On the last track we discussed overcoming substance abuse. Four steps you might encourage your client to take if their HIV positive friend or family member has a substance abuse problem are avoiding nagging and preaching, encouraging honesty and positive thinking, promoting self affirmation, and supporting the process of change.
On this track... we will discuss the last weeks of life.
Do you recall Jeremy and Ruby from our track regarding AIDS Dementia Complex? Jeremy and Ruby had been married for several years. Each had a different strain of the HIV virus. Ruby’s strain was more difficult to treat and progressed rapidly. When Ruby’s prognosis became terminal, Jeremy was very upset.
Jeremy stated, "I read that not everyone with HIV/AIDS will die of their disease, but that many do. As Ruby’s disease has been progressing, I’ve thought about death from time to time. But now that it seems so close, I don’t know what to do." How would you have responded to Jeremy? I stated, "Let’s discuss some things you can do for Ruby in her last weeks of life." Jeremy implemented three simple techniques for providing care to Ruby and himself during the last weeks of her life. The three techniques that Jeremy used were providing comfort and rest, managing visitation, and the Moving Beyond Guilty Feelings Technique.
As I describe these three techniques, consider the caregiver of your HIV positive client. Could he or she benefit from utilizing these three techniques for providing care during the last weeks of life?
3 Techniques for Caregivers in the Last Weeks of Life
Technique #1 - Providing Comfort and Rest
The first technique for providing care during the last weeks of life that I discussed with Jeremy was providing comfort and rest. I found that Jeremy worked hard to ensure his wife’s comfort. Jeremy stated, "It’s nice to be able to provide for her. It gives me something to do and I can tell that it makes her feel good." Some of the strategies Jeremy used to provide Ruby with comfort and rest included preventing bedsores, providing back rubs, and letting Ruby plan each day.
At a later session, Jeremy stated, "I rented one of those electric hospital beds. And I got a pan so she can take baths without having to slip around in the tub. Ruby’s getting pretty weak, so I’m helping her drink through a straw and trying to keep her lips moist. They’re dry and cracked." Ruby also suffered from occasional fevers, for which Jeremy applied a cool cloth. Jeremy changed the bed sheets three times each week, and took care of open sores. Would you agree that some of Jeremy’s strategies helped provide Ruby with comfort and rest? What types of basic caregiving strategies could benefit your client?
Technique #2 - Managing Visitation
Second, Jeremy and I discussed managing visitation as a way to provide care during Ruby’s last weeks of life. Because social interactions with terminal HIV positive clients can be difficult for the client, visitor, and caregiver, Jeremy and I discussed some ways that he could manage visitors. What are some ways the caregiver you are treating manages visitors for their HIV positive friend or family member?
1. First, Jeremy set special visiting hours. Jeremy stated, "People come and go all day. It’s hard to turn them away, but Ruby needs time to rest and time for personal care." I responded by stating, "You might consider discussing setting special visiting hours with Ruby. She could decide on what times she would like to accept visitors and then you could inform people ahead of time.
2. "Second, tell visitors if they are staying to long. Because Ruby gets tired easily now, most people will appreciate your honesty and they will want to know if they are staying too long."
3. The last strategy regarding visitors that I discussed with Jeremy was allowing Ruby to decide whom she will visit. Jeremy stated, "Sometimes Ruby doesn’t want to see certain people. And on the bad days, she doesn’t want to see anyone at all." Think of your Ruby. Could your terminal HIV positive client benefit from having a caregiver who manages visitation?
Technique #3 - Moving Beyond Guilty Feelings
In addition to providing comfort and rest and managing visitation, Jeremy used the Moving Beyond Guilty Feelings Technique" to deal with his grief at losing Ruby. I asked Jeremy to list some of his special concerns. Jeremy stated, "Well, I’m not really sure of what to do in the event of a medical problem. People have told me that I might want to consider hospice. And then, I really don’t know what I should do just before or after Ruby dies."
Jeremy was beginning to become overwhelmed by his concerns. How would you have responded? I discussed when to call 9-1-1 and gave Jeremy some basic information on hospice, but first I addressed his concerns regarding what to do just before or after Ruby dies. I stated, "You may find yourself worrying that you are not doing enough to help Ruby feel better, but you are, so don’t feel guilty. Nothing you do or don’t do is going to change what is happening." Jeremy stated, "You know what I’m feeling really guilty about? It’s that
she’s dying and I’m still alive and well." To help Jeremy move beyond his guilt, I showed
him the "Moving Beyond Guilty Feelings Technique."
1. The first step in this technique is to identify as many guilty feelings as possible. I asked Jeremy to make a list of all the "if" statements she could think of. As you know, "if" statements are part of the vocabulary of clients like Jeremy who feel guilty. Jeremy’s "if’ statements included "If only I had used the needle that Ruby used, she might be able to live longer." "If only we had gotten off the drugs before we got married." "Maybe if I hadn’t focused on work so much she could have died feeling loved."
2. The second step was to analyze the "if" statements with Jeremy for content. Some questions I asked Jeremy were, "Is this statement realistic or unrealistic?", "Could anyone else have done what you wish you had done?", and "Do you believe the statement to be true?" Jeremy’s answers indicated that he was beginning to distrust his unrealistic guilty feelings.
3. The third step in the "Moving Beyond Guilty Feelings" technique was to prompt Jeremy to dispute any unrealistic guilt. With Jeremy, the second and third steps ran together as his answers to my questions were elaborate. You may find, as I did with Jeremy, that as the client identifies and lists guilty feelings, he or she may begin to analyze and dispute those feelings naturally.
4. The fourth step is to ask the client to write down new feelings to replace the guilty feelings. For example, Jeremy wrote ‘Ruby was happy that she did not have to die in a hospital’ and ‘Ruby knew I cared for her very much.’
Think of your Jeremy. Would addressing your client’s guilt prior to the death of an HIV positive friend or relative benefit your client? How can you help your client naturally dispute guilty feelings?
On this track... we discussed the last weeks of life. Three techniques caregivers can use for providing care to themselves and the HIV positive friend or relative during the last weeks of life are providing comfort and rest, managing visitation, and the Moving Beyond Guilty Feelings Technique."
Peer-Reviewed Journal Article References:
Carrico, A. W., & Moskowitz, J. T. (2014). Positive affect promotes engagement in care after HIV diagnosis. Health Psychology, 33(7), 686–689.
Kalichman, S. C., Banas, E., Katner, H., Hill, M., & Kalichman, M. O. (2020). Individual social capital and the HIV continuum of care in a rural setting of the southeast United States. Journal of Rural Mental Health, 44(2), 75–86.
Penrose, K., Robertson, M., Nash, D., Harriman, G., & Irvine, M. (2020). Social vulnerabilities and reported discrimination in health care among HIV-positive medical case management clients in New York City. Stigma and Health, 5(2), 179–187.
What are three techniques that caregivers can use for providing care to themselves and the HIV positive friend or relative during the last weeks of life? To select and enter your answer go to .