"If there's anything I can do to help, just let me know."
Most caregivers have heard that open-ended offer at one time or another from family and friends, but few have actually taken them up on it. Why not, when the job of caregiving is so difficult and time-consuming?
There are several reasons why people don't ask for or accept help, say counselors who work with families of ALS patients. The bottom line: Many people simply are uncomfortable getting outside help, especially if they fear their needs will present a burden. And sometimes the ALS experience is so overwhelming that families feel that no one can help anyway.
But to do your best as a caregiver, you need to answer that offer with concrete, practical tasks, says Kim Wilson, MDA health care services coordinator in Denver.
"Burnout absolutely is a problem," Wilson says. "In our monthly support groups, we reiterate all the time that you need to delegate and take help from people."
Use it or lose it
Caregivers sometimes say they don't need the help "right now" but will ask when they need it. "A lot of people are trying to put these offers in a savings account," says Meghan Nolan, rehabilitation counselor at the MDA/ALS Center at the Carolinas Medical Center in Charlotte, N.C.
Over time, people tend to drift away, small chores become big ones and the job of caregiving becomes harder. Accepting assistance as you go along can help prevent burnout, keep tasks from piling up, and ensure that people remain connected to your family in supportive ways.
Nolan believes the best time to ask for help is "the earliest time possible. You don't form your army the day before the war. Set your support system of ‘soldiers' in place now so you have the strongest team possible if and when you face a tough battle."
If your family or friends haven't offered to help, there's still a cadre of people itching to pitch in, says Connie Bobo, who cared for her husband, Perry, until his death from ALS in 1993. She wrote about their experiences in On Eagle's Wings: Fulfilling the Needs of Your Terminally Ill Loved Ones (Freefall Factory, 1998).
"All churches have lists of congregational members willing to help with meals, sitting with patients, running errands, etc.," she advises. "A simple telephone call asking for help is all that is required."
Bobo saw firsthand how friendly offers of help dissipate over time. "It is human nature for others to return to their normal way of life — without you," she writes. "Since many of the ‘helping hands' will go away in time, use all the hands of others that you can, while you can."
You may want to ask a friend or relative to become your "task coordinator" and match people to jobs. You relay your needs to the coordinator, who finds people to fill them. This cuts down on the amount of asking you have to do, and ensures that no offer to help goes unused.
Your coordinator can match up helpers with such chores as:
Respite care: Wilson strongly recommends asking someone to come over for an hour or two so you can get a haircut or shop or just sit in the park and watch birds. If your family has children, ask for babysitting or for someone to take the kids overnight occasionally.
Home care: There are many concrete tasks in this category: lawn mowing; weeding and trimming; swimming pool care; painting; taking the car to the shop or changing the oil; washing the dog; minor home repairs.
Daily living: These are the chores that keep you going day to day, such as: grocery shopping; banking; housecleaning and laundry; going to the drug store or post office; getting out the bills; chauffeuring.
Useful gifts: People without much time may prefer to give you something else. Helpful gifts include: a book of postage stamps; sending someone to the house to give a massage, manicure or haircut; a takeout meal; a professional housecleaning; a video or book on tape.
Rather than filling jobs one at a time, cut down on the waiting with a "honey do" letter or a workday.
A "honey do" letter is basically a list of jobs and ongoing needs that's sent to everybody who's offered to help. Be sure to include a contact number and times when it's convenient to come over.
A workday lets you get a lot done and socialize at the same time. Send a letter stating a day, time and chores to be done. At the end of the work session, have a meal together to celebrate friendship and hard work.
Too much help?
Some people find they have too much of a good thing. When there are constant visits, it becomes difficult to have private family time.
Nolan says one family put a sign on the front door saying, "Thank you for stopping by and showing your concern. We won't be answering the door or phone from 2 to 5 p.m. while the family is resting. We'll talk with you soon. Your support is priceless!"
Helping is a blessing
Volunteering not only helps the caregiver, but the helper, too.
"It makes people feel good to be able to help, because they feel helpless," says Kristin Blackwell, clinical research coordinator at the University of Colorado MDA/ALS Clinic. "I want caregivers to see that they are almost doing a favor for the people who want to help."
A valuable resource on getting help with caregiving is Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, by Cappy Capossela and Sheila Warnock (Fireside, 1995).