Good news, bad news

For a year or so, Drs. have had a hard time controlling H's HIV viral load. His virus is resistant to all, literally ALL, the meds that were available last year. As a result, he went into a nose dive last Fall, the culmination of which was my ill-fated attempt at placement and a corresponding nose dive into burnout for me.

But in February of this year, new meds came out. And a few months later, his viral load is undetectable for the first time in 10 years. And his T cell count is the highest it's been during that time as well.

At the same time, he's taking what amounts to chemotherapy and it makes him feel sick a lot of the time. So, whether his viral load is up or it is down, he's just not able to participate that much.

It's happened many times, about every two years or so: his virus gains resistance to the meds he's on, his health takes a dive, we discuss hospice, etc. Then, new meds come out, they pull him back from the brink and for a year or so he's out of the woods. Then his virus develops resistance…rinse and repeat.

What's striking this time is that his dementia and delusions don't seem to be improving, even as his viral load drops, hence all the fretting about alien conspiracy theories.

More than his physical health, what has been hardest for me is the mental decline.

Accepting craziness

I've come to the conclusion that H's mental state is doing nothing but declining. And so I now think of him as crazy. It's one thing to have dementia, it's another to be "crazy." The more I've thought about this, the more freeing it is…this is a key part of my acceptance work to call it what it is.

Part of me is sad because I'm giving up hope that he'll ever get better, but he just won't. And as he sleeps more and more and becomes more and more delusional, I know that the end is in sight. What end, I don't know, but some end is in sight.

And so, the drama grinds on, but seeing his mental state decline so much recently is helping me accept the inevitable more easily and, perversely, gives me much hope for my future...as in, I will have one soon.

Conversations with H

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For almost half the time...

On Thursday, H & I celebrate our 25th anniversary. Wow. Even I say wow...and I was here the whole time.

While we will celebrate in some fashion...I don't feel celebratory, just tired...we still haven't settled on what we will do.

Of those 25 years, H has been sick to very sick - and officially disabled - since 1996...for almost half the time. And I have carried him all this time.

Usually, I'm just a fountain of words here, but today I have nothing left to say.

Are you strong enough to be my man?

As I've mentioned here before, one of the hardest aspects of H's illness is that he's just not there for me anymore. There as in emotionally there, able to support me as I watch him slowly fade out, watch him die slowly. He's in so much denial and dementia that he just thinks I'm overreacting and that everything is "fine," especially since the new anti-viral meds seem to be helping him (e.g., he's thinking better, he feels more energetic).

At one point (many years ago now), he was strong enough to be there for me, but cannot do that anymore as the support I need is about him and what is happening to him.

Yup, the meds are pulling him back from the brink again, but that doesn't change a lot for me…he's still got dementia, delusions, and poor health and mostly it just means (I'm sorry to say) that this whole thing drags out longer. I guess I should feel relief, but I don't.

But I find it hard to be there for him too. Last night, he was talking with me about how he's not sleeping well, how much his chest hurts (a known med side effect), that he feels nauseous, that his feet hurt, he's wobbly when he walks, he's very tired, and on and on and on. I told him that I'm sorry that he has so much to deal with and that he has gotten more than his fair share of health issues and that I wish it were different.

But I couldn't bring myself to hug him or tell him that I love him (even tho' I do) or that it will be all right….because deep down I know that it will never be all right. My truth is that it is NOT all right and it won't ever be again...it can't be for me, anyway.

And so, like he can't be there for me in a way that helps me, I can't be there for him in the way that I want to either. This is just one of the many reasons why placement made so much sense.

I wonder if I'm strong enough to be his man (for however long this takes).

Embrace the sorrow

I've been struggling with grief for a long time. You folks hear it here and get more than anyone with the exception of my shrink.

I experience the sadness as a pack of dogs chasing me down the hallway and I manage to close the door, keeping them out. But they claw and claw and don't go away. Maybe I open the door a crack and toss them a bone (sic), but that only buys a few seconds and then there they are, clawing again. My only choice is to try to keep that door closed or go out the window...but there isn't one.

Grief has been a longtime companion for me, even before H got so sick. (Long story here, but I will spare all of you why I've carried a big ole bag o' grief since childhood.) But once he got so sick, the intensity has predictably risen.

So, I've tried to ignore it, medicate it away in a variety of ways, placate it, embrace a variety of addictive behaviors, deny it, and just generally not face it. Needless to say, this hasn't been an entirely successful and has cost me dearly in many, many ways.

I've been reading a great site, urbanmonk.net, which, among other things, encourages us to face our fears, grief, and other negative emotions, thus depriving them of their power over us. Embrace it and it loses its power.

What to do? Just feel the grief when it comes; don't try to medicate it away. Easy enough to say, but hard, at least, for me to do. How do I prompt the feelings when it is safe to do so? I mean, I can't just burst into tears at work (although I have) and H can't deal with me crying anymore…he feels helpless, as helpless as I feel about his health issues. And I only see my shrink once a week.

But there are so many sad songs about loss. I'm such a sucker for a sad song. Two of my favorite sad ones are a Diana Krall Live in Paris version of "Maybe You'll be There" and "Missing" by Everything but the Girl.

So, I’m listening to "Missing" while H is in the shower and I'm getting all teary.

Just as the plaintiff chorus comes, "And I miss you…oh... like the deserts miss the rain," H comes out of the shower, naked, and I see his silhouette coming out of the bathroom at the end of the dark hallway. He's using his cane to navigate the doorway and hallway corners. Shrunken legs, big distended belly, sunken chest, bouncing off the door jam, almost not catching himself, almost falling.

Like the deserts miss the rain.

Just to get your attention

Last night, I was talking with H about what will happen on those nights when I'm travelling or have to work late. Both will be happening more and more as I change jobs (hopefully soon). Or even after a long day and I’m too tired to make the 30 minute meals I usually do.

Lots of options for 2 - 3 nights a week: have someone come in and cook, more frozen foods (bleh), easier meals (think spaghetti, canned things), etc. He doesn't like the latter two options.

H keeps going on about how he wants to help me, but I "push him away." Well, I'm nervous about him chopping with large knives and he can't really measure, so little help on the prep. He gets confused about the steps, so he can't make the food. I ask him to set the table and he's not certain how to do it sometimes.

This is why I have given him just two jobs at home: make certain the kitchen is clean so I can make dinner and feed the dogs at night so we can have dinner in peace. He struggles to do these two things and I often have to prompt him or do them myself.

"OK, if you want to help, have dinner ready for me when I get home a few nights a week, then, " I say, "surprise me."

"Well, I can go out to dinner when you travel," he says looking at the ground.

"OK, sure, but why can't you make a simple dinner? You make breakfast and lunch sometimes," I ask, pressing him.

Long, long pause.

"Because I don't have a brain anymore; dinner is too complicated." He's crying now.

"Oh honey, I'm sorry, I'm just trying to understand. OK, so it's just too hard…that helps a lot. I just wanted to make certain that I understood what was happening. Awhile ago, you told me that you wanted me to cook just to get my attention," I say. True, we had this conversation a few months ago.

He looked very confused, hurt, and said, "What? I said that? I never said that; that's not true."

"OK, honey. Dinner's ready."

Oh, what a busy day I've had, redeux

I've been thinking a lot about my last post, my own inner turmoil, and what I can do to make it better for myself.

I get all resentful on H when I have to make up all the slack. Well, my expectation is that he help me, that he is able to do his part. But he can't. Simple, change my expectation that he can help. If I don’t' expect him to, I won't be disappointed. But I'm still struggling to erase 25 years of expectations that I have for him participating in this life with me.

So while H's busy day doesn't compare to mine, the fact is that I'm not dying of AIDS and he is. So, for him, it is a very, very busy day that is hard for him to do because he feels so sick so much of the time.

And yes, there is the burden part: the fact that I have to do certain things, such as audit his meds, that I wouldn't have to do if he weren't so sick. And that I see him so sick and that takes a toll on me.

What it really nets out to is that the resentment and other things that I do and feel are just masking my sorrow. The sadness that comes from watching someone you love slip and slip and slip. And then when you think it can't slip anymore, it does (and then some).

The hardest part about the sorrow is that I don't feel that I can share it with the one I most need to: that being H. (Oh, and for how bloody long I've been carrying this sorrow.) When I've been most upset and tried to share my grief with H, he drops into one of his family's scripts (the same ones that they used on me last Fall when I was trying to place H):

Criticize: you must be doing something wrong, you're thinking about it the wrong way
Minimize: well at least I'm not in the hospital right now, I can help more than you let me
Discount: I'm not dying - so there's no reason to be sad
Guilt: what am I supposed to do about it, why can't you deal with it?

What I really, really want to hear is: "I'm sorry that this is so hard for you" and to cry with me. That's it. Some sympathy would go a long, long way. Empathy would be better, but unlikely.

See, there I go again: needing something from him. How do you "unneed" someone?

Oh, what a busy day I've had

Work continues to ramp up for me and I'm home less and less these days. OK with me as I appreciate the er ah, stimulation. But of course it is stressful for H for me to be gone so much.

As a result, he's had to do more himself. Now, I don't mean stuff like paint the house, but stuff like take care of medication refills, getting to Dr. appointments on his own, dealing with workers at our house as they wrap up some projects, and maybe the occasional trip to the store or McDonald's.

So I get home after a 10 - 12 hour day and I'm pooped. It's dinner time and I am the cook, so I start on that.

"How's your day?" H asks.
"Busy, filled with fire drills. It was fine, tho'. Just work."
"Mine was really busy: got up, made breakfast…(long pause as something loud came on the TV)…set up my pills...took my pills, played with the dog…have you treated them for fleas yet?... went to the pharmacy…(another long pause…30 seconds or so)...felt sick, watched TV, and took a nap, made a sandwich, then another nap…." H says.
"Wow that's a lot," I say.

And it is, for him. But for me…that sounds like a day off, especially the nap parts.

I struggle with my feelings of resentment driven by feeling overwhelmed at having to take care of the entire household and work - and with my grief at losing my partner bit by bit.

The hardest part is that there is no way that he can understand just how difficult it is for me, what I have to do everyday, or how much he continues to slip and I have to pick up any slack.

So, he can't understand and his family is cluelessly in denial. Sheesh.

Realistically, what can he do about it anyway?

Wish I had something insightful to say about it, but it just keeps droning on - grinding on me - and I don't see any relief here. No wonder I got so burned out last Fall. Now, I can get all self-help here and say that it's how I saw it, not what it is. But I know that's not true.

Take a deep breath

I'm busily working away these days. Got me a new manager (4th one in a year) who is new to the company. I have not yet jumped to another group…waiting for the machine to move according to the rhythms of glacial time.

H sleeps and sleeps - lots of issues with his sleep apnea . Now, Drs. tell us that his apnea is not simple (of course), but is central nervous system apnea. Basically, it means that his brain isn't telling his body to breath. Most likely caused by a combination of the narcotics that he takes for pain and the damage to his nervous system by the virus and PML.

So, H has a new sleep apnea machine that is more like a ventilator than not. It not only pushes air into his lungs, it helps him exhale it too. Sigh. Noisy thing it is, too.

Now, I've noticed him not breathing on his own more and more while awake…almost like he is holding his breath and he's not aware of it, he says. But after a moment or two, he gasps and takes a breath in.

If it isn't one thing….

In the first week or so my new manager was here, I was talking with her about leaving the group. Needless to say, I'm ready to go to another job and my current management is just as ready to see me go.

But I was taken aback by two questions from my new manager about H: 1) how old is he? 2) and what's wrong with him? I was very uncomfortable with this line of questioning, as you can imagine.

Now, I've had a variety of managers in the past 3+ years since H got much sicker, but I've never had anyone ask me those questions. They've asked me how is it going, how's H (for those who know his name). Generally, tho', I don’t get asked by management, which is fine by me.

Within the next week, my manager was standing in the doorway of my office. She asked me loudly about "that short, Asian woman" she saw me with. My office is a megaphone and so the whole hallway heard.

Needless to say, I've contacted the HR department.

Living your life for me

Wow, so much has happened since I've posted last. I'm happily back to working full time and work is going well for the first time in a long time. My emotional state is better, although I've always got this resignation, this resentment, burbling just below my surface.

H is doing well, although still sleeping a lot; his new anti-viral meds seem to be helping him. He's been on the new meds now for a month or so and I can already see changes in him. He's thinking more clearly and able to help with projects going on at the house. Conversations are mostly less bizarre…although he does have his moments.

What was most striking was a Valentine's Day card that I got from him. Not the card itself, but the thank you he wrote inside, "Thank You for Living Your Life for Me." I was struck by the thank you and the (seeming) acknowledgement of what it costs me.

Maybe I underestimate his understanding sometimes. Maybe I just don't believe it sometimes.

Nonetheless, I'll take the thank you and think about whether it's really true.

Living with courage

Back at work less than a week now. As I've written before, I just let H and all his issues become too central to my life and it cost me dearly.

What I've realized now is that I've just been waiting for him to die in order for me to start thinking about and acting on creating that new life, post H, for myself. This in spite of the fact that he's dying now, albeit slowly.

One example of this is that I've shied away from management roles ever since H got sick, but even more so in the past 3 - 5 years or so. Why? Fear. Fear that I won't be able to handle the job because of issues with H and all that. One side effect of this is that I resent H for "holding me back," which isn't fair as it has been me all along.

But I've always loved managing teams and, if I do say so myself, I've been successful at it. And I've done it off and on for 20 years.

And so upon my return (and much to my surprise), I'm being recruited for a management job (which I WILL take) in the team that I talked with last year.

Well, the web is a wonderful and evil place and I found a great article about making the choice to make choices as though you have no fear. (This whole site is awesome, BTW.)

As part of my getting ready for live after H, I have to have courage (taking action in spite of fear) and pursue things that are a scary. Whatever happens, I know that I can deal with it.

After spending so much time with H the past few months (and years), I've just down shifted to meet his level and have been kinda stuck there.

Now that I'm back at work and not burned out eanymore, wow…people here are really smart and I've missed that. I find it incredibly energizing, exciting, and yes, scary.

The sad thing about all this is as I re-engage and do my best to go after whole heartedly what I want, it is much clearer just how far H is lagging. Happily, going for what I want makes it easier for me to keep H's issues in their proper place in my life.

I have this picture in my head of me accelerating into my life ahead and him decelerating, stumbling and falling. While I know that he is excited for me and my new position, he's worried that I won't be around so much anymore. And it's even more obvious to both of us just how far behind he is falling.

The challenge is not just to act with courage, but to also act with compassion since he can't keep up anymore.

It's going to be OK

I return to work next week after being on Family Medical Leave for the past 3 months. I'm looking forward to the intellectual stimulation and challenges.

My batteries are recharged at this point, but I'm anxious about burning out again given H's chronic health issues, his dementia and the craziness that it brings, and my own stamina. The sad thing is that I'll likely need to go on leave again at some point in the future, soon I think.

H sleeps a lot these days and I can't imagine what it would be like to only see the world in a few hours a day and to be stuck at home most of the time. He's been sleeping more (!) recently and is literally only up 2 - 3 hours a day from being up 4 - 6 hours a day. He notices it…that's a big percentage change for him.

I've become more concerned about his dementia as I've spent more time with him the last few months. Some very strange conversations…such as the neighbor is scheming to create an issue with our joint property line (unlikely), but that it's a big deal and needs to be urgently addressed (not so much). Then he suddenly tells me that there isn't an issue at all, that he made it up…he thinks...but maybe there's and issue...I've never trusted (our neighbor) anyway.

OK, time to put on my patience hat. But I didn't...I'm still tyring to find it.

While I won't repeat what I said, I did tell him two things: I'm having a hard time believing what he says anymore and that I'll take care of the whatever issue may come up and that it will be OK.

"Do you trust me to take care of it?" "Yes."

In retrospect, he was genuinely afraid that there would be a problem. I could see it in his face. There was so much drama about the issue…he's always been kinda high drama, but there's little modulation on it now. It comes across as abject terror.

Only when I told him that I will take care of it and it will be OK did he calm down. He so needs me to help him, especially with his worries. How sad that my once so very brave man is now so afraid.

I need to tell myself that it's going to be OK more as well. Well, it's not OK that he is going to die, but it will be OK for me after he is gone.

But for now, the only thing that I can change is how I react to what is happening.

Driving blind

It started with a talk about his depression.

He told me that I am in his way. And I told him that he is in mine. Sigh.

Not only is in he in my way, but I don't even know what my way is. (I didn't tell him this.)

While life may be a highway that you travel blind, there's a giant truck in front of me, blocking my view (of (likely) all the brake lights ahead).

I think that I have focused too much on him and his issues. Over 60% of placements happen because of caregiver exhaustion. Yup, I was there. And I was there because his issues and care had taken center stage in my life. It's hard because I care deeply, but that doesn't mean I have to make his issues so large in my life. Hmmmm, I believe I lost me my perspective and it cost me dearly.

I told him that I know that he would make it better if he could. Just like I would.

In any case, the cost to me is so very high. And it's all drama that gets in the way of me doing what I need to do, sucks the life out of me.

I need to start my work now to get him into his proper place (sic)…but he gets all the attention and I need to change that. All of my energy has been going to him, my horror and grief over what I'm seeing is draining me. And if I'm not careful, I'll find him dead and me not having laid the groundwork to go on afterwards.

Now, if I could just see around that truck.... In the meantime, how about listening to the radio and making the best use of the time I have.

Horoscope

I believe at least some in astrology, especially when I see a horoscope like this today:

Tuesday, January 1, 2008

"You may think that your opportunity has passed, but this is just a trick that the cosmos is playing on you now. You have entered into a time warp, so don't think that your chance is over. Let your frustrations dissipate, for you'll have another shot at what you want in the months ahead. "

I feel so much better now.

Happy new year!

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.

And now, marriage counselling

While I'm pretty well-rested at this point, I'm awfully puzzled and annoyed.

Had a long conversation with H's mom yesterday about what is happening here. But, they haven't seen any evidence of his dementia worsening, she tells me, other than he's a bit slow. Now, she's been there all of one day and H has only been at his sister's for two weeks now. Apparently, he's cooking his own meals, but "he does sleep a lot."

I explained how when I've raised placement with H before that he gets all energetic, cleans and polishes, but that this isn't sustainable and that he will poop out and crash after awhile.

Suffice to say that there is a difference between what they've seen and what I've seen. And what is that difference attributable to?

Simple: H is afraid.

She did use the divorce word again and once again I asked her not to use it because it isn't helpful. And it isn't true, besides. How is it that I struggle do this anymore is divorce?

She suggested marriage counseling. We did that 5 years ago, I say. The net was that yup, it's a hard situation and that what love we have for one another is slowly being destroyed by circumstance. Advice at that time was to get out before you end up hating one another.

We'll see how it goes when H gets back this afternoon.

Sheesh….I am so tired of having a drama about my sick partner (again). I so enjoyed the brief respite that I had.

Guilt song trilogy

Low burn

H is coming home in a few days, after spending over two weeks at his sister's house out of state.

I've been sorta beginning to feel fondness for H the past few days…like "Yea, it would be nice to see him." Or even a fleeting, "I wish H were here to share this moment with me," or two.

The weight of my anger and resentment is much lower right now. And so I notice what love that I have for him more.

Before he left, I was so angry that I rarely felt love for him, just obligation and resentment. I am worried that the anger will come raging back when H returns. Without any change, it will.

I am not trying to steal from you

I was just talking with H a few minutes ago. He's asking me if he should find a place near his sister's out of state, "cuz I'm not ready for a hospice or for assisted living."

"Dr. says you are," I say.

"That's not what he told me. ..that was true a long awhile ago. But now you just want to get me out of the house, so that you can get it," he says.

I try to beg off of the topic until he gets home. I tell him that I still think that (place) is the right solution, or something like it because there are big issues here at home. That this isn't sustainable for me anymore. And that everyone seems to have their opinions.

"Then it is over," he says. "You said that this was for better or for worse. If I move down here, then it is divorce…. The amount of care you seem to think I need…well, that's ridiculous. You just want the house."

I object to the word ridiculous.

I beg off, tell him I love him, and say goodbye.

When he gets back, I will try to see what H and I can work out. Something has to change here…if he is doing so well, can he step up?

The bitter aftertaste of denial

I'm getting a sense that the family is minimizing H's disability and gathering the wagons…looking for a place for him to live away from our home and me. I can just hear them cackle about how good he is doing. In some ways, I can't blame them…he's not dying in front of them, after all.

And I know that H will do the best show that he can while he's on his visit. And I will be the bad guy in all of this, even though I've been a "saint" for so many, many years (his family's word). Now, they may think that I'm cheating him…he does. Sigh.

I've been planning on arranging having his family talk with his Dr. and also talk with my shrink. And to get a dementia baseline test done (essential). I guess that I feel a need to build the case…or, at least, smooth the waters?

Truth is, us continuing to live together is hard for me, but easier for everyone else. Living apart is easier for me, but harder for everyone else.

Why is everyone so certain that he doesn't need to go to a facility, that he can live on his own? I have seen little evidence that he can live on his own in the last 3+ years. Was he just being lazy? Why isn't he exhibiting those skills now?

Enjoy the silence

H has been gone for over a week now, although he calls me at least once a day. I've been off work for over a week too now. I love being a hermit.

It's very strange to have this house to myself…this house that I've shared with H for so many years. I like the silence and the lack of responsibility. I like being able to sleep so long in the king size bed without having to share the covers or wear ear plugs so I don't hear his C-pap machine.

I've been disoriented by the lack of structure recently. I don’t have to be anywhere, I don't have to talk to anyone. There is nothing that really has to be done. If I were somewhere else, I'd call this a vacation.

I've talked with H just a few times since he's been gone, even tho' he's called several times a day (I am so thankful to whoever invented Caller ID ). He hasn't asked me any questions about how I'm doing or how I'm feeling, just what I'm doing.

"Where were you yesterday?," he asked me. "I called many times." "I must have been in the garden, outside," I say, knowing that he didn't call me yesterday.

H tells me that he's bored, "They all have to work. I miss all the things that I get to do at home."

I don't care that he misses home, but I don't tell him so.

There is odd silence in my head as well. I don't hear so much of my anger, my resentment driven by the things that H has said when I've told him that I can't deal anymore:

At least I'm not in the hospital right now.
You've always been depressed and stressed and angry.
I'm not that sick…you're just trying to get rid of me.

I don't blame him for his anger, but I'm tired of having my experience so discounted. The sad truth is that this is not H, not the man that I have known for so long, but the dementia talking through his own fear and denial.

This time apart and this time off of work is to help me catch my breath for the next run up the hill. I hope that this will be the last run I make up this hill.

Strange disconnections

Today, I had to come into the office to do a few last things before I’m off for the next 3 months. It's very strange being here, knowing that I won't be coming in for awhile.

On one hand, I'm glad that I'm getting the break. On the other hand, I've been experiencing some profound sadness today. It's not just about work, I know that. But I've been denying for long enough that somehow I can still do the work and soldier on while also caring for H during his decline. And so, taking leave from work is another physical manifestation of how hard it is for me to be able to care for H over the years.

I talked with H on the phone and he's very unhappy being at his sister's: "It's a very full house, it's too hot/cold here, I don’t feel well, I miss you, I miss being a t home."

All I could do is tell him that it's only for a short while and that I miss him too. Well, what I miss is my memory of him. I don't miss the care that I have to provide, the responsibility that I've assumed, or his incessant questions first thing every morning.

Now, off to home for a nap and maybe Oprah.

Out the door

H left with his sister to go to the airport about a half an hour ago. H has a fair amount of anxiety about going, I can tell. A trip is stressful for him anyway, even without the drama going on. He almost forgot his carry on, which is nearly full with his medications for the next 2 - 3 weeks (really). He wants a label on it, "Carry On." He tries to use the little electronic label maker we have, but is too flustered to concentrate and type in the letters. I make the label and put it on the suitcase for him.

I have some anxiety about him, for some reason, not getting on the plane and me having to go fetch him from the airport. This happened about 10 years ago…he got confused, went to the wrong gate, took a nap and missed his flight. Even then, he was suffering from dementia, obviously. I so rarely get a break that it feels very surreal to have him gone and my irrational fear is that he doesn't go for some reason and I get no break.

To his credit, H packed all of his stuff and got himself ready for the trip. I helped a bit, on request, but he was very organized…if a bit anxious while packing. I think that he's worried about travelling, where I am emotionally right now (he also knows I'm on leave now), and what is going to happen…and who knows what else. I could see it in his face when I kissed him goodbye in the driveway. I smiled and told him I love him.

His sister was so very, very calm and pleasant this morning…good for both H and me. Now, she has kids and is used to having to get a family and their stuff from point a to point b, so one person should be easy. The difference between H and the kids is that she knows what each of the kids is capable of doing on their own. She doesn't know where H is...I don't think that she really believed that she should go to the gate with him, but I told her several times to make certain that he gets on the plane.

Today, I'm off work and am enjoying my second cup of coffee in a quiet house (except for the dishwasher humming in the kitchen). Not certain just what I'll do all day, but let's see what happens.

I do know that I won't be able to begin to relax until I get the call that he has arrived at his destination.

Shades of gray

It's pretty peaceful around here right now. Plans have been made for H to visit his sister in another state and his family had arranged what I would term "shuttle care," living in 4 different places over a 3 month period. A few weeks here, a few weeks there, etc.

They are panicking due to H's fears and especially their own. And, they are trying to help in the only way that they know how.

Now, I've done a fair amount of business travel and this schedule is tough even for a healthy guy like me. Coupled with they don't know that so much travel and change is very, very hard for H. I don't see how this would work for very long.

What's ironic here is that they are creating a sort of divorce, where they take H away for so much of the time. They don't seem to understand that I want H to go to (place) because then I can see him regularly, he gets the care he needs, and I can focus on work.

With H at (place), we can hopefully continue the best parts of our relationship without his health and care needs or my exhaustion getting in the way. I wish that they could see that I am acting out of love and with H at (place), we have the best chance of experiencing our love again

But what about them…

I was talking with H this morning over a late breakfast. He was telling me that he's been talking with his family about "arrangements." Something along the lines of 3 weeks at one sister's house, back home with some weekends with his local sister, then off to his parents for another 3 weeks or so.

I know that travelling is hard for him; being away from home is hard for him. But he isn't talking about that.

What he's telling me is that "mom and dad have their own issues…dad pretty much has to care for mom these days…and I would just be adding to that." "And (out of state sister), the last time I was there, the kids had issues because of (this or that) reason and I can't get my own bathroom there and you know how I plug the toilet sometimes." "And (local) sister, she has a full house and how can she have me there so much? She's got kids, pets, there's no privacy."

I don’t say anything other than, "Well, yes, they all have their own lives. Dad has made his own bed because he allows his sick wife to run his life. At least he's retired."

Not a surprise, but nothing about what I need in all this.

Can you tell I'm just a bit angry?

Paused, but not forgotten

Really, I am trying to keep posts shorter, but am failing right now.

I've been thinking and thinking and having a few brief conversations with H's family. There seems to be this misunderstanding that if I get a break in November and his local sister "takes" him 1 or 2 weekends a month that all will be happy for moi. Errrrrrr, no.

How could they really understand?

I understand that they WANT to see it this way as this makes it easier for them to deny what is happening to their brother. And to assuage their guilt.

But, I got the application in the mail today for (place) and I've called them to let them know that there will be a delay…a pause in the placement.

Maybe after H is with his sister out of state for a few weeks, they'll see how he's declined. Maybe they won't be able to see it. I don't know. My hope is that they do; if they don't, it's just denial IMHO.

I've decided that I also just need to get out of the middle. And at some level, I don't care if his family agrees with me or not; I'd like them to and to be supportive, but, it's not necessary. Just like, at some level, I can't expect H to agree with me.

While H is away, I'll get calls with his family and doctor set up. I'll also get his local sister to come to his doctor's office with me and talk with him. Heck, why not have them come to my psych appointments?

I'll just connect them directly to the experts and the family can argue with them and try their guilt tripping.

It is easier for his family to blame me than it is to look at how H has declined. I understand.

Then again, I keep coming home to a clean house, fed & exercised pets, and the evidence that he's eaten during food that he has prepared during the day. He is trying hard to show that he's not as impaired as I think he is…and as his doctor thinks he is.

On the latter front, I will schedule a dementia evaluation with a local expert whose number I just got today. Let's add more "proof" to the pudding, shall we?

This beautiful, sunny Fall morning H and I were in the hot tub. I told him that I was filing for Family Leave today and that it meant no pay for part of the time. He said, "Will you sell your car?" He is totally obsessed with me selling my car for some reason. Guess he thinks that all this is just a money problem.

It's easier to think that there's a money problem than to face what is really happening…that I'm burned out and can't cope anymore.

Oh, I submitted the formal paperwork for Leave this morning and spent the rest of the day feeling lighter and (formally) ignoring my job.

Now that I have your attention...

After a stormy late last week and weekend, it's calming down again.

So, now the family is rallied and taking H off my hands for awhile. I got scolded for acting without checking with them first, but, hey, they don't participate much anyway. The local sister is so guilt-ridden that she tells me that she's embarrassed to talk with me.

Yesterday, H went to his sister's in town for Sunday afternoon so I could "have a break." I slept the whole afternoon. I am so tired I can hardly focus at work today.

H is leaving for his other sister's place out of town in a week or so for 2 - 3 weeks.

I am still planning on filing for Family Medical Leave as I am so exhausted, I can hardly get out of bed. I feel that there is some risk to my career in doing this, but hey, I'm already in tepid-to-hot water, and FML is government-protected.

I DO know that if I stay and work, I won't be doing any better work than I have been doing and will likely do worse: my ability to concentrate is getting worse, my motivation about the work is non-existent, and my attitude continues to decline.

Hopefully, then, I'll be able to have some time off from work at the same time H is not at home. Not certain just what I'll be doing with all that time, but I likely will be sleeping a lot.

Clearly, his family is feeling some guilt and trying to hook me. I'm not letting them….

"You can't just send him away to die!" they said.

"He is dying anyway, you just don't see it. I see it every day."

"I just wish that he wasn't so terrified," his sister says.

"Me too. It's hard to see him so afraid."

They have heaped the guilt on "there's got to be an alternative to taking him away from his home and losing his independence," "when you marry someone, this is what it means (so it is divorce, then)," and "I would never do that to my husband."

To all that I said, "Stop talking divorce…not only is it not true, but it's not helpful. Look, I'm not the bad guy just because I can't cope anymore. Everyone is telling me what I should or should not be doing and feeling, but no one has been walking in my moccasins for 10 years."

While I want to be angry with them, I really don't have sufficient energy for that right now…conserve the energy for what matters.

All that I care about right now is 1) get H out of the house, even if just for a few weeks , to clear my head and rest (check) and 2) get a break from work (file tomorrow).

I haven't given up on placement for H, just a bit of a pause in the program.

Uh oh...

So, just got off the phone with H's sister and dad. Apparently, the whole family is in an uproar because I've "decided to send him off to die at a facility that is a 'cemetery'. People die there," they said. "Yes, they do die there. It's a hospice and nursing facility."

They are also upset because I have not taken some steps they wanted me to take some time ago to "reduce my burden." Translated: bring in some care from outside. I keep coming back to how this won't help me, but "if you had done that in the past, you might not be in this situation." "That may be true, but here is where I am," I say.

H is terrified they say. He "is still cogent enough to know that he's being sent off to die, that you're trying to get rid of him." And everyone is crying about this.

Yup, me too.

Sigh. I told them that I'm willing to consider other options, but I'm not certain what they are.

When I talked with them earlier, they weren't happy with my decision, but supported it. Now...guess it's sinking in a bit more and, of course, they don't want H to be terrified (neither do I), but he is very afraid and has talked with them all. I would be too.

And they chew on me for making a unilateral decision and presenting is as a fait accompi.

OK, so I walk through all this with them. How conflicted I am, how desparate I am, how this is bad for my health & his, how I just can't do this anymore, I'm at risk of getting fired, etc. Fine, you all recognize that I need help, so help me...I've been carrying this for 10 years.

"But you promised that he wouldn't go until he wasn't aware of where he is and that is what marriage is about."

"I'm sorry that I can't keep that promise. I shouldn't be making a promise to someone when they're crying, " I say.

Sadly, I agreed to put my arrangement on hold pending: looking at other places besides the "cemetery" (sic), letting H move into the other room (why this helps I don't know), and have a "family conference" about what we're going to do.

Funny, they never asked for a family conference before about him. Guilt raises its ugly head, no?

Coming home to a clean house

Must keep entries shorter….

Got home from work yesterday and found a very, very clean house. As in, I didn't know we still had a cleaning service. Not a service, of course, but H showing me how he can contribute.

I appreciate the help, as always, and tell him so. I also tell him that he doesn't have to do this for me to love him. I also tell him that this has happened before: I talk with him about going to (place) and for the next few days, he's all a whirlwind of activity. I predict that this his activity will wind down shortly, as it has in the past.

Very strange, day before yesterday, H didn't know what to do in the kitchen. Now the house is spotless (no telling how long it took for him to clean it up).

So, to briefly review the past week (whew!):

- Talked with his doctor and he agreed that H needs to go to (place) and will sign a leave authorization for me when the time comes.
- I talked with (place) and have the application in process (will mail today, hopefully)
- I talked with H about what is happening
- I talked with his mom and sisters about what is happening (no one is happy about this, of course, but they support my decision)
- I'm investigating alternatives to (place) as due diligence

And dreams: on a roller coaster and I hear a voice behind me, "This is where it's really scary." And then freefall, stomach in your mouth, and scary screaming and lots of joyous laughter.

My emotions are all over the map: Shell shocked, excited, guilty, sad, upset, elated, anxious, worried, upbeat, grief-striken at times, confident, tired, compassion. In some ways, I feel like a kid waiting for Christmas morning, except I've never felt guilty about being excited about Christmas.

Not backing off

I'm being as loving as I know how to be and absolutely holding my ground.

Overtime, H's acceptance is growing, but as you can imagine, he is very worried and sad about leaving his home of many, many years. He has a hard time adapting to a small change in schedule, let alone a move like this.

I am sad for both of us and afraid for him as well. But I do know it is what I must do, for both of us.

Yesterday, while we were talking about him leaving, he blurted out, "You can sell your car for someone to come in and take care of me."

"No, that isn't going to happen." I repeat, "It's not about the chores."
 
"What is it then?"
 
I go through the same messages again and I always end with:

"It's not that I want you out of my life," I say for the umpteenth time.

"You don't?" he asks with all the sincerity of someone who has never heard me say this before.

"No, I don't." I explain to him how I'll come visit, he can come home on some weekends, and that one big part of this is to help our relationship.

"Oh."

Rinse and repeat.

Yesterday, H was all chipper and eager to help me with dinner.

Later, he's helping me in the kitchen but doesn't know what to do. He needs me to tell him exactly what to do along the way: set the table (I have to tell him what to get), put water on the table, feed the cats, and cut the ears of corn up so that I can cook them. Oh, and make sure you get a small piece of corn on the cob for the dog (strange and messy, but true).

Later, there are three pieces of corn on the cob on the counter. "Ok, now you can cook corn for Frank (name changed to protect my canine) like you always do."

"What?" He's looking very confused right now. "But we don't cook the corn for Frank in there…." He's pointing to the pan of water.

"Right," I say. "One is for Frank and goes into the microwave; the others are for us and I'll cook those in the pan."

Only when I was that explicit did he knew what to do.

My poor sweetheart.

Freefall

The day after I talked with H's doctor I told H too.
 
I didn't want it to come out this way, but I blurted it out as he was ragging on me about stuff that doesn't matter anymore.
 
Anger, crying, bargaining, denial…he's been all over the map. I'm doing OK right now…a bit or more sad, but also emboldened. And afraid and excited.
 
He's screaming, "I'm not sick enough. I'm only 48…I can't go to a nursing home. You can't make me leave. We'll get someone to come in and help, so you don't have to make dinner…they can make dinner for you too. You promised me that you'd never make me leave my home. I've see the people at (place)…I'm not one of them!"
 
I don't say much…I just let him vent. I've already decided what has to happen. I need to get away and he needs to get care. Simply really.
 
This went on for the better part of a Saturday until around dinner time I said, "Honey, I don't want to talk about this anymore."
 
Sunday…

More crying. He's on the phone with his sister. I haven't told his family yet as I wanted to tell H first out of respect…but that backfired.

He keeps coming back to bringing someone into the house, but I’m not budging. Then he says he needs time to think, it's a surprise. Then, "I'll do anything to stay."
 
The clarity is amazing. I look at H directly in the eye with my hand over my heart and I tell him that I love him and that no matter what he says, I am convinced that the right thing is for us to not live together anymore. I've cared for him for 10 years and I can't do it anymore.
 
"You want a divorce," he says. I've heard this one before.
 
"That's how you frame it," I say as flatly as I can.
 
"You told me that you'd never make me leave my home."
 
"I'm sorry. I just can't do this anymore."
 
"When I leave, you'll have younger boyfriends here and I don't want that," he says.
 
"You have no idea what will happen when you're not here. Maybe I'll have some peace & quiet for the first time in 10 years, " I say. "I just don't want the responsibility anymore. I've done this for 10 years and that's enough."

I continue, "We're just poisoning what's left of our love. You need more care. I need to focus on work. Finally, there is nothing that you can say that will convince me that anything other than us not living together is the right thing for both of us. I've struggled with this for 3 plus years and I've thought about this a lot. Now, we can negotiate the terms, but it is the right thing to happen. I am absolutely convinced."
 
We spend the evening with me holding him on the couch watching TV, both of us crying from time to time.

Stepping off the edge

I met with H's doctor a few hours ago to discuss how I can't care for H anymore. It felt surreal to go to H's doctor's office without H.

"I agree," Dr. said, "I was there a year ago. He's pretty demented and we need to make certain he doesn't hurt himself."

"Thank you," I said. "I just can't do it anymore. My health is suffering, my job performance is bad, I'm an emotional wreck most of the time."

He said, "I've seen this with my other patients, straight, gay, whatever, doesn't matter. Most spouses can only last a few years once someone starts slipping into dementia. You go from partner to sort of a guardian and it's exhausting and stressful to watch someone you love decline…not to mention that the sick person needs more care than the partner can provide."

"Yea, and what's bizarre is that H still thinks that I am his partner…."

"He has no idea anymore," Dr. said.

"When H and I have talked about him going to awhile ago, he said, 'You just want to divorce me.' No, I’m doing this because I love him," I say with tears in my eyes.

"Of course you do…I've known you guys for over 6 years now and I know that. What did you have in mind?"

I explained that I was looking to get H into a facility that specializes in HIV & dementia. But I was worried because H keeps telling me that he's not sick enough.

"He is though," Dr. said. "Usually, people who are so demented don't think anything is wrong with them."

I also asked Dr. about supporting me taking a leave from work (he has to sign paperwork). "Yes, of course."

So, I have talked with the place to get the application process restarted (from 2005). Once some firmer dates are in place (they think maybe he can be admitted in 2 - 3 weeks!), I'll file the formal request for family leave, call his family as well, and (the hard one) talk with H about what is going to happen.

I spent the rest of the day walking through my favorite park to enjoy the Fall sunshine and leaf colors.

Guess my best wasn't good enough

One of the not-surprising impacts that H's illness has had on me the past few years is that my ability to work is greatly reduced. Not from the time perspective, but of having focus, energy, motivation, productivity, initiative, & creativity...the merit badges in my company.

How could his illness not affect my emotional state? And how could my emotional state not affect my work (or my ability to just do work)?

It is so frustrating to me that I am so hindered by what is happening with H. I am performing so far below my abilities. The job that I’m in, which I should be able to just nail as it is one of the easier jobs that I've had in a long while, seems incredibly difficult for me.

It's not just depression. It's exhaustion too and a whole spinning, flaming ball of other strong emotions.

Regardless of the emotional state, my best at this point is not good enough for what the company expects from me (especially since I've done much harder things here prior). I just want to say, to scream from my desk, "I can do better…it's not because I'm lazy or clueless, it's because of this difficult personal issue that I have…which just drags on and on."

They have been more than accommodating and I'm running out of time here. The cool thing is that it will take awhile to fire me for performance (don't you love big companies?), so I have a bit of maneuvering room.

And so, I have two key goals for the remainder of this year (if I do nothing else):

- Not live with H anymore and get him into a facility where he can get the care he needs
- Get an extended (measured in months) break (take leave) from my job so I can rest and sort myself out

Given my mental and emotional state right now, doing well at work is not even on the long list of things I care about...but I DO care about it as a matter of pride, of identity, of reputation. I just don't have the energy to deliver and it's not the biggest fish I have to fry right now.

I will say, tho', that I will continue to blog as that is my 3rd goal for this year.

An upcoming appointment

On Friday this week, I have an appointment to talk with H's doctor (without H being there).

My plan is to talk with his doctor about how I just can't do this anymore…I just can't live with H anymore.

H said that he won't go until his doctor tells him. OK.

What goodwill and love that we have left is being poisoned. The situation is bad for our relationship and I don't want to get PO'd and then just kick H out of the house.

I believe that H needs more care than he gets or than he can admit to needing.

I need to focus on work. I am still in trouble here and don’t know if I can pull it out. I am not certain if I really care all that much anymore either way.

As long as we are living together, I can't help but be his caregiver and I am exhausted. Maybe it's just respite care that I need…but I doubt it. Well, maybe if I could find respite care for 6 months and then decide…ha!

In any case, I need a break from H and I need a break from work at the same time. But first things first….

I am worried that this will hurt his feelings, but I don't know what else to do. I'm typically an emotional wreck, my health is suffering, my work is suffering…life does not have to be like this. And so I have to change it because he cannot.

Do I have the strength to see this through (with thanks to Robert)? I think so…I’m going to make a run at it.

But when I step back from my anxiety and my worries about how H will see this, I feel like it is the right thing to do. And when I entertain the fantasy of him living somewhere else and me free from some of the responsibility (and yet still able to love him), I feel lighter and even, dare I say, optimistic about life again.

Why go?

Since we had the 4x per week conversation a day or so ago, home has been bleak. H is sleeping a lot and moping about the house, occasionally saying things like, "Well, maybe I'll go to Afghanistan and be a suicide bomber. That seems like a quick way to die."

While I want to say, "Oh, honey, you must be very upset to be talking about suicide. Let's get you to the doctor," I don't say anything.

I've been trying to get him to a Dr. about his depression for some time.

Now he is talking about suicide again…at what point do you intervene? (Now, I've already called his doctor.)

And at work, I've been getting email from H about how to deal with a spouse with depression, that it's not them, it's a disease and etc.

Work too seems rather meaningless…

It just seems like there is so much pressure right now that I just want to walk away from home and from work. Not just in the romantic "ride off into the sunset," but in the "I just don't want to deal with all this anymore. It costs too much and is not fulfilling at all. It just isn't worth it."

And it isn't depression on my part, I don't think.

It's more about what isn't working for me. Maybe it's just a time to shed the stuff that doesn't work anymore. It's about cutting losses.

Now, I know myself well enough that the drastic solution (leaving) is easier than waiting and waiting. Sometimes, tho', the drastic solution is not the right one long term; besides, H needs care and I can't just walk away from that.

"Why go home?" Eddie Vedder from Pearl Jam asks, plaintively. Why indeed?

Four times a week for all my men

Yesterday, I was home early from work and was paying bills while H watched Oprah. Dr. Oz, her medical guy, was talking about men's health issues.

Not much new there, but then: for a man's health, the optimum number of times a week for sex is four. Yup, four. (All the men in the audience are smiling, predictably.)

H says, "There. I told you so."

"What?"

"See, we should be having more sex," he says.

"Hmmmm…." I'm writing checks, juggling this month's bills.

He presses on and after a few moments of nagging, I say, "I wish that I was with someone that I WANTED to have sex with 4 times a week."

At this point, I have to state my truth or I will go crazy.

Now my gentle readers know that sex has been an issue for H and me since he got sick. He's not, er ah, functional anymore and it just makes me sad to see him look so sick. So, I have just given up on it and, for now, I'm OK with that. In fact, it's just upsets me to even try anymore.

He keeps pressing and talks about how his needs aren't getting met.

I'm trying not to go there again, but I say, "Honey, you aren't the only one that has needs that aren't getting met, sexual or otherwise, but you know, I just don't hassle you about that anymore…because I know you can't meet my needs."

"What needs?" he asks.

Here we go again. We have had this conversation at least a few times in the past month or so.

"I need a healthy, functional partner who can participate in my life with me. I have been caring for you for 11 years now and you sleep and feel sick most of the time. I have to do everything for you. At this point I am so tired, so burned out and depressed, it's all I can do to get my butt to work and when I leave work, it's all I can do to just not drive off into the sunset and not come home," I say.

Now, I don't tell him all the issues that I have…doesn't matter. He won't remember most of this tomorrow anyway.

"Honey, you're living in a fantasy that our relationship can be anything other than what it is as long as we are living together…we've talked about this many, many times," I continue. "I love you and care about you, but that part of our relationship is over for me."

"Well, that means I should leave then," he says.

"That's up to you."

"Then why am I here," he asks. "Why are you here?"

"Because I love you and want you to have a nice home in your last days."

"Thank you," he says softly, looking at the floor.

A few more back and forths about "maybe hypnosis would help" & "aren't you even willing to try anymore" & "don't you want to be helped?"

"No, I don't need to be helped, thank you," I say. "Drop it." Frankly, I don't feel like I need help. What I need is not something that he can provide.

A little while ago, H told me that unless we have sex he will commit suicide…that there is no reason for living for him. Now, I can appreciate his pain and I do agree that sex is important, but emotional blackmail doesn't work for me…it just makes me angry and confirms my desire, née my need, to get away from him.

A shorter run, then

A recent article stated that family caregivers of Alzheimer's sufferers are under so much stress that their role of caregiving actually shortens their lives by 4 - 8 years.

A friend shared this article with me and it was upsetting to say the least. Now, H doesn't have Alzheimer's, but his dementia is bad and is getting worse over time, and, his care needs are doing nothing but increasing. Minimally, his mental symptoms won't be getting any better.

I was upset and so I shared this article with H. His response was a flat, "I'm not surprised," and then he went back to reading his email. No, "I can see why you're upset, I’m sorry that this is so hard for you, I'd be afraid too…". Nada.

I'm still trying to learn not to expect support from H (part of my acceptance work), but how do you not automatically expect support from your spouse? When they expect you to provide support for them? How do you not share what you find out, experience, or feel?

While I can't claim that my life is being ruled by a crazy person (he is just sleeping more and more these days), I can now say with scientific certainty that my life is being shortened by living with a crazy person.

An upcoming anniversary

A few days ago, H said to me, "Our 25th anniversary is coming up early next year…how do you want to celebrate?"

"I don't know honey," I said.

After our conversation about our last anniversary, I really don't feel like celebrating anything.

When I thought of leaving you

Yesterday, each of us were sitting at our respective computers...backs to one another (small room). Quiet late afternoon in our office, two computer fans going.

H asks me, "Do you remember T ?"

"Yes."

"Do you realize that I almost left you for him?"

I say, "Uhhhh. No...well, yes. How many years ago was that?"

Silence.

"It's been more than 15 years now. Why would you bring it up now?" I ask.

Silence.

I continued, "Do you want to hear about all the times I thought about it, almost left you?"

Silence.

As though him leaving me would have been bad or vice versa.

It doesn't matter what we almost did, only what we actually did, which was to continue loving one another. But I know that we both have our regrets.

I still (Lord willing) will have some time on this Earth to address my regrets; he isn't certain (and neither am I) that he will have the chance.

Whining, whining, & whining

As I sit here thinking about what to write , I have to take myself to task a bit for whining in prior posts.

While I whine about how much I dislike my job, I have one that pays pretty well and provides the medical benefits on which H and I depend.

While I whine about having to do a lot for H, at least I am healthy enough to be able to do it.

While I whine about the toll that his illness takes on me (and him), it is also true that sickness is just a part of life and, of course, it is upsetting.

While I whine about just how long all this is taking (aka, that he is still alive), I do know that he is as unhappy as I am with this current situation.

I have resolved not to whine at home or to my friends about this anymore. So, y'all get it here.

But the other day, I was in a foul mood and H asks me, "What's wrong? You look dismayed, distressed...." I said, "I'm just not happy with my life right now. I hate my job and home is just depressing. When I'm here, all you do is sleep and I have to do everything from take care of the pets, to fixing the house, to paying bills, blah blah blah. It just isn't fair. Isn't there supposed to be more to life than this...?"

Since that conversation, it's pretty quiet around our house. H doesn't know what to do or say...neither do I. So, we just go on in the ways that we do.

I will say this, tho': I am glad that instead of whining, I told H the truth.

Waiting, waiting, & waiting

I've been in an odd state of transition for a long while now. Not really attached, not completely unattached, just floating and waiting.

About 3 years ago, H got very sick (again) and I was told he would die shortly. So, I got myself ready for this, as much as I think I could, and then he got better. And then he got worse. And then better. At one point, I was waiting for him to get much better, but that isn't happening, instead it is going the other way. So I am waiting for whatever may happen as I watch him slowly fade away. In many ways, I am on a drawn-out death vigil .

This is a tough wait as I have no idea what will happen when and how it will all play out. But, as a dear friend of mine has said, "Remember, it can always get worse," and I do believe that it will…it's just a question of in what way.

About 5 months ago, I interviewed for another job at the large company that I work for. The other group wants to hire me and I want to join their team, but there has been delays and so I wait and sit in a job I don't care about and has no future for me.

This one is easier as I can imagine the end, the transition into a new role and all that entails. This outcome will be very concrete and predictable, but has been in the air for a long time

And this leads me to the biggest wait for me: waiting to move on and have a life without the responsibility to care for someone so sick in addition to taking on the responsibilities for the things he can no longer do.

These are good lessons for me (I suppose); just hang out and see what happens. Enjoying being now, in the present with all its ambiguities, instead of looking forward into the future, which is just fantasy anyway. There are gifts in the here and now and if I'm looking ahead too much, I'll miss them.

But some days, I just want to push the river, to get to that next spot on the way…where I'm not waiting for anything or anyone.

Straight man from heaven

Loving a straight man, we've all done it. I did for many years before I came out and then I just focused on loving gay men. :)

For the past three years, I've been going to a massage therapist for injury treatment work due to a car wreck back then. The massage is the kind that sometimes leaves bruises and hurts more than you can imagine; but it helps more than I ever thought it would to keep this ole body working and working out.

Over time, we've established an intimate bond.

Physically, from the massage, but not from sex.

Emotionally from sharing our stories of his recent divorce & custody issues, my caregiving H, his spiritual path, and our world views. Oh, and we talk and joke about love & sex from a man's perspective. And we laugh and laugh while he works on me. Sometimes cry too.

He has been a gift to me. He introduced me to A Course in Miracles, and only because of that can I even think about forgiveness and love, let alone feel peace sometimes, rather than be mired in anger, fear, pain, and resentment.

It is amazing that the voice spoke through a straight man who causes me so much pain and also helps me so much!

When what I don't say hurts me

Like many guys my age, I've got my share of aches 'n' pains: lower back (especially) from years of sitting and a car wreck and other injuries, neck, & sometimes legs from standing. As a result, I'm pretty good about getting the care that I need: chiropractor, massage, exercise, stretching, etc. All the things that you should do, I guess.

I was whining to my massage therapist about how much my back has been bugging me recently, how I haven't been doing much (resting they call it!), and how I don't understand why it isn't getting better. I asked him if he thought that my back will get better..."Well, you've got this issue going on at home and all that you're holding in is going to cause pain in your body."

So, on top of the dismay at watching someone you love decline, my body is creaking and groaning from the stress.

I know that speaking my truth helps me feel better and holding that truth in makes it worse.

Problem is that I don't want to tell H my truth as I'm worried that it will hurt his feelings. So, it leaks out here and there. And I always feel better afterwards.

Is telling the truth the right thing when the other person probably can't understand it and, even it they could, is there anything that they could do to fix it?

It it worth it to tell the truth for only my sake, then?

Caregiving takes a village or maybe just a daddy

A few days ago, there was an article in the paper about a woman, 60, who had picked up her mother, who has Alzheimer's and is 92, from a care facility and then went to a local cemetery. Once there, apparently, the woman shot her mother, killing her, and then turned the gun on herself, killing herself.

The editorial writer opined about how the job of caregiver is too large for just one person, yet that is often what happens: one person, a spouse or a child, often ends up with primary care responsibilities, many of which they are not prepared for. But they do it because they love the person and sometimes the cost is too high.

At some point, the writer made the gut-wrenching decision of putting her father into a facility for those with dementia. She came to the realization that, in spite of heroic efforts on her part , she just couldn't handle the stress and difficulty of caring for her father as he slipped away.

If it takes a village to raise a child, it also takes a village to provide care for someone in decline, she argues, and speculates that maybe these womens' village wasn't large enough and the caregiving stress was just too great.

My village isn't large enough either. 99% of the time, I am the one who takes care of H. Just little ole me. His family will come to aid when there is a health crisis, but otherwise, they are "just glad that you take such good care of H." (Translation: we're happy we don't have to and don't know what we'd do if you weren't there.)

I used to joke that H didn't need a caregiver, he needs a staff. There's medication set up & dispensing, driving, Dr. appointments, food (and he's getting pickier and pickier in what he eats), help with chores, help with personal grooming, help with shopping, etc.…you get the idea. It is more than a one-person job, yet I continue to believe that I can soldier on.

Recently, H and I were having a tense discussion about sex (again). The last time we tried to have sex, I cried (how hot is that?) and couldn't get it up (grief is front and center for me lately)…neither could he. I've given up trying to be sexual with him.

So, we're sitting out on the deck, having this conversation and suddenly, he blurts out, "I'm going to get me a daddy that will give me sex and a Bentley convertible."

Relief & grief

When H is sleeping for much of the day, I get a break. And I get sad and lonely too.

When he's sleeping, I can pretty much do what I want. (Although he has an uncanny sense of timing and seems to often wake up just when I decide to watch one of those all-male movies.) And I don't get asked questions, don't get handed projects, and am not subject to the guilting that he unintentionally does so automatically these days.

And when he's sleeping, I can pretend, if only for a bit, that I am not a caregiver for my dying partner.

And when he's sleeping, I don't have to listen to the same few topics: his health worries, his anger at his parents for what they did/didn't do when he was a child, paranoid delusion that people are watching us for some unknown reason (because we must have done something), and, or course, what needs to get done around the house.

But lately when he's sleeping, I'm struggling to think of anything except how much I miss him. And I cry for a bit and it passes.

Then he gets up and I still miss him.

When he bitches me out

Projects around our house don't get done anymore. We had a major remodel about 3 years ago, but then H went into the hospital, had 6 or less months to live, and I lost all interest in doing anything around here. Except for the garden and the plants in the sunroom…my garden is my sanctuary.

H has been after me, quite vigorously, about "getting stuff around here done." After 3 or 4 conversations about the project (where I try to put it in the context of all that is going on, aka not a priority for moi), he starts it. Painting is what he loves. So he's started 2 painting projects recently. There is still blue tape on 3 walls and two windows and a wall is 2/3 rds a brand new, dark color, which I LOVE.

I am so not into working on our house…right now...when he is dying or at least very, very sick. I would love to do a project with him, but he can't stay out of bed for more than a few hours right now. How I miss our time together, getting stuff done around here.

I don't tell him all the reasons why I'm not into working on the house: time, energy, a problematic back, or, the real reason: how much I miss him that he is not there to do these things with. To accomplish a project, have some fun, and then have wild monkey sex. Oh, throw in some scotch and a bacon cheeseburger with fries and … well, our times together, working on our life together. Good times that I miss.

It is hard when he bitches me out for projects not getting done, like the painting. He's right: it desperately needs to get done. But it isn't about the house anymore. His distress is all about that HE can't do the projects anymore. It isn't about me. I can't possibly understand his anger at what is happening.

And I want to tell him why I don't have the heart or the motivation to have the work done. He can't even supervise a crew anymore…him, a master of conducting. And I won't point that out to him when he is worked up and angry at the world…if ever.

So, when he bitches me out, all I can do is agree that it needs to be done and tell him that I love him.

An exercise in reduction

Many days, H struggles to follow a TV show or a daily conversation. He will ask about the same thing over and over again with escalating anxiety about the topic. He offers only the same 4 or 5 topics for conversation and he stares into space for 10 minutes at a time. Most days, he sleeps most of the time.

Fewer and fewer days now, he can be articulate, funny, and charming...just a glipse.

I miss him, "like the deserts miss the rain." I so want for him to be there more than he is, but he is declining and there is less and less of him left.

While some deaths are sudden, I'm watching the process of H's life leaving him and him leaving us. I've written prior about our life together shrinking and he is falling behind more and more as I move forward just living my (rather dull) life.

For his sake and mine a big part of me will stay behind with him just to be with him, just to love him. He will be better for it.

And when I don't need anything from him anymore, I can just be with him. I will be able to forgive him for whatever it was whenever it happened or didn't and just love him unconditionally.

As he slips away and our life together recedes, all that is left is the love between us. And the way to the depth of that love is through forgiveness.

DABA doo doo

Denial, Anger, Bargaining, Acceptance

D: He's not that sick and I can deal with all this indefinitely.

A: I'm really pissed at him and life in general about this. It's the disease, not the man, I know, but still.

B: He'll recover enough to have a life together...I mean, I know that he's declining, but his T cells are so high. or...I can compensate for not having a healthy partner, somehow.

A: I shouldn't expect him to be anything that what he is today, which is less than I have had from him (ever), and is way less than I need and deserve.

A summer afternoon vignette

H is taking a long nap. Outside our bedroom door, I can't hear him breathing or the C-PAP machine making its usual rhythmic hissing.

I push the door open to listen and step in. He doesn't seem to be breathing and it's quiet. I lean towards him and stare. His right eye opens.

"Oh, hi," I giggle in surprise. "I didn't hear any breathing in here and thought I should check."

"I'm OK." Hissing.

"Sorry to bother you."

While I was cooking dinner later, I said, "Sorry for waking you, but I didn't hear any breathing and thought I should check."

"Thank you," H says. "But if you ever find that I'm not breathing, don't feel bad for me."

"I'll cry," I said.

"But only for awhile," he says, looking for his daily tray of up to 30 pills so that he can take his pain meds.

"I'm so tired of taking these pills and every six hours, I have to take pain meds OR ELSE. Six hours. Six hours. Every six hours I have to take meds."

Now he's crying. I'm holding him.

"And the rest of the meds make me so sick. God, I'm so tired....I'm going to go lie down now."

"OK, honey. Have a good nap. I love you."

Longings unfulfilled

Neither H nor I get our partner needs (insert long list here) met at home, or at all, for that matter.

I've whined here about how he isn't a partner for me anymore, really, and I'm finally getting better at cutting through all the denial I have about this. And the denial that somehow it will all be better…that he will get well enough…oh, that's bargaining, isn't it. But that isn't going to happen.

My longing makes me want to get away from him to fill my needs because I know that he can't -- ever again. Once "free," I can then focus on getting what I need: (insert long list here).

His longing makes him be after me to fulfill his needs. I am often in the position of rejecting him over and over again as 1) he doesn't remember what we talked about and 2) he's just relentless in feeling that he can "fix" either our relationship or me or both.

I can appreciate his hope (mine has been gone for awhile now) and I don't want to unnecessarily hurt him.

So, here we are, both longing for what we need and neither one of us able to give or get that anymore.

Connections missed

• Neighborhood garden party this weekend given my one of our local lesbians; she's been doing this party for many years now and H and I have gone for many years as well. Except for this year and last year…I didn't feel like going either year.
  
  So H goes by himself. When he comes back, he talks about how neat it was to see all the gay couples, happy, in love, being physical with one another (kissing, holding hands, etc.). Silence ensues. He then goes on to tell me that he wants what they have…why can't we, he asks? "Maybe they have a better relationship than we do," I say.
  
  Also, since this is my second year of non-attendance, I get scolded that I just don't like her party and now she thinks so too.
  
  I want to say, "I'm just reminded of what I'm missing when I see healthy, happy gay couples and so I'd rather stay home than see that. It just makes me sad & angry. And I am so tired of everyone asking how is H's health, telling me how good you look given your health and telling me, 'I just don't know how you do it.'"
  
  But I say, "Can't you stop ragging on me? Why are you constantly after me? I'm tired of you picking at me all the time." Not the most loving response, but it's the best I can do. Is the truth any better here?
  
  He's very nice to me the rest of the evening.
  
  
• Voicemail at work today asking me if they should keep H on the waiting list for the nursing facility or remove him, "as it sounds like he is doing very well."
  
  
• Found out that an old flame of mine is now working nearby…a man with whom I had a huge connection. Not looking for nookie, just a friend. So, I drop him an email to get together for coffee to catch up on our respective lives. Silence ensues. Guess not.
  
  
• Sometimes, I have a hard time sleeping and so I go to sleep in our guest room. More often than not, I wake with morning wood. I haven't had morning wood when sleeping with H in many, many years....thought it was just age. Guess my body knows, huh.
  
  
• I’m floating right now, between jobs and very much feeling how far apart H and I really are. Well, I think that I'm finally coming out of denial enough that I feel just how disconnected we are. No anchors at work, no anchors at home, nada. Irritation at the ambiguity coupled with urgency on resolution…enough to make my head explode. Ahhh, Mondays!

When All Else Fails, Eliminate Your Expectations

nI've been struggling recently with my anger and disappointment about H's health and its impact on me, him, and our lives together. I feel cheated and impatient to get on with my life (re: I'm very aware how short life is), he's worn out and tired of fighting this damned disease (me too), and our relationship is shifting to that of caregiver and caregiveee (sic), which in some ways is an improvement.

The other day, I was completely frustrated by a conversation I had with H. We've had a major car-repair issue that involved the classic decision: sell it, fix it and keep it, or fix it to sell it. The repair involved a comma in the price and so I was discussing this with H because we always have.

Now, I should know by now not to trust his judgment anymore, but it so automatic for me to ask his opinion and then consider it seriously. Instead of just a car repair discussion, it turned into we need two new cars (long list of candidates) and we need to move…he pulls out a house ad for a nice enough house, but much farther from work and in a less desirable neighborhood. So not going to happen. There is no reason for us to move.

Over the years, I've learned not to expect H to be able to do much physically and over time I've learned that his judgment is failing. What I haven't done is actually say to myself and believe it emotionally, "He's not my partner anymore, he can't be there for me, and I can't depend on him anymore."

Suffice to say that I left frustrated that I couldn't consult him on this decision -- the type of decision that we always discussed prior to acting.

The Buddhists tell us that one cause of suffering is not accepting what IS.

If I think about H as my patient, someone that I can be caring and loving with if I don't expect him to be a partner for me, then it is easier. But if I expect him to be the partner that I automatically invoke in my mind based on 24 years of history, then I will just get more and more disappointed and angry. And I don't like being there either.

Isn't this just the next phase of the long goodbye: having no expectations of him in spite of our long history together? Easy to type, hard to do, especially since my "partner" needs aren't getting met and that drives my expectations of H. No…not just sex (that's easy to get), but the share-your-life-together type of needs.

It's really about gradual losses for both of us and right now, it's also about accepting what is for me.

Back at the keyboard

So sorry for the length between posts recently, but a combo of visitors from out of town staying with us, vacation, and the inevitable dramas at work and at home have kept me crazy busy.

We had two friends stay with us, S & P (sic), for a little over a week, visiting from an unnamed red state. They are both sweethearts and we had a great time with them. It was great to have adults around the house to talk with.

I won't bore y'all with a recount of our activities, but I think the striking pieces about H during this time were twofold:

H was giving me grief about my drinking while we had guests in house. Now, I've been known to put back a few or even more than a few, but I was really pretty much of a lightweight when our guests were here (well, except for the fine scotch and tequila). After a bit of H's comments, asked him, "what's up with this?" After a bit of hemming and hawing, he confessed that he was jealous because he can't drink anymore due to his meds. Of course, I tried to be kind about this, and I told him that I was sorry he can't do that anymore and that it must be very frustrating, especially with scotch, which was our favorite drink for years.

We all went to the "gay area" in our town for a bit of shopping, mens watching, and sunshine…and trying to convince one of the guys, P, that he really needed a PA (we all would pay for it, after all)…no dice though. Anyway, H was really struggling to keep up with us walking. Not just huffing and puffing, but moving so very slowly, like one of those old men that shuffles down the street. At one point, we all realized that he was having trouble, so one of us stayed with him while the other two went off down the street.

The contrast of H, shuffling slowly down the street with a cane that didn't seem to help him, and everyone else on the street was frightening. Sometimes I just forget how ill he is and the comparison to other healthy people shocks me back into reality. Now, if I can just keep from getting angry when that reality intrudes on my little fantasy. I was wanting a day off of fun with our friends and then caregiving rears its ugly head again.