conversation while still being sensitive to the other person’s feelings.
Whenever you do have a conversation, it can be common for the older person to shut down or feel uncomfortable. “Often, the person who will be the primary caregiver will not be the one to start the conversation,” Sally says. “It could be a sibling, a trusted friend, a neighbor, or a pastor. Someone outside of the immediate caregiving circle who can begin the conversation may be more effective.” No matter who initiates the conversation, it must come from a place of trust and respect.
Form your team.
One of the most important factors of being a caregiver is recognizing that you cannot do it all yourself and adequately care for yourself at the same time. “Call upon your siblings, neighbors, and old friends to help,” Sally explains. “Start with assigning them the small things: sign this birthday card for my mom, purchase these groceries for us, pick up her mail.” When it comes to larger, more essential needs, don’t be afraid to hire someone.
“Rely on the expertise of those around you,” Sally says. Maybe someone is better at cooking. They might be in charge of the meals. Another person may be a financial expert. They can manage the checkbook and expenses. “Create a notebook of team members and their respective tasks and share it with your team. That way, you know who is doing what and when,” Sally explains.
For those with diagnosed disorders, such as dementia or Alzheimer's, call their primary care providers for help. “Physicians and specialists understand the trajectory of what is coming for patients with Alzheimer’s and dementia and can help you prepare better,” Sally says. The Alzheimer’s Association has excellent resources and information about how to care for patients who have been diagnosed.
Make a plan.
Once you have a team together, it’s important to involve everyone, including the person you’re caring for, in creating a plan that works. “Explore the options available in your community and bring in team members to help manage the workload,” Sally says. “You can assign tasks in person, via a phone call, or in an email. It doesn’t have to be fancy or excessive, but it’s important to use the details, plans, and goals as your guide.”
It's also important to base your plan on the individual’s needs. “Speak with their primary care provider, who can perform an assessment of their abilities,” Sally adds. Have the person you’re caring for do everything they can manage independently. An older person may still be able to travel, pay their bills, or cook meals on their own. The plan you create with them should involve doing things they cannot do on their own.
“When you get together to plan with the team, take notes, have meetings, and reach out for assistance as needed,” Sally says. “The team and the plan go hand-in-hand.”
Find support.
Your team and plan can only go so far. There are things you won’t ever be prepared for. And that’s okay! What matters is that you know where to look when the unexpected occurs. There are several online resources you can use to assist you. AARP has caregiving guides with tools and resources to help you with your caregiving responsibilities.
“Every county in Arkansas has an Area Agency on Aging that can help you find programs and assistance for caregiving and services you can provide to your aging family member,” Sally says.
“CareLink also provides several resources for connecting you and your loved ones to resources in your local area that can help them meet their needs, such as transportation, care coordination, senior centers, nursing homes, and Meals on Wheels.”
Eldercare Locator is also an effective resource for navigating elder rights, insurance, and benefits. It also serves as a pipeline to additional support services in your local community that can help meet your older loved one’s needs.
Care for yourself.
Self-care applies to you and every member of your caregiving team. “Many caregivers are older, so it’s important to eat well, stay physically active, get restorative sleep, keep your medical appointments, continue your medications, and continue the treatments your doctor recommends for you,” Sally explains.
Caring for yourself also involves organizing and managing your caregiving tasks. “If you don’t live nearby, consider investing in personal emergency response systems, remote monitoring devices, and electronic calendar reminders,” Sally says. “Keep a list of important contacts for you and your team members, as well as the medications your loved one needs to take.”
Many caregivers are also working part-time or full-time jobs. Learn your company’s policies and benefits that support caregivers. Take advantage of your flextime or consider working from home so that you can open up your schedule to take care of your caregiving duties. If you need to take time off, consider asking your work whether you’re covered by the Family and Medical Leave Act.
Caregiving can be expensive. You have to buy groceries and medications, take time off of work, and sometimes pass up promotions. Take time to calculate these costs and create a strong budget to keep your income greater than your expenses.
“Part of caregiving is learning to care for your own needs,” Sally says. Some people may see caregiving as a way to strengthen their relationship with their family members. Others may see it as a forced responsibility. That can cause resentment or anger. Learn to deal with those emotions and take steps to cope with your stress.
You could also join a caregiving support group. These groups provide you with an opportunity to listen and speak with others who are going through the same caregiving journey. Chances are, others have the same concerns, questions, struggles, and feelings that you have. Practice self-care so that you can be a better caregiver for others.
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