Another Update

[RevMC]

Hello everyone!

I know I've been quite on here.  It's been a trying month to say the least.  Louie seems to be getting sicker.  He lost his appetite, which he finally got back around xmas time.  He's vomiting again for no apparent reason.  No med changes at all.  Still on the TPN for 16 hrs a day. 

We changed home health agencies so we can have a nurse visit here at home or an hour away at his mom's house when we are up there.  So he get's seen 2x's a week by the nurses.

He's lost about 5 pounds.  Now when he's vomiting it's a dark greenish color and there is actually something else coming up that looks like ground hamburg.  He's getting bumps on his face that itch and now he's getting dry skin, white splotches, all over his face, head and now showing up on his legs.  We've tried different lotions and such but no good.  Doc's not saying much, just keeps trying different things.  It seems like every other week it's something different.

He's now getting forgetful as well.  Mid sentence he'll ask what we were just talking about.

His home nurse has asked if either he or I would like some counceling.  Louie said he didn't want any, and asked me if I wanted to go to a councelor.  After a lot of crying, I've decided that I need to speak to someone.  I've begun to get more depressed.  Guess it doesn't help that my b'day is this Friday, June 29'th.  I'll be 44 and in the gay community I'm close to being an old troll.  It's also making 4 years since I've had the enjoyment of intimacy with another man.  Masterbation only works for so long.  I don't want to bring up opening up our relationship out of fear of making him upset more than he already is.

I've contimplated cheating but the only time I'm away from him is when I go to work, then it's straight home afterwards.  So no chance of even going out to hook up with someone else.

I'm going to see about one on one counceling, or I may go to a "Caregivers Support group".  There are no HIV support groups near by that I could go to, not only that but all the one's I've been to seem to just talk about how to die.  Guess I'm just wanting to talk to others who are also caregivers.  I'm not sure.

I've faced the fact that Louie's going to die on me.  Even his mom is accepting the fact.  He told me that she told him to tell me that when he dies that I need to go find someone else and go on with my life.  WHEW that's a long sentence.  We've talked about him dieing.  He said he's scared that he'll never see me again when he dies.  Or that I'll be here for a long time and it'll be a long time before he sees me again.  I tried explaining to him that time is a physical thing and he's beginning to understand.  He's wanting to figure out a sign he can give me when he dies that he's OK.

OMG I'm just dumping all this on all of you.  I keep wanting to cry.  To tell you the truth, after 19 years of being HIV+ this is the first time I've ever had a lover who is sick.  I've had friends who were sick and died, but for one reason or another I wasn't that exposed to what they were going through.  Mostly they didn't want anyone around.

We cuddled the other night, it got me so hot and bothered and yet he wasn't interested in doing anything.  He hasn't had a sex drive in 4 years.  I don't know I guess I'm needing to vent again.  It just seems that all I want to do is cry.  He's noticing my depression and yet I don't want to say anything to him about it.  He's feeling bad enough as it is.

Other than that my t-cells are well over 300 now for the first time in I don't know how long.  I think my counts are the best they have ever been.

TY everyone for letting me get some of this out of my system.  Thank god I'm not writing a letter, the ink would have spots on it from tears.  I know, your probably saying that I'm a mess.  YEP, your right.  But I'm going to get setup with the Home Health Agency, which has a Hospice section, for the counceling.

Until next time. . .

[aztecan]

Michael,

Please, please, please do me a favor? Go to that counseling session or caregivers group.

You are literally going through hell right now and you're trying to carry all that weight on your shoulders all by yourself.

Being a caregiver is very tough. It is tough emotionally, physically and psychologically. I am grateful you were able to vent here, but I think you need more than words on a computer screen.

You need the knowledge your aren't alone, that others are also going through this and that it is OK to feel the way you are feeling.

If I lived closer, you would find my skinny butt on your front porch, one foot tapping the floor with my best "Mother Mark" look on my face.

Since I am too far away to be there for you in person, remember I am with you in spirit. Now, please do look into that support group or counseling?

(((((GREAT BIG HUGS)))))

Mark

[RevMC]

"Mother Mark"

TY, you helped put a smile on my face.  We see Louie's nurse at 9:15 am Monday (today) so will get the information for the counceling and go as soon as I can 1. either get an appointment, or 2. see when the next Caregivers support group meets and go right away and start going regularly.

HUGS to you "Mother Mark"  I kinda like that phrase (in private I'd probably call you DADDY!!!)

I truly wouldn't wish this hell on anyone.  I can only imagine what some others are going through.  It is a lot of pressures to carry on one's shoulders.  I'm surprised I've made it for 4 years of him being sick without needing help.  Guess things have gotten so bad that it's finally taking it's toll on me.

Again, thanks "Mother Mark"   

[Matty the Damned]

Rev,

Matty the Damned can only agree with Mother Mark (hehehehehhehe guess who just got a new nick name?) in the strongest terms. You need to organise some support/counseling for yourself. It's in your interests and Louie's as well.

This is a dreadful time you're going through and your comments about sex and intimacy indicate that Louie's failing condition is having a serious impact on you too. And that's to be expected. Expected, but nonetheless it needs to be dealt with.

With much love,

MtD

[RevMC]

Louie's nurse came over today.  She's going to get things setup for us both to see a councelor individually.  She said there is a caregivers support group that she'll get me in touch with.

TY for letting me vent.

[RapidRod]

Rev, you have so much on your plate to handle at the moment, I think counseling would help a lot. You need to be able to sit and talk with someone else if nothing more. If the nurse has not seen his vomiting, make sure you describe it to her/him like you have to us. Above all else take care of yourself and keep yourself healthy. You need all the strength you can muster.

Rodney 

[Jeffreyj]

Hi Rev,
I am so sorry you are going through this. I went through a similar thing with my wife, but it all took place in the Hospital over a 30 day period. It is such a difficult thing, and you are an amazingly strong man. I hope you realize that. But don't forget to take care of yourself. Your own health is important, sometimes you can get wrapped up in caregiving, you forget about YOU!

Louie is a very lucky man to have you in his life.

All the best moving forward. I wish you nothing but the best during a most difficult time.

[Robert]

HI Michael.

I'm so sorry to hear about you and Louie.  It breaks my heart.  Like Mother Mark says, it sounds like hell.  I know it's not easy right now and you should get some counseling.  And I know it's so easy to say but, well, I'm really hoping for some sun to shine your way real soon.

robert