When you have questions or need help, when you want to share tips and tricks or opinions, or when you just need to hear from someone who’s “been there,” one of the first places you can turn is an MDA ALS support group.
Although these groups vary widely in the way they’re organized and scheduled, they all have one thing in common: They provide essential support for both people with ALS and their caregivers that makes a significant difference in learning to live with ALS.
'I was nervous’
Larry and Linda Martin of Spring, Texas, attend an MDA ALS support group at Memorial City Hospital in Houston, where they meet for two hours the second Saturday of every month (July excluded).
Larry, 68, received an ALS diagnosis in November 2007. He’s lost the use of his left hand, experiences weakness in his legs, and has balance and breathing difficulties.
|Larry Martin, who has ALS, and his wife and caregiver, Linda, both get something out of MDA ALS support groups.
The couple married in 1962 and, although she receives help from their son, Scott, and a group of neighborhood friends, Linda, 67, is Larry’s sole caregiver.
“So far we have been able to handle everything without professional help,” Linda says, noting that, as Larry’s caregiver, she assists him with almost everything, including getting out of bed, showering, shaving, brushing his teeth, dressing, eating, toileting, and getting in and out of chairs and vehicles. She also assists him on the computer, does all the driving, helps him get ready for bed, adjusts his pillow and covers, and works with him to do range-of-motion exercises to help his shoulders.
“The physical part for me hasn’t been bad yet, but as time progresses I can see it being a problem,” Linda admits. “Emotionally, I think the name of the game when dealing with ALS is being able to adapt. We don’t make a big deal out of another loss — we just figure out a way to get around it as best we can.”
Linda notes that Larry is “a very easy patient to deal with” and that he’s “very thoughtful” of her, but that “the hardest part for me is knowing the frustration he feels at not being able to care for himself and having to have help with everything.”
The two have been attending support group meetings for approximately 18 months.
“I was nervous about going,” Linda says, “because I was afraid it would be a very depressing experience. I found out quickly that was not the case.”
Come out with a smile
At the MDA support group the Martins attend, individuals with ALS and caregivers stay together for the first hour to listen to a speaker or ALS-related presentation. MDA Health Care Service Coordinator Clara Utley “always asks if there are certain topics we would like to see addressed or speakers we would like to hear, and she gets everything lined up,” says Linda.
Meeting topics have included home renovations, Social Security benefits, physical and occupational therapists, clinical trials, research, tax advice, home health care and hospice.
During the second hour, the group splits up, with caregivers meeting in a separate room with Rebecca Axline, a social worker from Methodist Hospital. Linda says this portion of the meeting “is great for me. I get a lot of useful information from other caregivers. We’re free to discuss anything we have on our minds.”
Subjects include creative ways of taking care of loved ones, gadgets that work or don’t work, or strategies that make the caregiving process easier or more efficient.
One example, Linda notes, is “someone suggested using a wireless doorbell as a call button. It was simple, inexpensive and easy to use, and solved the problem. When I hear the doorbell, which rings differently from our regular doorbell, I know Larry needs me for something.”
Other topics include trips others took, with descriptions of things that were particularly easy or difficult, as well as any surprises they encountered and tips to get around easier.
“Sometimes we talk about funny stuff that happened since we met last time,” Linda says. “If someone has been recently diagnosed we can give them a place to ask questions and let them know others care.”
Other times, Linda adds, “you might just want to know if other caregivers have the same frustrations or feelings you do.”
Linda says that even when she doesn’t actively participate in the discussions, she learns a lot just by listening and that she always “gets something” out of each meeting.
And after those two hours, she says, “I usually come out with a smile on my face.”
Educational and supportive
Clinical social worker Rebecca Axline characterizes the first portion of the meeting as “educational” and the second as “supportive.”
“The number of attendees varies greatly depending on the topic and the current health status of the local MDA ALS patients,” Axline says, noting they’ve had “as few as six and as many as 30, with an average attendance of 12 to 14.”
Although typically half of those who attend are people with ALS, and half are their caregivers/loved ones, some individuals bring large numbers of family members along.
The general aim is to provide education in a comfortable, informational setting first, and then to provide an opportunity for emotional issues, questions and concerns to be shared within a safe, private and confidential setting with trained social work facilitators, Axline says. “We feel this allows for individuals to find support, ask questions, and express themselves without worrying about their loved ones’ feelings.”
The benefits to be gained by caregivers who attend these meetings are many, and include:
- exploration of thoughts, feelings and emotions in a supportive environment;
- networking with others;
- mutual support among group members; and
- the awareness that “I’m not alone.”
A sense of connection
One of the most important things ALS support groups provide caregivers may be the understanding that there’s help out there and that caring for someone who has ALS isn’t something you have to do alone.
“When we first suspected Larry had ALS,” Linda Martin says, “we knew nothing about the disease except that a baseball player had died from it and they made a movie about it. We had no idea what questions to ask or, if we thought of a question, who to ask. MDA ALS support groups helped change all that. Just being with families going through the same thing you are helps a lot.”
Linda recommends MDA ALS support group meetings to other ALS caregivers she meets.
“I tell them to just give it a try once or twice. There is a lot of useful information there. If it’s not your thing, you don’t have to come back, but you’ll probably benefit, and it would be a shame not to use every resource available to you.
“Larry and I both look forward to the meetings. It has been great for us — we always come out feeling like we just got our batteries recharged.”
For information about MDA ALS support groups in your area, call your local MDA office at (800) 572-1717.
In addition to ALS support groups, MDA offers a number of other resources for caregivers.
MDA publications. In addition to this magazine, caregivers can find lots of useful information in Facts About ALS, Breathe Easy: Respiratory Care in Neuromuscular Disorders, Meals for Easy Swallowing, Preparing for Emergencies, and in particular, Everyday Life with ALS and the MDA ALS Caregiver’s Guide. All these publications and more are available for free download at MDA Publications. Hard copies are available by contacting your local MDA office (800-572-1717) or by contacting the MDA Publications Department at (520) 529-2000.
MDA DVD. “With Hope and Courage: Your Guide to Living with ALS,” for people with new ALS diagnoses and their families.
The MDA Web site provides information about the disease, support groups, access to MDA’s ALS chats, and news on research, clinical trials, advocacy and services.
myMDA, MDA’s online community, is like having a support group on your desktop. There you can create your own profile page, connect with other caregivers, share tips, and give and receive support through message boards, blogs and in community forums. (Registration is free; must be 18 to join.)
Phone Friends Support Network enables you to communicate one-on-one with others in your area experiencing similar challenges.
Caregiver seminars. Contact your local MDA office to find out when educational seminars for caregivers are scheduled.
Your local MDA office and clinic teams are always ready to answer questions, connect you with community resources and lend a sympathetic ear.