How to cope: Just say yes 
Long-term care 
Other assistance 
Rewards of caregiving 
Additional resources 
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.
ALS in a Small Town: Problems and 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
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-the-clock shifts to a few hours a week.
“Unless you take time, attention and determination to refill your cup, you will not be able to give your loved one a drink from your cup. Unless you keep your cup at least partially full, you will be unable to offer much of anything to anyone. You are well worth the effort.”
“The trick to finding answers is simple: Ask. People who accept the view that there are no answers will find no answers.”
“Once or twice a week I would have my caregiver come from noon until 9 p.m., when [my husband] was put to bed, so that I could get out and have some ‘me’ time. I would take my kids and do something special with them, or even just go to a movie and chill out. Selfish? Sure, but no one else was taking care of me so I had to do it. It also gave me morning time with [my husband] without a caregiver in the house on those days, when we would move at a much slower pace.”
“I’m 24/7/52 for my wife. Cooking the meals, shopping, doing the laundry. I can’t leave the house for five minutes without getting someone in. And it can’t just be a friendly neighbor — it has to be someone who has done the (ventilator) training course.”
— “No Regrets for a Life Less Ordinary,” Dominion Post, Wellington, New Zealand, Sept. 1, 2005
“The nurse was extremely nice. She would come out and talk to my parents, just general conversation. She was only there to perform routine blood tests, take vital signs and such, but she spent much more time being a friend.”
Home health agencies usually are Medicare-certified, 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 medical-related 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 and 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.
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.
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.
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
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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 and cons of hiring directly:
|“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.”|
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:
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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 and 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 websites that will do this for a fee or will explain ways to go about searching; see lexisnexis.com , choicepoint.com , virtualchase.com  and searchsystems.net .
Introduce the person with ALS and get his or her reactions. Trust your instincts.
Is Your PCA Driving You Crazy? , Quest, March-April 2007
The Working Caregiver Dilemma , MDA/ALS Newsmagazine, November-December 2006
Despite the Challenge, People Love Their Live-Ins , Quest, November-December, 2005
The Personal Care Attendant Guide: The Art of Finding, Keeping, or Being One, by Katie Rodriguez Banister, Demos Health Publishing , 2006
Caregivers and Personal Assistants, by Alfred H. DeGraff, Saratoga Access Publications , 2002
Avoiding Attendants from Hell: A Practical Guide to Finding, Hiring and Keeping Personal Care Attendants, by June Price, Science & Humanities Press , 2002
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“Perhaps you can explain to him that, although physically caring for him is a way to be together and gives you both satisfaction (and avoids having strangers in the house), it is very tiring for you and will become extremely difficult in the (hopefully) long run. Also, it will leave less time and energy for the more pleasant things you usually do together.”
“My mom has had ALS for four years and is opposed to much evening help from outside the family. Now, as things get worse I fear my dad and I are not enough help throughout the evenings and weekends. I spend around 30 hours a week with her now, outside of work and my own family, and am getting worn out. How do I make her see we need help, but that I am not abandoning her?”
“My mother does not refuse help because she knows how much we need it, but she doesn’t like having someone around all day. We hired a caregiver that is around the same age as my mother and has similar interests. When my mom wants to be alone she just lets her know, and the lady will go in the other room, read a book or watch TV.”
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“In a rural town there are few services available. In order to manage your daily life with ALS, you need to use all available resources. When needed, family and community members run errands and take our two teenagers to high school when it rains and the school bus won’t tackle the long and bumpy dirt road. If you don’t have an extensive support system in place, already (i.e., friends, family, a close-knit community), then either move or start making friends. This is not a disease that can be battled alone.”
“We were lucky enough to have two dear friends who not only brought meals twice a week, but they stayed to keep us company while we ate, feeding [my husband] so I could enjoy a hot meal, then cleaned my kitchen for me while I put him to bed. Then they would make a pot of coffee and sit and visit with me for a few minutes once things quieted down. They never stayed more than two hours and seemed to know which days the meals were most needed.”
“Tell people what you need when they offer help. Even if it’s a gallon of milk, let them get it for you. One less thing to fret over.”
“If you give people a task they’re suited for and are comfortable doing, they lose their fear of getting involved. Give them a group to work within, a structure to fit into. Give them an opening to say yes or no — and oftentimes they come back with an even better suggestion of a way they can help.”
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:
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:
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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.
“We call often; I maintain a website that I regularly update with photos of the kids, what we’re up to, etc. The kids occasionally write e-mails and send drawings, but I want to do more. We are going to start volunteering; if I can’t help out my father-in-law in person, I can at least help a local ALS patient.”
“I live in Canada, and my parents are in the States. Although packing up and moving home was all I wanted to do, I knew it wasn’t the best thing for my family and two young children. I felt terrible, and struggled with it for so long. I am lucky that as a teacher I can spend a decent amount of time with my parents in the summer. The distance cannot take away from your relationship, and in the end (as ALS teaches us) memories, moments and those important relationships are all that really matter in this world.”
“Being part of the group was the most important caregiving lesson I could ever learn … how to take care of myself while I took care of others. As I learned to share workloads, decisions, feelings, and responsibilities — to ask for help when I needed it and allow myself to say no sometimes — my life began to return to me.”
— Share the Care 
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. Long-distance caregivers have special difficulties:
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:
Long-distance caregivers also can work with primary caregivers who see the loved one daily.
Handbook for Long-Distance Caregivers , Family Caregiver Alliance, (800) 445-8106
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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 .
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 website such as MDA's myMuscleTeam  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 below for information on how to organize a Share the Care circle; next time someone energetic and committed offers to help, suggest trying this approach.
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
Teaming 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 , 2004
Websites that allow you to create personal pages to organize caregivers
CareCircle , (914) 954-1712
CaringBridge , (651) 789-2300
eHope , (207) 856-7340
Lotsa Helping Hands 
Share the Care , (212) 991-9688
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by Alan Coleman
From the beginning, remember this: Yes is not a dirty word. There is one question that you will hear often, “Is there anything I can do to help?” You need to get in the habit of answering that question with Yes. There are two reasons to do so.
Make a list
Not only do you need to say Yes, but you need to be able to answer the next question you’ll hear: “Okay, what can I do?” To answer this question, you need to make a list. Before you start your list, understand this: the help you get from others DOES NOT have to be direct care for your loved one. It can be anything you do in your daily routine that can be done by someone else. When you start your list, think of it as a diary of everything you do for a week ... and I do mean EVERYTHING. Start in the morning when you first get out of bed and list everything you do for your loved one AND everything you do for yourself all day long until you’re back in bed at night. As the week goes on, you can leave off things that you’ve already put on the list. For instance, if you go to the mailbox every day, just list it one time. At the end of the week, eliminate any items that repeat.
Then you are going to remove anything on the list that is physically impossible for someone else to do. For instance, nobody but you can go to the bathroom for you (remember, I said EVERYTHING goes on the list). Next, remove anything from the list that your loved one simply prefers that you do. There were some bathroom chores that my wife, Dink, didn’t mind other people doing for her and those stayed on the list. There were other bathroom chores that Dink did not feel comfortable with anyone BUT me doing, so those things came off the list.
What you should have at this point is a list ... preferably a long one ... of everything you do that can be done by someone else. Actually, what you have is the initial list. You should never consider your list as being “completed.” Add to the list constantly as your daily routine changes and always keep a few copies of the list with you so you can give them to people who ask.
Now you’re set. When anyone asks what they can do to help, whip out the list and let them choose.
Bring in the cavalry
The extent to which you need outside help with your caregiving responsibilities is going to vary depending on the nature of your loved one’s condition. If your loved one has a degenerative disease, like Dink’s ALS, then having outside help will be critical to the success of your caregiving efforts. In fact, you will not be able to do it alone ... there’s just not enough hours in the day and you simply don’t have enough hands! Obviously the solution is to recruit as much help as you can, but what is not so obvious is that you may have to recruit help to handle all the help you get.
We had some wonderful people step to the plate for just that purpose. A lady at our church volunteered to organize all the meals that people brought to us. It was awesome. When anybody came up to me and said they wanted to bring us a meal, I told them to go talk to Judy. I never had to worry about it ... all I had to do was be at home when the meals were delivered. Two other ladies — one from church and one from Dink’s work — volunteered to coordinate the sitters that came in to stay with Dink when she could no longer be alone while I was at work. They handled everything from recruiting to training to scheduling the ladies that we came to call “Dink’s Angels.” There’s no telling how much stress they took off my shoulders as the efforts of all of these people allowed me to concentrate on taking care of Dink.
You can find volunteers among any group of people to which you belong. Your workplace. Your loved one’s workplace. Your church. Social or business clubs. Obviously family — Dink’s entire family gathered monthly to clean our house and do yard work. Just put the word out that you need help, identify key people who will be willing to help you manage the help you get, then turn those responsibilities over so you can concentrate on caring for your loved one. Remember, the goal is for your loved one to be cared for, not for you to martyr yourself to their care. Which leads to my next point.
Take care of yourself
This was the hardest thing of all for me to do when I was taking care of Dink. But it’s also the most important thing you can do. If you don’t take care of yourself, you won’t be able to give your loved one the best care you’re capable of. It’s just that simple. I know ... there will be times — many times — that you will feel guilty about doing things that you used to do with your loved one. Or doing things that your loved one simply can’t do anymore. But you have to do those things to keep yourself healthy ... in mind as well as in body.
Arrange times that someone else can stay with your loved one for a few hours while you get away, BUT, don’t use those hours to do things on the list you made! This time is for you to get away, get rested and get rejuvenated. Go for a drive. Go to a park. Go to the library and read something pleasurable. Go for a walk, run, bicycle ride, swim, workout, or whatever else you enjoy doing to keep yourself fit. If you have a hobby, concentrate on it for a while. Go see a sappy movie. What you do is up to you, just be sure that you do something for your own well-being.
I can’t help thinking about those goofy instructions you hear every time you get on an airplane. Put YOUR [oxygen] mask on first, then take care of the other person. It’s important enough to repeat: If you don’t take care of yourself, you can’t take care of someone else.
(Reprinted with permission by Alan Coleman, author of "Firmly in His Hands: Smugs and Hooches, Dink," 2002.)
Assisted living facilities 
|Nursing homes |
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.
“The level of care Mom needs now is great and we are drowning a bit trying to work and care for her, too. We called hospice, I asked that they be sensitive as we really haven’t discussed all the possible symptoms that she might develop since everyone is so different.”
“Get all your equipment before you sign on hospice; insurance won’t pay for these items once you’re in hospice, but will if you have a home health agency. Some hospices accept people with feeding tubes, BiPAP and CoughAssist but prefer them to be in place.”
“Ask if a facility has ‘ALS protocols’ — procedures useful in caring for people who are paralyzed, speechless or on a vent, such as Hoyer lift operation or communicating via alphabet board. If not, ask administrators if they’re willing to learn about ALS, make changes and train staff to meet the unique needs of ALS patients.”
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.
Long-Term Care: How to Plan and Pay for It, 9th ed., by Joseph Matthews, NOLO , 2012 (updated annually)
Assisted Living Federation of America , (703) 894-1805
Types of Long-Term Care , Medicare.gov
National Clearinghouse for Long-Term Care Information , U.S. Department of Health and Human Services
Eldercare Locator , U.S. Administration on Aging, (800) 677-1116
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:
Not Gloom and Doom: Demystifying Hospice , MDA/ALS Newsmagazine, January-February 2010
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 , (800) 347-1413
HospiceDirectory.org , a subsidiary of Hospice Foundation of America , (800) 854-3402
Hospice . A website offering information, as well as local and international listings.
Hospice Patients Alliance , (616) 866-9127
National Hospice and Palliative Care Organization , (800) 658-8898
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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.
In 2012, the national average cost of an assisted living facility was $3,300 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.
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|“Ask if a facility has ‘ALS protocols’ — procedures useful in caring for people who are paralyzed, speechless or on a vent, such as Hoyer lift operation or communicating via alphabet board. If not, ask administrators if they’re willing to learn about ALS, make changes and train staff to meet the unique needs of ALS patients.”|
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.
Nursing Homes: A Good Move? , MDA/ALS Newsmagazine, January 2007
Nursing Homes: Getting Good Care There, by Sarah Greene Burger et al., The Consumer Voice , 2002
ALS Information for Nursing Home Staff  (From Both Sides by Diane Huberty, neurology-certified RN and person living with ALS)
National Consumer Voice for Quality Long-Term Care  (formerly National Citizens’ Coalition for Nursing Home Reform), (202) 332-2275
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Online and delivery help 
Home modifications 
|Medical 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.
Think Mobile , MDA/ALS Newsmagazine, September-October 2009
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.
See Chapter 2 — Accessibility at Home .
A contractor’s organization may donate labor; also look for a local Home Builders Foundation.
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“I have been an R.N. all my adult life, eight years as a hospice nurse, yet never encountered ALS until my dad was diagnosed. Look at the years I didn’t have a clue.”
“My sister seems to feel better when she can talk to someone other than family and close friends, such as care workers, the hospice staff and even the chaplain that visits her a few times each week. She can talk openly with people like that, where with family, we always want to hear what WE want to hear, and not always what she wants to say, and that is natural.”
“I tell patients, ‘I’m not here to replace your physician. I’m here to augment your physician.’ I really encourage patients and family members to call me if they have a concern or they have a worry, if they have a problem. I don’t want them sitting on it and not contacting us and just getting anxious when maybe there’s a pretty easy solution. If it’s a more complex issue, then the patient needs to be seen sooner.’”
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.
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, Claren Books , 2003
Get Palliative Care . Includes a palliative care provider directory, a detailed description of palliative care, direct links to palliative care-related organizations and more.
National Association of Hospital Hospitality Houses (NAHHH) , (800) 542-9730. NAHHH represents organizations that provide lodging and service for families receiving medical care away from home.
National Patient Travel Center , (800) 296-1217. Helps locate air transportation for patients who need distant specialized medical care.
Patient Advocate Foundation , (800) 532-5274
Visiting Nurse Associations of America, (202) 384-1420 
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“Sometimes life even gets better at a care facility, thanks to activities not available at home, like pool therapy, classes or people to talk to. It’s never easy, but there’s relief in knowing competent care is available when needed.”
“Planning ahead is the best way to land in the best spot. When you know you have ALS, get on waiting lists at many assisted living and nursing homes.”
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 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!
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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.
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
National Respite Locator , a service of the ARCH National Respite Network and Resource Center , (919) 490-5577, ext. 223
Easter Seals , (800) 221-6827. Easter Seals provides services such as adult day care.
National Adult Day Services Association , (877) 745-1440
Shepherd’s Centers of America , (800) 547-7073. A network of interfaith community-based organizations
National Family Caregiver Support Program , U.S. Administration on Aging
U.S. Department of Veterans Affairs - Office of Geriatrics and Extended Care , (877) 222-8387. Veterans eligible for outpatient medical services can receive in-home respite care.
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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. 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.
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See Chapter 1 — Resources .
Family and Caregiving Resources for People with ALS , MDA/ALS Newsmagazine, May 2007
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
The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers, 3rd ed., by Maria Meyer and Paula Derr, Caretrust Publications , 2007
American Medical Association Guide to Home Caregiving, by the American Medical Association, Wiley , 2001
MetLife Mature Market Institute . This site offers many resources for caregivers and those recently diagnosed. Search for content using keyword "caregiver."
Check county and state government listings for:
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 your MDA office and clinic for other local supports.
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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, Office of Disability  or Centers for Medicare and Medicaid Services — Waivers .
Family Caregiver Alliance , (800) 445-8106. Lists state-funded services for family caregivers
Family Caregiver Support: State Facts at a Glance  (PDF), National Conference of State Legislatures, 2006
National Family Caregivers Association, (800) 896-3650 
The Eldercare 911 Question and Answer Book, by Susan Beerman and Judith Rappaport-Musson, Prometheus Books , 2005
American Association of Retired Persons , (888) 687-2277
Children of Aging Parents , (800) 227-7297
Indian Health Service Elder Care Initiative 
National Association of Professional Geriatric Care Managers , (520) 881-8008
U.S. Administration on Aging (AoA) , (800) 677-1116
National Association of Area Agencies on Aging 
U.S. Department of Veterans Affairs - Office of Geriatrics and Extended Care , (877) 222-8387
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 Red Cross , (800) 733-2767
National Family Caregivers Association , (800) 896-3650
Leading Age , formerly American Association of Homes and Services for the Aging
Training Program and Resources , (888) 846-7008. Offers training programs, books and Home Care Companion video collection.
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