3 goals, just 3 seemingly impossible goals

More visits from friends over the holidays. Our long-term friends give me the benefit of the doubt and want to have a conversation with me about where H is at. Those who see H regularly are very worried about him and see what I see. Those who don't are wondering WTF?

And so I am bringing some of them up to speed with my 3 goals and let's be realistic, he's dying…slowly. Yup, new meds…who knows how long. Been here before…death's doorstep and then a magic recovery. I will believe it when I see it.

My three goals are to do the best I can to ensure:

- His well being, so that he gets the medical and mental health care that he needs (as well as the practical things, like food and shelter)
-My well being, so that I can work and be emotionally more stable that I've been (maybe even find a way to enjoy life again)
-The well being of our relationship (I am rapidly giving up that there is any hope here at all and it breaks my heart)

I don't see how to solve the equation for all three goals here. Solving for one of these is hard enough. Right now, I can't seem to figure out how to address any of these.

In any case, it is just more of the same: more drama, more drama and I don't get a benefit from it. And it's all drama that gets in the way of me doing what I need to do so that my life works for me.

Issues about H consume my life (there is so much to do and so little payback), my emotional energy, and dare I say even my well being. My choices are to try to minimize what it costs me (in some way that I don't understand) while he is still here, get him placed (hope waning now), divorce him or him me, or just disappear, which seems remarkably appealing at this moment.

Regardless of how this plays out, I do know that I am done having this cost me so much, but I don't know what to do about that. I wish that I could just make it stop.

Hey, come take a look at this

A good friend of ours, M, came over for a visit and dinner tonight. She has known H and me since the early 80's. It was so wonderful to spend an evening with her.

H felt too ill to be up for very long and went to take a nap for a few hours.

M and I talked about where H is and what has been going on for the past few months. I assumed that H had told her what was going on, but she had no idea what was happening with the whole placement issue, his family's reaction, and my break from work. She did say that H had told her that he hadn't been feeling all that well recently (not news).

I really needed her support after being kicked (while down) by H's family, and, since I've known her for a long time, I trust her judgment. She and H had spent a fair amount of time together recently and she had stories about some odd behavior and some even odder delusions. She expressed a lot of concern about H's decline the past year or so. Yup, I see it too. I'm worried and sad too.

I was talking with her about H's family reactions to placement and all that, about how they think he is fine and able to live on his own. I was relieved to hear her say, "But he is dying, they just don't see it. It's just taking awhile and they don't see him reguarly and he tells them that he is OK, but we know he's not."

Yes. Thank you so much for your honesty and especially your courage, my friend.

I talked with her about my struggles to handle this with love for H and gather his family around him. But instead I get denial and guilt. So, I told her that instead of me worrying about his family anymore, I'm just going to focus on me and doing the right thing for H. They will either come around or not.

She had a great idea: since his family is unaware of how he really is doing all of the time, I should send out a weekly or so email that briefly outlines how he is doing. How much he's been sleeping, how he's functioning, and when necessary, lab results, any special events that happen.

I'm going to try this, but I have to hard sell this to myself as just trying to improve communication with his family…even tho' I'm still steamed at them. M's take is that after a few months of this email newsletter, their denial may begin to crack. Who knows.

I've written about forgiveness being essential…and here is a lesson for me too. I need to forgive them for their anger, guilt, and fear (I have these too) and help them see what is happening with H. And to get them to the table to talk about where H really is and how to be there for him as he makes this transition, whenever that happens.

Reframing this Christmas

My best wishes to all of you for a Happy Holiday Season and, for those of you who celebrate it, a Merry Christmas!

After having two months off of work now (!), I've realized that it is harder to not place H than to place him. Rather than a clean set of boundaries and rules…created by a clean break (sic)... it is all a swirling mush of gray.

He'll have to go somewhere at some point, but in the meantime I need to get my needs met elsewhere and somehow deal with my grief and other issues while he continues to believe that our relationship can get better.

Good idea or not, I wear my heart on my sleeve most of the time. I am just not a good actor. It is hard to know how to be genuine when doing that hurts the man you love.

Snap! Caught that guilt tripping?

The answer is to just love him and be genuine, kind, and speak your truth. Realize that he is a child in many ways, can't meet your needs anymore, and just can't understand what is happening. Try to hide what you need to do that will hurt him or that he has no need to know. Yet...holding back in this way does not feel right after 25 years with this man.

H has been back from a visit out of town for about 6 weeks now. He has since spent 4 of those weeks in bed, first with seizures and now significant fatigue as his viral load goes up as his current antiviral med effectiveness wanes (again).

While I don't mean to be cruel, what happens with him doesn't matter in many ways. I believe that he will get sicker and die sooner rather than later and my life will go on and I will be the one that has to make it all work for me. I just can't allow what is happening with him to bring me to my knees emotionally, physically, & psychologically again.

My focus has to be take care of me. Nice sentiment this time of year, no?

When one goes out, the others stay lit

Each year, I care less and less about days of note: Christmas, our anniversary, our birthdays, Valentine's Day. And while I understand that days like these are difficult for many, what is hardest is that I just don't feel like celebrating with H anymore. Why celebrate when you are so profoundly unhappy?

Yet, H wants to celebrate and uses guilt as a way to try to get me there too. Doesn't work. The MO is that if you don't agree with whatever they want, then the guilt comes out to push you there. "You don't want a tree? You've never liked Christmas, it's always a struggle to get you to do anything. "

Now that the seizures are under control and the Holidays are here…no, I really don't want to get a tree and I really don't care about Christmas. More of the same....

Bit by bit our relationship deteriorates and I'm more content than I like, just watching it float by. No kisses in the morning, no kisses going to bed. Another piece gone and then another. Over time, as our life together continues to shrink, only the love remains...for now. I am worried that we will end up hating one another if this goes on.

What the hell am I doing here?

H was crying in the kitchen this morning, "Why is my life this way? I hate my life."

Indeed.

Do you see what I see?

While H's family may not see what I see, in many ways, it doesn't really matter. They are just playing out a script that they have: it can't be H's health…our son/brother is not dying…it must be you, (a single man's name). They equate me trying to address "he needs more care (really), I need to focus on work, and our relationship is suffering" with divorce.

Ironic that they equate my efforts to help H and me as me wanting to divorce him. Such BS.

H was gone for a few weeks and had been home for about the same when the seizures started again.

Petit mal seizures this time; they got the grand mal seizures under control (finally) about a year or so ago, but he still has minor episodes. They start with just his hand, then his mouth…after a few days, he could not really use his hand, eat without drooling, or even walk down the hallway WITH HIS CANE without bouncing a few times off the walls. And each day he got more and more confused…seen this all before.

We've seen his neurologist, who says, "I don’t know what to do if upping his current meds don't work," in spite of him being one of the top guys in his field in this area. We'll talk with him again tomorrow.

Good news is that H's seizure episode seems to be winding down, but he sleeps even more now with double his regular neuro med dosages.

I find the irony delicious that after H's family told me "he's fine (sic)," H has had another unfortunate episode, which has rendered him unable to care for himself much the past few days (e.g., usually he can dress himself, but I've needed to help him this week). Likely, it will take another week or two for him to bounce back…even so, it seems that with each seizure episode, even "small" ones, he loses ground overall.

I must say that one of H's sisters has been very understanding and supportive. She is the only one of the nuclear family set that hasn't gone on the attack, questioning my judgment, experience, and motives.

The sad thing is that if H and his family don't support me in my efforts to address this situation (instead of denying it further), I may need to actually do a divorce just to get him the care he needs while also saving myself. So much for trying to improve our relationship for the time he has left.

Just one of those great self-fulfilling prophecies…then I really can be the bad guy for the conspiracy theorists.