Brother needs input - PLEASE respond

[ronron]

My homo sexual brother has AIDS.  He was diagnosed in 1990 with HIV.  Since then he has lead a very transient life and also indulged in heavy drinking (large quantities of of liqour), substance abuse (crack cocaine), etc.  To my knowledge he has never received medical care or consistent prescription treatment.

After much persuasion, my wife and I finally conviced him to come for a visit.  We flew him home and spent a few days with him for the first time in two plus years.  His condition had obviously detioriated from the last time I had seen him.  We asked him, and surprisingly he agreed, to move home and stay with us.

On that visit and since he has been here, less than 2 weeks, I have become increasingly concerned.  I would appreciate any feedback you can provide.  Following is some info as I understand it.

He has been hospitalized twice in the past 12 months.  Once for a Mersa infection and then again in February for pnuemonia.  Presently his greatest issue is that he can not swallow food on a regular basis.  He claims that it "gets stuck" on the way down and obviously causes him pain.

His motor skills are also very poor.  He appears to be unsteady when walking and has very poor coordination.  He often stumbles but as to date hasn't fallen - at least not in my presence.

His mental deterioration bothers me greatly.  We go to the store, and decisions that would take me seconds to make take him minutes.  He seems to be unaware of how long he stands at the register straightening out money or reviewing his reciept.  Yesterday we had a phone book dropped off at the house and he "read" the restaurant section for over an hour.  Often times his social skills are greatly lacking - hacking while others are eating, spitting flem in the kitchen sink, etc.   His mood is very erratic and can go from pleasant to rage instantly with little or no provocation.

This is not the brother I know.  He has nothing - no income, no medicaid, no insurance, no disability, etc.

We have had our first appointment at the local AIDS facility hear in our area.  They are AWESOME.  They will be guiding us down this road starting with a referral to the local ID center.

His T cell count in February was 9 and his viral load was 350,000.  He is Hep A and Hep B positive.  His weight is at an anorexic level.

I guess my question is two fold:
(1) if he does follow through and begins taking meds is it too late?
(2) if he doesn't (he seems to have a history of not) what would be your unofficial "prognosis"?

I am sure we will learn more and hear it from the docs as we move forward.  But as you all know the wheels of progress move slowly.

Can someone please provide an overview of their thoughts.  I am very well read on all of the resources that are available on line.  I just want to hear it straight - from someone who knows.

Thank you in advance for any feedback.

[pozmnguy]

Ronron,

Welcome to the forums.  What a fantastic gesture.  That truely is what family is all about.

As far as HIV numbers alone he should have a great chance if he is up for the challange and can gain access to proper medical care (a great ID Doc) and takes his prescribed medications consistantly.  There are people one these forums that have bounced back from much worse numbers.   As far as all the other symptoms I would have to ask, is he still drinking or using? 

Jim

[ronron]

Two years ago I visited him out of state.  He had ceased the cocaine use but was still drinking - constantly - if he wasn't going to work he was drinking.  Since I have seen him recently there has been no drinking - he can't get it down if he wanted. 

I have read a lot about people bouncing back from whacked out numbers.  I guess my fear is that he won't follow through on the meds.  I can provide him a warm home, family, nephews, transportation but I can't take the meds for him.

His mental state really concerns me.  Could this be dementia?  We are talking about a college educated person who takes minutes to pick an item off of the grocery shelf. 

His history is one of jumping through all of the hoops, getting everything lined up, but never following through.
Hopefully this time is different.  For our family dynamic, it says a lot to me that he would come and live in his "little" brother's home.

What if he doesn't take the meds???

[pozmnguy]

Ronron,

I had a pretty heavy cocaine addiction which I escaped pretty much unscathed (with of course the exception of my HIV situation) however neurologically I escaped damage.  I have friends that however did not.  They simply did irreparable damage. 

I would imagine that he has definitely hit rock bottom and hopefully sees the genuine love that you and your family are offering.  Hopefully that will be enough for him to see his value and want to fight to get better.

When they put him on a med program he must remain on it and consistant.   

You are doing all the right things and will have much more information once you can get him lined up with a good doctor.

If he does not get on some kind of program things will only get worse.  HIV sure won't correct itself.

You Rock!

Jim

[md]

His motor skills are also very poor.  He appears to be unsteady when walking and has very poor coordination.  He often stumbles but as to date hasn't fallen - at least not in my presence.

His mental deterioration bothers me greatly.  We go to the store, and decisions that would take me seconds to make take him minutes.  He seems to be unaware of how long he stands at the register straightening out money or reviewing his reciept.  Yesterday we had a phone book dropped off at the house and he "read" the restaurant section for over an hour.  Often times his social skills are greatly lacking - hacking while others are eating, spitting flem in the kitchen sink, etc.   His mood is very erratic and can go from pleasant to rage instantly with little or no provocation.

This is not the brother I know.  He has nothing - no income, no medicaid, no insurance, no disability, etc.

We have had our first appointment at the local AIDS facility hear in our area.  They are AWESOME.  They will be guiding us down this road starting with a referral to the local ID center.

His T cell count in February was 9 and his viral load was 350,000.  He is Hep A and Hep B positive.  His weight is at an anorexic level.

I guess my question is two fold:
(1) if he does follow through and begins taking meds is it too late?
(2) if he doesn't (he seems to have a history of not) what would be your unofficial "prognosis"?

Welcome to the forums and thank you for trying to take care of your brother.

There is so much that I want to say to you and I am not sure how to say it.

Based on the information that you have given, including the length of time that your brother has been infected, his current numbers and your description of his condition I think that it is highly likely that your brother may be well into AIDS Dementia Complex. If that is the case then it is imperative that diagnosis is confirmed by an infectious diseases specialist and that he is started on medication immediately. In that case it is possible that the decline in his cognitive abilities can be arrested and perhaps even reversed. Be aware that full blown AIDS dementia cases are mercifully quite rare since HAART became available and, depending on where you are, it is possible that your ID doctor may never have seen one before. It is often misdiagnosed as depression, although in someone with the symptoms you describe I would be surprised if the doctors didn't at least consider it.

The reason that you have no time to waste is that the progression of the dementia is not linear once it gets established - people don't always just decline gradually - they can have major setbacks almost literally overnight and once that happens it is often very difficult to ever get them back to their previous level.

Unfortunately, I speak from experience.  My partner was diagnosed with HIV, AIDS and AIDS Dementia Complex in June 2006 over 3 months after he suffered a sudden and precipitous decline in his cognitive functions in February 2006 - prior to that he had complained of difficulty remembering things but was functioning essentially normally - after that he went into an even greater decline from which he has never recovered. His CD4 cell count was 39 at diagnosis and, after being on HAART for over 2 years it is up to about 130 and, physically, he is in quite good shape. Mentally he is like someone with mid to late stage Alzheimer's and needs assistance with all activities of daily living except for feeding himself.

So, if you want to save him you will have to act quickly.

In the best possible case he could come back from this and recover sufficiently to be able to function normally.

You do, however, also need to prepare yourself for the possibility that it may already be too late and that either he won't recover at all or he may recover physically but not mentally.

If he can't get treatment or doesn't want to follow through with it then I am afraid that you should probably start to think about hospice care for him.

One final thing - get him to sign a durable power of attorney for healthcare (or whatever your state calls it) while he is at least arguably still competent - you will need it if he gets to the point where he can't make decisions for himself.

Good luck.

[YaKaMein]

Ronron,

Another welcome to the forums. You've come to an excellent resource of information, but most importantly, support here. You've already received some honest and sobering response of first hand experience. There's no way to predict the outcome of how your brother will fare medically, emotionally, or mentally; however, the support and efforts you're demonstrating can only increase the chances of a successful outcome. Hopefully, your brother will fully recover with treatment and be able to take charge of his life and health.

I applaud and admire your intervention in your brother's life at a time when he is unable to care for himself.

Keep us posted. Wishing you and family all the best. YaKaMein

[ronron]

Thanks to all of those who have responded so far.  It is comforting to hear from those people who have actual experiences to share.  Please reply if anyone else has other experiences or thoughts.

[hotpuppy]

Your brother is extremely lucky to have a caring family member like you.

I think it's also important that you and your wife consider getting vaccinated for HepA/B.  It's two easy shots, they aren't very expensive, and in the event that he has a recurrence you don't want either.  My personal belief is that everyone should be vaccinated for these.

Please be sure to update us with your progress.  Many of us may be able to shed light on some of the mysteries of working with ASOs or HIV.