How to cope: Just say yes
Rewards of caregiving
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
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:
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
“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.”
“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:
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
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