10 Things I wish I had known about caregiving
Though every caregiving situation is different, there are some aspects of caregiving that apply to all caregivers. This article lists 10 things every caregiver should know.
1 . You are a caregiver.
Anyone giving unpaid care to someone who needs help taking care of themselves is a caregiver. Yet, an AARP study showed that only 1 in 5 people who meet this definition actually think of themselves as caregivers.1 This means 80% of caregivers either don’t know or don’t accept that caregiving is a part of their identity.
Why does this matter? Those who think of themselves as caregivers are far more likely to seek out resources and reach out for help, support, and guidance.2 They can develop the sense of community and purpose that is so crucial to their mental and physical well-being. In addition, they report having more confidence in talking to health care professionals.3 All of this translates to happier, healthier caregivers, more sustainable caregiving, and loved ones who can feel assured that they are getting the best care a person can provide.
2 . A little education goes a long way.
Feeling overwhelmed and out of control often comes with the territory of caregiving. Few people have training in decoding medical terms, carrying out the needed care techniques, diagnosing a person’s health condition, and so on. Many caregivers cope with care scenarios that even professional health care providers find difficult.
The best way to feel more capable and confident is to do research. Ask care providers lots of questions and read articles from trustworthy sources such as Maia Care.
Only about half of all caregivers (and only 6% of those over age 55) routinely use any kind of technology, even mobile phones or websites, to help with caregiving.4 Buck the trend by learning about caregiving from interactive apps such as Maia Care and the diagnostic quizzes from the federal government’s Medline Plus site.
3 . Caregivers are not alone.
With 53 million unpaid caregivers in America,5 it’s hard to imagine anyone feeling alone in their caregiving situation. Yet, caregivers often feel like they are the only ones stressed and struggling, with no one to turn to for support. In fact, there is an abundance of help for caregivers:
- Support groups, both in-person and online, provide a sense of community, a place to vent, and a source of practical information.
- Websites and health care apps such as Maia Care can be a tremendous help in providing easy-to-understand information, diagnostic questionnaires, and features that allow the caregiving team to share notes and coordinate care.
- The local Area Agency on Aging (AAA) can provide information about many other resources, including its own Family Caregiver Support Program and the National Family Caregiver Support Program.
- Long-Term Care Ombudsman in every state can help with problems and complaints regarding care facilities.6
- Various local respite programs can give caregivers a much-needed break from caregiving duties.
- The Eldercare Locator can help with finding additional resources.
- Many excellent organizations are standing by to make caregiving more manageable; these include the Family Caregiver Alliance, the Caregiver Action Network, and Next Step in Care.
4 . Caregivers must set boundaries and limits.
Many people find themselves in caregiving scenarios without even knowing what boundaries and limits are—never mind how to set, communicate, and protect them. When plunged into the mix of family relationships, demands, and expectations, it’s easy to say “Yes” to the point of exhaustion.
Boundaries are self-protecting decisions a person makes about how they will allow other people to treat them. Limits are self-protecting decisions a person makes about what (and how much) they will and won’t do. Setting limits and boundaries is absolutely vital to managing caregiving in a healthy, sustainable way.
If faced with backlash, caregivers can try presenting limits and boundaries as a set of options instead of ultimatums. For example, they could say, “We can reduce my caregiving hours by having another family member take a couple of shifts or hiring an in-home worker. It isn’t possible for me to keep putting in this much time.”
5 . Social connection is a lifesaver—literally.
Isolation and loneliness shorten the lives of older adults. In fact, it is thought that they can be as bad for physical and mental health as smoking, obesity, or inactivity.7 Feeling socially isolated or lonely makes older adults dramatically more likely to develop dementia, get heart disease, have a stroke, be hospitalized, die early, be depressed, or even commit suicide.8 In addition, the more isolated an older adult is, the more likely they are to fall victim to elder abuse.9
The flip side is that social connection is a lifesaver and life-prolonger. Seeing other people and having good relationships is the key ingredient in happiness, and happiness is the key ingredient in living a longer life.10 All types of socialization and relationships count: close friendships, family relationships, chats with strangers, video calls, and good old-fashioned phone calls.
There are many ways to keep a person connected socially, from setting up remote sessions with grandchildren via a tablet to adding more people to the care-plan’s roster of visitors.
6 . Legal and financial documents are crucial.
Legal and financial matters may seem daunting and tedious. It’s totally understandable to want to put off dealing with them or view them as optional. What any experienced caregiver knows, however, is that failing to deal with these issues and create legal and financial documents can be nothing short of disastrous.
- Without a will, living will, and advance directives, the caregiver and medical professionals are flying blind when it comes to the wishes of the person receiving care.
- Without financial, legal, and medical powers of attorney assigned, no caregivers or family members will be able to do things such as pay bills, handle health insurance, or make medical decisions on the person’s behalf.
- Without HIPAA clearance, nobody will have the legal right to access even the most basic medical information about the person.
In short, caregiving can’t really happen without core legal documents in place. They should be created as early as possible in the caregiving period.
7 . Safety is a big deal.
Keeping the person receiving care safe is a big part of the job. Falls are a major source of injury and death for older adults, and they can happen very easily when the person grows weak or unsteady on their feet, starts losing their eyesight, or develops dementia. There are also safety problems such as bruising from walking into things, wrenching from reaching for an object or trying to keep from falling, and wandering off (as a symptom of dementia).
In most homes, there are safety hazards everywhere. Even the person’s pet becomes a trip hazard if it’s allowed to get underfoot.11 Many of these dangers can be minimized by:
- putting in anti-fall elements such as grab bars, no-step showers, ramps, and chairlifts
- increasing the lighting
- making sure there’s an emergency-response system such as a pendant or voice-activated medical alert
Various government and community programs offer funding for these measures. And keep in mind that even when it’s for the person’s own safety, it can still feel disruptive and upsetting to them. Proceed, as always, with kindness and patience.
8 . Difficult conversations are unavoidable.
Caregiving involves dealing with aspects of another person’s life that are usually kept personal and private. For this reason, there will be many difficult discussions on sensitive topics, and “having the talk” is something that most family caregivers will need to do more than once.
Early on, these conversations may involve legal and financial topics, such as whether the person has made a will and living will, whether they have money to cover care costs, and if they are starting to need care. Further on, conversations may be needed about whether they should still be driving, which family member they want to give power of attorney to, and if their health problems mean they would be better off moving to an assisted living or skilled nursing facility. And then there are the difficult talks about elder abuse and end-of-life treatment.
One of the best things a caregiver can do when taking part in these conversations is to take them seriously and use the following strategies:
- come to the conversations calm
- make it clear that these “intrusive” conversations are coming from a place of concern, kindness, and love
- be prepared and communicate clearly
- use “I” statements to keep the person from getting defensive
- listen respectfully to the other person’s input
9 . Negative emotions are natural and okay.
Frustration, impatience, resentment, anger, hostility, dislike: These are emotions that many caregivers feel. They are normal and natural—but people often feel guilty for having such emotions, especially if they act on them by snapping at or being unpleasant to the person receiving care.
It is important to recognize that nearly every caregiver has these feelings. Those who are giving care to patients suffering from memory loss, dementia, or other forms of cognitive decline usually have it even harder, as these people may behave in irrational and sometimes abusive ways.
To keep from crossing the line into abusiveness themselves, caregivers should find supportive, non-judgmental people (perhaps close friends or members of a support group) to vent to. And if these feelings arise more often, take it as a sign that the care situation needs to change, even if it’s just by arranging for regular respite care. Meanwhile, get some professional counseling.
10 . Caregivers can (and should) put themselves first.
It is easy to make the mistake of putting a loved one before oneself. After all, the people receiving care are the ones who are obviously in need, and in many cases they are in the later stages of their life. However, there is serious harm in setting aside one’s own life and priorities.
A high percentage of caregivers become depressed, have trouble sleeping, gain weight, and start to overuse drugs and alcohol. They may neglect their own care and develop serious health problems.12
Take a cue from the instructions given on a plane: in the event of an emergency, put an oxygen mask on before helping someone else with theirs. The best caregiver is a healthy, functional one who has prioritized finding ways to make caregiving emotionally, physically, and financially manageable.
Communicating with an older adult about their wishes
Deal with caregiver burnout
Get help and support
HIPAA authorization for medical records
Join a caregiver community
Overview of financial planning
Overview of health care documents
Overview of legal documents
Take care of yourself emotionally
Take care of yourself physically
External supporting content
1 AARP Caregiver Identification Study. AARP.
2 Self-identifying as a caregiver: Exploring the positioning process. Journal of Aging Studies.
3 Self-Identifying as a Caregiver: How the Truth May Actually Set You Free!. Benjamin Rose Institute on Aging.
4 U.S. Caregivers’ Use of Technology. AARP, 2022.
5 Full Report: Caregiving in the U.S. AARP and National Alliance for Caregiving.
6 Long-Term Care Ombudsman Program. U.S. Government: Administration for Community Living.
7 Loneliness and Social Isolation Linked to Serious Health Conditions. CDC.
8 Loneliness and Social Isolation Linked to Serious Health Conditions. CDC.
9 Elder Abuse and Neglect. HelpGuide.
10 The biggest lesson from the world’s longest scientific study of happiness. Today.com
11 How to Make a Home Safe for Your Aging Parent. AARP.
12 The Impact of Caregiving on Mental and Physical Health. BlueCross BlueShield. Full Report: Caregiving in the U.S. AARP and National Alliance for Caregiving. Caregiving for Family and Friends — A Public Health Issue. Centers for Disease Control and Prevention.