When a family member is newly diagnosed with dementia, it may seem like involving other people in your family member’s care would only complicate matters. As Deidre Solon, who cared for her father after his Alzheimer’s diagnosis, once described it: “This house already seems like a three ring circus. Why would I want to add more clowns to the mix?”
While the task of putting together a team might seem daunting, caregiver stress left unchecked can cause many problems of its own. Studies have found that caregiving—and more specifically, dementia related caregiving—can impact the mental health of caregivers, as well as their physical health. But individuals participating in organized group caregiving beyond the nuclear family unit report an 83% decrease in experience of burden and as a result were often able to maintain social and career connections.
Where to Start
The first step in developing your caregiving team is to take stock of your current resources and your current and future needs. Ask yourself: What times of day are most difficult? What tasks and responsibilities are particularly difficult for you to squeeze in? What feels like it’s being perpetually left undone? Where in your life is caregiving most impacting you (e.g., career, relationships with children, etc.), and how does this happen? This is not the time to consider whether you’d let someone else take over any given responsibilities; we’re just getting it all on paper first. If you are having trouble teasing out the answers to these questions, ask a friend or family member to help you answer the questions with what they see through their eyes.
Evaluate Available Resources
Second, consider all the current resources that are available to you. Start with professional resources: explain the situation to a social worker or case manager at the medical facility where your family member receives care and ask if they can think of any other resources you are eligible to use. Often large facilities have provisions for taxi vouchers to help with transportation to appointments. Some organizations even offer volunteers who help with transportation. Call your local aging office to ask if they know of one. Also, if you live in an area where public transit exists but is not physically accessible, the local transportation entity is required by law to provide alternative transportation for people with disabilities. Contact them and ask about qualifying for paratransit, which picks up and drops off patients at their exact destinations.
You might be eligible for help in the home from your insurance company. Double-check this directly by calling the toll-free number on the back of your card. If your loved one is not eligible for skilled nursing care or a nursing assistant, you can sometimes negotiate to have a home health aide come for a few days a week, which Medicare may cover. This person cannot do as much hands-on care, but can help with safety monitoring, providing stimulation and conversation to your loved one, and they may help with light housekeeping. If they deny the extra help, you usually have the right to appeal the decision; get it in writing and ask to speak to the next level supervisor. In addition, insurance companies often have high utilization patient care managers, who are tasked with preventing hospital readmissions. If you can make a case that having more help at home will lead to better outcome (and less bills for insurance to pay) they can often override an initial home care refusal.
Check with local faith communities and health profession training schools to see if they have volunteers or students who need college credit who might be able to help a few hours a week.
Next, make a list of everyone who has said, “Let me know if there is anything I can do to help.” Don’t try to figure out now if their offer was made in earnest; people will surprise you. One of the cardinal rules of caregiving is that support comes from surprising places. Some folks might not have known to offer their skills, but could very well be interested in helping out with specific responsibilities. Think about any communities you or your loved one are involved in and any smaller groups within those communities (e.g., the choir of a church). Think about people who live close to you, coworkers or former coworkers, and any specific interest groups that have been a part of your life or your family member’s life over the years. Add those names to the list.
Third, look at your list of hard times/places/difficult tasks and consider: Is there anyone on your list who seems like a good fit between the help you need and the help they could give? Some obvious pairings will appear. For example, perhaps it’s very difficult to get your young children dinner on the days you take your family member to medical appointments AND you have a friend who is a creative cook. Could they bake and freeze a few casseroles for your freezer? Or maybe you have a friend who loves to drive and enjoys your kids; they could take them to school on appointment days. Matching abilities and tasks skillfully also entails considerations of your friends’ and family members’ personalities and quirks; your musician friend who is rarely up before noon probably shouldn’t help you with early morning appointments, but they might just the person to call if you need a ride to the ER late at night. You can also think in terms of not just addressing the needs of your family member but your needs as well; one quarter of all family caregivers of patients with dementia report delaying their own healthcare. Supporting your family so you make your own appointments is a valuable contribution.
Getting Your Family Member on Board
In order to minimize resistance from your family member, make sure that—as much as possible—they are part of this decision-making process. Explain that it’s important for you to be able to continue to provide them whatever help they need, and that getting help for you will ensure this. At first you’ll want to focus on small, specific, non-intimate logistical responsibilities that support you as a caregiver and your entire family unit: rides, help with meals, help with childcare, assistance with paperwork and advocacy.
It’s natural at this point to feel some internal resistance as well—it’s hard to invite people into a private, painful and emotionally messy part of your life. But taking on all aspects of dementia caregiving can be extremely draining and finding help is often the only way to ensure sustainability. It might help to remind yourself that people want to help and that you’re actually doing them a favor by giving them some real guidance about what you most need and how their skills and gifts can lighten the load for your family. Even just providing peer support or listening to you vent can have long term positive impact on your experience of caregiving.
Once you’ve tried letting more folks onto your team, you can do some troubleshooting (what worked/what didn’t/what changes need to be made) and then consider automating or formalizing your team a bit. You can use a text or phone tree or an online shared calendar. If most folks in your group are tech savvy, you can use one of the websites or apps created for this purpose, like Lotsa Helping Hands, CaringBridge or CareZone.
When time and energy are scarce, using both to take the initial steps to start a caregiving team might seem impossible. But if you start slowly and troubleshoot the process as you go along, it’s a valuable investment in providing your very best, sustainable care to your loved one.