Getting the Time Off and Help You Need

Physicians, counselors, and social workers who work with Alzheimer's caregivers are unanimous in the opinion that caregivers must arrange time off for themselves at regular intervals, preferably frequently. But some caregivers feel that spending time away from the affected loved one is "selfish." On the contrary. If you want to provide quality care, time off, or respite, is an absolute necessity. Here's why:


  • Time off allows you to rest and recharge your physical and emotional batteries. Alzheimer's caregiving is a 24-hour-a-day job. But no one can work 24 hours a day and perform well over time. You need some respite for both your own sanity, and to maintain quality care. Do things you like to do. Have fun. You deserve time off. Take it.




  • Time off allows you to invest some energy in your other relationships. Spouses, children, friends, and other relatives -- all those relationships require nurturing. The world of the Alzheimer's caregiver often collapses into just you and the affected loved one. When taking care of someone with the disease, it's natural to put relationships with acquaintances on hold. But don't do that with people who are important to you. You need them, and they need you.




  • Time off allows you to attend a support group. Support groups are a godsend for caregivers. The latest research shows that the support, suggestions, and resources they provide can delay nursing-home placement by about a year.




  • Time off allows you to make arrangements for the affected individual. It takes time and focus to deal with many of the implications of Alzheimer's caregiving, such as financial and legal matters, visiting agencies, daycare centers, and nursing homes. If the person with Alzheimer's is with you, you may not be able to concentrate on matters that deserve your undivided attention.


Of course, taking time off requires making arrangements, and often paying for outside care. Like so many other aspects of Alzheimer's care, the key is to get organized. Look at your loved one's remaining abilities. Decide what kind of help works best for the person and for you. Then look at your week, and arrange to have some blocks of time to yourself.



Here are some suggestions:

  • Consider non-caregiving help. You might want help caring for the affected person. Or you might want help with non-caregiving chores so you can devote your time and energy to Alzheimer's care. In general, it's easier to arrange for non-caregiving help because it's less demanding physically and emotionally.




  • If you love to cook, or garden, or do laundry, or clean house, by all means, keep doing them. But most people would gladly give up at least some household chores if they could, especially when they're preoccupied with Alzheimer's caregiving.




  • Consider hiring a neighborhood teen to tend your garden, shovel snow, run errands, or do other chores for you. Teens are often glad to work for the minimum wage, and in addition to making money, they gain invaluable experience about life by being around you as you care for your loved one. Incorporating neighborhood teens into your care plan also helps your neighbors adjust to the idea of having a person with Alzheimer's in the neighborhood.




  • Consider hiring a neighbor to help with your housekeeping. Compared with teens, homemakers, retirees, disabled people or other nearby adults with time on their hands can manage more responsibility -- and may not charge much more either. A network of nearby helpers can work wonders for your peace of mind when minor emergencies arise. And neighbor-helpers assist the neighborhood in adjusting to having a person with Alzheimer's disease in the area.




  • Consider delivery services. Most cities have grocery-delivery services for elderly and disabled people, or for people who simply would rather not shop. An increasing number of restaurants deliver, and many areas have Waiters-on-Wheels-type services -- special services that publish books of menus from selected restaurants, pick up meals you order, and deliver them to you. A few take-out or delivered meals a week can be a tremendous help. Many areas also have low-cost Meals-on-Wheels programs for the elderly and disabled.




  • Caregiving help from family members. Family and friends might help with non-caregiving chores, but you might want to "save" them for caregiving help. However, this can be tricky. Sometimes, as it becomes clear that the affected person can no longer live independently, family members promise to "be there for you" when you take the loved one into your home or move in with the person. They may come through. But sometimes vague promises don't translate into real help. This is not only disappointing, it can also cause deep resentments, especially if the promise of help played a role in your decision to take on Alzheimer's caregiving.



    If at all possible, before you begin caregiving, sit down with relatives who say they want to help and get them to commit to specific times on specific days, or specific chores. Ideally, get these commitments in writing. Asking for specific written commitments does not mean that you mistrust your relatives. You are about to embark on one of the most challenging tasks a person can undertake. You need to know exactly what kind of help you can expect. When commitments are left vague, misunderstandings are much more likely. Get it in writing.




  • Share-care. Who knows as much as you do about Alzheimer's caregiving? Other people who are doing the same thing. If you belong to an Alzheimer's support group, perhaps you and another member can arrange to take turns giving each other time off by caring for both of your loved ones. Of course, this may be tough for the person doing the caregiving. But depending on your loved ones' stage of the disease and how well they get along, they may help amuse each other and take pressure off the caregiver.




  • Caregiving help from friends. This can also be tricky. Friends often want to help, but it can be difficult to know how much help they are truly willing to provide and how often. Some caregivers wind up imposing. Others are afraid to ask for help for fear of imposing. The best course of action is to have a heart-to-heart talk with close friends before you become a caregiver. Tell them you're seriously considering caregiving. Talk about your feelings and the changes the move will bring to your life and your friendships. Don't ask for help, but if a friend offers, ask for the same specifics you might ask of a relative. Don't be surprised if friends follow through for a while, and then withdraw.




  • Help from religious or social organizations. Church or social organizations (Lions, Kiwanis, Junior League, etc.) may be willing to help out from time to time, especially with specific projects, for example, spending one day moving your loved one from independent living into your home. Assess your extended social support network, and then consider how to use it most strategically. Church groups and other clubs may not be willing or able to commit to ongoing help, but every now and then, they might be very helpful.




  • In-home aids. Many different types of people can provide in home care. The most skilled -- and expensive -- are nurses. Nurses can be invaluable if the person has a physical illness or disability that requires nursing care. If so, Medicare may help pay for in-home nursing care. But most people with mild to moderate Alzheimer's disease don't need highly skilled nursing care. They're reasonably healthy -- except that they have Alzheimer's.



    Other types of in-home helpers function more on the order of paid companions and sitters. Their training varies, and some may have had no formal training at all. Get referrals from your Alzheimer's caregiver support group, the Alzheimer's Association, other local senior citizens organizations, social workers, or religious organizations.




  • Adult daycare. Adult daycare not only provides welcome respite for caregivers, but quite frequently, it also provides clear benefits to people with Alzheimer's disease. Just as you need time away from your loved one, people on the receiving end of Alzheimer's care often feel a need for time away from their primary caregivers. They often enjoy being around people their own age in a facility that caters to their needs and interests in ways you may not be able to, for example, by playing the music they grew up with. Alzheimer's caregivers often find that once their loved ones get used to going to adult daycare, they look forward to it, have fun, make friends (to the extent they can), and return home more relaxed.



    Adult daycare centers offer a variety of group activities, such as music, games, stories, and exercise, along with lunch, snacks, and sometimes pick-up and drop-off service. Different centers offer different programs. Visit the one(s) in your area and see which one you like best.



    Evaluate adult daycare centers as you would a nursing home. But because your loved one does not live there and may only participate a few days a week, you don't have to be quite as picky. Adult daycare centers typically admit participants with a variety of health problems, but the one(s) in your area may or may not welcome people with Alzheimer's disease. On the other hand, some centers specialize in people with dementia.



    Daycare can also help pave the way for eventual nursing-home placement. Some daycare centers are affiliated with nursing homes. The combination often eases the transition into nursing-home care because by the time the person needs to become a resident, the facility and staff are familiar.




  • Short-stay nursing homes. It's a special tour, or a big anniversary, or a major family celebration halfway across the country. You'd love to go, but your loved one with Alzheimer's is not up to the trip, and there's no one willing to be the caregiver for the 10 days you'd like to be away. Some nursing homes are set up to allow for short stays. Only a minority of nursing homes do this, but if one near you does -- or even one a few hours drive away -- the service can be a wonderful respite for you.