Preparing for Taking on Caregiving Responsibilities

When preparing for big life events like buying a house, getting married or having kids, many families like to come up with a plan. These plans might incorporate ways to save money, or discussions about values, priorities and preferences in order to successfully attain a goal. But when it comes to caregiving, many families are not as proactive, even though over 34 million Americans provide unpaid care to an adult age 50 or older. In fact, many families wait until a crisis happens to begin important discussions.

This crisis can leave families scrambling to figure out care options, which may increase family conflict, as well as emotional and physical stress for all involved. When planning for our future caregiving responsibilities, or preparing our loved ones to take on our own care as we age, we should hold discussions about finances, as well as values and preferences to help develop a successful caregiving plan.

Caregiving is expensive – be financially aware and prepared

According to a 2016 U.S. Department of Health and Human Services report, on average, families can expect to pay $6,844 per month for a semi-private room in a nursing home, $7,698 per month for a private room in a nursing home, and $3,628 per month for care in a one-bedroom assisted living facility. If a loved one plans on purchasing a long-term care insurance policy, care can still be expensive, and policies can oftentimes be confusing. We should be prepared to scan policies for loopholes, which have led to elder fraud cases throughout the US, to ensure we receive all promised benefits. 

Preparing for these monthly long-term care costs is something that many Americans cannot afford, so providing care within one’s home may be more feasible and is typically preferred by older adults. If we plan to provide care within the home, we should make sure we realistically consider what that might look like financially. According to a 2016 AARP study, it was estimated that family caregivers, on average, spend around 20 percent of their annual income, or $6,954, on out-of-pocket costs related to their caregiving responsibilities. Out-of-pocket costs increased even further for long-distance caregivers, and averaged $11,923 per year. Accounting for the following expenses and situations can help us and our family create ways to budget for, and buffer the financial hardship of, providing care for a loved one: 

• Health care-related costs such as insurance deductibles and co-pays, medications or medical equipment, lengthy hospital visits, physical therapy or mental health services
• Rent or mortgage payments
• Grocery and utility bills
• Travel expenses if we do not live with the loved one we care for
• Household maintenance, safety modifications such as installing grab bars in the bathroom, and repairs
• Relocation and moving expenses if our loved one can no longer live in their current environment
• Pet care
• Long-term care insurance policies
• Changes in income due to time off for caregiving responsibilities such as taking our loved one to the doctor, having to work part-time or taking unpaid leave via the Family and Medical Leave Act policy

Starting discussions about how much time or money each family member would be willing to contribute can help us plan ahead.

Hold conversations about values and preferences

My first caregiving experience unexpectedly began in my mid-twenties when my 57-year-old mother was diagnosed with cancer. Up until that point, I felt very unprepared for the day when my parents might get sick or could no longer take care of themselves. It was at that moment I realized just how necessary it is for families to talk about current and future caregiving plans. 
Family members owe it to each other to talk about their care preferences. It is important to include all potential family members and friends who will provide care, and loved one’s receiving care in these discussions. Here are some helpful tips we can use to start these difficult conversations:

• Does our family find it difficult to discuss sensitive topics like sickness or death? We can try to think of ways to positively frame the conversation and preface the discussion with our desire to get everyone on the same page and to make sure everyone’s wishes are presented and heard. 
• Developing a caregiving plan takes time. We shouldn’t try to address too much in one discussion, and instead spread out topics as necessary. Starting these conversations with loved ones can help family members reflect and process their own needs and wishes, and lead to future discussions.
• Start documenting care values, priorities and preferences in an organized way. This may include writing an outline of important details discussed or using a pre-existing worksheet and guide such as AARP’s.
• Some families prefer to plan a specific time to have these discussions so there are no surprises, and everyone can come prepared. Other families may prefer more natural ways of gathering this information and discussing future caregiving efforts. For example, my family always tackled major discussions while sitting at the dinner table – food was our comfort and we got through a lot while sharing meals. At the end of the day, we should do what works best for us and our individual family and know there are no right or wrong ways to prepare. 

We should remember that a loved one’s values, priorities and preferences should be the focal point of every discussion to ensure the success of a caregiving plan, and it is never too early to start care-related conversations.

For further information on how to create a caregiving plan, visit the following resources:

• WeCare…because you do
• SHARE for Dementia
• Sage’s Create Your Care Plan Guide
• Sign up to receive a free Caregiver Notebook from Springwell
• Purchase a copy of The Complete Eldercare Planner by Joy Loverde