Chapter 8 - Finding Caregiving Help

ASK AND RECEIVE

One theme is sounded repeatedly by caregivers of loved ones with ALS: You can’t do it alone. Get help!

Physical demands, emotional demands, other family responsibilities, jobs, and more, eventually take a toll on even the strongest, most devoted caregivers. Don’t wait until stress becomes extreme. Take the advice of experienced caregivers: Get help early, get it from every possible source, accept all offers! This chapter presents some of the many types of help an ALS caregiver may find valuable.

Some of the help you’ll need will be financial (see Chapter 7); some will be assistance with caregiving chores; some will be in the form of medical and other expert advice. Emotional support and respite for the caregiver are absolutely essential forms of help.

Rarely will someone provide the kind of care that the primary family caregiver can give a loved one, but many people can do some of the chores. To clarify the roles, think of yourself as the carer, the one who emotionally cares for (loves) the person who needs you, and the primary caregiver. Others who are hired or recruited as volunteers are caregivers or helpers, filling assigned tasks.

HIRING CAREGIVERS

Agency Help

Home health care agencies provide trained people to assist with daily care in the home. The number of hours these aides work depends on the family’s budget, insurance coverage and preferences — it can range from around-theclock shifts to a few hours a week.

Home health agencies usually are Medicarecertified, meaning they meet federal minimum requirements for patient care and management and therefore can provide Medicare- and Medicaid-covered home health services. These agencies provide skilled services from nurses and closely control what their employees may and may not do, meaning that in some instances they only may be allowed to provide medicalrelated services for the patient.

Staffing and private-duty agencies generally provide nursing services. Most states don’t require these agencies to be licensed or meet regulatory requirements.

Homemaker and home care aide agencies offer less skilled care, such as meal preparation, bathing, dressing and housekeeping. Personnel are assigned according to the needs and wishes of each client. Some states require these agencies to be licensed and meet minimum standards established by the state.

Registries or visiting nurse associations serve as employment agencies for home care nurses and aides, matching these providers with clients and collecting finder’s fees. These organizations usually aren’t licensed or government regulated.

Home care providers are listed in the Yellow Pages under “home care,” “hospice” or “nurses.” An Area Agency on Aging or United Way chapter also may have a list.

Insurance policies and state Medicaid programs vary in the type of care they’ll cover, so be sure to understand the policy’s provisions. Some in-home assistance for low-income people over age 60 with disabilities may be covered under the Older Americans Act, with funds administered by the state. A few states allow hiring and paying a family member as a caregiver. Check with your Area Agency on Aging or state department of social services.

Pros & Cons of Agency Help

Nurses and home care aides are trained and experienced in the various chores required to care for a person who’s seriously ill. The agency handles all hiring, firing, supervising, payment, taxes and paperwork, and is responsible for finding a person the family likes.

But in-home care is expensive. Users pay a fee that covers the employee’s wages plus agency expenses and profit. At the national average of $18 an hour, this can add up to $144 for an eight-hour day, or nearly $13,000 a month for round-the-clock care. The degree of insurance coverage may be a deciding factor in whether to use agency help and for how many hours.

Occasionally, an agency may send a person who is insensitive to the family’s privacy, or indifferent to the patient’s personality, dignity and wishes. A paid caregiver even may make crude remarks about death or the person’s needs. Or there simply may be a conflict of personality or lifestyle between the worker and the family.

A hired caregiver should behave as if he or she is working for the family, not the agency — willing to learn about the family’s preferences, and respectful of physical and emotional boundaries. The aide should be businesslike and competent but compassionate, willing to communicate with the person with ALS no matter how difficult, and aware of family members’ personal space and emotions. If the aide is at all uncomfortable with performing any of the duties required, especially duties related to the personal care of your loved one, don’t be afraid to request another aide. Your responsibility is to make sure the aide’s behavior gives your loved one a sense that his or her needs will be taken care of competently. This helps reduce the stress of having an outside caregiver in the home.

Clarify all of these issues with the agency, and with the individual employee, at the beginning of the working relationship. Look at the first few weeks as a trial period; if someone doesn’t show up on time, isn’t a good fit or behaves offensively, call the agency and ask for another aide. A professional agency will comply without objection.

See “Hospice,” for more about getting care help at home.

Tips for Using Agency Help

• Be completely honest about needs. Agencies are familiar with almost every type of assistance required; embarrassment or concern that you’re asking too much shouldn’t interfere.
• State preferences from the start. Be specific about hours, daily routines, and household rules such as “no smoking” and off-limits areas of the home. Don’t assume the agency will know your exact wishes.
• Make it clear who in the family is the authority or decision maker — the person with ALS or the primary caregiver or both. If everyone in the family gives orders to the employee, the result can be confusion and failure to give proper care. Discuss disagreements among family members outside the employee’s presence.
• Give feedback to the employee or agency on a timely basis. If there’s a problem, no matter how small, address it immediately to be sure the employee is clear on your wishes. If that doesn’t work, call the agency — it’s responsible for supervision.

Hiring Aides Directly

Some families prefer to bypass the agencies and hire a person on their own to assist with caregiving. Someone with little or no medical training can be hired for a lower rate, and can be trained in basic caregiving tasks such as lifting, bathing, maintaining equipment — essentially everything the primary caregiver has been doing.

This type of aide can be a live-in assistant or someone who comes in a couple of afternoons a week to relieve the primary caregiver.

Pros & Cons of Hiring Directly:

• Pro: Caregivers can pay a lower rate to someone who doesn’t come through an agency, especially a part-time high school or college student.
• Pro: There’s no need to deal with agency guidelines, regulations and applications.
• Con: The person won’t have been evaluated by an agency, making the primary caregiver responsible for checking out applicants’ backgrounds and ensuring the person is honest and qualified.
• Con: Some recordkeeping is involved, primarily hours and payment history. You also may be responsible for paying federal and state employment taxes if payment to the aide is over a certain dollar threshold.

“When hiring outside help I ask for kindness, attentiveness, gentleness and respect for [my husband] and his changing needs. I need people who have the hearts and inclination to get to know this wonderful man.”

• Con: Health insurance may not cover the cost of an independently hired aide (although it may not cover agency help either).
• Con: If there’s only one helper, there’s no agency to send a backup person when the helper is unavailable.
• Con: If the helper is a family member or friend, there can be awkward consequences if things don’t work out or problems arise.

Finding an Aide

There are many ways to find potential assistants. Word-of-mouth is the best resource; ask your MDA support group, church or synagogue, friends and neighbors. Other ways to locate applicants are:

• Check with senior centers or independent living centers.
• Place classified ads in local or college newspapers. College students, high schoolers or Scouts may be able to fill a community service requirement by caregiving.
• Put announcements on bulletin boards or newsletters at hospitals or social service organizations.
• Ask at community college or university career centers or departments of nursing, physical therapy or social work. Students may be looking for part-time jobs or unpaid internships that offer experience.
• Ask the social worker or other health care professionals at your MDA clinic for other resources in your area.
• Your children’s teachers or school administrators may know of parents looking for work.
• Run a free ad in craigslist, www.craigslist.org.
• Call the community volunteer center.
• Go to Extra Hands for ALS, www.extrahands.org. This Web site matches student volunteers with families with ALS in several cities.
• Ask at privately owned drugstores and medical clinics.

Deciding What Help You Need

Before you look for an aide, know exactly what you need the person to do. Make a list of tasks and write a job description. Take a few days to jot down any chores that you could use help with as you go through your routine. Are you primarily interested in physical care, companionship, housekeeping or a combination of all three?

In the job description, include rules such as no smoking, no cooking, no loud music, etc. Do you need the person to have a car to do errands, or can they use yours? Do you need someone to be on call or to work set hours?

Review these guidelines with the person with ALS. Is a male or female assistant preferred? What other preferences does the person have? The loved one may be resistant to having “strangers” come in, but go ahead and look for helpers anyway. It may take some time to convince your loved one to allow others to provide personal care, but at a certain point the primary caregiver knows best what’s needed in the house.

Interviewing & Hiring

Hiring your own caregiving assistant means you have to screen applicants for criminal records, training, job referrals, etc. You can’t take a chance on allowing someone dangerous, incompetent or dishonest into your home to deal with a vulnerable person.

When someone calls in response to the ad or inquiry, ask what they’d like to know. For example, it’s a bad sign if their first question is “How much does the job pay?” or “How much time off do I get?” It’s better if they ask what some of the duties are or how many hours they’d be needed.

Explain the job briefly, but don’t describe your loved one’s exact physical condition or the number of people in the household. There are criminals who search out vulnerable victims from ads and notices.

You can ask a bit about experience or background over the phone; the phone call should let you weed out inappropriate applicants. If you get a good feeling from the phone call, ask the person to come for an interview. You may want to interview three to five people before choosing one.

Expect interviewees to dress appropriately (that doesn’t mean hose and heels, but they should at least be clean, neat and modest) and to arrive on time or call if they must be late. Expect someone who listens, makes good eye contact and asks relevant questions. Most applicants should bring a résumé, though a young student or a person just re-entering the job market may not have one.

You can print out a simple job application form from the Internet or create one.

Ask some open-ended questions: Tell me about yourself. Why are you interested in this job? What’s your school/work schedule? What do you do in your spare time? The answers will give some insight into communication skills and personality, important factors in a future relationship.

Of course, ask about experience — even volunteer or family caregiving experience could be valuable. If they’ve done in-home care before, ask why the job ended.

Explain your needs in some detail and find out if they have experience bathing, feeding, etc. Describe a typical day and what’s expected of them, and check the reaction. Be sure to tell them of any uncomfortable tasks you expect of them, and ask if they have the physical strength for lifting and transferring.

If you’re seeking a live-in, be specific about guidelines: Can anyone move in with them? Can they bring a pet? What’s included — rent, utilities, food, phone, cable, furniture? Are days off set or negotiable? Can they have friends over for dinner or overnight? Ask if the applicant is in a relationship, and make clear whether it’s OK for the partner to spend time at your home. If so, how often?

For all applicants, ask for names and contact information of several people you can call for references. Former employers are best; students also may list teachers or people from church or the neighborhood for character references.

If at any point in the interview, you know the person is unacceptable, just conclude the meeting. There’s no need to waste time talking with someone you aren’t going to hire.

When you’ve narrowed the field to one or two leading candidates, it’s time to check background. This is imperative, especially if the person hasn’t been referred by someone you know. You can’t be too careful about exposing your home and your loved one to someone you don’t really know. Make sure they give you a permanent address, date of birth, Social Security number and driver’s license number.

Run a criminal background check and driving records check. There are several Web sites that will do this for a fee or will explain ways to go about searching; see www.lexisnexis.com; www.choicepoint.com; virtualchase.com; searchsystems.net. Some search programs are little better than scams. Among the good ones are NetDetective.com, ReverseRecords.org, and CourtRecords.org.

Introduce the person with ALS and get his or her reactions. Trust your instincts.

Managing Caregivers & Helpers

• Inviting someone to spend many hours in your home isn’t easy. First, all those involved must accept that the assistance is needed enough to sacrifice a bit of privacy. Eventually everyone, including the person with ALS and the primary caregiver, will come to accept that this helper can improve the family’s quality of life.
• To make things as easy as possible for everyone, give the aide as much information as possible. Offer a written summary about ALS and your loved one’s condition, and provide MDA materials on the disease.
• Post a daily schedule, listing times for getting up, bathing, meals, meds, etc. Be very specific about dosages of medications. A monthly or weekly calendar that lists times of therapy and doctor appointments also would help. If the person with ALS has speech difficulties, these lists will help new caregivers understand the needs he or she may be describing. Explain any other keys to assist with communication.
• Make copies of any instructions or advice you’ve received from health care professionals, such as how to handle the ventilator. Go through each new chore carefully; demonstrate several times and show the new person how to watch for your loved one’s reactions. Watch as the aide performs the task the first few times, and give helpful hints. Be patient with the learning curve.
• Ask the person with ALS for feedback and make it clear to the aide.
• If your loved one is reluctant to be assisted by others, explain that accepting someone else’s help is a great way for your loved one to help you. Their resistance may be a form of denial of the seriousness of ALS; requiring outside help means admitting the depth of the problem.
• Let the helper take on chores gradually or assist you until the person with ALS gets used to the idea. Keep explaining what you will be doing while you’re gone, and make it clear you’ll be back. Remind the aide to be patient.
• If you aren’t going through an agency, you may wish to draw up an informal contract with the aide that spells out hours, pay rates and other details of the job. You each should sign two copies, and each keep a signed copy.
• For aides you hire directly, check with an accountant to be sure you’re keeping the correct records. Record hours and payments. Tell aides that, as contractors, they’re responsible for paying their own Social Security taxes. Some people have the aide sign a time sheet or pay sheet every week or two weeks, and give them a copy of the record to keep.
• At the end of the year, send a W-2 form to the IRS indicating how much you’ve paid for income tax purposes; the worker also gets a copy.
• Your homeowner’s insurance should cover liability for injury. If you’re concerned, ask the person to sign a no-fault agreement.

Asking for Help from Friends and Family

Most of us find it difficult to ask for help; we like to show the world, and ourselves, that we can handle it, whatever it may be. ALS caregiving is such a personal, round-the-clock experience, it’s difficult to know how to parcel out chores.

There are many ways others can help. Friends, neighbors, church members, co-workers, social acquaintances and family members may have offered to help, but they aren’t going to line up at the door. They’re at home waiting for a call: People usually will help if they receive specific directions. Be aware of your own psychological, physical and mental strengths, and look for friends to help in the areas where you’re less confident.

Using volunteer help from those who care about your family has many advantages:

• It saves money.
• It draws friends and family closer together and makes everyone feel needed (see “Rewards of Caregiving”).
• It gives the primary caregiver a little respite, which will benefit his or her physical and mental health.
• Knowing there’s help can make it easier to keep a loved one at home, avoiding or delaying placement in a care facility.

List all the people who have offered to help, and all those who haven’t offered but who might be willing if asked. Develop a chore list, including frequency, and start matching chores with available people.

For a more formal way of organizing volunteer helpers, see “Share the Care Circles”.

Friends and neighbors don’t need to get involved in the most intimate aspects of caregiving. Household chores, errands, child care and such are more appropriate and comfortable for them, and they’ll allow the primary caregiver more time for hands-on, one-to-one care. In requesting that others rake the leaves, drive the kids to soccer, pick up groceries, etc., you’ll have to let go of total control over these tasks. You don’t have the energy to sweat the details, and your way isn’t the only way. If it gets done, you don’t have to worry about it anymore.

Here are some other tips for getting friends, family members and neighbors to help:

• Be clear about what you want. Avoid vague requests: “Maybe sometime you could stop by to visit with Al for a few minutes?” Instead be direct and specific: “Could you come by Sunday and watch the game with Al on our TV, so I can take a nap upstairs? And please bring some snacks.”
• Brainstorm sources of help and expertise. Be careful not to ask the same people over and over. Think about neighbors and acquaintances who might be glad to do simple repairs or stop by the dry cleaners. Ask a knowledgeable relative to help sort out bills or insurance papers.
• Get help getting help. Widen your list of helpers by asking a close friend or relative to ask people on your behalf. Using an intermediary often makes the process more comfortable for everyone.
• Set up a Web site, such as one offered by CareCircle (see “Resources”). These use the Internet to allow people to volunteer for times and tasks you post on the site.
• Keep lists of chores by the phone or in a purse, so when well-wishers ask, “Is there anything I can do to help?” you can tell them. Or, ask if you can call them when you need something from the store or a short respite. If they say yes, call them.
• Expect some hesitation or refusal. Your request simply may come at an inconvenient time. Consider giving them a second chance, but don’t spend time trying to convince someone who’s refused two or three times, or doesn’t keep a promise.
• Accept gifts. Some people may not have time to offer but would be glad to spend some money. If asked, suggest a book of postage stamps, an in-home massage, a takeout meal, a professional housecleaning, or a movie or book on tape or disk.
• Don’t get bossy. If you find you’re ordering your friends around and expecting them to do things in certain ways or take on additional chores, stop and think. Either let the person do the task in his or her own way, or realize that if you need that much control, it would be better to hire someone who expects to take orders.

Children as Helpers

Even very young children like to feel they’re helping their loved one with ALS. Children have helped parents with ALS with suctioning, feeding tubes, changing trach tubes and catheters, or household chores. They can learn by watching and be given simple tasks — “bring Mommy the formula for Daddy’s dinner” — at first.

Children involved in caregiving learn compassion, cooperation, patience and responsibility. Sometimes, however, teens who take primary responsibility for caregiving develop depression, anxiety, insomnia, loss of interest in school, or delay becoming independent. Teen caregivers need to get in touch with the social worker at the MDA clinic to find help.

Long-distance Caregivers

Today, family members are spread across the country, and it isn’t always possible for them to relocate to care for a parent or sibling. Longdistance caregivers have special difficulties:

• They can’t see what’s really happening or do hands-on care.
• It’s difficult to reach doctors or social service agencies and coordinate needed care.
• They may feel guilty and sad over not being involved.
• Traveling back and forth can be exhausting, expensive and frustrating.
• Other relatives, including the one with ALS, may not understand why the person can’t just “drop everything” and come to help them.

With good planning and cooperation, even those who are miles away can contribute.

If a long-distance relative is the primary caregiver, a leave of absence from work may be possible. If not, or when young children are in the picture, frequent visits may be the only way. Try to be there for doctor visits to meet the health care team, or for selection of major equipment.

The caregiving role will require a great deal of communication and coordination with those who are nearer the loved one:

• Entrust a neighbor or close friend who lives near the relative to check up and visit on a regular basis. Talk to the person frequently, and be sure they contact you if there are any serious changes.
• Go to the loved one’s town to interview formal services such as visiting nurses, senior centers, adult day care or a meals program. Keep in regular contact with these agencies and make sure, through a friend or neighbor, that the person with ALS is receiving proper care.
• Meet the physician and keep in regular contact. Call and speak to the physician directly, or ask how you can receive regular, updated notes on the visits and tests that are administered.
• Hire a private care manager through a social service agency or home health care agency. This person can coordinate services from physicians, nurses, therapists, social workers, homemakers, durable medical equipment and supply dealers, and volunteers. Private care managers can monitor daily care, assist families with implementing a long-term care plan, and keep family members informed if a problem arises.
• Customize a caregiving network (see “Share the Care Circles”).

Long-distance caregivers also can work with primary caregivers who see the loved one daily.

• Be informed about ALS so you understand what’s going on.
• Visit as often as possible so the family knows they’re a priority in your life.
• Make the moments you are together count. Think in advance of your visits about things you can do together and ways to help. Just let your loved one enjoy your company.
• Offer financial support if possible. If family members are reluctant to take money, offer to pay for a specific need — in-home care, respirator supplies, food, etc.
• Provide emotional support and involvement. Phone the loved one often to keep them part of your world, and find out how the day went. Phone the primary caregiver as well and offer support or an ear for their frustrations.
• Maintain a Web site with family photos and news, or e-mail pictures often. Encourage children to send notes and drawings.
• Respect the primary caregiver’s leadership and offer cooperation; avoid disagreements whenever possible; make gentle, helpful suggestions.
• Get involved with MDA in your community; participate in fundraisers; volunteer to help a local family dealing with ALS.

Share the Care Circles

A unique method of organizing helpers to share the load is known as a Share the Care circle. These are based on the book Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill (See “Resources”.)

Share the Care circles can start with a small group, such as a prayer group at church, a handful of co-workers or a bunch of longtime friends. This core group takes on responsibility for organizing needs and finding people to fill them, removing the burden from the primary family caregiver of recruiting and organizing volunteers.

A circle eventually includes dozens of people and reaches far beyond the personal acquaintances of the person with ALS. Long-distance caregivers can play important roles in the circle. Groups often give themselves names: Jeff’s Angel Group, David’s Circle, Friends of Cindy. Information about needs and schedules can be posted on a Web site so volunteers can offer specific help.

In care circles, a few individuals take responsibility for organizing areas such as laundry, shopping, child care, communication, etc. The circles ripple outward to include all kinds of specialists: attorneys, accountants, fundraisers, building contractors, handymen, equipment donors. As each person is contacted for help, that person reaches out to others. The circle organization assures that no one person has too much responsibility, and everyone has a manageable workload. If the family is so inclined, a Share the Care Circle can be pitched as a human interest story to a local newspaper or TV station. More attention equals more volunteers.

See “Resources” for information on how to organize a Share the Care circle; next time someone energetic and committed offers to help, suggest trying this approach.

OTHER ASSISTANCE

Online and Delivery Help

Many services and businesses offer home delivery and pickup, or online or mail order services: pharmacies, groceries, laundries and dry cleaners, holiday and birthday shoppers, clothing and electronics from department stores, movies and CDs, etc. Ask a good friend to investigate these services and line them up for you. Using these efficiently can save tremendous amounts of time (and gasoline) that make it worth any extra cost.

The most efficient grocery delivery is to place a large order or a regular weekly order, rather than calling every time you need a gallon of milk. It’s possible to order online from local supermarkets or from national services that ship within 24 hours.

Explain your situation to businesses such as car repair shops, etc., and they may be willing to pick up and deliver.

Home Modifications

Volunteers can be found to remodel a room, build a ramp, widen doorways or install a rollin shower. Put the word out among friends and start the search for handymen or contractors who will donate labor and/or materials. Independent living centers (CILs) or home health agencies may know of someone who will help. The Homebuilders Foundation exists in several states as a philanthropic arm of the industry; they may help locate a volunteer contractor.

If it’s necessary to move in order to accommodate the person with ALS, or for financial reasons, the state’s Social Services or Family Services Department may know of a program to help find housing. Some states are committed to helping people stay in their homes. (Also see Chapter 7 for information about reverse mortgages and low-interest loans for home modification.) CILs also have leads on low-income, accessible housing.

Elder law attorneys or legal aid organizations can help with rental disputes and agreements.

Medical Help

An MDA clinic or MDA/ALS center can refer your family to a range of needed assistance. Medical care is coordinated, and clinics are directed and staffed by neuromuscular disease specialists. The clinic or center can refer you to knowledgeable therapists, social workers, medical specialists and others. The local MDA office can point you to community services such as home health agencies, equipment vendors or independent living centers.

The social worker at the MDA clinic provides help in navigating the health care system, and is a great source of referrals to family counselors, in-home help agencies and assisted living facilities. The social worker is the family’s advocate or case manager, who can help coordinate the various types of care needed or being received.

However, in the current health care system, families coping with ALS need to be their own advocates. Dealing with medical professionals outside the MDA family, such as pulmonologists, skilled nurses or therapy agencies, can require that families know what’s expected and needed, and be prepared to educate the professional.

Understand what each person does in the medical setting so you can ask the right person. Get to know office staff so they’ll be more receptive. When asking for information, be firm about what you need and strive to remain calm no matter how frustrating the experience.

Remember that doctors are legally and professionally responsible to your loved one, not to family caregivers, unless a caregiver holds medical power of attorney or durable power of attorney. Your loved one must communicate to the doctor that the caregiver is to be part of exams, tests, discussions and decision making.

To become informed about providing physical care, ask occupational therapists, physical therapists and others how to do basic things: range-of-motion, transfers, vent maintenance, tube feeding, basic nursing skills, etc. Manufacturers’ representatives should be willing to answer questions about equipment, and demonstrations often are given at support groups. Some hospitals teach these skills, as do some home care and hospice services. The American Red Cross has a curriculum on family caregiving skills training.

To learn about medical issues, do online research or even take a brief course. You’ll be able to ask the doctor more knowledgeable and pertinent questions and gain a higher level of information.

One woman with ALS wrote up a detailed explanation of the disease, and how it did and didn’t affect her. She included her needs and expectations for caregivers. Everyone — aides, physical therapists, nurses, volunteers — who dealt with her was required to read the material. Professionals who thought they knew everything about ALS learned more and got a better understanding of the person’s individual needs.

Educating staff about ALS and its effects is especially important when the person is in the hospital and is being treated by nurses, residents and others who may never have helped an ALS patient. A caregiver may have to get “politely pushy.” It’s better to be considered obnoxious than to let your loved one get the wrong type of care. Ideally, staying in the hospital with your loved one ensures their specific needs are made known and accommodated.

Keep medical information organized and complete so that each new person you see at the clinic, hospital or in your home easily can find answers and data.

Many hospitals have a patient advocate who speaks in behalf of patients in order to protect their rights and help them obtain needed information and services. This often is a nurse, social worker or other health care provider. If there’s an ongoing problem with hospital treatment, ask to speak to the patient advocate.

LONG-TERM CARE

At some point, even the most devoted caregiver may need to turn over a significant portion of the loved one’s care to professionals. It’s emotionally very difficult to place a loved one in a long-term care facility, but his or her medical needs, or a caregiver illness, financial realities or other factors may make this essential.

Most of the time, some percentage of the costs of the facilities described here is covered by private insurance, Medicaid or Medicare, or the person’s SSI or SSDI income. Once a person with ALS goes into long-term care, Medicare may no longer provide certain equipment. Check with an expert to learn what equipment should be obtained prior to moving to a longterm care facility.

Hospice

Hospice services can provide a transition from care at home to full-time care away from home. Hospice care is available to people in the end stages of a terminal disease.

Hospice staff and volunteers coordinate with the patient, physicians and family members to provide day-to-day care and comfort, in the home or at other locations. Services include administering medications, including those to ease suffering; performing personal hygiene tasks and minor medical procedures; and offering compassionate companionship and support. Most hospice services provide support to the family as well. The hospice service may provide a lot of equipment for the patient at home, including bed, bedside table, alternating pressure mattress, roll-in shower, commode, medications and other supplies.

In general, hospice patients receive only comfort care and symptom management, not life-prolonging devices or therapies. However, pre-existing feeding tubes are OK and some hospice programs also accept patients who already are vented.

Hospice care often is provided in the home, but can be conducted in hospice centers, hospitals, nursing homes or long-term care facilities. The cost is covered under Medicare, Medicaid and most private insurance plans. (See Chapter 7.)

Call local hospice services when your loved one needs help with breathing, feeding, turning, etc. They can do a home evaluation and explain what services may be available and when. Try to find a hospice whose staff is familiar with ALS.

A 2007 study funded by the National Hospice and Palliative Care Organization found that hospice care seems to prolong the lives of some terminally ill patients by days or even months. Some reasons for this may include:

• More personalized attention may result in improved monitoring and treatment.
• Hospice care offers a comprehensive approach, focusing on the patient’s emotional and spiritual needs in addition to physical health.
• Family caregivers are offered support and training. Their reduced stress or workload may help patients feel like less of a burden, and so increase their desire to live.

Assisted Living Facilities

Assisted living bridges the gap between independent living and nursing homes. Residents in assisted living centers aren’t able to live by themselves but don’t require constant care either. This may be a feasible arrangement for someone with ALS for a period of time, though ultimately the progression of the disease will likely require placement in a hospital, hospice or nursing home.

Assisted living facilities offer help with activities of daily living such as eating, bathing, dressing, laundry, housekeeping and taking medications. The facility should create a service plan for each resident, detailing personalized services required by the resident and guaranteed by the facility, and update it regularly. People who live in newer-model assisted living facilities usually have private apartments, and there are common areas for socializing, as well as a central kitchen and dining room for preparing and eating meals.

The national average cost of an assisted living facility is $2,524 per month, which isn’t likely to be covered by insurance. Other terms used for assisted living facilities include: residential care, personal care, adult congregate living care, supported care or enhanced care.

Nursing Homes

A nursing home or skilled nursing facility (SNF), also sometimes known as a rest home, is a place of residence for people who require constant nursing care and have significant deficiencies with activities of daily living. Physical, occupational and other rehabilitative therapies are offered. Nursing homes are designed to care for very frail people who can’t care for themselves and have numerous health care requirements.

Inquire about assisted living facilities and nursing homes in the community and be sure they can provide all the care your loved one requires. Be sure they permit ventilators, feeding tubes, etc.

After years of caring for a loved one with ALS, having him or her live outside the home is a drastic transition. It’s another loss to grieve, and usually isn’t a change that anyone welcomes. The caregiver faces the shock of a suddenly changed role, just as the person with ALS may feel abandoned or adrift in unfamiliar surroundings. There’s also a sense of relief for the caregiver as duties are reduced, but it comes mixed with sadness, loss and emptiness.

The caregiver and person being cared for can maintain their close relationship after placement in a long-term care facility, and the caregiver will remain vitally involved in care decisions. The loved one still needs a caring person to be sure that things are going well and the right care is being provided. Get to know the staff at the facility to understand who’s responsible for what and who is your best ally if there are problems.

One positive aspect is that now time together can be focused on each other, rather than on chores to be performed.

REWARDS OF CAREGIVING

Health research scientists are finding that — despite the tremendous burden that caregiving presents — people actually can benefit physically and emotionally from the act of caregiving.

One recent study noted that “individuals who reported providing instrumental support to friends, relatives and neighbors, and individuals who reported providing emotional support to their spouse, had a 30 percent to 60 percent decreased chance of dying over the course of the study,” compared to their nonhelping counterparts.

It’s believed that the positive emotions generated by helping behavior may bolster caregivers’ overall sense of well-being, affecting life satisfaction and the ability to cope with stress. Positive emotions also have been shown to lead to increased longevity and faster recovery from cardiovascular stress.

These effects are available not only to the primary caregivers of people with ALS or those who spend many hours a day caregiving — they also benefit volunteers and others who are asked to help. This “helper’s high” can be found in the little moments such as a smile shared between caregiver and loved one. Some may find pride in overcoming difficulties or in knowing a loved one is receiving the best care possible.

Of course, these benefits arise for the caregiver only when he or she is given adequate support. So inviting others to share the care not only helps the primary caregiver; it gives others a strong emotional boost — it’s a win-win-win situation!

Respite Help

One way to experience the rewards of caregiving is to get support through respite care. Call on your network of paid or volunteer helpers to stay with your loved one so you can get a hair cut, go to a ball game, shop, enjoy a hobby, or just sit in the park and watch birds. Ask for babysitting or for someone to take the kids overnight occasionally.

Every community has respite facilities such as adult day care centers that will take the loved one for a few hours or days to give the caregiver a break. In addition, a loved one who qualifies for hospice can spend a night or two at a hospice facility.

Schedule respite regularly — you’ve earned it, and it will help everyone in the family, including the person with ALS. At first it may feel uncomfortable or “selfish” to take time for yourself, but remember this is necessary for you to do the best job possible over the long haul.

Support Groups

MDA support groups are among the most important services the Association provides. Caregivers credit support groups with new friendships, important advice on equipment and more. Couples and individuals who are farther along on the ALS journey give new members a realization that they can get through this; no professional counseling or family support is quite as meaningful as peer support. People don’t have to explain ALS or any of the needed care or devices. They don’t have to explain the exhaustion of caregiving or the other emotions and stresses they experience. Everyone who’s there already knows.

Support groups aren’t just places to share emotions and pick each other’s brains. Groups often invite knowledgeable speakers or have casual social time. There often are no boundaries on what things can be discussed. Toileting, child-rearing problems, sex, family conflicts, breakdowns, death — all are parts of the ALS experience that can be brought to a support group.

Attending support group meetings can be difficult because of distance or other issues. There are many online listservs where people with ALS and caregivers share viewpoints and questions. See “Resources” for a list. Contact your local MDA office (800-572-1717) to see if they can put you in touch with others in your area who are living with ALS.

Private or family psychological counseling may be helpful for a time and often is covered by insurance. Check under psychologists or social workers in the Yellow Pages, or ask for a referral at the MDA clinic.

RESOURCES

Back issues of MDA publications, such as Quest and the MDA/ALS, can be found online at www.mda.org/publications, or by calling your local MDA office, (800) 572-1717.

Help for Caregivers — General

See Introduction Resources.

“Family & Caregiving Resources for People with ALS,” MDA/ALS Newsmagazine, May 2007

“Searching for Information on ALS and Caregiving?” MDA/ALS Newsmagazine, January 2005

“Family Caregivers: 10 Ways to Get More Help,” MDA/ALS Newsmagazine, November 2004

“Reducing Caregiver Stress May Help Loved One’s Depression,” MDA/ALS Newsmagazine, February 2003

“Caregiver Support Programs Innovative — But Going Nowhere,” MDA/ALS Newsmagazine, January 2003

“Families Take on Responsibility,” MDA/ALS Newsmagazine, January 2003

The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers, by Maria Meyer and Paula Derr, Caretrust Publications, 2002

American Medical Association Guide to Home Caregiving, by the American Medical Association, Wiley, 2001

Home Health Care: A Complete Guide for Patients & Their Families, by Jo-Ann Friedman, W.W. Norton, 1986

CareCircle
(914) 741-6742
www.carecircle.com

MetLife Mature Market Institute
www.maturemarketinstitute.com
This site offers many resources for caregivers.

Local Community Services

Check county and state government listings for:

• Health and Human Services Department
• Public Health Department
• Social Security Administration
• Mental Health Department

Contact the social service departments of hospitals and clinics. Locate adult day care centers and faith-based agencies, Visiting Nurse Association and hospice programs.

Check at your MDA office and clinic for other local supports.

National and State Organizations

Check with the Area Agency on Aging or the state department of social services to learn if your state will provide funds for hiring and paying a family member as a caregiver.

U.S. Department of Health and Human Services
www.hhs.gov/od
www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/
Offers information about state Offices on Disability.

Family Caregiver Alliance
(800) 445-8106
www.caregiver.org
Lists state-funded services for family caregivers

National Conference of State Legislatures’
Family Caregiver Support: State Facts at a Glance
www.ncsl.org/programs/health/forum/caregiversupport.htm

National Family Caregivers Association
www.thefamilycaregiver.org

Personalized Web Pages

CarePages
(888) 852-5521
www.carepages.com

CaringBridge
(651) 452-7940
www.caringbridge.org

Finding Volunteers

Extra Hands for ALS
(732) 223-1602
www.extrahands.org
Student volunteers provide free nonmedical services for families coping with ALS in selected cities.

Faith in Action
(877) 324-8411
www.fiavolunteers.org
More than 1,000 interfaith volunteer caregiving programs across the country.

Caring for Elders

The Eldercare 911 Question and Answer Book, by Susan Beerman and Judith Rappaport-Musson, Prometheus Books, 2005

American Association of Retired Persons
(800) 424-3410, (888) 687-2277
www.aarp.org

Children of Aging Parents
(800) 227-7297
www.caps4caregivers.org

Indian Health Service Elder Care
www.ihs.gov/MedicalPrograms/ElderCare

National Association of Professional Geriatric Care Managers
(520) 881-8008
www.caremanager.org

U.S. Administration on Aging (AoA)
(800) 677-1116
www.eldercare.gov

National Association of Area Agencies on Aging
www.n4a.org

U.S. Department of Veterans Affairs Office of Geriatrics and Extended Care
(877) 222-8387
www.va.gov/geriatricsshg/

Training for Family Caregivers

Community-based resources may offer training and classes for family caregivers. Check with local hospitals, home care agencies, Area Agency on Aging, voluntary health agencies, and county and state departments of health.

American Association of Homes and Services for the Aging
www.aahsa.org

American Red Cross
(800) 733-2767
www.redcross.org

National Family Caregivers Association
(800) 896-3650
www.thefamilycaregiver.org

Nurses In Service Training
www.living-with-als.org/Diane

Tips for Nursing ALS Patients
www.march-of-faces.org/BBB/2007/hp-2-lp.htm

Training Program and Resources
www.medifecta.com
Offers training programs, books and Home Care Companion video collection.

Hiring Caregivers

“Despite the Challenge, People Love Their Live-Ins,” Quest, November-December, 2005

“The Working Caregiver Dilemma,” MDA/ALS Newsmagazine, November-December 2006

“Is Your PCA Driving You Crazy?” Quest, March-April 2007

The Personal Care Attendant Guide: The Art of Finding, Keeping, or Being One, by Katie Rodriguez Banister, Demos Medical Publishing, 2007

Caregivers and Personal Assistants, by Alfred H. DeGraff, Saratoga Access Publications, 2002

Avoiding Attendants From Hell: A Practical Guide to Finding, Hiring & Keeping Personal Care Attendants, by June Price, Science & Humanities Press, 1998

For criminal background check:
www.casanet.org/program-management/volunteer-manage/criminal-bkg-check.htm

Asking for Help from Friends and Family

“ALS in a Small Town: Problems & Solutions,” MDA/ALS Newsmagazine, February 2007

“A New Life With ALS: Denial — Don’t Deny Yourself Support,” MDA/ALS Newsmagazine, November 2003

“Caregivers: Say ‘Yes’ to Offers of Help,” MDA/ALS Newsmagazine, August 2002

Organizing volunteers
www.myals.org/whereicanhelp

Long-distance Caregiving

“Handbook for Long-Distance Caregivers”
Family Caregiver Alliance
(800) 445-8106
www.caregiver.org

Share the Care Circles

“Share the Care Circles: Keeping the Circle Unbroken,” MDA/ALS Newsmagazine, July 2003

“Share the Care Circles: Who’s Going to Do What?” MDA/ALS Newsmagazine, June 2003

“Share the Care Circles: Asking for Help Can Be the Hardest Part,” MDA/ALS Newsmagazine, May 2003

“It Takes a Village to Fight the System,” MDA/ALS Newsmagazine, September 2002

“ALS Prayer Chain Offers Caregivers a Way to Fight,” MDA/ALS Newsmagazine, June 2002

“Team Up to Share Caregiving,” MDA/ALS Newsmagazine, October 2000

Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill, by Cappy Capossela and Sheila Warnock, Simon and Schuster Adult Publishing Group, 2004

eHope
(207) 856-7340
www.ehope.nu

Lotsa Helping Hands
www.lotsahelpinghands.com

Share the Care
(646) 467-8097
www.sharethecare.org

Finding or Adapting a Home

See “Accessibility at Home”.

A contractor’s organization may donate labor; also look for a local Home Builders Foundation.

Medical Help

“Social Workers Offer a Wealth of Resources,” MDA/ALS Newsmagazine, September 2007

“How a Nurse Practitioner Fits into the Health Care Puzzle,” MDA/ALS Newsmagazine, November-December 2006

“ALS Case Manager Touches the Lives of Many,” MDA/ALS Newsmagazine, February-March 2005

“Support, Empowerment Keys to Social Worker’s Role at MDA/ALS Center,” MDA/ALS Newsmagazine, June 2003

101 Ways to the Best Medical Care, Charlotte E. Thompson, M.D., Infinity Publishing, 2006

Hospital Survival Guide: 100+ Ways to Make Your Hospital Stay Safe and Comfortable, by David Sherer, M.D., and Maryann Karinch, Adler & Robin Books, 2003

Get Palliative Care
(212) 201-2670
www.getpalliativecare.org

National Association of Hospital Hospitality Houses (NAHHH)
(800) 542-9730
www.nahhh.org
NAHHH represents organizations that provide lodging and service for families receiving medical care away from home.

National Patient Travel Center
(800) 296-1217
www.PatientTravel.org
Helps locate air transportation for patients who need distant specialized medical care.

Patient Advocate Foundation
(800) 532-5274
www.patientadvocate.org

Visiting Nurse Associations of America
(202) 384-1420
www.vnaa.org

Long-term Care

Long-Term Care, by James L. Matthews, NOLO, 2004

Love, Honor, and Value, by Suzanne Geffen Mintz, Capital Books, 2002

Assisted Living Federation of America
(703) 894-1805
www.alfa.org

Medicare
www.medicare.gov/LongTermCare/Static/HomeCare.asp

National Clearinghouse for Long-Term Care Information
U.S. Department of Health and Human Services
www.longtermcare.gov

U.S. Administration on Aging (AoA)
(800) 677-1116
www.eldercare.gov

Hospice

“Research Links Hospice Care With Prolonged Life,” MDA/ALS Newsmagazine, July-August 2007

“Hospice: Comfort and Care,” MDA/ALS Newsmagazine, November 2003

American Hospice Foundation
(202) 223-0204
www.americanhospice.org

HospiceDirectory.org
(800) 868-5171
http://hospicedirectory.org

Hospice Foundation of America
(800) 854-3402
www.hospicefoundation.org

Hospice Net
www.hospicenet.org

Hospice Patients Alliance
(616) 866-9127
www.hospicepatients.org

National Hospice and Palliative Care Organization
(800) 658-8898
www.nhpco.org

Assisted Living Facilities

Consumer Consortium on Assisted Living
(703) 533-8121
www.ccal.org

National Center for Assisted Living
(202) 842.4444
www.ncal.org

New LifeStyles
(800) 869-9549
www.NewLifeStyles.com

Nursing Homes

“Nursing Homes: A Good Move?” MDA/ALS Newsmagazine, January 2007

Nursing Homes: Getting Good Care There, by Sarah Greene Burger et al., National Citizens’ Coalition for Nursing Home Reform, Impact Publishers, 2001

“ALS Information for Nursing Home Staff”
www.living-with-als.org/Diane/inservice.html

National Citizens’ Coalition for Nursing Home Reform
(202) 332-2276
www.nccnhr.org

Respite Help

“Respite Care Benefits Both Patient and Caregiver,” MDA/ALS Newsmagazine, November-December 2006

“Caregiver Respite: The Time It Takes to Make Time Is Worth the While,” MDA/ALS Newsmagazine, December 2005

Arch National Respite Network
(703) 256-9578
www.archrespite.org

Easter Seals
(800) 221-6827
www.easter-seals.org
Easter Seals provides services, including adult day care.

National Adult Day Services Association
(866) 890-7357
www.nadsa.org

National Respite Locator Service
(800) 473-1727
www.respitelocator.org

Respite Match (run by a man with ALS)
(678) 884-0281
www.respitematch.com

Shepherd’s Centers of America
(800) 547-7073
www.shepherdcenters.org

U.S. Administration on Aging
National Family Caregiver Support Program
www.aoa.gov/prof/aoaprog/caregiver/caregiver.aspx

U.S. Department of Veterans Affairs Office of Geriatrics and Extended Care
(877) 222-8387
www.va.gov/geriatricsshg
Veterans eligible for outpatient medical services can receive in-home respite care.

MDA ALS Caregiver’s Guide