The 100 Individuals interview with Paulette continues. In this wrap-up, she talks about how David is doing now and gives some advice and words of comfort to other family members whose loved ones have SZ.
CB: What advice can you give a parent whose son or daughter lacks the insight that they have an illness?
P: That's the hardest question and there's a tough answer: you have to do what you have to do to get your child help, even if that's calling 911 and getting them into the hospital. I did that when my son went off his medicine and I could not reason with him. So I don't give this advice flippantly and I don't give this advice because I read it out of a book. I give it because I lived it. His therapist and doctor told me, ‘Don't try to reason with him. Call 911 and get him into the hospital." They were right. After a certain point when the person in your life is not treated and is not thinking rationally, the sad truth is you can't sit down and have a conversation. So you have to know when he or she is at that point where there's no talking anymore. You have to do what is the hardest thing for any family: call 911 and get them into the hospital.
The good thing about the 911 call is that if you have friends in NAMI, at the hospital, the doctor, or even in the police, set it up ahead of time. That's what helped me: the NAMI folk pushed me to do what I couldn't do. I had David's psychiatrist call ahead and he said, "Expect that David will be coming and do not release him, he needs to stay."
Unfortunately or fortunately, David was working at the time and his boss was concerned. He was making a lot of mistakes and getting lost on the job and when his boss called me I said, "I need to get my son in the hospital and I just can't do it."
It was his boss who helped me. He met me at David's job and they actually made the 911 call. I went in the ambulance with David and stayed with him in the hospital. That's the toughest thing I've had to do in my life. I don't think I could've done it without his boss, who liked him and knew him and also saw a change in him. Because like I said David was stable for awhile and got this part-time job delivering pizza and then he started unraveling again and playing with the medicine and going off the meds so he unfortunately had to be brought back to the hospital.
That's when his boss helped me because it was just me and my daughter in the house and I couldn't bring myself to make that call. I thank his boss to this day. I write him once a year at Christmas and I thank him and tell him how great David is doing and that he opened a door for us that we couldn't do for ourselves. He gave David his life back and I tell him all the good things David is doing because of him.
CB: David has been out of the hospital at least seven years.
P: Oh, yes, seven or eight years. His last hospitalization was in 2001. He started his new job where he's still working, and he went back to college taking one or two courses at a time. He's active in the peer support group and they just asked him to go for training. So I feel that's been a big help-he's growing and learning about his illness so that he can live with it. Someone once told me at the beginning, "When you own your illness, you're on the road to recovery." That you can sit and talk about it, and know your limits and your strengths, and what you can do and what stresses you out is really when you are getting better. I've felt that for David for awhile, not just recently. He knows what to do so much better when he's stressed out and feels he can't cope. He'll run-physical exercise has helped him tremendously-he'll take a bike ride, he works out at the gym, and he'll say it helps him relieve his stress. All of that is helping him greatly along with taking only one or two courses a semester. David obtained his associates degree and now he is hoping and aiming for that four-year degree.
CB: Wow. How wonderful it turned out.
P: That's quite a story, but it's a beautiful story with a beautiful, beautiful ending. I pray a lot-I have a lot of faith and even now when I'm confused or don't know how to advise David to talk to him, I have to stop, take a few deep breathes, say a prayer and back away for awhile and then approach him. Because we're constantly advising and directing-I would say even now that my son is in a wonderful place of recovery. He still finds certain things difficult and he still struggles in certain areas in his life.
I find if I get upset or emotional I'm no good for him. As Moms and Dads and siblings we do have to be strong and patient and take care of ourselves, so we can be good to our children, because it's easy to get caught up in the emotion of all this and then none of us are going to get any better.
CB: What advice can you give family members about loved ones who find no symptom relief or who refuse treatment?
P: I hoped what I shared with you was David refusing help and he wasn't aware he was unraveling again so we called 911. If you mean that they've been in and out of hospitals and just can't respond to medication that's another tough issue. Our story is thank God he responded to the medication and it worked effectively for him. Certainly those heartache stories exist where families call 911 and they do get their loved one in the hospital but the person comes out or stops taking the medication, or one medication after another just doesn't work. My advice to those parents-and I have some friends in that situation-is to keep trying. You have to realize if one drug doesn't work a lot of it is trial-and-error. Hang in there, don't give up. Find the doctor that will work best with you. If your loved one is not responding to a medication, there is going to be one that will work.
Accept wherever your loved one is at by loving them and being there for them. Saying things like, "I'm here for you, I want to help you get your life back together. Let's learn together, let's try to find the answers together" is important.
Again, to keep up their strength and patience so that even if their loved one is in and out of hospitals or on and off meds, they can find a way to be strong for themselves so they don't fall apart. It could be a job that brings them comfort or relief. For some it's prayer-church-or being in a support group. Seeing their own therapist. I still see a therapist so that when I'm confused or dealing with certain situations along the way I can cope. My advice would be for parents whose children don't seem to be getting better to stick it out, get help for yourself and accept that maybe this is the best that can be for your child. Never give up on finding the right medication or therapy or group because it doesn't happen overnight. Some of the things I shared about David didn't happen right away-weeks and months went by before finding the right therapist and the right group.
The only thing I can say is that I thank God the medication did seem to work and we didn't have to experiment with too many meds. Like I said I'm friendly with many women who have gone through the scenario you painted, and they're faith people, they're strong people. We take one day at a time. We hope that today our loved one is going to get through the day as comfortably as possible. We're always doing our homework to find another medication or doctor that would be better. Those are hard stories and support for each other is big. We also started a prayer group, it meets once a month. So I hear all these stories from my Family-to-Family class, and from the prayer group.
It's taking one day at a time, not giving up and doing what I call "our homework" behind the scenes so that we're fueling ourselves with information that we can give our loved ones. Just never giving up. There's a lot of research and a lot happening out there.
CB: Could you give us some parting words of encouragement and hope?
P: Be with people who understand you, whether that's a support group or a prayer group. Be with people who are a little ahead of you. Don't be with people who are negative or are going to pull you down. I was inspired by people who were ahead of me on this journey. I looked for that, grabbed for the positive. I was inspired by some NAMI couples and families who had done things for their loved ones that I said, "Oh God, I could never do that, I don't have the strength to do that." So I would say focus on the positive, be with people who are a little ahead of you and can give you inspiration and hope, and positive thinking and information.
Published On: May 25, 2009