In Sandstone, Minn., Alea, 16, and Alexandra, 13, have added “caregiver” to the long list of roles they assume in life, including daughter, sister, friend, teenager and student. The girls’ father, William Anderson, learned he had ALS on March 26, one day after his 49th birthday.
To date, Anderson’s symptoms include weakness and lack of coordination in his hands, arms, shoulders, chest and back. He retired from his job as a corrections officer with the state of Minnesota due to the progression of his symptoms, but still serves as a volunteer with, and president of, the Pine County Sheriff’s Department, planning meetings and events. He uses braces to preserve strength in his wrists, but even so has trouble managing forks and spoons, getting dressed, handling tools such as hammers and wrenches, cooking and folding clothes.
Anderson knows eventually he’ll require the help of a professional caregiver and perhaps even the services of an assisted living facility, but for now caregiving duties have fallen to his daughters (Anderson was divorced from Alea’s mother in 1993 and separated from Alex’s mom in February). It’s a responsibility the two teenagers take on gladly.
’I’m learning so much’
Anderson’s daughters help out by doing the cooking, cleaning, laundry, shopping and whatever else needs doing. Alea, who recently received her learner’s permit, drives Anderson to appointments.
Alea says it’s hard helping someone she thought would never need help, but she’s happy to do it. It takes “a lot of strength,” she adds, but she’s proud that she and Alex are able to handle it.
Alex says it may sound like a cliché, but helping her dad is “rewarding.”
“It gives me a sense of security to know he’s OK and to be able to see him,” she says. “I know he gets better care with me and Alea, the people who know him best, than he would in any nursing home, or with another relative. I’m learning so much about life and myself in the process of helping my dad.”
Both say it’s difficult watching their father decline, but cite a long list of positives to the caregiving experience.
Alex notes caring for her dad has taught her “not to be selfish,” and to “value time, value life and care about others.” She says it’s taught her to be strong and to always look for the bright side of things, and that “relying on other people sometimes is OK when you can’t get through something by yourself.”
Alea explains that she’s learned “to take advantage” of what she has, because she knows she might lose it. She says she’s grateful for the people in her life, more forgiving than she used to be, and has learned to think “more about the good things than the bad.”
Both see a therapist when they need someone to talk with outside of the family, and both rely on family and friends for support as well, but they admit they find the most strength in each other.
The two also have outlets for downtime. Alea plays softball, listens to music or seeks the companionship of friends, while Alex sings in a choir, helps out with theatrical productions at school and seeks out “quiet places,” such as a quarry nearby, where she goes to think.
Both girls have plans for the future that include attending college.
The hardest thing, they both say, will be telling their dad when caregiving becomes too much to handle.
“I never want to tell him that,” Alex says. “But I know it will happen.”
Alea echoes her sister’s thoughts.
“I know it has to happen at some time, but I really don’t want it to,” she says. “It will be very hard, but I know if we tell him he will love us just the same. He just wants us to be happy, no matter where we are. If we leave or stay, his love for us will never change.”
’They know they have a choice’
Anderson recognizes the difficulties and challenges the added responsibilities of caregiving present his daughters.
“I do everything in my power,” he says, to help the girls be children and “not force them to grow up too fast.”
That includes making sure they do things together as a family, like taking walks or drives, or going to the movies or video arcade. Anderson encourages Alea and Alex to make time for themselves as well, to visit friends or host sleepovers and movie nights for their friends at home.
He also stresses open communication and makes sure the girls know they can come to him with problems, to tell him they need a break, or to tell him when the time comes that they can’t handle caregiving any longer.
“I still watch them for signs of being tired, sadness, hopelessness, wanting to be alone, school grades falling, or just being sad,” Anderson says. “It’s always on my mind that it’s not all about me — they come first.”
Anderson has made the faculty at the girls’ school aware of their situation so that teachers and counselors can help watch for any signs of trouble. Although no formal arrangements have been made, Anderson, the girls and their extended family members agree that if/when their father’s care becomes more than the girls can handle, they will move back with their mothers “with the complete understanding that they did a great job helping their dad.”
Most importantly, Anderson says, the girls know “they have a choice in this matter.” They choose to do it “because they love me and care about every minute we share together. This is a learning tool for all of us in life — it will help them grow and teach them of all that surrounds them, good and bad.”
’Caregiver’ shouldn’t replace ‘carefree’
Christopher Boys, a pediatric neuropsychologist and assistant professor of pediatrics at University of Minnesota Medical School, says it’s helpful for families affected by ALS to approach the situation as a “family change,” where everyone has to work together as a team, “change and chip in.”
Boys notes that age-appropriate tasks (typically focused more on housework than on personal care) help children and teens become involved and feel a part of what’s going on, but cautions that kids shouldn’t be pressured into doing more than they’re able to handle or allowed to “slip into acting like an adult.”
He urges parents to hire home health aides or arrange for professional care before the situation gets to the point where children become “too involved.”
“You’re looking for a balance,” agrees psychologist Barry Jacobs, director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, Pa., who wrote “The Emotional Survival Guide for Caregivers” (2006, Guilford Press).
“The challenge is to give kids a meaningful role, but not to give them one that overwhelms them or takes them away from age-appropriate activities,” he notes.
Jacobs has seen children gain a real sense of appreciation for family members by being able to contribute in some way, but notes that “striking the right balance is a difficult thing.” He warns that parents must ensure children don’t become overwhelmed by caregiving duties, as it can lead to a feeling of having “lost their childhood.”
Boys and Jacobs say warning signs that may indicate a child or teen is having a hard time handling caregiving duties include:
- irritability and a decreased tolerance for frustration in younger kids;
- a tendency to withdraw or display depression or anxiety in older children; and
- moodiness, sleep problems, nightmares and a general resistance to performing caregiving tasks.
The amount of responsibility a child can handle, says Jacobs, "is dependent on the particular child's personality."
Parents can help their children enjoy childhood by making sure they have the opportunity to indulge in their hobbies and interests, and that they have a place they can go to find support when they need it. They also should make sure there’s time for all the things that go along with being a kid, such as extracurricular sports and activities, friends and TV. Parents might consider asking adult friends and extended family members to do things with their children, such as attending sports practices or games, when they can't be there.
Although the possibility exists that children will become overwhelmed, Boys says many kids have indicated they appreciate the responsibilities they learn through caregiving, as well as the opportunity to contribute to their parents and families.
As the Anderson family has learned, when the right balance is attained, caregiving can be a positive experience for all involved.
For booklets created for teens and children coping with a parent’s ALS, visit the ALS Society of Canada at www.als.ca/als411/.
Online Support for ALS Family Caregivers
Want help but don’t know where to turn? This list provides a starting point for locating resources and online support for family caregivers.
In addition, check out MDA’s Chat calendar at www.mda.org/chat/calendar.html to learn more about the “Living with ALS” chat. The new MDA ALS Caregiver’s Guide also includes extensive resource lists; go to www.als-mda.org/publications/alscare, or call your local MDA office at (800) 572-1717.
ALS Chat Groups
ALS TDI Forum
Living with ALS
NeuroTalk Communities — ALS
Information, support, volunteer organizations and more
AARP Caregiving Online Community
Free online educational resources, plus information about fee-based services such as telephone consultations with a registered nurse specializing in ALS care.
Assisted Living Directory
The site features a list of assisted-living and long-term care facilities by state, as well as videos and a number of articles.
Create an easy, no-cost Web site to update family and friends about your situation and needs.
Similar to CarePages
Resources, tips, information, support and a directory of online elder care support groups
Links to message boards and online forums
Family Caregiving 101
Site includes a message board for family caregivers
Family Caregiver Alliance
Online caregiver discussion group and directory of programs at national, state and local levels.
Family Caregiver Support Network
A host of resources, plus a caregiver discussion board and a section for requesting respite help.
Full Circle of Care
Support for family caregivers, including respite services.
Lotsa Helping Hands
A service of the National Alliance for Caregiving, this easy-to-use site helps caregivers organize volunteer helpers.
myMuscleTeam (from MDA)
Create a private, fee page to update family and friends on the status of your family member with ALS. Includes a "care coordination calendar," where you and/or your primary caregiver can post items for which assistance is needed.
National Family Caregivers Association
E-communities, caregiver message boards and a Family Caregiver Pen Pal program
National Respite Locator Service
Find state and local respite services.
Parents with Disabilities Online
Resources and stories from parents with disabilities
Share the Care is the original model for organizing and maintaining a volunteer caregiving group.
Strength for Caring
Resources and an online caregiver community
A digital magazine, resources and caregiver discussion forum
Well Spouse Association
Support groups and online discussion forums
MDA Resource Center: We’re Here For You
Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 800-572-1717. If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.