Books or resource for end stage
Nov 7, 2011
My wife is HIV positive and has recently decided to quit treatment due to side effects and resistances she has to her meds. Her viral load (last I knew of) is over 250,000 and her blood count is at 9. I realize that this is "AIDS." My question is: are there any books or websites that you could recommend that have information on what to expect and how to deal with end stage HIV? Her health is failing (obviously), but the decline is slow. Her day to day existence is very up and down and she and I have both chosen to emotionally ignore this as much as we can.
I feel helpless and a bit useless as I cannot convince her to start taking her meds and I am unable to make her health better. I am having trouble finding info on this :( Any advice you could give me would be wonderful. I'm just beside myself as to how to act and what to do. I want to be the best partner and caregiver I can be and I, being HIV negative, am limited in my ability to always fully understand what she is going through. Thank you in advance - I'm really out on a limb here.
Response from Dr. Fawcett
I'm sorry to hear about your wife in this difficult situation. I hope that she has really worked on her decision to stop meds with you and her doctor, as well as a counselor who could assist with that process.
If it does come to dealing with end-stage issues you can get very helpful information as well as support for both of you through hospice organizations. End of life concerns don't vary tremendously based on the specific illness, and over the years hospice has developed great insight and skill in helping families in this situation.
There are various resources available. This webpage helps families discuss complications and what they can expect at this stage. This page from TheBody is directed to counselors assisting with end-stage issues but might have some useful information for you. There is also an archived "Ask the Experts" forum at TheBody which deals with spirituality and dying. You can review some of those questions and answers here.
Finally, it is critical that you take care of yourself through this process. It can be emotionally and physically taxing for you, and caregivers are at great risk to become ill themselves. Here is a link for caregivers on the importance of self care.
I wish you and your wife great peace with this decision.
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