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What should I think?
#195692 - 06/12/06 11:32 PM
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I will try not to make this too long...my son called yesterday and told me his wife was not doing well. My HIV negative son and three HIV negative grandchildren may soon lose their HIV positive wife and mother.
My son and daughter-in-law seem not to be taking their situation as seriously as I have been. She does not take her meds and he seems to have just accepted from the beginning that she would die and they are not fighting just waiting for the end.
When I asked he could give me no specifics...did not know CD4 count or viral load, but said she was down to 75 lbs and was not eating and that her CD4 count had been in single digits (?)
She does not take her meds because they make her sick. With meds, he has said they give her one year, without six months. Three young children 12 through five (she is only 26).
I don't think he has really considered what this will mean and her self esteem is so low she has just decided that this is the hand that fate dealt her.
I don't know what to think or even feel.
Can anyone give advice???
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IzPoZ
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Guardian
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Reged: 01/24/05
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Posts: 398
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Loc: FTL, Florida
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All you can do is support. You can suggest that she take the meds, but having lived through the same thing with my husband, I understand that the meds make her feel like crap. It's hard to be so underweight and take those meds, which are so strong, and still have the will to survive.
I don't really know what to say, other than support her, and him. He will need you once all is said and done. It's difficult for any family to deal with, seeing a parent as ill as she is.
My thoughts are with you and your son's family, in this difficult time. I hope for her speedy recovery.
--------------------
The reason angels can fly is that they take themselves so lightly. ~ Chesterton G. K.
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franfrog
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Legend
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Reged: 01/05/06
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Loc: NJ
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Defenitly support. I can not understand why they would only give her a year with the meds. Has she spoken to her doctor about trying a different med that does not make her sick. She is young and needs to think about her children. I am 30 and when i was diagnosed I had a cd4 of 52. I was down to 107 lbs from 135. I am now at a cd4 of 459 and well my weight we will not get into.
As much as I want to say support is all you can do, I would maybe try to intervien in a manner where they will not get upset. She needs to think about her children and that is the main reason I am fighting. I would hate for her to beleive that she only has a year. If she has access to the meds then I beleive she has a better chancwe then that.
Good luck and I have you and her in my thoughts and prayers. I hope she can get the help she needs and her children will have a mother.
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AIDS2HIV
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Legend
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Reged: 12/19/05
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you cant make someone do something they honestly dont want to do, as sad as it may be, ya cant. However if she was taken to a good specialist, and was honest about her meds and how they make her feel, the doc would most likely change the meds, but thats the easy part. The hard part is rejuvenating her will to live, and if she is already in the mindset you describe, with her kids in the same house,etc GOOD LUCK*
Acceptance is the key to lifes situations, its not what life deals us,that is important, its what we do with what life deals us. Sadly this lady didnt get to where she is mentally/emotionally on her own. Sure positive diagnosis brings a whole array of issues with depression,etc. However, being in a supportive environment curtails those issues for the most part. If everyone around her is ok with her death, she will provide it. Its called "the will to live" and if she has none, dont see any, or isnt fed any, she wont produce it herself. There have been many others in her shoes before her, i cant speak for them, but i too have been in those shoes, admitting her to a hospital for the care she needs, is an act of love for that person, one that she will see. helping her feed her low self esteem, helping her feed her will NOT to live.....only brings it about quicker.
Keep in mind, if she does pass on, she no longer has to live with her death,nor the quality of life that lead up to it. Those she loved, will, for the rest of thier lives. Not all hiv meds make you feel like crap, it takes some trying to find the right regimon of meds that work for each individual.
I personally was more or less wrote off to die, the docs told my loved ones, my children, etc. that i would not make it. I spent 3 months last year in a bed, hospitalized on & off,etc. One year later, my kids still enjoy me, and i still enjoy them, and life as well. I never have feared death, but when i was at its door,those around me, expressed thier will for me to live, and still to this day, they do. Hence I'm still here. With todays medicines, and technology in the medical field, theres really no reason a person a should be in her present medical state. My point is, sometimes, we have to love others, until they can learn to love themselves again, we have to lead them to it. Surely you cant make them drink,as the old saying goes. But surely the odds are very high she will take drink if lead to healthy water*
Good Luck & God Bless*
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Survivor
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Legend
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Reged: 10/30/05
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Loc: Get off the fence and live again!
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I am sorry to here this.. I support her decision, if all other avenues have been exhausted. As Co said above. In fact, go read Co's post again.
God Bless,
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have you thought about hospice?
Also was she seeing an HIV specialist? Perhaps you can bring one in if your son will allow. Are you sure that she has tried all the meds possible? There are new ones...
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Perhaps if you shared with her stories of survival. I was diagnosed in 94--had a cd4 of FOUR and VL in the hundreds of thousands. I was blessed to have been referred to the top specialist in my area. He told me to "file for disability and wait". I told him"That's not convenient--my family needs me" I later survied toxic shock, etc. with that low of a cd4. then the new meds came out. they are hard to take and I'm still below 200, but now I have met a wonderful man, gotten married, he takes very good care of me and I have been blessed with 5 grandchildren.
Had I listened to my prognosis of 2 months, I would have missed the best years of my life. There are lots of stories on the site of courage and survival. I think the main thing to treat is the depression--without that you can maintain a positive outlook. (or, as my daughter says, just be too stubborn to die lol)
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Please tell her don't give up on life. She has a husband and three kids to live for (mainly the kids). Have them think how this situation is affecting the kids. With her being sick all the time and maybe in the hospital alot not share at least some time with them.
The reason why I'm talking like this is because I felt like she does (ready to give up on life, stop trying to fight and it must be God's will that I'm like this). I have two boys of my own and thinking what life would be like for them without me in it made me cry. I knew they would be hurt and somewhat alone without me. Yes, they have family to raise them, but they wouldn't have their mother to see them grow up and move on through their life. I was in the hospital before at the weight of 52 lbs. I worked hard getting my health back with all the ups & downs and changes in my medicine regime. Thanks to God, alot of praying and prayers being said in my behalf, my CD4 count is now 190 and my viral load is undetectable.
Tell them to put their trust in God and he will bless and provide for them. And also please tell her like everyone told me that for some reason God put her here on this earth and stop trying to end it before she find out what it is. If she want to chat with me please give her my email address: LeslieRoane02121@msn.com.
God Bless and I will pray for you.
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Ive been post. since 1992 been doing great thanks to my GOD, and meds. and I live for my kids,you cant force something on someone maybe a hospice thearapist or a priest or her husband could tell her that there is hope and she can prolong her life and have a good one at that .I never thought I would i lived like i was dting for so long and wasted so many precious days but now im building a life for myself and family I m sending prayers to you and wish you the best pray pray pray GOD is here..........love you.................
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More than one person here has shared that they were there too. And so was I, only 3 years ago. My t-cell count was zero. I was wasting. And the meds they put me on made me so sick that I spent whole days in the bathroom because I was too weak to make it back and forth from the bed to the bathroom. I thought about chosing to live whatever was left with out medication. Eventually I found a regimine that I could keep down, and as my health improved my tolerance for medication also improved. Today I am perfectly active and happy with my life. The thing is that there really are times when the decision not to prolonging one's life really is valid because the quality of life is so miserable. Right now your daughter in law is not really living and the idea of living for her children probably seems unrealistic to her because a mother wants to take care of her children and not be a burden. Any insisstance that she remain on earth just for the sake of prolonging her life is is insupportable. Never the less, I would run away from any doctor in 2006 who says that the prognosis for life is only one year with medication. That is the kind of thing they said in the early 90S. It hasn't been my experience, nor that of dozens of other people whom I know who have made wonderous recoveries from simmilar horrors. I doubt that I would have been willing to do what it took to stay alive if the olny hope my doctor had offered me was another year of holding on to the toilet. Also, is she being treated for pain and is she being treated for depression? There are mountains of research that show that treatment for painand depression can restore a persons desire to live.
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There is still hope for your daughter-in-law. Please do not forget that God will always be there just keeping on praying. Last year my Aunt found out she was postive. She weighed 95pds and cd4 count was ZERO. Every infection out there she had it. It came to the point where the infection spread into her ears and required surgery. Her kidneys failed, she had hep-A, pneumonia her vision was almost lost her blood count was down to 3 and close to death. One would say how is she still living But she now weighs 185, her cd4 count is 300+ ,all the infections are now gone. She only has to take her meds. Thats why I keep prayer and hope in your hearts at all times.
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Depression plays a huge part in HIV. Much of what you wrote about her points to depression. Depressed Hifivers don't take their medications. See if you can talk her into seeing a therapist. Also see if this can somehow be brought up to her doctor.
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just be there for them as much as you can,because you cant force sombody to do things they dont want to do,if every other option is gone then i sugjest you concentrate on the children, im sure threir father will need to be with their mother.and give as much love to them even if their decision isnt peticularly the choice you would make as your not the person dealing with the actual virus,the children will need alot of love through this tough time.take care
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Who knows what's going on in that relationship, and in that family. Tere could be alot under the covers that is not being said. This sounds kind of paranoid, but I wonder if maybe she has been somewhat neglected by her husband, in emotional support. Since he is Hiv negative, and I have seen this before, she may have experienced some blame and shame for having the virus, and in a silent but still palpable way, is being punished , and her will to live is just no longer there.
When there is no will and so much depression , then how does the human body respond? By dieing!
Lets all say a prayer for her, for her husband and for the kids, and have faith that our prayers will be answered, because they can be and have been , will continue to be answered in so many ways.
I am a 57 year old woman , who gets up every day to face the world, and without love from my family and friends and faith that God has the last say, i could not make it one day more.
Bless you all and hang in there!
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I want to thank everyone for their support and help. I have just spoken to my son again. He was finally able to convince his wife to go to the hospital. She was there a day and a half and wanted to check herself out to go home to "spend her last days" with the kids.
Contrary to what one poster said, my son is beyond frustrated and angry with this decision. He knows she can live and has tried everything to convince her to do what needs to be done. At the time he called me he was still trying to keep her in the hospital. His frustration is partly based on the fact that he can not convince her to do anything and short of staying home from work (which they can certainly not afford) he cannot be there to monitor her meds. I don't know where this will lead, but she is going to go stay with her mother who will "nag" her to take her meds. This does not seem lke a long term solution unless she intends to stay with her mother.
The doctors strongly advised her to stay in the hospital. She is so anemic they can't draw blood and she was getting transfusions. My son is supposed to call again today to give me an update.
In my opinion she has made a choice; between living and dying she has chosen to die, leaving three small children (2 to 10) to live without their mother. This goes beyond depression, this stems from her family (including her mother) who is has undoubtedly made her feel "dirty" and of no value. This image would not be supported by my son.
I appreciate anything you can add that I can give to my son to help him through this painful time. Thanks,
Mother-in-law
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