At some point, most of us will take on the role of caregiver. You may be caring for your parent or older family member, a spouse or partner, or a close friend. As the population ages, the number of people in the US who are caregivers is growing significantly. Caregiving in the US 2020, a report from The National Alliance for Caregiving, found that the number of people who are caregivers (defined in this report as someone providing care for an adult or a child with special needs) reached 53 million in 2020. That’s a 20% increase from 43.5 million caregivers just five years ago. Many of these people (24%) are acting as caregivers for more than one person and 61% of them are also working while serving as caregivers.
It’s a trend that’s affecting people in all age groups according to the data. The report noted that a growing number of younger people are becoming caregivers, with approximately a third of caregivers falling into the 39 or younger age group and 6% who were 23 or younger.
Build a plan before the need for caregiving arises
Caregiving can be complicated, difficult work that’s often made even harder when someone has to jump into a caregiving role without time to prepare or plan. Proactively planning and preparing for the role of caregiver is key. Start these steps well before you need to start caregiving.
Begin the conversation about caregiving. Talking about the need for a caregiver can be a difficult conversation, especially for the person who will need the care. Waiting until care is needed, however, will put you at a disadvantage. You’ll be rushed as you try to find and connect with resources and figure out how best to meet your loved one’s needs.
The better plan is to start talking about their wishes, preferences, and concerns before they receive a serious diagnosis or develop physical or cognitive issues. One way to start the conversation is to make it a dialogue. Start by explaining what you’d like to happen if you were seriously ill or injured, then ask how they envision handling a similar situation. This will be an ongoing conversation as they consider their options and as their needs and wishes change over time.
Make sure you have these essential documents. As a caregiver, you will need your loved one to complete and provide you with:
- An advanced health care directive or living will so you know what types of care they do and do not want to receive.
- Medical and general powers of attorney that authorize you to make medical, financial, and other important decisions if they’re not able to.
- HIPAA authorization so medical providers can share information with you.
- POLST (Physician Orders for Life-Sustaining Treatment), which are medical orders that inform health care providers what types of care they do and do not want in specific situations. This does not replace the advance directive.
- A willa letter of instruction outlining wishes for the memorial service, organ donation, and other end-of-life issues, and key information that will allow you to access banking and investment accounts, online bill pay accounts, social media accounts, and insurance.
Gather medical records into a single source. Most older people see several physicians, take multiple medications, and have records from a lifetime of tests and hospital stays. These may be scattered among several providers and medical centers, increasing the risk of medical errors, fragmented care, overmedication, and medication interactions. To prevent these problems, as well as to ensure they’re getting recommended follow-up testing and care, create a comprehensive medical record and regularly update it. Talk with their primary care physician to find out if they’ve already consolidated these records. It may be helpful to have both a hard copy and an electronic copy of these records.
Don’t neglect your own wellbeing. The National Alliance for Caregiving report highlighted another important aspect of being a caregiver—the effect of caregiving on physical and mental health. Of those surveyed, 23% said caregiving had made their own health worse, an increase from 17% in 2015. While it can be difficult to find the time, it’s important not to ignore your own health. If possible, share the work of caregiving with other family members or friends, or hire a professional caregiver to supplement the care you provide. It can also be helpful to join caregiver support groups to share strategies and experiences. Stay up-to-date on your own health care, try to eat a healthy diet, get regular exercise (which benefits your physical and mental wellbeing), get enough sleep, and practice stress management.
Miles J. Varn is chief executive officer, PinnacleCare, and can be reached on LinkedIn.
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