Empowering Caregivers Spotlight Site Archive

Caregiver of the Month
May 2001
Congratulations!
zophiel

"Caregiver" doesn't only pertain to elderly people who are terminally ill. It emcompasses an entire universe of "those in need" which this story brings to light. I must express my motives for having zophiel write for this spotlight. Zophiel is an intelligent, wise and caring individual who is dealing with her husband's drug addiction. She has gone through counseling at times and is making conscious choices in her role as wife and caregiver. There are many caregivers who are caring for someone with an addiction be it pills, alcohol, verbal or sexual abuse and much more. These addictions are illnesses that need tremendous amounts of care and support in order for healing to take place. So PLEASE read zophiel's spotlight with an open mind and heart. It is a tremendous risk for her to come forth and share this with you. But in the hopes of others who might learn, heal and grow from her sharing, she has opened her heart.

Addiction and Suicide

When I got married in 1990, I knew there was a potential for strife. My husband had a long history of drug addiction and I had made it very clear to him that if the addiction reared its ugly head, I would be right there beside him, fighting with and for him, as long as he was willing to fight for himself. I have remained true to that promise.

Five years ago, I found him curled up in the bed in a fetal position in the midst of a panic attack, pleading with me to help him. I was completely unfamiliar with panic attacks, but I did my best to help him get professional help. He became so depressed and "panicky" about not only the possibility of having a panic attack but the lack of control he felt over his own psyche, that he attempted suicide by overdosing on the very pills prescribed to help him -- Xanax. I had him hospitalized, firmly believing in "the system" and its ability to help him, although I was furious with him and felt betrayed. I had to work through my anger and realize that this act had nothing to do with how he felt about me -- it was all about how he felt about himself. I supported him through counseling and therapy. I began researching panic disorder so that I could better understand it and better help him. We muddled along.

A year later, I came home from work and saw streaks of blood on the floor. Smelled it. Dropped everything and started screaming his name. Found him in the bedroom, towels wrapped around his wrists and another towel wrapped around his throat. He had tried to kill himself by slitting both his wrists and his throat -- but was unsuccessful. He told me: "You have to let me go. I am a burden to you." It was the saddest thing I have ever heard in my life. I refused. It took me two hours to convince him to get into the car so I could take him to the hospital. While he was in the hospital, I was on the phone with the nurses every day, grilling them about why my husband was so incoherent, so drugged that he didn't even know it was ME on the phone. The experience was a nightmare, but it did save his life. I have never felt so grateful as the day I went to pick him up and bring him home. There was no anger in me, just appreciation for his life. Again, he went into intensive therapy. Eventually, he confessed to me that he realized suicide was not the answer and how much it deeply hurt everyone around him. Again, we began to rebuild our lives.

Two years ago, my husband was diagnosed with active Hepatitis C. This disease basically brought his life to a grinding halt. We discovered that because of his depression and anxiety disorder, he was not eligible for the current treatments, which can deepen depression. I watched him lose his sense of identity as a productive citizen and as a contributor to the household while falling deeper into despair. We went from two equal incomes to one overnight. I researched how to apply for social security disability benefits. We applied and waited. And waited. And waited. What little savings we had dwindled away.

He began using drugs again, although it took me a little while to figure that out. When I did, I realized that it didn't matter to him that I knew about it. I could not control his decisions. My yelling at him about it really wasn't going to change things, so I told him that only he could make the decision not to further destroy himself, but that I would be right there beside him if he wished to choose sobriety. He signed back on to a special treatment clinic, one of many over the years, and I accepted, in my own mind, that he would probably be on the medications for the rest of his life. I asked him to look at the dose as a daily medication -- as a positive thing in his life rather than a negative, but the stigma of being a drug addict has always undermined his self-worth. He was determined to detoxify from his dose, but every time he got to a low point, the drugs came back into the picture.

In the meantime, I got in touch with his entire family, from whom he had been estranged for years. I wrote them a very candid letter explaining the entire situation, and asked for their help. They came through with flying colors! They got together and pledged to send the amount of money it took to make up the difference between my income and our bills. And he realized that he was still very much loved.

In March of this year, he began getting paranoid. This escalated to the point where he believed the computer was bugged, the apartment was wired, that someone was coming in while we slept and was moving things around that only he would notice so that he would appear crazy. He thought it was someone trying to get us to split up. I gave this a lot of thought. I thought that maybe it had to do with his loss of self-worth, or that in order to create a sense of importance for himself, his oh-so-intelligent brain had created this "intruder." Regardless of how unreal the intruder was, he believed it was very real, and refused to get help. The only thing he would discuss with his psychiatrist was his anxiety because he was by now heavily addicted to the Xanax. I tried reason. And I learned that you couldn't reason with someone who is paranoid psychotic. I didn't know what to do -- and I confess that I did nothing other than try to offer him loving support.

Hindsight is 20/20 they say and I realize now I should have sought professional help. My husband checked himself into a nearby hotel and slit his wrists. I knew something was terribly wrong when I came home from work and found the car gone -- he had always been home. I called some of his friends, looking for him. I got a call that turned out to be a hang-up and dialed *69 to see who it was. When I called the number that was fed back, it was a hotel. I asked for his room and got him. He told me that he couldn't stand it in the apartment anymore, the intruder was ruining his life and he couldn't stay here.

I calmed him down and asked if he would please come home. He told me that he wanted to but he couldn't stand up. He told me he had slit his wrists very badly. I told him to sit tight and I would help him. I hung up and called the front desk of the hotel, asked them to check on his room -- and to call an ambulance. Later, a police officer came to take me to my car, and I met him at the hospital. He was white as a sheet and shaking with cold. I had packed a suitcase for him and immediately pulled some socks on his bare feet then began cleaning all the blood from his face and his hands.

I didn't know what else to do. I felt very calm, I had been through this twice already, and I was going to see him through this again. The hospital did drug testing and the results came back clean. Now that was unsettling. It would have been so much easier had this psychosis been attributed to drug use. Now I was facing another completely new and scary unknown. I worked with the social worker at the hospital to have him admitted to a different facility than his first two hospitalizations. I wanted to make absolutely sure that he got the best care possible!!! He was transported overnight and when I went to the new hospital the next day, I felt extremely relieved. It was top-notch. The ward seemed comfortable and caring. The doctor was a hotshot -- really terrific, very astute. I knew he was finally going to get good care. I took a medical leave of absence from work and visited him every day, determined to be a part of his recovery. While he was in the hospital, the doctor detoxified him from the prescribed medications completely and reduced his Xanax dose. We were so happy about that, as was his family.

Both of his sisters and his brother came to visit during his hospitalization. I became a caretaker for them as well during their visits. I felt like a rock!!

Because of insurance quibbling over the length of his hospital stay, he was released to me twice -- too early and still paranoid. I checked him back into the hospital twice. The last time, he finally gave himself over to the program, stopped calling me every day begging me to get him out, and began trusting his doctor. I had such high hopes! When he did finally come home, I felt like I was seeing a man I hadn't seen in years. He was clean, he was focused, he was -- well, he was himself. But something went very wrong. He started ignoring me and spending time with someone he'd met while in the hospital. My gut told me this person was a bad influence, but I wanted to support him, so I made a mental effort not to prejudge her, but to invite her into our home and into my life as well. In the meantime, I fell apart. Me, who had been so strong and through so much- suddenly could not function. I was diagnosed with post-traumatic stress disorder, depression with agitation and sleep depravation. I stopped eating. I was self-mutilating. I was put on several different medications, could not return to work, and became; well, lost. I lost myself. I forgot who I was and why I was important.

In January, I realized I'd made a terrible mistake trusting my husband and his new friend. I received a call from a policeman one afternoon. My husband had crashed into a telephone pole and was incoherent. The officer asked if he was on medication and I honestly told him, "Yes." He asked if I would like to come and get him and take him home. I again honestly told him, "No. I want you to take him to a hospital; he might be overdosing on drugs." Sure enough, he called me from the hospital and told me they were taking him to jail for possession of drugs. This new friend and my husband were getting high together -- not going to AA meetings as they told me. I was livid. I felt completely betrayed. I refused to bail him out of jail for four long days, during which there was a lot of communication with his family (and mine, who urged me to divorce him immediately). On the fourth day, he called to tell me he'd been raped. I also learned that he was not receiving medical care in prison and had not had his anti-psychotic drugs or anti-anxiety drugs. I felt we were losing preciously gained ground. His brother wired the money and I bailed him out of jail with the stipulation that he go back on the treatment program immediately, that he begin doing volunteer work to help his self-esteem, that he work actively on recovery and that he stop seeing his friend. Well, so many good intentions have been swept away in the path of addiction.

Help I have received? Unfortunately very little. Substance abusers are pariahs; my experience is that everyone wants to pass the buck. Get 'em in, get 'em out. And once they're out? The lack of structured support leads so often right back to failure... While I was involved in my husband's treatment at the hospital, they were very interested in my opinions and observations, but offered ME no support other than to tell me to take care of myself. To put my own care before my husbands so I could better take care of him. I did end up seeing the same therapist IN the hospital as my husband but all he did was throw a bunch of pills at me, tell me that I was a caretaker from early on in my childhood and that I needed to put my own oxygen mask on before trying to save anyone else on the crashing plane. He called me "a basket case trying to manage a bigger basket case." And I always left his sessions feeling WORSE about myself!! My own family has distanced itself from me because of the marriage.

I returned to work at the end of January. I also came off of all the psychiatric drugs I'd been put on. I realized that the answer, for myself, lay not in pills but in myself. I needed to take control over my own life and choices, and stop allowing his life and choices to dictate the way I felt. Please understand this did not happen overnight, but over time. In March, I told him that if he continued to make the wrong choices (he was still using drugs) I could not stay by his side. But I also made it clear that if he wanted to work toward recovery and step out of the vicious cycle he was in, that I would be right there beside him. To date, I have not seen him do this and now I find myself faced with a very hard and painful decision: do I stay or do I go? Is there anything I haven't done to help this person? Am I harming myself more than helping him? People always shake their heads at me in amazement and tell me I have a "big heart." I don't really know what they mean, for in my opinion when you love someone you will walk through fire to help them. You always find strength beyond what you thought you were capable of enduring. I have never once questioned whether I was doing "right" all those times I stood by his side. But now, I realize that he is choosing suicide still --that addiction is nothing but a slow, slow death. Getting high is a numbing of the senses, a denial of choice, a denial of feeling - whether good or bad. And I don't see myself as a true caregiver any longer, only someone imposing my own morality on his life, trying to force worth and meaning onto him when he cannot and will not accept it. I can't live his life for him. I can only live mine. And if he is choosing to deny himself the reality of life, well, I feel I have to leave this relationship and move on with my living.

What I did find, in terms of support, was compassion on your website, people going through similar self-questioning/doubts, a sense that I'm not alone in this, and a place where I could vent during my darkest days and receive kind words in return. And the focus on the spiritual side of all of this, which is extremely meaningful to me, was very evident on the site and helped to give me perspective. The journal exercises are great springboards to self-searching

What I forgot to mention is what I do for a living -- I am also a caregiver at work! I am the head of academic advising at a local art college of about 400 students - their surrogate mom, if you will, who helps them maneuver through the red tape of college life and make decisions about their futures. I arbitrate conflicts between students and faculty and simply provide an open ear when they have a beef or need a shoulder to cry on. I'm also the advocate for students with learning disabilities. And as Assistant Dean of the college, I help develop new policies, procedures and support programs in response to student needs. I LOVE MY JOB!!! As the school psychologist once said to me, "Remi, your bus doesn't HAVE a stop!"

My experience with my husband has helped me in my counseling of students. Something about me or the way I talk to them causes them to open up to me in ways I know they don't open up to others. I speak with them very candidly about my own experiences with depression -- and their eyes just light up when they realize that even people like their assistant dean can fall apart!!! And then the door opens for me to convince them to get help from our counseling office. I can't tell you how many I have walked there personally and stayed as their advocate when they were too uncomfortable to seek help on their own. Now that is a blessing.

Do I deserve the spotlight? I don't think so. I have been loyal and loving and tenacious, but nothing special. Just a human being that believed in the innate right to life of another... and the bright potential of the soul within him... but maybe my experience can help someone else struggling with these issues.

Thank you for the opportunity to share my struggle. And thank you, Gail. You are wonderful.

zophiel

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