Report #2
April 10, 1997
Pacificare Volunteer Training, part 2
There are many "Commandments" which people with HIV should live by in order to live long and well. They include eating nutritious meals to build up the T cell count, taking nutritional supplements to minimize side effects, exercising to build more lean tissue, doing prophylaxis to protect them from infections, taking the best possible combination of antivirals to protect their body from side effects, and programming the mind toward healing. Although buddies are not required to monitor the daily regimen and habits of their client, they should be aware of these special needs that a client has to fight the battle against HIV.
A case manager at Kalihi-Palama who works with the homeless downtown, spoke to us about the psychological effects of chemical dependency. People who are chemically dependent often regress to primitive defenses such as denial, projection, and splitting as opposed to higher level defenses like intellectualization and rationalization. They experience low self-esteem, inability to postpone gratification, sexual dysfunction, poor judgment, grandiosity, problematic relationships and inability to anticipate consequences of their behavior. The case manager is involved with the state in reducing the harm associated with drug use without necessarily requiring users to reduce their consumption. These measures are called Harm Reduction. The needle exchange, which encourages drug users to exchange a dirty needle with a clean one, is one of the measures of harm reduction that is funded by the state. The reality of chemical dependency is that the decision to use drugs is made by the user. Whether or not the state or government approves of this decision, they have to accept the fact that the user is going to continue his/her drug use. Only the drug user is responsible for his/her behavior. According to the case manager, harm reduction has been successful in bringing addicts into treatment programs only when the user was treated with dignity rather than as a criminal.
Realizing the reality that drug users are sharing contaminated needles without any sense of concern or fear of H[V/ALDS is almost devastating. Their whole life is revolved around that quick high and nothing else matters. Both women and men are prostituting to support their habits and we can be sure that they're not practicing safe sex. Reality is frightening when we suddenly open our eyes to it.
Lastly, the group received some tips on how to be the best buddy we can to our clients. Some of the more important suggestions that I walked away with include being a REAL person, listening with honesty and total concentration, empowering the client instead of feeling that I'm responsible for rescuing him/her, being consistent, and setting limits fiImly.
During a communication exercise, many of us learned that good listening skills take discipline and hard work. The biggest problem with listening is that we fail to focus on the other person's point of view. It's human to want to speak our minds so, rather than listening carefully, we're busy formulating what we are going to say, which compels us to constantly interrupt the speaker. Personally, I normally ask the speaker questions along the way to show that I'm paying close attention. The exercise also reminded us to use eye contact and minimal encouragers such as head nods, "uh huhs", and silence while a person is speaking.
When I arrived at Pacificare on Tuesday night the following week a panel of three clients were talking about their experiences with a buddy. One of the male clients revealed a bad experience that he had with an ex-buddy. This particular buddy had a rather forceful and aggressive personality which caused him to be controlling. Basically, he wanted to take over the life of the client and make changes for him. Fortunately, the client ended that relationship quickly. He urged us to remember that a buddy is only there for support, not as a parent A client needs to feel that he/she has control of his/her life. The only female client on the panel told us that her ex-buddy actually left her with an emotional scar. She was excited to meet her buddy for the first time after talking to him on the phone. But weeks had passed by and neither she nor Pacificare ever received a phone call from him. It was obviously painful for her to tell this story as she sat there and cried. Why would anyone toy with the emotions of someone already in a fragile condition? You almost have to be sick to do something so cruel. I firmly believe that unless a person can wholeheartedly commit to the buddy/client relationship, then he/she is NOT ready and should not get involved.
Listening to the panel's good experiences with a buddy made me realize that these people really need strong support systems. Buddies may not be making miracles by assisting them with chores and transportation, but to the clients, a buddy can make a huge difference. Sometimes, it's comforting to just have someone who cares to be there besides you to listen, and not judge or advise.
The final speaker of the evening was a graduate student at the University of Hawaii who came to speak about women and HIV. Since the research on HIV/AIDS has been primarily focused on the male population, it is extremely important that women's issues be addressed. The issues discussed were on relationships with their partner, children, other family members, society, health care system, and themselves. I wasn't even aware that society blamed women for being "vessels and vehicles for HIV." The speaker told us a story about a woman who tested positive for HIV. When her husband found out, he beat her up so badly that she was taken to the hospital. He accused her of adultery even though she had been faithful to him. There are these power and control issues along with domestic violence that have to be dealt with in a relationship. Women with HIV also have to make difficult decisions and choices on pregnancy and children, if they are infected. Changes in body image have a huge impact on women with or without HIV. For example, loss of hair can have a profound effect on a woman's selfesteem which then can create intimacy problem.
Women have to be recognized as a legitimate population, particularly if they're living with HIV. As a group of people with different needs, women certainly have their own issues to deal with. Instead of blaming and isolating women, society needs to validate women's issues and support their battle with HIV.
I wasn't particularly looking forward to the next evening session since the topic was going to be on death and dying. But ironically, halfway through the discussion on the active phase of death, I was totally fascinated with some of the information. The speaker was a nurse and Director of Hospice Hawaii who works with terminally ill patients. I felt that she had a rather strange sense of humor because at times, she would laugh inappropriately when describing her experiences with dying patients. However, due to the nature of her job, I realized that she needed to laugh.
Since I've been fortunate to have never experienced a death or have even attended a wake or funeral, I basically knew nothing about death or dying. A person who is dying actually enters an active phase of death. It begins with a loss of appetite and inability to swallow and digest. Next, the circulation slows down, particularly in the extremities and changes occur in color, temperature and pulse. Then a change in fluid balance causes mouth secretions, edema and urine output. In addition, the death rattle develops, which is a loud snoring-like sound caused by swollen vocal cords. According to the nurse, IV's are not a good idea at this point because the patient needs to be dehydrated before death in order to prevent swelling of fluid. She also added that it is more comfortable and less painful to be dehydrated before death. The patients then begin to experience "far away' looks and traveling images of dead relatives. She told us an interesting story of a young boy she knew that passed away. This boy often talked to an imaginary friend whom he referred to as his guardian angel. Well, one day the nurse noticed that he wasn't talking to his imaginary friend, so she asked him about it. He told her that the angel went up to He "light" to prepare his coming. Later that night, the boy died. It's absolutely amazing to learn that sonle people just KNOW that they're going to die. One of the people in our group shared an experience about her mother who suddenly had an urgent need to look at her family photo albums with her family. Strangely, her mother passed away later that night. CHICKENSKIN!
The next part of the active phase involves the senses, where they generally weaken. Surprisingly, hearing is usually the last to go. The breathing rate increases while the Wood pressure drops right before death. The patient experiences aponea (without breath), Cheyne-Stokes (cycle of no breathing, deep then shallow breathing) which is a strong indication that he/she will die the same day, and agonal respiration. Then at the time of death, there is no breathing, no pulse, eyes and mouth open, pupils dilate, and the bladder and bowels let go. Usually, there is very little urine and stools that come out, if any, since the patient has not been eating. Most patients also smell bad before they die particularly because fluids ooze out of their skin.
Considering the unpleasantness of the job, I seriously commend nurses who dedicate their lives to tending after terminally ill patients and having to experience death everyday. I know that a hospice may not be a favorable choice for potential nurses like myself, but it's certainly gratifying to know that there are exceptionally zealous people who provide these services in our communities.
I couldn't believe the last day had arrived so quickly. At the end of the day, the entire group of volunteers successfully graduated from the buddy training program. I failed to mention earlier that I had many memorable conversations with some of the volunteers during our cigarette breaks throughout the program. There was a sense of trust that developed early on in the group which allowed people to reveal personal and most often times, painful stories about their loved ones and even themselves. Despite the diversity and personality differences, the group bonded, mainly due to one common goal to help others. Basically, each of us respected each other for coming to an organization like Pacificare, regardless of the reason. This program reminded me of the Christian retreats that I attended in the past where you walk in not knowing anyone but come out with new fiiendships.
The last session took place in a nursing lab at the University of Hawaii. Nurse Nancy and a guest nurse provided sldlls Paining on how to tend after a bedndden client. The group practiced the sldlls on each other, which actually made the situation more real for us. We learned how to give a back rub/massage, bathe, groom, handle waste elimination, assist the client out of bed and into a wheelchair and finally, how to change bedding. I was particularly fad to have had this Gaining mainly because it familiarized me with basic nursing skills. It really takes tenderness as well as strength to lift a patient out of bed and put him/her into a wheelchair. During the exercise, I actually needed assistance to lift a 135-pound woman which either meant that she was too heavy or I needed to work out! I was perhaps, most fearfill of handling waste elimination, especially for a client with HIV. Although I'd be weanng gloves, the thought of smelling and touching someone else's fecal matter made me very uneasy.
Following the skills training, a panel of buddies then spoke about their experiences with their clients over the years. Although one of the buddies had a rocky start, it seemed that all three buddies had relatively good relationships with their clients. They gave us a positive perspective on a buddy/client relationship. As long as we set our limits, especially with time, and our clients know exactly where we stand, then there shouldn't be any problems. Not all the clients will be on their best behavior throughout the relationship, so we, as buddies, have to accept that reality. According to some of the buddies on the panel, a client may become angry and verbally abusive at times for whatever reason. At that point, the buddy should explain to the client that he/she does not have to stick around for the abuse and just leave. The best thing for a buddy to do with an antagonistic and angry client is to not take any of it personally. I learned that most of the time, the angry client does eventually become remorseful and apologetic. As buddies, we have to expect the clients to behave in a rollercoaster fashion, considering the painful reality that they are forced to live with everyday. By the same token, as professionals, buddies have their rights to withdraw from negative situations and alert Pacificare. Both the buddy and client must remind themselves that they're in a PROFESSIONAL relationship and nothing more. For example, if a client phones his buddy for a small loan, he would be acting inappropriately.
I haven't quite made the decision to become a buddy right after the program. Besides the time constraints, I'm not completely sure if I'm emotionally ready to commit to a long-term relationship with a client. I'm a person who needs to feel wholeheartedly secure and certain with anything that I decide to venture on. Instead, I told the Volunteer Coordinator that at this time, I'd be more willing to assist the staff with the computer in their office. Until I resolve my fears and insecurities about the HIV/AIDS disease, I thought it would be best for me not to get involved with a client. I know eventually that my feelings will change and I'll look forward to becoming a buddy.
Overall, this program has made me realize that there are genuinely GOOD people in this world. The staff at Pacificare and the volunteers who choose to become buddies and have been for years deserve a tremendous amount of kudos. Their motivation is nothing more than the unselfish desire to make a small difference in someone else's life. Of course, they gain a sense of personal gratification, but if you're making someone else feel good at the same time, then the intention is good. I'm totally grateful for the opportunity to have been part of this wonderful mission. I gained valuable information on HIV, particularly women with HIV, death, communication among others within these two weeks. The experience for many of us was the kind which people really never forget. By listening to others share their stories, I was reminded that there are real people out there with real human issues. Most of us get weighed down by petty and trivial problems that we forget to look around and notice the REAL problems that people endure day to day. We only see the reality that we know of and fail to incorporate it with the bigger reality around us. If the group at Pacificare, with its diversity and common goal, could represent the microcosm of how all people should be, then the world would be an incredible place.