Is volunteer help really appropriate for all your needs? When is it safe to take advantage of a friend’s offered favor, and when is it wise to politely decline it while expressing your appreciation?
Perhaps you have learned to be cautious about generously offered help. Many caring people often offer “to do you a favor anytime,” yet when you trust in their sincerity and try to cash in, their enthusiasm is replaced by hesitation and reluctance. Too often the originally unconditional offer suddenly develops some obvious and yet undefined conditions. When you cannot fully trust in a friend’s offer of a favor, it becomes easy to question your trust in that friendship.
In truth, usually the friendship is not in question, but merely the friend’s availability
for fulfilling the offered favor. The friend’s unlimited feelings of support, caring, or love for you have become confused with the limited availability of personal time and energy to fulfill favors.
So, when it comes to offered volunteer help:
– What offers can you trust?
– Who can you trust?
– When can you trust that offered help will actually be available?
– Are there any consistent guidelines? If so, what are they?
Essential When Appropriate, Abuse When Not
First, do you need—and when should you use—volunteers? The temptation to maximize your use of volunteers, without the need for guidelines, is strong. It appears, at first glance, that volunteer help is always available, quickly and on-demand, and with significant financial savings. In short, volunteer help maximizes your freedom, and it is free!
However, is volunteer help really appropriate for all your needs? When is it safe to take advantage of a friend’s offered favor, and when is it wise to politely decline it while expressing your appreciation?
You probably instinctively (and appropriately) use volunteer help for some of your brief, one-shot needs. If you are on your own and independent each day, you use brief volunteer help each time a stranger opens and holds a door into an office building, a cafeteria worker carries your tray to a table, or a grocery bagger loads your car. The only pay each expects is a simple “thank you.” If only fulfilling all your ADL needs were this simple!
In another situation, some folks routinely and successfully use dedicated, dependable help from organizations that recruit and maintain large pools of volunteers. Examples include volunteers who provide reading, tutoring, and occasional companionship during leisure and shopping events. Surely, using this type of volunteer help must be okay.
In yet another situation—emergencies—the volunteer help we openly offer each other is essential. However, when you need general help, and you want to justify your desire to get it promptly from the nearest person, it is tempting to stretch the true definition of an emergency to mean urgent, important, or simply “want it now.”
At what fuzzy point does your concept of a favor exceed the volunteer’s intentions and become the volunteer’s concept of a burden?
As a beginning guideline, it is not reasonable to expect most volunteers to be at your apartment each day at 6:00 a.m. to help with your “get up” routine. For any recurring or extensive need for personal and medical assistance, volunteer help is seldom the answer. These are your activities of daily living needs (ADLs). Discrepancies too often occur between the frequency, length, punctuality, and dependability of your ADL needs and the volunteer’s availability.
Generally, for brief and non-routine needs, volunteers can be essential for doing favors. However, for routine, personal ADLs, hired help is usually the best approach. Again, we are not questioning here the dedication of volunteers, but merely the appropriateness of using them for certain needs.
A Real-life Experience of Overusing Volunteer Favors
During my college years in the late 1960s, I lived for a time in a campus dormitory. I had one of the 75 two-person rooms in the three-story dorm and easily became friends with many of the 149 other students who shared the same building.
I was a 19-year-old, spinal-cord-injured, C5–6 quad (tetra) using motorized wheelchair mobility. When I arrived at the Illinois campus from New York, a formally-hired fellow-student PA [personal assistant] greeted me at the airport. During the previous summer I had placed a classified ad in the campus paper. Patrick, a junior, had answered the ad. By phone, I had described my needs. I was incredibly appreciative of Patrick’s response to my ad, and he had fully met the stringent requirements I had set: He was able-bodied and had a pulse!
I trained Patrick to assist me with dressing, wheelchair transfers, using the toilet, and showers. Just 18 months postinjury, I wanted as much as possible to deny my disability and my dependence on formal PA help. I had wisely arranged for Patrick, my sole PA, to be my roommate in our two-person dorm room. I reasoned, way back then, that if my only PA slept in the same dorm room, I would not need to worry about his availability each morning and night. At that time, no handbook on PA management…was available. I was just taking one common-sense step at a time to fill my needs while trying to minimize personal risk.
As I now reminisce, I was ashamed of my disability and my dependence on the personal help I required from Patrick. In 1968, I was among the first generation of trail-blazing quads. For coping with my more extensive limitations, I found peer role models to be rare. I was the only quadriplegic student in my dorm who got toilet and shower help from his roommate. I guess I resented—even as I regretfully accepted—the morning and evening help, so I wanted my daytime lifestyle to be as able-bodied (AB) as possible.
I was afraid to ask for too much help from Patrick by stating further needs during the day, between classes. He was my very first hired aide, and I denied myself imagining any possibility that he might resign because my needs for his help had become overwhelming to him. Like any one-and-only aide, Patrick held enormous power over me—and both of us knew it. After just a few days, he was already tiring of his morning and evening, 24/7, continual duties and lack of freedom. I knew I would have a few undeniable needs for help during the day, but I sensed that assigning Patrick additional daytime duties would have pushed him beyond his tolerance. It would never have occurred to me to hire a second daytime aide.
At the beginning of each semester, when we all made new friends, several students would typically introduce themselves to me and emotionally offer, “Skip, if you ever need anything, please be sure to call me. I will be so glad to help you.” I would then file that name and face away for future use.
When Patrick was not around, a book might drop on the floor in my room, my electric typewriter (remember—or ever hear of—those?) might not be plugged in when I wanted to type a report, or my urinary leg bag might need an empty before Patrick was scheduled to return. Consequently, I would often ask one of my dorm neighbors for just a tiny favor that would require just a second.
I usually tried to specially phrase a favor to trivialize it. As most people do, I would word each favor so it appeared to be small and brief. When I now remember the embarrassment, shame, and stress I felt when asking each favor, I now admit that my primary objective was to reduce my own guilt. My subconscious self knew that my overuse of favors was inappropriate; my conscious self was in survival-stage, disability denial.
I did not have a monopoly on overusing volunteer help. Although I used a motorized wheelchair, some of my more disabled wheelchair buddies had come to the large campus with manual ones. Their limited physical ability, their desire to be active in the campus mainstream, and the mile-long campus would have all combined to make a motorized chair a wiser choice. However, their ego-fueled desire to deny their true limitations caused them to be stubbornly loyal to their manuals. While I independently whizzed by in my motorized chair, they would routinely be sitting at various points of the campus sidewalks, begging for a push to class, to the library, or to the pizza place downtown.
Trusting in the sincerity of our friends who had offered to do favors, we asked and were usually granted our initial requests. As we thanked them the first and second times, we received the standard volunteer-help pledge renewal: “Do not mention it. You are so welcome. Remember, call me anytime.” However, there was noticeably less enthusiasm in these subsequent renewals than there had been in the original offers.
After the first week’s series of granted favors, our AB dorm buddies no longer offered to do us favors. Gradually and consistently they began to avoid us. However, since we still depended on them for help with certain needs, we learned from trial and error some of the even finer points of downright begging.
Each of us should have noted—as a warning flag—the attitudinal change in our dorm mates. Initially, they offered us favors; now, since they no longer offered favors, we were aggressively begging and tricking them into providing help. We should have realized we were overusing and abusing the volunteer help. We should have faced the extent of our disabilities and needs and assumed justifiable responsibility for formally hiring PAs or obtaining appropriate mobility equipment. That current situation was costing us friendships with the unwilling volunteers, as well as our own self-respect and independence.
If you look as though you are anxious to ask a favor from the next passerby, the next passer will avoid eye contact or change direction to stay outside your pounce-and-beg distance. In contrast, if you seem preoccupied and free of need, they will erroneously feel safe to approach you and occasionally even start conversation.
After a semester or two, some of us realized we were sacrificing the potential for many friendships as the cost of routinely asking for favors that were no longer offered to us. Sociologically, it was interesting that some of us decided to hire the help we needed and stop asking for favors. The friends who had been avoiding us soon started warming up to us again. However, others did not catch on. They continued to beg favors and encounter avoidance.
I still today routinely depend on, ask for, and receive favors. However, what I learned—and am about to pass on to you—is the what, when, where, and from whom of asking appropriate and usually welcomed volunteer favors. If I have a routine help need, I formally arrange for a paid provider who is genuinely happy to provide the help—and my conscience is clear. No more shame, guilt, or stomach knots!
Reasons for Preferring Volunteer Help
There is a common progression for first taking advantage of offers for friendly favors and then gradually slipping into overusing and abusing them. Able-bodied folks are mostly independent in their lifestyle, and they rarely need to ask for favors from friends. Consequently, ABs rarely get into trouble by asking for too many favors, or by asking for help with unsuitable needs. In contrast, if you have a disability, you are more dependent on help from others. Some needs are appropriate for volunteer favors, and some are not.
There are at least six situations in which you can feel comfortable using volunteer help. These are detailed near the end of this [article]. Some situations continue to be okay for asking favors.
Where, then, is that controversial area that gets so many of us into trouble by straining friendships in overusing the favors that are offered by volunteers? Perhaps the primary difference between an AB’s needs and yours is in your routine, day-after-day need for help with ADLs. In the most inner circle is the need for assistance with some or all the following:
Urinary collection device or self-catheterization supplies
Bowel program
Bathing or showering
Getting dressed
Food preparation and eating
Taking medication
Wound care
These are the hard-core needs for which you require solid, dependable, and continuous help providers. The help for these ADL needs should not come from the impromptu volunteering of your friends; it should be hired.
Is asking for volunteer favors so tempting because the help is free? There are several reasons related to having a disability that make using volunteer help especially attractive.
– Independence
First, you want to think of yourself—and be seen by others—as a strong person who does not need help from others. The presence of a disability often requires us to routinely ask others for help. We are forced to develop the strength and courage to ask—and the humility to accept it.
Asking for help is not a sign of weakness but of strength. However, many, many people are so weakened by their own pride and ego that they are actually unable to [do so].
– Denial
You want to believe your dependent needs for help are so minor that formally hired help is unnecessary, and that mere help from occasional favors and volunteers will be adequate. If asking for help has a negative image, and your disability requires you to do so, your preference is to ask for favors from volunteers rather than pay for help from employees. Again, you probably have an understandable desire to accentuate your strengths and deny your weaknesses—and your disability.
– Informality
It is easy to fall into the volunteer trap because volunteer help is readily available whenever you need it—no muss, no fuss. If you prefer not to think about your routine needs for help, you will also prefer to spend a minimum of time and effort in getting that help. That means a preference for asking strangers for quick favors, instead of spending time recruiting employees.
– Limitations
In contrast to having volunteer help available as needed, using hired help would require formally identifying, listing, and scheduling your needs, and then limiting the availability of help to that schedule.
– Experience and Skills
Also in contrast to using volunteers, perhaps you lack experience and the required skills—or simply prefer not—to formally recruit, hire, train, and schedule paid help and then by committed to routinely performing this cycle. Asking for favors from volunteers is so easy and requires few skills, except knowing how to beg from and con people.
– Cost
Finally, in contrast to the free volunteer help, hired help costs money. The bottom (financial) line is that favors from volunteers are free.
Signs of Overusing Volunteer Help
There are common warning flags that should signal the wisdom of shifting dependent needs from volunteer to hired help for your ADL needs.
First, if you feel increasingly uneasy, stressed, and guilty about continuing to ask for favors.
Second, you sense volunteers are no longer eager to do favors or provide help, and are trying to avoid contact with you. You feel you are abusing friendships—you know it, and they know it.
Third, you sometimes feel angry when your request for help is declined or granted with reserve. You now suspect you are angry with yourself for denying to yourself the extent of your needs and for procrastinating in formally hiring help.
The time has come for you to admit your extensive need for routine help, to hire it, and to resume enjoying friends for their friendship.
Sources, Purposes, and Guidelines for Appropriately Using Volunteer Help
To this point, we have been warning of the inappropriate use of friends and volunteers for routine ADL needs. In contrast, remember there are some situations in which it is okay to continue to ask for favors. Unless you are quite wealthy, it is usually not practical to have the constant accompaniment of hired help (or of chronically tired family caregivers) wherever you go.
The primary caution in appropriately using volunteers is to understand the following:
The sources of help
The appropriate types and limitations of help available from each source
How to take advantage of each source’s help
How to “reimburse” the volunteer help provider—always with appreciation and sometimes with monetary tips
Here are six sources and types of readily available volunteer help with guidelines about using them.
(1) Caregiver help
Suppose family caregivers have agreed to provide routine help for personal needs. Boundaries and guidelines are essential but often do not exist. You should take responsibility for establishing guidelines and then periodically calling family meetings to review the family’s welfare.
Just as there is “no place like home,” there is also no equal to the caring, warmth, and love that come with the help provided by family caregivers. Caregivers will often agree to do almost anything for you, and therein lies the caution about using their assistance. More than 50% of caregivers are chronically tired and depressed because they are overdoing without sufficient rest and time off.
As important as it is for them to establish and maintain limits on how much they do for you, most caregivers find it nearly impossible to say “no” to the loved ones whom they help. If you get help from your family, do them a favor. Be the one who establishes limits and insists on formal, periodic family review meetings.
A family-wide discussion—that includes you, family caregivers, and other family members—to review how things are going should be held at least once each month, and more often when problems or tempers surface.
The agenda for family meetings should include a review of the following:
– How tired they are (yes, you can trust that they are tired).
– What changes in duties and scheduling—for you, caregivers, and other family members—would make life easier for the family?
– Whether the family should consider hiring some, or more, outside PA help, especially for your ADL needs.
(2) Friends and neighbors
People you know well or who live nearby have probably offered to do general favors or provide help with certain kinds of tasks. Know that their true availability for favors is so limited, and so important, that they should be saved for only the most important events: crises and emergencies.
Out of their care for you, they might promise you the sky. However, as with your family caregivers, it is your responsibility to set realistic limits on what favors you request and how often you do so.
A good rule of thumb is to save them for real emergencies and to use formal volunteers from civic groups or paid PAs for routine needs. Your experience will tell you what limits you should set for their help. These people will give you 150% in the truly rare crises and emergencies, but not for routine, daily ones!
Their offer to “help you anytime you need anything” is, indeed, an emotional testimony of their friendship, caring, and often love for you. However, compared to the carefully calculated commitments made by organizational volunteers, friends often first make an emotional, off-the-cuff offer…and then they start thinking about it.
You should interpret these friendship volunteer offers:
Primarily, as expressions of good will
Second, as valid offers of help for true emergencies
Third, not as help that is intended to be routinely tapped for ordinary needs
Keep their phone numbers on a printed list and stored in the one-button speed dialer of your bedside phone. When an emergency occurs at 3:00 a.m. and your life or property is in danger, feel comfortable in knowing these people are truly eager to help you.
(3) Strangers and passersby
Those whom you encounter in stores and on streets can be tapped for brief, one-time help with simple needs. Feel comfortable in asking for help while respecting some people’s concerns.
These folks fulfill a very special niche in your everyday independence in the public mainstream. If not for them, many of us would have to bring a paid PA wherever we went. These are the good Samaritans who:
Open and hold doors into public places
Pick up your car keys when you drop them
Spot your car breakdown along the highway and change your flat tire
Offer to carry your burger, fries, and drink from the fast-food counter to a nearby table in the shopping mall
Give you and your wheelchair an emergency push back to your car when a part breaks
Help you sit up straight again in your wheelchair when you lose your balance and fall forward
Like your friends and neighbors, many of these folks would be thrilled to assist you in an emergency. Because you are not repeatedly “hitting up” the same people, you can more frequently ask different strangers for one-shot help with brief needs.
When asked politely, told how important their help is, and thanked afterward, few strangers will refuse you if:
– The favor will not take them too far out of their way
– They are not already in a hurry and your need is brief
– They are physically able to provide the help
– The task is not too personal as to make them feel uncomfortable
– They do not believe their own possessions or personal safety will be jeopardized
– They do not have a private, personal reason or hang-up for not helping you
Bystanders are often observing your entire interaction with the good Samaritan stranger who helps you. Most onlookers have one or two of these three reasons for watching instead of helping:
They are curious and will watch anything.
They are willing to help and would eagerly add their assistance if it be- comes necessary.
They are currently too uncomfortable to offer help to you, but if your interaction with the good Samaritan goes smoothly, they might decide to offer help to someone else in the future.
Each time you work with a stranger, you are simultaneously receiving help, educating the public, and changing attitudes. Improve the future for yourself and the rest of us by clearly expressing appreciation to the helping stranger, and so making a favorable impression with any onlookers.
(4) Employees of retail stores
Employees of retail stores and other businesses have been formally designated to receive help requests or to offer assistance as you enter a store. Feel free to ask for whatever help you need to have the same access to the store that able-bodied customers have. In the United States, much work went into the drafting and 1990 passage of the federal Americans with Disabilities Act (ADA); take advantage of these legislated rights.
Unfortunately, a few folks who have obvious disabilities, and a bad attitude, have a tendency to feel anger when clerks offer help, and to “blow them away” with an angry reply. There is no reason to get angry at innocent clerks who are simply doing their jobs.
(5) Employees of service-oriented businesses
Employees of hotels, motels, restaurants, and other service-oriented businesses are often on a minimum salary because of the tips they get from the public. These employees are in- cluded within this section on volunteers because they offer assistance without requiring a monetary fee or charge. However, a financial tip for many services is a cultural expectation. Take advantage of their help, and provide them with verbal appreciation as well as the customary financial tip when they deserve it.
Yes, these businesses are also subject to ADA requirements. However, the culture in many countries has traditionally required a 15–20% tip—long before ADA—for the following:
Parking lot attendants, who park or watch over your car
Hotel bellhops, who carry luggage to your room
Hotel concierge, who provides you special services
Restaurant wait staff, who serve your meal, and can be asked to cut up food
Hotel room service, who will deliver just about anything to your room
Taxi drivers, who also help you with luggage and your mobility aid
Home-delivery people, who deliver something to your home
Airport skycaps, for handling your luggage
Although each of these people routinely provides a traditional type of help, most are also glad to provide you with the extra accommodations your disability requires.
You should feel comfortable in asking for extra help; someone can always decline a request that is not appropriate. As a quadriplegic who uses a wheelchair, I have traveled alone extensively. I have learned to ask for help and provided detailed instructions for my special needs. In return, I have been especially appreciative when a provider deserves it.
Without these willing service providers, much of your independence would not be possible unless you brought your own salaried help with you.
(6) Volunteer groups
Members of volunteer service groups, hospital auxiliaries, centers for seniors and people with disabilities, meals-on-wheels groups, churches, and other civic organizations want to provide specific kinds of volunteer assistance. You should not feel guilty about making volunteers feel good by accepting their services.
Take advantage of the help they offer, and in return, offer to join a group to provide your own help to others, or to donate money to the organization. There are few experiences in life as rewarding as helping others.
The good news about volunteers is that usually they are dedicated, dependable people who want to serve and be needed by others. Their services are free, except perhaps that donations are frequently “welcomed,” though not requir-ed, by their sponsoring civic group.
You might want to call several volunteer agencies and map out what volunteer help is available, from which agency, and for what kinds of needs. You might find that after your routine, hired help gets you out of bed and dressed, volunteer help might furnish you with meals or with transportation within the community.
Universal Tips for Getting Help from Volunteers
With these six sources for volunteer help and the guidelines for using it, keep in mind these universal suggestions when you ask for help. Smile, make direct eye contact, speak clearly and warmly, and be assertive, in order to:
– Get a help provider’s attention
– Ask for the help you need. Provide clear, patient instructions about what you need and how you want it provided.
– Express sincere appreciation
For service-oriented restaurant wait staff and the like, provide the customary monetary tip, plus a bit extra if you can and they deserve it.
– Politely accept a provider’s occasional decline of your request and promptly look for another person.
– Save friendships for having fun, not for using the restroom
The moral to these very true and common stories is to keep to a minimum favors you ask of volunteers, friends, fellow students, and co-workers. If the cool reaction you get when asking a favor seems to say that you might be wearing out your welcome, then you probably are.
When this happens, start taking notes to identify the what, when, where, how, and feel often regarding the favors you have been overusing. Then schedule a hired PA who gets paid for doing you those favors.
And by all means, if you require a motorized mobility aid, get one. You may initially be concerned that you might look or feel “more disabled” if you use a motorized instead of manual wheelchair. However, it is almost guaranteed that you would be the only person who would feel that way.
A primary goal of independent living is going where you wish, when you wish, and with a minimum of physical dependence on others. You will appear to yourself, as well as to others around you, to be far more disabled if you are often begging pushes to destinations in your manual.
The alternative is to arrive independently, on schedule, and truly in the mainstream. Save your manual for exercise around the house and for bite-sized trips that match your strength and stamina.
Your friends and co-workers will not care what provides power to your four wheels, or who routinely helps you use the restroom, as long as it is not them! At the end of a social gathering, would you rather have your friends impressed by remembering your able-bodied wit and conversation, or the way you needed their help to transfer and use the restroom’s toilet stall?
This article is excerpted from Chapter 2, “Volunteer Help: Don’t Wear Out Your Friendships,” of Caregivers and Personal Assistants, by Alfred H. DeGraff, MA, SEA, PhD, www.saratoga-publications.com. Used by permission.
