When You Can't Do It Alone

People who take on the job of caring for someone with dementia tend to be dedicated, independent, and resourceful, yet many are reluctant to ask for help. Some see doing so as an acknowledgment of failure. Others are so burdened with responsibilities and tasks that they don't know how or where to begin responding to people who say, “Call me if you need me” or “What can I do for you?”

Fact

Caregivers who take advantage of support groups, adult day care, and respite care services keep their Alzheimer's patient at home longer than those who do not, according to the American Geriatrics Society. They also tend to feel healthier and find caregiving more rewarding than those who do not use support services.

But as AD progresses, most patients require constant supervision and assistance with nearly every activity. Caregivers often find they are consumed with round-the-clock duties and can't keep up with basic at-home needs, like grocery shopping, laundry, and cleaning. Some let everything go.

Finding Professional Help

Try to identify what kind of help you most need. Do you need a daily break? Would you and your loved one benefit from being apart for a few hours? If your loved one is homebound, do you need a nurse to clean and bandage wounds and monitor equipment? Would hiring a homecare aide to help your loved one get showered and dressed better suit your needs? Or should you consider hiring a companion/homemaker who can fill in for you for a few hours at a time?

GETTING HELP

Here are some tips for hiring in-home caregiver help.

  • Start looking long before you think you need help — even if you think you'll never need it.

  • Whether you hire someone through an agency or on your own, remember: You are an employer and she is an employee. Don't hire help solely based on cost. Some hospitals distribute lists of agencies and home care workers, and they tend to highlight the cheapest ones. This is not a place to cut corners.

  • Ask anyone who interviews for the job to bring a resume or written work history, personal identification (proof of name, address, date of birth), and references and contact information for two previous employers. Find out how much experience she has had working with people with dementia. Talk about the challenges of the job.

  • Trust your instincts. If you feel uncomfortable with something about the person during the interview process, don't hire her.

  • Write a job contract that clearly describes the job duties, days and hours to be worked, and pay rate, including when and in what form of currency the employee will be paid. If you hire someone who isn't referred by an agency, she is considered an independent contractor and you are obligated to report her earnings to the IRS. You may be responsible for paying taxes, so check with the IRS for forms and directions. The job contract should stipulate a hire date, trial period, and termination policy; holiday, vacation and sick policy; and a contingency plan that covers your needs if the employee informs you on short notice that she can't come to work.

  • Be clear about your expectations and try to keep the relationship professional. You may become very fond of a homecare worker, but limits have to be set. Just because someone does a good job doesn't mean she makes the rules. Be clear from the outset that you want the worker to feel free to voice any complaints to you, and that you have the same right to voice your concerns.

  • Homecare workers are often eager to help but don't know what your loved one was like before she was ill. You can help fill in the gaps, which will likely improve her understanding and their time together.

  • Don't expect the homecare worker to handle important communications with doctors, lawyers, or other professionals. Don't share financial information with homecare workers. Keep records and accounts of all financial transactions; ask for receipts if she spends money you have given her on your behalf.

  • Keep the lines of communication open, and don't lose perspective. Don't be afraid to make a change if you feel there is friction. The best homecare workers are able to be honest without being defensive.

Adapted from an article by Steven Schwartzman, director of Elder Care New York, on eldercare.com.

You might also consider respite care. Respite care is designed to give you, the caregiver, a break. It includes adult day care programs, in-home help, and short nursing home stays. Adult day care programs range from all-day to occasional care at most senior and some community centers. Short-term respite care is available at many nursing homes or assisted-living facilities, which offer spare beds for short-term respite stays.

Question

What can I do if I feel torn by the realities of caring for someone with AD?

Many caregivers worry that their lives will be consumed by caring for their loved one. They may feel guilty for wanting their responsibilities to end because it will mean the death of a loved one. Try thinking “I am both a caregiver and a person with my own needs” or “I wish both that it was over — and that my loved one could keep on living.”

A few organizations, such as the Family Caregiver's Alliance in California, offer weekend camps for people with cognitive impairment. Your best bet for finding programs near you is to do an online search for overnight senior respite care or eldercare in your town. If that isn't available, family members, friends, or others caring for sick people can fill in for you at home for short periods of time.

Informal Support: Asking Others for Help

Despite the fact that family caregivers are drowning in responsibility or are really confused about what the next step ought to be, they often reject offers of help. Recognize that asking for help is a sign of strength, not weakness. It means you truly have a grasp on your situation and have come up with a proactive problem-solving approach to making things easier and better. Take a breath and acknowledge that having some help will make a real difference in your loved one's quality of life — and yours as well.

THE IMPACT OF CAREGIVING ON A PARTNER OR SPOUSE

If you are caring for a parent with Alzheimer's, your duties and demands are almost certain to put significant pressure on your relationship with your partner or spouse, according to a survey conducted by Caring.com, the online eldercare resource center.

Eighty percent of the 300 family caregivers who responded to the survey said that caring for an older relative had put a strain on their relationship or marriage. “Decreased time together, lack of opportunity for consistent communication, resentment of the needy parent, shift in the use of financial resources, increased fatigue and stress all increase the strain on a marriage,” the survey concluded.

Couples were most likely to feel undue strain if the caregiver was holding down a paid job, if they were providing financial assistance to an aging relative, or if the elder person lived in their home. Nine out of ten respondents said caregiving caused them to spend more time apart from their spouse, and nearly half said that was causing them to drift apart. Forty-six percent of those surveyed said that caregiving had a negative impact on their romantic relationship with their significant other, and 34 percent said it had a negative impact on their sexual relationship.

However, 20 percent of respondents said caregiving caused no strain on their primary relationship. Indeed, some said it had brought them closer together. “My husband knows that my mother won't be here forever and tells me to do what I feel like I have to do, and I love him dearly for this,” one respondent said.

Prioritize

Caregiving, like any job, is made up of many individual tasks, not all of which are of the same importance. Some tasks are easy; others require some skill and fortitude. The challenge is to know the difference. Think about and decide what help you need. Some — not all — duties and tasks are easier for you to do than to delegate to others. But paid professionals, family, or friends can handle some.

Create a list of your caregiving worries — such as what you'll do when Dad is home this summer along with the kids — and smaller tasks that need to be done in any given week. Group your tasks into categories that make sense to you.

This can help you think more rationally, prioritize your concerns, and recognize that getting help with some smaller tasks might lessen your stress. It can also give you ideas about what family members, friends, or community volunteers might be able to do to help.

HIRING A CAREGIVER

Once you bite the bullet and decide to hire a home caregiver or companion, get ready to bite down more, says Tom, a retired realtor who cares for his wife, Ellen. “Finding someone good who fits with your family situation is a big job,” he says. “Finding someone who will stay is stupendous.”

Tom hired four different companions for Ellen over a six-month period, and none lasted more than six weeks. “It wasn't that they weren't good. They were good to great,” he laments. “But life is complicated — yours and theirs.”

Ellen didn't like the first companion, and Tom suspects it was because she felt uncomfortable revealing her illness to a stranger for the first time. “My daughter said the first one would never work out, and I think she was right,” he said.

He searched and found a “perfect” companion, who got along famously with Ellen for three weeks — until she was offered a job with overnight hours, at better pay. “The third person we hired loved us and we loved her,” says Tom. “But her family moved an hour away, and the commute was too long. She recommended a friend for the job, who was great.” But that companion had to leave in less than a week to take care of her own ailing mother.

“You've got to realize this is very hard work,” says Tom. “The people who do it don't get paid much, and they have a lot of demands on themselves. Life intervenes.”

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