Please Help Me Understand HIV "Bad Days"

[Maestro]

So my saga continues with my Uncle.  In my eyes, he appears to be deteriorating.  When I ask him, he just says he is having an "AIDS" day.  However, these are every single day!  He has slurring speech, sits in a chair sleeping for over 1/2 the day, no desire to leave the apt. and do anything.  I am afraid something is really wrong and he doesn't want to admit it. 

So, if someone could ellaborate on an HIV bad day, it could really give me some insight.

Regards,

M

[Alain]

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[ademas]

The bad days remind me that I may never experience a "normal" life again.
It's easy--on the bad days--to feel less than human, and very isolated from the world, and to wonder "what's the point?"

Still...this doesn't explain all that your uncle is going through.

Didn't you mention once that he was using a lot of painkillers?  What you describe makes me wonder if he might be abusing one of his medications.

I've been through AIDS with a lot of people, but I can't say I've ever experienced what you're describing with your uncle, even with my friends who were near the end (pre-morphine drip, that is...)

On the other hand...I live with my brother, who is diagnosed with "Rapid-Cycling Bipolar Disease".  I have seen him so depressed that he does absolutely nothing for several days, and I've seen him abuse his medications to the point of being a complete zombie.

Are you sure he's not over-medicating?  Is he on anti-depressants?

[Maestro]

On the contrary, I am quite sure he is over medicating.  But I cannot be with him 24/7 so it is very tough to keep on top of. 

So the constant falling asleep and zoning in and out is not 'typical' of a bad hiv day.  Well, we got him going to a nephrologist so maybe they can help.  If he was honest with us, it would be SO much easier to help him...arrrgg..

Thanks for insight, it really does help.

M

[Ann]

M,

I can't help but feel that the main threat to your Uncle right now is depression. Don't forget, he lost his long term partner not long ago and is bound to still be grieving. He may even be blaming himself for his partner's death, considering it was due to a heart attack while he (your surviving uncle) was ill and hospitalised.

The problem is, it sounds as though it might be impossible to get him to seek counseling. All you can really do is be there for him and encourage him to get some help dealing with all the terrible events of the past few months.

Ann

[IzPoz]

On the contrary, I am quite sure he is over medicating.  But I cannot be with him 24/7 so it is very tough to keep on top of. 

So the constant falling asleep and zoning in and out is not 'typical' of a bad hiv day.  Well, we got him going to a nephrologist so maybe they can help.  If he was honest with us, it would be SO much easier to help him...arrrgg..

Thanks for insight, it really does help.

M

Maestro,

There were times that my husband would inadvertently overmedicate himself.  He would forget that he already took his meds, then take them again.  And later, he'd forget again, and take more.  I wasn't able to be with him 24/7 either, as I had to work.  This was prior to my brother in law coming to stay with us.  He'd even do it at night, some nights I'd wake up, others, I didn't.

A lot of that had to do with the kidney problems he faced, which lead to his renal failure.  Please, urge your uncle to get to the doctor.  Go with him, and / or call the doctor and explain your concerns to him.  He might be experiencing kidney issues and doesn't want to admit it.   Your uncle may get pissed at you for calling the doc behind his back, so be prepared for that.  Hopefully in the end, he will understand why.  Explain to the doctor your concerns that he might get angry with you, so perhaps you and the doc could work out a plan together.

Being caregiver for a loved one is very, very difficult, and it's going to be a  bumpy ride.  Just be strong and stand your ground. Be there to support him, and let him know you are grieving as well for the man you both miss.

My thoughts are with you.  I do hope you have emotional support for yourself as well.

[Ann]

M,

I just realised that when I said his depression might be the biggest threat he faces right now, I meant to also say that the reason this would be the biggest threat is because it is likely to be behind his not wanting to deal with the very real physical stuff he is going through.

If you can possibly make some sort of breakthrough with him regarding dealing with his depression, he might well be more interested in dealing with the physical side of things. I really get the impression he is in a very dark place emotionally and until this is taken care of, I can't see the other side of things improving much.

Ann

[Dachshund]

That is a tough one...sometimes I don't think we understand even we are having our own bad days. There are so many variables and many times no easy answers. In reality, given what your uncle has been through I don't find his lack of response all that out of the ordinary.

What I do find out of the ordinary is the love and compassion and concern you exhibit for your uncle. I applaud you for that.

Hal

[Maestro]

Ann (and others),

Thanks for the info.  It is tough.  When I ask him if he feels depressed he says he is "FAR FROM DEPRESSED".  When I suggest a psychiatrist he flips out.  And the grieving process....Haven't seed one lick of that.  In fact, he partner is buried about 3 hours from my house, and he NEVER asks to go see the grave.  Seems odd to me.

Anyways, each day something new pops up.  I was hoping to see 1 week of good health and I have yet to see that.  The dr. called me and said his creatin level was at 2.5.  They said he has chronic kidney failure.  Seemed like they thought the Viread was giving him the kidney trouble, but he has been off Viread for 2 weeks and the kidneys have not improved.

Doing the best we can...

M

[Dachshund]

What you can't do is take on your uncle's illness as your own. What your uncle is not saying speaks volumes.

[Ann]

M,

Grief manifests itself in thousands of different ways. We all grieve differently.

Another thing to consider is this - kidney problems means toxins aren't being filtered out of the blood as they should be. One thing this can effect is the brain - and consequently thought processes. This can be adding into his depression.

I just posted a thread on depression and although it was written with fibromyalgia sufferers in mind, much of it applies to people living with any chronic illness, hiv included. Please have a look.

Ann

[Christine]

Hi M,
Just wanted to second what Hal said, your dedication and compassion towards your Uncle is wonderful.

When I read your posts, I feel empathy for both of you. I know your frustrated, and feel helpless and don't want to see him suffer and for his life to end shorter than it should.

From your Uncle's perspective I understand that sometimes it seems easier to just sit and wait for the final days to come than to fight against it. He has had such huge changes and painful events happen to him the past few months.

I have bad aids days, but your Uncle's do seem worse than anything I have experienced. Are you going to his doctor's appointments with him? If yes, then tell the doctor how you feel.

Other than a court order, you can't force someone to make health care choices. You can be there for him, tell you want to help him, tell him you will do whatever needs to be done. Without trying, he does not really know if his circumstances can change.

Christine

[IzPoz]

Maestro,

He's lucky he has you to care about him.  All you can do is guide him and give him suggestions... offer your help and support.

Though I do have concern about the kidney function, and that he may need dialisys soon.  It's not easy dealing with CRF, as the toxins in the body can build up and cause confusion.

Just hang in there, and remember that you can't control it all.

Be well, and take care of you too.