Need Clarification on HIV Fatigue

[Maestro]

OK.  So my uncle is on the downtrend again.  He is falling asleep 8-10 times a day just sitting in his chair.  It even happens in the middle of a conversation.  Is this HIV fatigue?  I NEVER remember him doing this in the past.  I remember him being tired, but not nodding off.  I mention this because last time this was happening it was his kidneys giving out.  When I ask him if everything is OK, he says he is fine.  When I took him to the emergency room, slumped over, unable to move, drooling on himself, and wetting his pants, he said he was fine to the dr. 

So I think he is scared to go back to the hospital.  I really don't know what to do.  Is this his way of saying he doesn't want to go on without saying it?  If he did say that to me, I would have no idea how to react.  He is constantly drinking soda, probably 10-12 cans a day.  Won't drink water. 

The last time we were at the hospital they said it was the viread giving him kidney issues so they took him and switched to invirase.  He saw improvement for a few days, but appears to be heading back downhill.  I am starting to think that maybe it was not the viread causing the kidney troubles and just the kidneys on their own causing trouble.  Then again, I am no dr.

So, basically, what does HIV fatigue 'look' like?

Thanks so much,
M

[Lisa]

Hi M,
It may very well be possible that he has lost his will to go on, or there may be a real medical reason for his dozing. The one thing I do know for sure is that all of those sodas are not providing him any reasonable amount of hydration. Most all of them contain caffeine to some degree or another, and caffeine acts as a diuretic. he needs to be drinking water, but you may hard pressed to convince him of this.
Encourage him to drink at least a glass of water for every can of soda. He should probably be seen by the doc too.
I will keep you in my thoughts today, and I wish you well in caring for him.
Let us know how things are going.
{{{{hugs}}}} for you.
Lisa

[Christine]

Hi M,
I can tell you how I feel with the hiv fatigue. It is a horribly overwhelming sense of exhaustion. I feel shaky, my head feels a little light headed, and sometimes my stomach becomes upset- gassy, diarrhea. If I have had a busy day, it usually takes 3-4 days of rest before I can fully recover from the busy day. By rest, I mean waking up, showering, then sitting on the couch all day, then doing the same thing the next day.

I sometimes will take a nap in the afternoon, but it is pretty rare. I usually feel more tired if I nap.

My opinion, if your Uncle's behavior has changed in the past few weeks from what was normal for him, I would say he should see the doctor. There are a few things that can cause fatigue- the meds, the virus itself, untreated infection, depression, lack of proper nutrition.

Christine

[Maestro]

Lisa, Christine,

Thanks for the info.  I have tried everything short of dunking him in water to get him to drink water...but not onlly does he refuse, he lies to me about what he eats and drinks.  If I didn't hire the 24 hour care taker, I would be completly in the dark!

He seems to have all the 'classic' HIV fatigue symptoms, but the dozing off in the middle of a conversation seems above and beyond.  We got him a doctors appt. for today so I will know more.  The problem is that I cannot go with him to the doctor and when he sees the physician he will tell the dr. he is "fine" so he can avoid going to the hospital...

But, as always, I will keep you up to date.

M

[alive2]

water is a must,is he on meds that may be causing this problem?i have had the same things happening to me but not to that degree.i have been told that depression is a main problem with having hiv and depression at the same time and this will happen.and with the meds it can be possible they are the cause of mood and other issues,keep on trying dont give up,hope it works out ok for the both of you,take care

[Matty the Damned]

M,

Maybe he doesn't want to eat or drink for a reason.

MtD

[Maestro]

MtD,

Maybe.  But he sure doesn't act like it when I am around.  He talks like everything is great...then when I leave, he just sits there wasting away.

M

[J.R.E.]

Hello Maestro,

I am going to give you some information. I received this information on a pamphlet from the regional Hospice center here in Florida. This may be DIFFICULT for some to read, but it is something that needs to be discussed, especially for those that are caregivers...
These changes are normal, natural ways in which the body prepares to die. They are not medical emergencies. The best responses are comfort enhancing measures.

This information is provided by HOSPICE for caregivers and family members....

COMMON MENTAL AND EMOTIONAL SIGNS :

  Your loved one may spend more and more time sleeping, when his body functions start to slow down. He may be difficult to arouse at times, from sleep, and he may spend most of the day and nights in bed. His eyes may stay open, even though he is asleep.


CONFUSION :

 As your loved one sleeps more, he may become confused about the time, place and persons surrounding him. While his attention is drawing inward, he may speak of seeing a place or people not visible to anyone else.


WITHDRAWAL OR A SURGE OF ENERGY :

 Your loved one may speak less than normal, or not want to speak at all. He may turn his face to the wall or sleep in a fetal position. Thi is NOT a slight against the family; his body and mind are preparing him to detach from his surroundings and relationships.

 On the other hand, it is not uncommon for someone near the end to "wake up" and talk clearly, ask for a favorite meal and actually show improvement in symptoms for a few hours or even a few days.


HOLDING ON :

  A dying patient may try to hold on to life if he senses you are having difficulty letting go. Some patients wait until certain people arrive to let go ; others wait until they are alone. Assure your loved one,that you will be all right and give permission to let go when he/ she is ready.



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COMMON PHYSICAL SIGNS :

 Changes in body temperature...  Your loved ones body temp may become increasingly cold, especially the arms, hands and legs. He may run a fever. you may notice that his skin looks bluish or blotchy. His body is decreasing blood circulation to the limbs, to conserve it for vital organs.


DECREASING BLADDER AND BOWEL FUNCTIONS:

 As the body organs slow down, so does the need to eliminate waste. You may notice a decrease in the amount of a patients urine, and it's color could be unusually dark.. Your love one could lose control of his bowel and bladder functions.

UNUSUAL BREATHING :

  Noisy breathing could occur if mucous collects in the throat. Your loved ones breathing patterns may change ; there may be periods when he breathes very rapidly, or period up to a minute, where he may not breath at all.


RESTLESSNESS :

 As you love one begins to draw inward, he may make repetitive motions such as pulling at bed linen or clothing.


LOSS OF APPETITE ;

Food and water is necessary for health and well being because it provides energy to the body. As the body prepares to die, it no longer needs this fuel. Although it may be difficult for families to accept, it is normal for a dying patient appetite or liquid consumption to gradually decrease until it is lost altogether.




Maestro, I do not know what state your uncle is in, and I know the information I provided here may be difficult for yourself and others to read, but it's also very important to understand the dying process. For some patients, signs of impending death begin months before the actual event. For others , it could be just days. Lisa supplied you with some information, Also stated that you uncle may have lost his will, or perhaps it could be medical, and Matty also made a statement, this is why I am posting this for you, and other caregivers out there. If anyone feels this post is inappropriate, please tell me, and I will remove it. But since this site is for those infected with and affected by...I Feel this post necessary.




Sending my best to you and your uncle--------Ray


EDITED : Perhaps we need a forum here for caregivers.....

[Maestro]

JRE:

Thanks SO much for that info.  Some of it is right on, and some doesnt seem to apply to him.  You should have seen him freak out when the nurse mentioned hospice.

Anyways, got an update.  He went to the dr. today, and as I guessed it, he told the doctor nothing was wrong and he doesnt know why he was there.  In fact he called me to thank me for making an appt. for him, then his assistant called me and said he was saying "Why don't they mind their own fucking business" after we made the appt. for him.  Clearly not too much rational thinking going on.

Thanks again for all the info..

M

[J.R.E.]

Maestro,

I need to give you this information also :

The above info,describes signs and symptoms that are common when a person is near death. It is only a guideline : each death is unique as the person who faces it.

Your loved one may experience all, some, or perhaps none of the symptom stated above. Likewise there is no timeline.

As the caregiver or family member of a seriously ill patient, it is important for you to know how the human body prepares for death. When you understand the process, youare better able too comfort your loved one and find peace of mind for yourself.



Hospice is a wonderful, caring organisation. They are there for the patient, they are there for support for the family members...

Personally, I have dealt with hospice in the past. Twice this past year, and at least three time over the past 15 years. They are a wonderful/ caring group !! If it is determined that your uncle receive hospice care, you can be assured he will receive the very best care.


Take care--------Ray

[CowboyPOZ]

J.R.E. That is some very good information to have. Thanks for posting.

[Maestro]

So, here is where I am at now.  He probably spends 1/2 the day falling asleep in his chair.  It is like he cannot fight it and just zonks out.  Is this normal for HIV fatigue?  When I bring it up with him, he gets angry and says everything is fine and this is normal for AIDS.

I am really clueless here.

Thanks,
M