The ALS Association

ALS Ice Bucket Challenge Progress

Perseverance and Hope Guide Family through Change

insight-nov2014-article-profile

For the first two to three hours of every early morning Lorraine Salinas is the primary caregiver for her “warrior” with ALS. The fighter and hero she refers to is her beloved husband, Peter Salinas, a retired U.S. Marine who’s lived with ALS for 22 years. Peter was diagnosed at age 28 while active in the military and only married to Lorraine a little over a year. Their lives together include eight children they blended from previous marriages and a son the Salinas couple had together. Peter’s condition began with “Bulbar Onset” that affects his swallowing, speech, and respiration. In 2004, Peter required a tracheotomy tube, and since 2010, he has been unable to breathe without a ventilator.

Lorraine’s morning ritual with Peter includes bathing him daily, tending to his “trach” tubes, managing his ventilator and other nursing-related duties or what she describes as “ICU-level” care.  After the morning routine Lorraine reviews the day’s requirements with paid nurses who come to the Salinas home each day. “Every morning I have one-on-one time with Peter, which allows me to assess his daily needs. This time also supports the intimate bond we have as a married couple,” says Lorraine. And leaving Peter in capable nurses’ hands enables her to go to work every day as a financial advisor. Unless, that is, her husband is having a particularly difficult time. On those days, Lorraine stays nearby and works from her home office instead.

“I do it all. I’m hands on,” Lorraine says. “It’s important to me to stay connected with Peter at all levels. Not only as his wife but also as his primary caregiver, case manager and advocate. Staying in tune daily lets me genuinely understand his needs, which is so important given the progressive nature of ALS,” she explains. In turn, professional caregivers allow Lorraine the valuable time she needs to tend to her large family, which includes grandchildren, career and other vast responsibilities. This involves arranging and prioritizing complex needs. “Having daily support from the outside gives me some time to myself too, to organize my thoughts and step back to appreciate the blessings that each day can bring,” she adds.

Lorraine has advice for other families living with the effects of ALS. “Find an ALS support group to meet others and learn how to live with ALS from their experience.” This is particularly important in Lorraine’s view because it’s routinely the case that “doctors and nurses have never themselves lived with ALS.” Allow friends and family to pitch in to help. “Don’t let pride stand in the way,” Lorraine urges. And early on after the diagnosis “design a daily plan of care,” she advises. “Follow it to stay organized, modifying the plan as needed. And always have a Plan B ready to go if Plan A doesn’t work. Otherwise, you’re in constant crisis mode.”

And be open about the broad range of emotions being experienced. “It’s imperative that a spouse or primary care person educate himself or herself; assess where you are in your relationship with your loved one on all levels: spiritually, emotionally, physically and financially,” she believes. “But also start addressing your own needs immediately. You will require just as much support as your loved one.”

“At the same time, don’t be afraid to challenge ALS. Life is precious. Live it while you can!” Lorraine says emphatically. This is no hollow claim. Recently she took Peter along with some family members and a nurse on board for nine days through six states in a new van outfitted with features to ease mobility for Peter. “We were blessed with so much beauty but many challenges along the way,” Lorraine offers. “But the most important thing is we could and did make it happen!”

The family’s courage and unwavering loyalty to Peter in the face of his ALS is rooted in devotion to Christianity. “I have a deep allegiance to my faith, and I’m a very proactive individual,” Lorraine says. We participate in ALS Support Group meetings as much as possible. “I go to hopefully give inspiration to others,” she says decisively.

“To this day Peter has never complained. He’s never said ‘I don’t want this. I can’t do this. Take me off the ventilator.’ He’s a warrior.” Every day Peter and Lorraine make a courageous and conscious decision to stay optimistic ─ knowing as they do that ALS is one aspect only of our life. ALS is not the sum of Peter’s identity, which includes being a husband, father, grandfather, Marine and inspiration to many. “Ultimately, we know this journey is about God’s grace,” the family believes without a doubt.

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