The only child of a sick father

[MyFathersSon82]

Greetings community.  I guess as this is my first post I should provide some background.  Back in May of 2013 my father was at the hospital with me and my wife as we were awaiting the birth of my daughter, while there my father had two strokes (perfect place right?!).  After many tests and three months of being at the hospital my father was moved to a rehabilitation center.  While there I learned that my father had AIDS, not just HIV but late stage HIV and his immunity levels were dropping every day.  It has always been understood that my father was homosexual but he still to this day will not admit it, and that is up to him.  I love him no matter what and while I want him to be out and open so that he can see that our family will love him regardless, I respect his decision to even try to keep it from me. 

Since learning of his illness I have witnessed my fathers health drop dramatically.  We have gone through (and continue to go through) countless bouts with bacterial pneumonia and clostridium difficcile or "C-Diff".  He has also been diagnosed with COPD and Congestive Heart Failure which I can only assume is because of the virus and the medication he is taking having an impact on his heart. 

I have also began to notice he is slowing beginning to lose his memory and ability to walk.  He is always tired and has fallen outside as well as in the house onto his kitchen floor and living room table.  I feel incredibly guilty because I cannot begin to imagine the physical and emotional pain he is dealing with everyday.  And even with that in mind I often find myself asking why "I" am alone in supporting him.  His refusal to let anyone know his condition leaves everything on me, as I am his only child. He is not married, does not have a partner, and will not talk to family.  My wife has been incredibly supportive with the emergency room visits, the constant worrying, the frustration and the occasional breakdowns that i experience while trying to stay strong for my father. 

I am new to this community so please be gentle with me, but I hope, if there is anyone out there, I can get some advice on how to mentally stay in this, I am grateful for the medications that my father is on as we believe they will give him a long life, but it kills me everyday that his "long life" will be this painful.

[emeraldize]

Good that you love your father so much. You can be certain you'll find gentle reception and support here. It's Friday night and late, but people will post their comments and experiences in the coming days.

I hope at some point you can invite your father to come here and take advantage of the information, insight and thankfully, humor. He is welcome to read, laugh, learn and not ever post or --post whenever he wishes.

Welcome.

[zach]

i'll come back to this in the morning, promise. and yes, we're here

[mecch]

I am sorry you are all in this situation.

What medicine is he on?  What is the status of his immune system exactly?
I assume he went on anti-virals last may 2013?  has his viral load come way down? Where are his CD4s? 

Is he taking antibiotics to prevent pneumonia?  Why the repeated cases?

Also, do you know if he regularly takes all prescribed medicine?

Your father is going to have to carefully follow all the medical treatment he needs.

Has any doctor discussed with family his prognosis?

[zach]

hey, congratulations on your daughter!

it sucks about your dad's diagnosis, but i want you to know that with proper care and adherence to that care plan your father can improve and live with this.

mech covered the most important questions, i'll hit them again

1. may '13 dx... he really should have been on treatment since day one, was he?

2. what meds is he on?

3. what are his cd4 and viral load numbers NOW? what have they been? don't panic when you hear these numbers, and then start to learn the implications of them. i want you to know, there are many members here who started this fight with single digit cd4 counts, and viral load in the millions. it is not an easy fight, but it is winnable.

4. pneumonia, mech is right, there are preventative meds (for me, zithromax) we have to take when we are in the AIDS territory. i take them religiously, because i've had pneumo twice while off them

The rest of this is just personal type stuff. I'm speaking to you now as a father, with a bunch of sons. Your father is gay, so what, seems like you already crossed that bridge. If he doesn't want to talk about it, that is his choice.

Same goes for his medical care. If he is of sound mind, he may be choosing not to take his meds. It may hurt to watch him not take care of himself and be pretty much powerless to step in. I hope that is not what is going on.

Try to convince him. That may not be an easy conversation. Make it hard for him. Play dirty. I would use the child as emotional blackmail in a heartbeat. He doesn't want his granddaughter growing up without grandpa.

If possible, try to speak to his Infectious Disease Doctor (I'm assuming you are in America, different titles elsewhere) not just his General Practitioner. Get in front of this ball.

This could well be just a situation your father needs a little help to stay on schedule. Once a month I count out 308 pills, it can get a little stressful. Use weekly pill organizers, and an alarm clock on a watch, they help day to day.

His heart condition may or may not be related to HIV, I wouldn't make any assumptions at all on that. Related or not, it makes his fight more difficult.

Whatever it takes, do. HIV is very treatable. I have AIDS and I ain't dying anytime soon. Trust me, no matter how bad your fathers numbers are, I'm not going to bat an eyelash. I know he can come back from them. But it takes constant work to stay healthy. 

Good luck, stay in touch, and yeah drag your pops in here

[ImisstheOldTimes]

Hey welcome,

I was you in 2012, except my dad really waited too long to be diagnosed. It was very hard on me and my family. He couldn't walk without falling, he wound up for the most part on oxygen and in a wheel chair. He wound up with AIDS related dementia, and it finally costed him in his life.

One of the things that helped me cope was this website, many of the regular members I consider friends... You have some witty banter and heartfelt concern, I wrote a memorial in the memorium forum entitled "my father" feel free to read it and my prior threads, I'm sure you'll see some similarities between how your feeling and how I felt. I still enjoy coming here and reading about people's lives and adventures. Hang in there.

Heidi

[MyFathersSon82]

He wasn't officially diagnosed until November of last year.  That is because I hadn't heard from him in three days and it was Thanksgiving so I had the police near his home come and check on him to find him crawling to the door to let them in. He was diagnosed with the virus as well as pneumonia at that time. He is on medication and you must forgive me but I don't have those in front of me. He has had fluctuating viral loads and CD4 levels this entire time. Sometimes the doctors are happy sometimes they are worried.

The falling and dementia has just started recently. He's also dealt with the C-diff almost the entire time, every time we think it's gone it comes back. Because of the c-diff he ended up having to have surgery to reposition his bowel and repair a hernia from the pushing. Now we're facing congestive heart failure. It just seems like it's never ending.

He is very good with his AIDs meds as well as all of the others he has to take now.  I don't think he's at the point whee he can't take them himself. We are however planning to move him in with us at some point.

[Jmarksto]

MyFathers: Welcome to the forum, and I am sorry your father, you and your family are going through this.  Your support of your father and your wife's support for you is wonderful, and congratulations on your daughter.

Please excuse our questions, but the answers really do help us get a better idea of the situation and hopefully provide better support for you.

How old is your dad?

If your dad was diagnosed last November, he should have three (maybe four) viral load and CD4 tests between now and then - every three months is pretty standard in the first year.  Fluctuating CD4 counts can be normal, although the viral load should be trending down steadily. I'd be curious to know those numbers more specifically.

Is it possible that the dementia is affecting him from being adherent to his meds? There are days that I have to think twice about whether I took mine -- so having a system (weekly pill organizer) and reminder (daily alarm, text, etc.) can really help.

In terms of how to help you "mentally stay in this" -- having a better understanding of HIV may help, as Zach has proposed engaging with his ID doctor may give you more perspective, and broadening your support network hopefully can all help. 

Again, sorry you are going through this, and I hope things turn around for you and your dad soon.

[MyFathersSon82]

So sorry I haven't been back in some time.  Hectic hectic time for me.  I really appreciate everyones kind words.  Let me try to answer the questions that have been asked.  He is 57 years old, he is on Trivica and Truvada?  I hope those are spelled right.  I do not have his numbers, he did have three test though (good job) and just had one yesterday as well.    The viral load has fluctuated however it could be from the different medications he had taken and the hope is that the medication he is on now is working. 
He is very good about taking them though, even in the hospital when they were not available he remembered to send me to his house to pick them up.  My fear is the continued C-Dif and Pneumonia will weaken him even more than the virus.

An update I can say with a bit of joy is all of the test for Congestive Heart Failure have come back negative so we do not believe that is a fear anymore.  His quick weight gain is from his medication accordingly to the doctor (is this normal?).

I do try to continue to learn more and more about the virus and the impact it has had and is going to have on him.  Sometimes it feels like a death sentence but sometimes I remember that it is much more treatable now than it use to be.  Thanks again everyone.

[emeraldize]

Glad to read your update. Brief note here. Try to get your father's numbers and chart them over time. It's a way for both of you to be involved in sharing his, hopeful, progress.He should be getting tested on a quarterly basis. If not, that's something you can do to proactively nudge him and/or his care providers. Again, if you're comfortable inviting him, he is welcome here.

[MyFathersSon82]

I will remember to get them from him the next time I go to his house.  He's very upset because he has been on the medication for a few months now and his numbers were getting lower and lower but the doctor called him last week and told him his numbers "were much higher now" and they would need to draw more blood and run tests.  Does this happen?  Can it fluctuate even when your medicated?

[Jmarksto]

MyFather;

When we talk about numbers we need to be specific about what numbers we are referring to - there are two numbers to track:

CD4, or T-Cells, the white blood cells that indicates how the immune system is doing.  Normal is 500 - 1500 cells/cubic millimeter.  If this number is going up that is good.

Viral load: The viral load can swing up and down in the absence of medication, and should go down steadily once starting medication. It can take some time (several months or more...) to get to an "undetectable" viral load, which is generally less than 20 copies per cubic millimeter. If this number is going up it may mean that he needs to switch meds, that is worth a call to the doctor.

[mecch]

I will remember to get them from him the next time I go to his house.  He's very upset because he has been on the medication for a few months now and his numbers were getting lower and lower but the doctor called him last week and told him his numbers "were much higher now" and they would need to draw more blood and run tests.  Does this happen?  Can it fluctuate even when your medicated?

I've been following your posts and my impression is that something isn't going correctly with your father's adherence. You say he is adherent but really he should be quite low and gradually going down, and down.  "Much higher now" is not an appropriate piece of information for a doctor to communicate and it is not going to help you if you are going to be involved in his treatment. Its not a useful piece of information. What does that mean? If he is going away from undetectable, there is a problem that needs to be addressed by the doctor, your father, and perhaps yourself.  IF you are going to be involved, its time to learn more and start asking for very specific information that can tell you really how your father is doing.
I don't understand, as well, why he has had repeated cases of pneumonia. That also was a red flag that he isn't being completely treated, or that he isn't adherent, or that he is very very sick indeed. If you want to know whats happening you will need to but in, if he will let you, of course.

[zach]

we've asked you for specific, quantified information, without which we can do little more than offer is moral support

so far, you have only been vague, and not a single specific response

[emeraldize]

From your most recent post "I will remember to get them from him the next time I go to his house" -- when you have a chance to share those and any prior sets of test results/numbers that would be helpful to know.

Meanwhile, have a good holiday with your family and know that we remain supportive of you in your efforts to learn more about your father's health.