Most family caregivers recognize that occasionally, outside help must be arranged. Perhaps the person you care for has taken a turn for the worse, and you're in a crisis situation managing new responsibilities. Or maybe you're just realizing that you can't be there 24/7 and you need a little time to yourself. Recognizing the need to offload some tasks may be the best way for you to manage your caregiving responsibilities over the long-term.
Asking for help makes sense and is definitely a step in the right direction, but many family caregivers encounter what seems like an insurmountable hitch. "My mother just doesn't want anyone else involved," says one of the women in my Caregiver Support Group at the not-for-profit Visiting Nurse Service of New York, "and she won't budge!" It can be quite disheartening to face this resistance, so much so that some caregivers throw in the towel, resigning themselves to the idea that they will remain the "Lone Ranger."
I encourage people not to give up too easily. It's not uncommon for caregivers to hear that their family member doesn't want outside help at first. Our aging loved ones may feel embarrassed about needing help, or they may feel uncomfortable with some of the limitations that go along with the aging process; they may even be afraid they're headed for a nursing home if they admit to needing help. It can take time to help them accept and understand that they may need more care than you can provide -- but that you'll still be there for them in significant ways, and that there are experts who can help make living at home safer and much more comfortable.
One of the most important first steps in easing your loved one's resistance is getting professional input from a trusted health professional who can assess your loved one's medical needs as well as your ability to provide ongoing care. Home and community-based healthcare options range from a few hours of personal care and companionship, to social programs for seniors, to live-in assistance around the clock -- just to name a few of the possibilities.
Hiring the right home care worker is an important consideration -- personalities and skills need to match. If your family member has a medical need that requires a registered nurse, Medicare or your insurance may pay for visits from a certified home health aide. If your family member does not meet the needs criteria for Medicare, you might want to hire a private duty aide or home attendant and pay for it yourself. For any help you are considering, you should discuss what services are needed, what is covered by insurance and clearly outline all tasks to be performed.
To define roles broadly:
- Certified home health aides deliver personal care (such as bathing or dressing), check vital signs under specific circumstances and help keep track of symptoms. They can also shop for and prepare healthy meals that may be prescribed by a dietitian, as well as assist with laundry and household chores.
- Home attendants (also called personal care workers) help only with basic activities of daily living and cannot perform the health care functions of home health aides. They help with bathing, dressing, grooming, making patients more comfortable at home, shopping, paying bills, doing laundry and taking your loved one to medical appointments.
Both home health aides and home attendants can provide valuable companionship to your loved one, which will give you, the caregiver, a break. So soldier on; and follow these steps to a more balanced life for both you and your loved one.
- Work to find a personality match. When matching an aide with your family member, tell the agency what your family member likes to do, the language he or she speaks, specific preferences for cooking, and if they would prefer someone with a reserved or outgoing demeanor. And be honest if your family member is resistant to help. Certain home care workers are especially skillful at working with resistant patients. A good match early on may go a long way toward a successful relationship.
- Try to understand the reasons for your loved one's resistance. Is it a fear of dependence, loss of dignity or financial worries? Try to talk with them about these feelings, so they know you are hearing them. And give your family member as many choices as possible. The worst thing you can do is come in like gang-busters and take away all control; this will only increase their fears and thus their resistance.
- Start small. Don't expect a resistant family member to take full-time help right off the bat. A few hours a week may be a better way to start. You may have to pay for a minimum number of hours (many home health aides have a 4-hour minimum), but in cases of extreme resistance, start by leaving your family member for only an hour of that time and see how it goes.
- Allow your family member to do for themselves as much as possible. It's important for a resistant patient to feel in control. It may be necessary for the aide to stay in the background at first, waiting patiently while your loved one does things for themselves. Some professionals like to take control, and thus risk making a patient feel infantilized. When a patient is resistant to help, it's especially important that a home care aide allow them to call the shots, not helping them at every turn.
- Appeal to your physician. If, after finding the right match you are still facing resistance, try appealing to your physician. Sometimes a doctor can give a medical perspective as to why help is needed. Many patients respond to that.
If all else fails, and your loved still will not take outside help, accept their decision to remain without. Put the home care worker on hold and hire someone to help you as the caregiver -- whether it's cleaning house, assisting with the finances, or hiring a catering service. Offer help again soon, but in the meantime, know you that are doing all you can as a caregiver, and don't feel guilty.