Author: Anne Bogardus, Founder and former caregiver
Family caregivers who take care of their aging parents, in-laws, or grandparents, are amazing. They take on a huge responsibility, one that is filled with the stresses of illness, redefined relationships, financial concerns, and, oh yes . . . trying to have a life of their own. These caregivers come in many forms: moving in with the parent, having the parent move in with their family, living nearby and checking in on a regular, some times daily basis, overseeing the care a parent is receiving in a hospital, skilled nursing, or assisted living facility, and often caring long distance. Each of those situations has its own set of stresses and concerns, and all impact the caregiver’s life in significant ways. Parent caregivers who share a home with their parents often find themselves on call, if not actually hard at work, 24/7/365. Caregivers who find themselves sharing living space with a parent who requires round-the-clock care or supervision due to a medical illness or cognitive decline from some form of dementia live with unrelieved stress. Factor in a spouse, children, job, and friends who need or want attention, and these caregivers find themselves pulled in multiple directions much of the time.
So, what to do? Family caregivers are not protected by federal or state laws that require employees to take meal or coffee breaks, so there’s no “boss” or HR department telling them to stop for a few minutes to get away from their work. From the caregivers I’ve heard from, this usually means they just keep working because there is so much to do.
This begs the question: is this healthy? Or even a good idea?
The answer to both questions is a resounding “no!” No matter how much you love your parent, working without respite for weeks, months and years at a time damages a caregiver’s health, and studies have shown it shortens their lives.
This begs another question: how in the world does a caregiver find, or make, the time to take a needed break from the demands of caring for an elderly parent?
I know how hard this is to do. When I was caring for my mom and dad, it seemed like there was always a better reason to not take a break than there was to take one. After some gentle nudging from my sister and a very sweet next door neighbor, combined with a lot of research and investigating, I did find some ways to take fairly regular breaks.
The availability of respite services for family caregivers varies widely by state and local community. There are a number of possible options, some free but others require payment. To find out what is available in your area, you can contact your local area agency on aging for more information. Here’s a list of some of the most common free and paid options for respite care.
Free Respite Care Options
- Schedule your break times around your parents’ schedules. If there are times when your parent naps, for example, instead of doing chores or taking care of other business, make it a point to do something you enjoy at least twice a week if you can’t manage it every day.
- Recruit nearby siblings to visit with your parent on a regular basis for a few hours so you have a break and can recharge your batteries.
- Create a caregiver respite exchange. If you have friends or neighbors who are also caring for elderly parents, talk to them about providing respite care for each other—perhaps one of you provides lunch for both your parents every other week so each of you has a few hours to get away from caregiving for a few hours.
- Church, synagogue, or other religious organizations. Many churches have visitation programs where either a minister or members of the congregation visit with house bound or chronically ill members. Some churches participate in Stephen Ministry programs which provide training for church members to offer spiritual support for members during difficult times.
- Neighbors or friends of your parents. If your parent has a close friend, or neighbor, they may be happy to spend some time visiting to keep your parent company while you get out for a while.
- Volunteer visitor programs. Some communities have a Friendly Visitor program run by a non-profit organization. These programs have a variety of names, such as Friendly Visitors or Little Brothers. Regardless of the name, the intent is to match volunteers with elderly adults in the community who may be lonely or isolated to provide them with regular social connections. These programs may be free or charge a small fee.
If your parents have the means, or if you live in a state that provides funds for respite care to those who qualify, there are also some fee-based options for respite care. If the cost of respite care is a concern, there are a few options, but sadly not many. Some state Medicaid programs provide waivers for respite care to family caregivers who meet financial criteria, but, again, not all states do this. You can check with your local area agency on aging to find out if this or other programs in your area provide funds for respite care.
Paid Respite Care Options
- Adult Day Programs. These are a great paid option, and some programs have a sliding fee schedule for low-income seniors. Many of these programs provide transportation to and from the program center, provide a mid-day meal, and offer a variety of activities for participants. Some programs work with seniors who have dementia, but you need to check with the individual program.
- In-Home Care. There are numerous agencies throughout the US which provide certified professional caregivers at different levels: companionship, home health care, housekeeping assistance, personal care, or medical care. The requirements for certification, and the names of the certifications, vary in each state. Your local Area Agency on Aging can provide information on the level of assistance your parent needs based on their abilities and medical needs.
- Residential Care Programs. There may be times when a caregiver needs to be away for an extended period of time, maybe a long weekend to attend a wedding or graduation ceremony, or a vacation with a spouse, or perhaps an illness or other emergency that means you need to be away. A residential care program provides overnight care in an assisted living or skilled nursing facility which provides care for health needs, social opportunities, and assistance with personal care.
If you are still wondering how you can fit this into your caregiving life, let me share with you how I did it. In my case, there wasn’t a single solution—that would have been nice. After months of looking for and trying different options, I cobbled together four that gave me some blocks of time when I knew my dad was being looked after so I didn’t have to worry about him and could work on my business, or take an actual break.
Here are the four options I used to make some time for myself
- Contacted my parents’ church. It turned out they had a Stephen Ministry (a program that trains church members to provide one-on-one care to members during difficult times—including chronic illnesses). A wonderful man named Dave faithfully visited my dad for about an hour every week for over a year, which gave me some time to myself without having to worry about dad.
- Schedule my break times around my dad’s schedule. Since my dad’s sleep schedule was completely out of whack—he’d sleep until at least 11 am or noon most days, and often much later—I kept an ear out for him while I was working on the sun porch building this business. Some days I had most of the day to work, other days not so much. On the downside, the not knowing when he would actually get up made it difficult to concentrate much of the time. Sometimes I’d hear him in the bathroom, get up, starting getting his breakfast ready, only to find he had gone back to bed and was sound asleep. Again.
- Our next door neighbor visited with my dad occasionally. This sweet lady—who was herself in her early 90s—had been a good friend of my mom and offered to sit with my dad occasionally. For some reason, even though she had really been my mom’s friend, my dad thought very highly of her and was always thrilled to have her visit with him. At those times, I could leave the house without worrying about him since I knew he was in good hands.
- In-Home Care. We were fortunate that my dad had a good pension and was able to afford paid caregivers. Unfortunately, the quality of caregivers available for in-home care is not great—there are some true gems out there, but there are many others who are not that great. While having someone in the house on a regular basis allowed me to run errands and buy groceries, the great majority of these caregivers needed constant prodding to do what they were supposed to do. Instead of relieving stress, they added to it much of the time. But, hey—at least we had food to eat!
It is possible to take a break from the stress of caregiving—as in my case, it may not be a single solution, but you may find a way to get respite assistance from different sources so that you have some time to recharge and come back to your parent relaxed and ready for the next challenge.