Just enjoy him

As I've written here before, H's health has been up and down many times over the past few years. When he is very sick, the obvious focus is to get him well again. And when he is well, we both wonder how long until he gets sick again and we both try to recover from the last time he was sick.

When he became so sick a few years ago, when I started this blog, we all thought it was the end, but it wasn't. And last year, we thought so too. And so on, dating back some 10 years or so.

So, I was talking with my shrink about what do I do now that he is getting better again? How do you go from a crisis to it's OK again…how should I feel? H and I are both concerned that his VL will only stay low for awhile and then start to rise again…it's happened every time.

So, how do you go forward, knowing that this will likely happen again?

My shrink laughs and says, "What else can you do but love him and enjoy him? None of us knows when we're leaving this place. All we can do is love those we love and enjoy what time we have with them."

I remember when one of our pets was very sick with cancer. Now, the pet wasn't in pain (at least the vet didn't think so), so he sent us all home and told H and me: "Spend what time you can with him, just enjoy (your pet) while he is here with you. It will be time soon enough."

Focus on the moment and enjoy them while they're here. What else can we do?

Witholding

One of the things that happens when you withold yourself from others, don't tell them the truth and what is on your mind, is that the witholding creates distance. Intimacy is the oppositie of that distance.

And over the years, I've witheld more and more from H. Early on in his illness, when he was 120 lbs and close to death, I took lovers. I never told him and I don't intend to now; why hurt him? In the distant past, we'd share our "indiscretions," much to the entertainment of us both.

What else do I withold? The complexities and worries about my future, my worries about him and how I'll handle it when he's gone, my fears of growing old alone, how "done" I am with not only being his lover, but his caregiver also, conversation topics, most of my needs (and I know that he can't meet them anyway), how upset I am with him for being stupid and getting this disease, my plans and dreams for the future...my hopes for something different for us both....

So, when I talk about loneliness I have contributed to it myself with my partner by witholding.

On one hand, I can point to the fact that he can't "catch." Then again, I'm not throwing the ball anymore.

Lonely is as lonely does

I went to a conference out of town this last week. While the event was interesting and even fun in some ways, I had a key insight. Without my usual distractions and err ah medications at home, I realized just how lonely I am. Of course, being a business conference, there were opportunities to spend time with like-minded men, but that is just a quick fix and the loneliness came rushing back (well, it was always there; I was just marginally distracted for a bit).

Before I left for my trip, I read about a man that had cared for his son with autism for the past 40 years. And recently the father had a heart attack and couldn't care for his son anymore. In an interview, the father talked about his loneliness (his wife had died some years earlier) and the burden of the care for his son. Because of the son's behavior, people wouldn't come to visit or be available as much as they were in the past. So, for the past decade or so, this dad was on his own with a mentally compromised son…no social life, no help from others, nada.

I've written here before about friends disappearing and as H's dementia has progressed, even our long-time friends are staying farther and farther back. Oh, they are there with a phone call and worried when H is in the hospital yet again, but they have faded away, pacing H's decline. His family has done the same.

And as my distress increases in these late days, I'm not the most fun person to be around anymore and so my friends have faded back and I'm less inclined to engage. Part of this is depression (I refuse to take anti-depressants anymore) and part of this is that I'm so burned out and grief-stricken watching this tragedy unfold that I'm just not engaged in life enough to have stuff to talk about other than how whacked I am. And bottom line, I'm sad and distressed and have been for years now.

Now that I'm back from my trip, I've spent some time with H and the loneliness is still there. Whatever it is that I need in this regard, he obviously can't provide. It is distressing to be in the room with your partner of so many years, crazy or not, and still feel lonely.

While I can't take responsibility for everyone else's issues (tho' I certainly do try to from time to time), I can take responsibility for mine. I don't get out much anymore and when I do, I'm afraid that I don't feel like a very interesting person anymore. I need to take steps to end my isolation, even as H slips more and more into his and pulls me along with.

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.

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.

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.

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.

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

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.

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.