Finding Help

Learning to accept help

Family members who have cared for a loved one for a long time acknowledge that they are able to do a better job when they accept help from others. Even when they enjoy the process, it can still be a lot of work. And caring for an aging parent may go on for an extended period of time. You need to pace yourself. A willingness to accept help is the first step.

For many family caregivers, noble but inaccurate beliefs can create obstacles to getting help:

• “I should be able to do this by myself.”
• “It’s selfish to think of my own needs.”
• “My [brother/sister/cousin …] won’t do it the right way.”
• “Dad won’t let anyone help but me.”

If these sound familiar, you are not alone. Beliefs such as these, however, represent an unfairly distorted view. They don’t take into account the realities of modern life. And they can interfere with your ability to care for your parent for the long term.

If left unchecked, such beliefs lead to depression and burnout. In fact, family caregivers have a much higher incidence of depression and greater health problems than their noncaregiving peers.

You can learn to pace yourself and accept help by combating these distortions. Professionals in cognitive therapy say the simplest way is to recognize negative self-talk and offer yourself an alternate view. For instance:

“Should Statements.” Idealistic thoughts focused on how things “should” be rather than on adapting to the realities of a situation.

• Alternate perspective: Instead of “I should do it all,” remind yourself, “I would prefer to do it all, but that’s not possible. It’s better that I get help than exhaust myself and do a bad job with Mom.”

“Labeling.” Applying false or harsh judgments on yourself or others.

• Alternate perspective: Instead of “It’s selfish to think of myself,” remind yourself, “I am not selfish. I do a lot to care for Pop. But I need to pace myself for his sake as much as mine.”

Tips for letting others pitch in

Caring for an aging parent has many rewards. But that doesn’t mean you don’t need a break now and then to recharge your batteries. Many family caregivers don’t take needed breaks because they worry that others won’t do a good enough job in their place.

Although concern for your parent’s comfort and safety is appropriate, it’s also important to distinguish between real threats and a tendency toward perfectionism. For instance, it’s not uncommon for one sibling to feel like none of the others help. At the same time, the other siblings feel there “isn’t enough room” for them to pitch in because the primary caregiver is so particular about if, when, and how things get done.

Voltaire once said, “The perfect is the enemy of the good.” If you are having trouble getting, or allowing, others to help, you might want to consider the following:

• Is a hot dinner every night necessary, or could Dad be just as satisfied by a hearty sandwich?
• Your sister might not do your mom’s hair just right, but the tradeoff may be an opportunity for a rekindling of their relationship.
• As a compassionate friend, what advice would you give someone in a situation similar to yours?

If the perfect is getting in the way of the good for you, it can be hard to let go. The stakes seem very high. Be gentle with yourself, and look at these tips from researchers in the field of perfectionism:

• Start small. Ask someone to take over a routine task, such as picking up a prescription.
• Consider it an “experiment,” not a permanent change.
• See what happens. If things don’t go as planned, were the errors life threatening for your loved one or simply irritating for you? Would practice or more information have enabled the helper to do better?
• Were there any positives to the situation? Did they have value?
• Try again. Don’t expect it to be easy the first time. As with any learning process, the more you do it, the more comfortable it will feel.

When Mom wants only you

Okay. You’ve decided it’s time for some caregiving help for your parents. The next obstacle may be that Mom or Dad wants “only you.” Part of working together as a team is learning more about your parent’s priorities. Ask him or her to tell you why they don’t want help from others. Concerns may include:

• Safety. Fears about “strangers” can be addressed by seeking helpers from your family member’s natural community: friends, church, or neighbors. A licensed and bonded home care agency provides screening for drugs and criminal history. If you are thinking you might hire someone privately, please read our article below about hiring help yourself. Another option is to hire an Aging Life Care Manager to help you find safe, professional caregivers who have had special training in elder care.
• Cost. If your family member does not have many resources, he or she may be eligible for free or low-cost services. Go to www.benefitscheckup.org to see what may be available locally. A consultation with an Aging Life Care Manager often pays for itself, because these professionals know of many services available to veterans, railroad workers, and other special groups.
• Dignity. It may be difficult for Dad to admit a need for assistance. You can spare his pride by emphasizing the benefit to you. For instance, tell him how much the extra help would relieve your worries and make it easier for you to sleep at night.

If your parent remains resistant, it may be necessary to set limits. State specifically what you are able to do, and offer suggestions for the things you cannot do. Start small and whenever possible, involve your family member in choosing who will help and when they will come. For example:

• “I know you feel most comfortable with me, but John wants to participate, too. Let’s have him come one day next week, just to try it out. What day would work best for you?”
• “I can help on the weekends. But that still leaves Wednesday, which I can’t do. Of the two agencies we interviewed, which one did you like best?”

An Aging Life Care Manager can assist in this process by helping you define the issues and then facilitating a family meeting.

A tool for organizing friends and family

Some tasks are more than one would ask a friend or unskilled helper to do. But bringing a meal or taking your parent shopping is simple. And even having one less thing on your To Do list can be a big relief.

Family caregivers often report the most difficult part is the act of asking someone to help. That’s understandable. We’re all busy. You don’t want to intrude. Friends and relations even say, “Keep me posted, and let me know if there’s anything I can do.” But it’s hard to remember and follow up when the time comes and you realize you could use a helping hand.

With the Internet, tools are now available that can help everyone stay more connected. One especially useful tool is a simple, free, online calendar service offered by Lotsa Helping Hands, a nonprofit technology company.

Lotsa Helping Hands allows you to create a “community” of interested individuals. You enter their names and email addresses into your account and can easily send updates about your loved one’s condition. (For those familiar with the Internet, this online service is like a private, family blog.) You can upload photos. People can write back. Conversations can occur online. Only people you have authorized to be part of your online community will have the login information needed to participate.

The calendar tool is what makes Lotsa Helping Hands special. No longer do you have to make embarrassing phone calls asking for help. No more leaving messages and getting three positive responses. Then you have to call two people back and say no, but ask them to please respond next time…

With Lotsa Helping Hands:

• You post an errand on the calendar (e.g., take Mom to hairdresser, Weds. 3:00).
• You send an email request to people in your community.
• A community member willing to help clicks on the task on the calendar.
• Anyone coming after that sees the task is taken.
• You and the helper receive an email confirmation.
• Email reminders are sent to you and the helper a week before and the day before the task.

Now when someone asks, “Is there anything I can do to help?” you can reply, “Yes, give me your email address. I’ll keep you updated on Mom. And if we need something, I’ll send you an email.”

No fuss, no muss. And to top it off, there is no charge to open an account at Lotsa Helping Hands. It’s free!

Services to help at home

Services in the home are divided into three kinds. Which service you choose depends on the level of training needed in the staff. Requirements set by Medicare may also determine which type of service will be covered.

• Home Health Care. This service is provided by nurses and other medical professionals.
• Home Care. This service is provided by uncertified staff.
• Hospice Care. This service is specifically for persons with a life-limiting condition. Services are provided by nurses and other medical professionals.

Home Health Care is skilled medical care to help an individual regain their health. Typically, home health care is used following a hospitalization or surgery. The role of the staff is to help homebound patients with a complicated medical condition that can be managed or improved. A doctor’s order is required.

Home health care is short-term care. It normally involves a few visits over several weeks. For instance, a registered nurse, a physical therapist, or an occupational therapist may make hour-long visits once or twice a week. Although the doctor orders home health care, you have a choice as to which provider you hire.

Home health care is generally covered by Medicare or other health insurance.

If your family member needs 24/7 access to medically trained staff, a skilled nursing facility is the most affordable option. Medicare and most insurance will pay for this kind of care for a limited time. A doctor must determine that your family member needs round the clock access to medical attention. You have the choice as to which facility to use.

Whether you need home health care or a skilled nursing facility, an Aging Life Care Manager can help you select the company best equipped to deliver the services your loved one requires.

Home Care is nonmedical care to help a person remain in their own home. There is no need for a doctor’s order. Nonmedical home care includes

• personal care (such as bathing and toileting);
• dressing and undressing;
• fixing meals;
• assisting with walking;
• transferring in and out of a chair or bed;
• light housework;
• transportation;
• visiting and companionship.

Nonmedical care does not mean the person lacks skills. The individual caring for your family member needs to have an understanding of the basics of elder care. Although certification is not necessary, many in-home care providers are former certified nursing assistants or home health aides. They gained their initial training and experience in a nursing home. Now they prefer to work one-on-one with clients.

Nonmedical care at home can be vital to keeping your parent independent and safe. Unfortunately, health insurance, including Medicare, does not cover nonmedical care. If your family member has long-term care insurance, nonmedical home care may be covered. Check your family member’s policy for details.

An Aging Life Care Manager can help you save money. After meeting with your parent and conducting an initial assessment, the care manager can make several suggestions. He or she will create an individualized plan. Often there are options available that provide less expensive alternatives to in-home care. For instance:

• Automated medication reminders
• Community resources, such as home-delivered meals or local Dial a Ride
• Safety equipment, such as a ramp or grab bars
• A personal alert system should your family member fall
• A move to an assisted living facility which offers a more home-like setting than a nursing home, and has round the clock access to nonmedical care.

Some nonmedical home care may be available for persons with low income. If your parent is on Medicaid or Supplemental Security Income (SSI), contact the local Area Agency on Aging. The state Medicaid office or local Veterans’ Service office may also be able to help. Hiring an Aging Life Care Manager who knows community resources may be the most efficient way to find low-income services. An Aging Life Care Manager can determine whether your family member is eligible for local programs. In addition, these professionals know whether a waiting list is in place and how best to apply.

If your family member does need in-home care, an Aging Life Care Manager can help arrange these services cost effectively. Give us a call at 585-271-0400. We’d be happy to talk to you about ways to save money while meeting your loved one’s needs.

Hospice Care is skilled medical care for individuals with life-limiting illnesses. Like home health care, hospice involves weekly hour-long visits from a team of medical professionals. Both the patient and the family have access to the team’s support services. A doctor must recommend hospice based on a diagnosis of an incurable condition. In addition, the doctor must estimate that the patient has six months or less to live.

Hospice care emphasizes quality of life. The focus is on keeping the
patient comfortable emotionally, physically, and even spiritually. Nurses and physicians help manage difficult symptoms (pain, nausea, and fatigue). Social workers and chaplains assist with emotional and spiritual issues (anxiety and depression). Nurse’s aides come several times a week to bathe and groom the patient. And a volunteer is available to give family members a few hours off each week.

Most people wish they had received the support of hospice earlier in their condition.

Patients on hospice understand that their condition does not have a cure. They are willing to forego curative care. Instead, they wish to focus on improving the quality of the weeks and months that remain to them. Most people think of hospice in terms of a cancer diagnosis. In fact, hospice can provide powerful support for individuals with other incurable conditions, such as COPD, congestive heart failure, and advanced dementia.

Hospice care is covered 100% by Medicare.

If you think your loved one has a life-limiting disease, ask the doctor if hospice is appropriate. If so, you have a choice of hospice providers in your community. An Aging Life Care Manager can help you select the one that has services tailored to your family member’s condition.

Hiring help yourself

Hiring someone directly has many risks and many responsibilities. Make sure you are well informed. Simple as the caregiving job may seem, being an employer is not easy. And bringing strangers into the home is not a small matter. You may want to have a home care professional (an Aging Life Care Manager or a home care agency) do the hiring for you.

Here are some things to keep in mind if you hire someone yourself:

• Criminal background checks. You want to be sure that the person coming to your loved one’s home does not have a history of elder abuse or run-ins with the law. Even the nicest seeming people can be trouble. Con artists typically have winning personalities.
• Drug screening. You want to be sure that the person caring for your loved one is mentally sound. You don’t want someone in the house who is working while under the influence of drugs. If you decide you want to require drug testing, be prepared to pay for the expense.
• Home security. From protecting Mom’s valuables to arranging for a key, there’s a delicate balance between convenience and caution. (Experienced home care professionals have systems worked out to make sure your family member’s home is appropriately protected. They know how to minimize hassles for your parent and the caregiver while providing security for your loved one’s assets. They are usually required to also have insurance against a possible theft.)
• Training. How do you know if the caregiver really knows and understands elder care? Can they handle an emergency and make good decisions? Do you have the time to verify training and educational certificates? Just because a person says they have done something before, doesn’t necessarily mean they have. Sadly, competence is hard to verify unless you are experienced with recruitment and hiring. (Home care professionals test for competency. And many provide training opportunities for their employees.)
• An honest accounting of hours. Unless you are present much of the time, how will you know that the caregiver worked the hours he or she bills for? If your loved one is unwell or has memory problems, he or she may not be able to monitor time spent providing care. (Home care professionals have systems in place to confirm the hours worked.)
• Quick replacements if the caregiver is sick. By hiring the caregiver directly, you are the employer. As such, you need to be ready with your own “Plan B” in case the caregiver is unable to come to work. Is your parent safe without assistance for a day? Two days? Three? Or is he or she dependent on the caregiver for meals? Medication reminders? Supervision to make sure the stove is turned off, or that your loved one does not wander? Once you become the employer, you have to not only hire the employee, but also be ready with an alternate plan if your employee gets sick.
• Protection from lawsuits if the caregiver gets hurt. If you hire someone on your own, he or she may file a lawsuit against you if there is an injury on the job. As the employer, you are required to pay Workman’s Compensation Insurance to cover potentially disabling incidents. Without it, your assets are at risk because you are individually liable.
• Social Security and other taxes. As an employer, you are responsible for Social Security, payroll taxes, and unemployment insurance. There are many legal obligations, deadlines, and penalties if you do not comply. To hire someone legally as a contractor, rather than as an employee, their terms of engagement must fit the criteria of your state’s Labor Code. A person may say he or she is an independent contractor, but that claim can be called into question if you set the days, hours, and duties. If they do not qualify as an independent contractor and they are being paid without taxes being withheld, it is against the law. If it is found that you or your parent were the employer, you must pay all back payroll taxes plus penalties. You might even have to appear in court. If you plan to hire help directly, check with an accountant to find out what your tax responsibilities are.
• Discipline, hiring, and firing. Would that all employee/employer relations were trouble free. Unfortunately, they are not. Your employee will need some training. There will be a period of getting used to each other. Your loved one will have preferences, and so will you. Communicating these priorities effectively is an art. Enforcing them is an even more delicate art. Then there is the matter of compatibility. Not all personalities are a good fit. If differences are irreconcilable, letting an employee go is yet another art, though one that may have legal and financial ramifications. Make sure you understand the state and federal laws about this subject. Moreover, if/when you do let someone go, depending on your loved one’s needs, you may have to have someone else chosen, screened, and ready to put into place, perhaps even the next day.

Hiring help directly is certainly an option, but it is not as simple as it may seem. This is why many families turn to an Aging Life Care Manager. Whether he or she offers home care services or works closely with an agency, an Aging Life Care Manager can explain the legalities and help you be sure you are covered.