Are we there yet?

Back at the desk (and the Web) after a two-week+ break. Nice to get off the grid for a bit. Didn’t do any travelling this time…was a staycation and it was a delightful break from work: get up and just do stuff I want. And coming back to work is a relief from what has been going on at home.

H has been having fainting and falling spells, so that created a bit of a hubbub during my break. Well, hubbub for me anyway. Dr. didn't seem alarmed about this or H's faltering mental state…"well, yes, his dementia will get worse, yes, he's at risk for falling." What's expected by others doesn't help; it's a big deal to me.

Keep wondering when he'll die…like being on a long, hot, uncomfortable car trip and you don't know when you'll get there because you've never been there before and traffic is bad. Sure, at some point you will get there, but not soon enough, in any case.

H pretty much slept through my whole vacation. Up around noon, take meds, back in bed until 4, take meds & eat, back up for dinner at 8, up for a few hours for TV, and then sleep again. More of the same, really. Just a shadow in the house now.

So, I just go about my life, visiting friends, working in the garden, etc. and I see him for 2 - 3 hours a day.

This year, among other things, I had planned to 1) quit drinking (check), 2) focus on work until vacation (check), 3) take an extended break from work (check), and 4) figure out what I'm going to do with H.

So, here were are.

Short answer: no surprise, but I’m not going to place him until I have to. I won't place him (I don't think) due to my issues, even tho' I can really feel the burden now that I'm rested about work. But I do wonder how long he can continue to be at home by himself.

He can't remember to take his meds, is at high risk of falling, goes to bed and leaves the windows opened and doors unlocked, can't remember to eat or if he does, he can't figure out how to make food or even where to get food from the refrigerator (e.g., looking for eggs in the produce drawers).

And from here on out, that trip in the hot car will only get more uncomfortable, however long it takes to get there, wherever it is that we're going.

Why I sleep so much

For years, H has slept a lot…up a few hours in late morning and early evening, but generally in bed the rest of the time. Sometimes he sleeps more and sometimes less, but generally, he's sleeping 18 hours a day or so. When he sleeps more, he's up for a few minutes here and there and then goes back to bed.

When I've asked or said anything about his sleeping, I get a range of answers, usually defensive, which is not what I was trying to achieve:

* Because the meds make me sick and I'd just rather sleep it off
* The pain meds make me so sleepy
* You're an asshole and I prefer not to be around you
* You don't want to be around me
* I'm trying to give you some alone time

When I ask, I'm looking for information about how he is doing. A few days ago, I mentioned that it seems he's sleeping a lot more (up for just a few minutes at a time and I really notice this) and he said, "Well…you can't diagnose me. "

"Oh, honey, I'm not trying to diagnose you, I'm just trying to understand what is happening," I said. "I'm asking because I care."

H said, "Well, I'm just depressed. I'm sick, I feel bad, and you don't want to be with me anymore. So I sleep. Besides, I just love sleeping. I really enjoy my naps…the highlight of my day."

Snippets from the edge

H has been off his anti-HIV meds for over a month now. He hasn't called to find out if his viral load has gone up or not. He says, "I just don't want to think about it or know."

Conversations at our house are very quiet…I talk but I rarely get a response. H is quiet a lot these days, part of it is that he's not been feeling well and I think that part of it is that he's not home very much.

My therapist talks about how people feel lost when a spouse dies. Nice to have a name for what I've been feeling.

Went out to dinner with folks from work and some work-guests from out of town. Everyone has something interesting to talk about…books, travel, hobbies. I come home and it's, "I'm not feeling well, I need to go to bed."

Work consumes most of my time and thoughts right now. It's good fun tho'. Will get a break in August and I can use the rest. Not certain how the time at home will be for me as I'll be alone whether he's up or not.

The thing about the hat

H and I went to our friend C's b-day party a week or so ago. She's 86 now.

While we were there, H told me that he was feeling bad vibes from the crowd and that C had likely told them bad things about him. I told H, "Well, if there's an issue, give them the responsibility to bring it up…otherwise, let's enjoy ourselves."

Later, H talked about how the bad vibes at the party must be because he wore a hat when outside during the party. Now, it was a very stylin' hat, a modern take on a nice fedora. He said, "They're from a different era and must not have liked me wearing my hat."

For the next 5 days, C called us several times, but H refused to answer the phone when she called and he didn't want me to answer it either. And he went on and on about how C is just cranky and wants to chew him out about wearing the hat. I tried to talk him down, telling him that "you don't know that's the issue…." But of course, that was the issue for him.

"I just know she wants to chew me out about wearing the hat," he says.

Finally, he decided to call C to "spoil her little game."

As it turns out, C wanted to thank us for coming to the party and to tell him how much she enjoyed the flowers that we sent to her home. No mention of the hat.

How to wash

Since i've been so busy recently at work and H is on a break from his anti-viral meds that make him feel so ill, he's been trying to help more around the house.

I really appreciate all the help I can get and give him losts of positive reinforcement for any help at all, even unloading the dishwasher and bringing up the empty garbage cans from the street.

Last night when I came home from work and the gym, he was starting to do laundry. He asked me how I do it.

"What do you mean?" I asked.

"How do you use the dial? Don't you start at the top?"

Our washer has 3 cycles (heavy, light, and delicate) on a big dial. I showed him each of the cycles and told him what each was for.

I told him about the dial for about 5 minutes trying this tack and that. You "don't always have to start at the top of the dial," but that you pick the cycle based on the clothes and how dirty they are. And sometimes, where you start is not at the top of the dial. It just depends....

He was very puzzled and more than a bit agitated at this point. Clearly, he was frustrated.

I finally said, "For most things you can just start at the top of the dial."

"Oh, OK, now I get it," he says smiling. "I've already washed one load, you know."

This is a man with two college degrees and was once one of the smartest people I know. Now, laundry seems daunting.

He has noticed that he hasn't rebounded (energy and thinking) like he has in the past when he took an anti-viral med holiday. I agree with his self-assessment. He asked me this morning if I was worried about this.

"No honey, I'm not. Give yourself some time off the meds. You know that you have good days and not so good days. You'll be just fine."

"Good, I'm glad to hear that," he says smiling.

But I know he won't. And I'm scared and sad about it.

Peas for dinner

About 12 years ago, H was recovering at a local facility that has a specialty in AIDS care after a bout of PCP pneumonia that nearly killed him. At that point, he had been in the ICU for almost a month and needed skilled nursing care to get him back on his feet. This is the same place that I was working to place him at the end of 2007. Lovely, kind people and state-of-the-care.

I had wheeled H in a wheelchair down to the dining room as he wasn't yet able to walk due to shaking and weakness. We lined up for food and I got his plate from the servers. Tonight was steak, mashed potatoes, and peas.

A handful of folks were in the dining room, mostly residents and a few family members. All the residents were either in wheelchairs or using a walker/cane. Only low talking, serious tones.

At the table, I'm cutting his meat because he isn't coordinated enough. But he bristled at being fed. He tries taking a drink, but is shaking and spills the water .

He tries to stab a pea with his fork, but misses and the pea skids off the table. I suggest a spoon and reach for it. "No! No! I can do it," he says.

He loads the soup spoon up with peas and moves up from the plate. OK so far, but then his hand starts to shake a little bit…a few peas drop to the table.

The higher he lifts the spoon, the more he's shaking and peas go flying. One hits me in the forehead and bounces into my water glass. I start laughing, then H starts to laugh and the spoon shakes more.

Now several peas are launched across the dining room. One splats on the nearby window. One flies towards the serving line and many land bounce across our table. At this point, I'm nearly in tears laughing…H begins to laugh more. And more peas fly.

One flies across the dining room, bounces on a table, and hits a guy in a wheelchair in the side of his face and drops into a visitor's plate.

At first he flinches like if a bug hits you, then he realizes it’s a pea, looks at us and starts to laugh heartily. Then others at his table laugh. Later as they were leaving, one of them comes over and says, "Thanks for making Joe laugh…we don't see him laugh enough anymore."

When it is time

When we had an old cat who was quite sick, the vet told us that he would die pretty soon, but that he wasn't in pain and so we should take him home and enjoy him while we can. "He'll let you know when it is time," the vet said.

So, we took our old kitty home and just spent time with him like we always did: treats, cuddling, and just sitting with him on the couch, petting. The old cat wasn't interested in playing with his toys, the other cats, or with us, but he wanted to hang around us a lot.

And, after awhile, it was time, but we had a few weeks more together where we enjoyed one another's company.

Of course, I think about this now that H is going off his anti-viral meds again, just as he has several times before…each time being a bad trip for all concerned.

In the past, when he's gone off his meds, H has been much more functional than he is now…we could by and large have a normal time together, at least for a month or so until the virus flared up again and he went into the hospital or couldn't figure out how to use his cell phone.

I need to manage my expectations better. I keep thinking that he'll be able to do stuff with me once he's stopped taking the meds that make him sickest. But reality intrudes. And I keep wanting him to be able to do things, not run a marathon, just normal things.

H doesn't want to play or run around, of course, he just wants to hang out and be with me. And right now, I find that rather painful for many reasons, not the least of which it brings up much fear that I'll have to descend into the depths of pain and grief yet again.

Brains & bunnies

H says to me in the car on the way to a local park, "I can really tell that my brain is not what it used to be. "

"How so honey?" I know the answer, but am wanting to encourage him to talk.

He says, "I can't remember hardly anything anymore and I keep having to re-learn how to use programs on the computer. And I've had to learn them again and again."

"That must be very frustrating," I say. What else can I say?

"And I can tell what's from the dementia and what's from the stroke and the epilepsy and what's from the meds."

I nod and say, "That's a lot of stuff, isn't it? Honey, you have gotten more than your share. And I'm sorry for that."

"Yea, me too. I thought it would get better without the (anti-viral) meds, but it isn't."

I say, "Give it some time, honey," not believing what I'm saying.

When we get to the park, he sees a bunny and goes on about it for quite some time. "Oh, look a bunny…." He's standing there pointing his cane at it, bending down and talking loudly to it. People looking at him being so excited and smiling kindly like they do for a little kid. I find it challenging to stand there.

We walked a bit in the gardens, but it became very clear that he was struggling just to walk around on level ground. I'm learning to be more patient and go slowly with him, which is hard as my gut just wants to run away.

And later on the way home, he says, laughing, "It just made my day to see the little bunny. I love rabbits, you know, so soft and furry and kind."

Boundaries, an invitation, and a holiday

One of my struggles has been how to deal with the reality that I no longer wish to have a romantic relationship with H, yet we continue to live together in our home of 24 years. For me, the romantic part of our life together is long over and I just don't see my feelings changing, although I'm trying to keep an open mind. Needless to say, H has been in denial about this for years now. But, in all fairness, I haven't been consistent as I've been racked with guilt and shame about how my feelings have changed for him and about us...and I have wavered.

So, now, I am being consistent. And while he may pout, throw a tantrum (like the kid who wants ice cream before dinner, but mom says no), or try the masterful guilting that only he can do…I hold firm and am loving and kind with him. Oddly enough, I feel much better being around the house and, for the first time in years, I’m feeling more comfortable in my own skin. My hope is that he, like me, will get to acceptance on this issue so we can enjoy whatever time we have left together and in whatever context we have it.

Setting firm, unyielding boundaries is key, but also it is important for me to extend a loving invitation to H: he's welcome to stay with me and I will be there for him, whatever happens. I've been consistent over the years with him on this point: I'm not abandoning him (tho' he may feel that way), I love him, and I will continue to care for him, regardless of how our relationship shakes out.

H is taking a holiday from his anti-viral meds for the Summer. He talked with his virologist about how sick the meds were making him feel and he wants to stop for awhile and "have a life this Summer." Now, this is not without any number of risks, but Dr. says it is better for H to stop taking them entirely than not taking them consistently due to the risk of viral resistance. Having said that, there still is a risk that that he may get sick after a month or two off or that the meds won't be effective anymore if he starts them up again.

I told H that I support his decision to take a holiday. I can see how bad his quality of life is, but I also reminded him about what has happened in the past when he took a med holiday. It's important to me that he knows I support him and that I will be there for him and it's also important that I tell him the history.

I didn't tell him this, but I'm very concerned about him taking a holiday as I've seen what happened before, but part of me hopes that he can have a few months where we can enjoy one another again. And, another part of me just wishes that this means the end of his long, tortuous road of this horrible disease.

Life and presence

Get a life

H has been struggling with side effects from his many meds: gaining weight, sleeping a lot, and most notably, just feeling like-he-has-the-flu sick. The latter is from his antiviral meds. H wants to stop taking the antiviral meds so that he can "have a life" this Summer. In the past when he's stopped his meds, he'll feel great for a month or so and then get very ill; been through that before and would prefer not to repeat.

In some ways, I don't like it when he's feeling better. His demands on me increase…he feels better so he starts more projects, but he rarely finishes them or can finish them anymore. And when he's up and about, I should just enjoy him while he's here, but I struggle with that too: I have all those fond feelings for him that I feel very conflicted about because I've been up and down too many times before.

And when he's feeling better, his expectations rise: he wants to do stuff with me, hang out with me…normal stuff really. But I just see it as work….seems like all I do is work these days. Work at work, work at home…little down time right now. And, to be honest, it is work to be around H for me now that I'm more present.

Being present

One of the side effects of (some would say the reason for) my drinking was that I was not present when I was at home. Heh, hard to be present with a minimum of a 6 pack a day.

Now, without drinking, I can be present and I find that a challenge. I can deal with the notion that he's sick and afraid and feel compassion, I can deal with his dementia and be patient and try to understand, but what I can't deal with is the thought that this will drag out for (many more) years…knowing that I'll not (ever) have a partner that meets my needs.

And yet I struggle to get those needs met now due to feelings of guilt and shame as I'm "leaving" my partner. Very strange, but that's how I feel. As much as I want a partner, or even just some fun, the block is there and much of it has to do with the thought of lying to him or hurting his feelings if he found out.

Random snippets

Treatment burnout...

Well, I've spent so much time on recovery stuff recently that I'm just burned out on it. Not that I'll stop attending my sessions and all that, but sheesh I'm tired of hearing about drinking or not drinking. The counselor in my treatment program is having fits with me about this as it challenges much of the AA a priori dogma.

Happily, I don’t have any cravings and I rarely think about drinking…well, unless I'm in a meeting of recovering alcoholics. Question under consideration: I know that AA is tremendously helpful to many, but given that I don't struggle with not drinking …how much of this do I really have to do to keep myself sober?

Don't go to that meeting!

H is worried that I'm doing too much right now, yet he can't see that he is a big part of my overload. Work is crazy busy and he's worried that somehow I'll run into someone at my once a week treatment meeting that is from my large company and that "it won't be good for your career." He also says, "You need to focus on work and yourself, you don't have the capacity to go to a meeting." Reality check, please.

It's really more about him not understanding the facets that I juggle constantly: it's work, work, work at the salt mines, then home to do more work (make dinner, listen to his old angry stories, take care of the pets), my self care stuff (including the gym & therapist), and oh that pesky spiritual path thing. I know I need a vacation, but that won't happen until August. So, yea, I need to do a bunch of self-care stuff and I do it wholeheartedly without guilt.

Just go back to bed, would ya?

No surprise, but H doesn't have all that many good days these days. But after a slew of bad weeks, he's up and about a lot more right now. So, he's up early with me, sleeps during the day, and is up when I get home. First time in literally years and, of course, I've been fancying myself a single man, so I have much dissonance about this. But, I'm not PO'd at him since I've stopped drinking and I am grateful for that.

He "just wants to be with me." I appreciate the sentiment, but all I hear at this point is neediness. I don't do well with this as he's been so bloody needy for so very, very long. But, when he's up and about and trying to be all chipper, I mostly just want him to go back to bed. Now, I don't say that, of course, but I think it and I also think to myself, "How many more years do I have to babysit?"

So many appointments

Finished my intensive evening treatment classes and now I'm down to one evening class, an AA meeting, a psychotherapy appointment, and a massage therapy appointment weekly. So, that's 4 - 5 appointments a week…a lot I guess, but worth it.

H says to me, "Wow, so many appointments…I thought you were done with treatment."

"Well, I want to make certain I don't drink anymore and I was already going to the therapist and massage," I said. The reality of it is that I'm just taking care of myself, wanting to stay sober, and trying to figure out what my life looks like. Yup, I need the care.

"I just don't think you need to go to treatment anymore...you never drank that much," he said. "I just don't know why you're seeing a therapist...you've seen him for years already and it isn't helping our relationship."

By now, I've learned to not defend my choices or my actions. It doesn’t matter. He doesn't need to agree or disagree or approve anything that I'm doing. In this case, being silent is the high road. But, he does pout about it.

I feel a transformation underway…for the first time in a long time, I'm focused on making my life better for me. I think that H can see me changing…certainly my personality has changed since I stopped drinking and I feel peaceful…but he's afraid of that change as much he's wanted it for many years. And he's not in any position to change himself at this point…his life is continuing to shrink and he's making it worse by not accepting where he is or we are.

He keeps wanting me to be at home (all the bloody time) and, happily, these appointments give me a reason to not be while also helping myself.

Dementially yours

As my head clears up, I'm really noticing how bleak my time with H is…especially on the weekends. And because of my distress at seeing how empty and odd he is/we are, I drank at home to numb out.

While H wants to spend as much time with me as he can, I find that I want to spend as little time with him as I can get away with. I'm in a weekday evening "class" at my local treatment center and, even tho' the classes are a bit dry (sic) at times, they at least get me out of the house in the evenings and talking with other adults. Even AA meetings, in all their bizarreness, are a relief for this reason.

Our time together is reduced to watching TV, smoking cigarettes (started that again, but will stop again), and eating dinner. I'm just bored with him and as we continue this long, slow declining dance together, there just isn't much of him left there. And I feel great distress from this.

Our conversations are pretty much me talking about work and my projects/hobbies and him talking about how he's still angry at his dad because "he never would admit that I'm right," his continual frustration and angst about being ill and having to take meds that make him sick, and reliving and being angry about the past. Oh, and the latest gadget that he found surfing the web that we have to get.

About a week into my treatment class…just as my head was beginning to clear...H told me that he wanted a divorce because I had mistreated him so…"I'll live in a hole if I have to." The next day he told me that he didn't want his medical smoking to cause us to break up because he knows that when folks get sober, they often have to cut all prior ties to stay that way.

Over the past several years, I made the transition from lover/partner to friend/caregiver emotionally. But I was too drunk to really notice it happening bit by bit. Now I see it. H readily accepts my friendship and care, and he clearly benefits from this. But H still thinks that I'm his lover/partner, which I no longer am in my mind and heart, even tho' I love him a great deal.

I don't have the heart to put this change in his face...he'd forget the conversation anyway...so every day I dance around the rotting elephant in every room.

If he were not demented, I would just tell him or he could see what has occurred…that wouldn't lessen the impact, mind you. But given how he is, he can't see it, doesn't remember what happended, and continues to live in a distant corner of the Twilight Zone, expecting, hoping that when I'm sober long enough I'll come around again.

Changing dynamics

In my treatment program class last night, we learned about how families can react when someone gets sober. In my case, I'm not certain that H knows what to do with me ("Hey, where's the asshole I lived with for so many years?").

Many marriages end in divorce after one (or both) of the spouses gets sober.

But I'm not interested in fixing my marriage, just fixing me. Right now, it IS all about me.

He can't be fixed (tho' I likely underestimate him), so my marriage can't be fixed, I think.

And do I really know who he is now? I'm assuming that he isn't capable, which is likely true. Would I have drunk so much if I thought he could be there?

And also, to the degree he WAS there, I wasn't because I was drinking too much.

I've learned that H is an addict as well…a prescribed one, but one nonetheless. I mean, he's been taking pain meds for so long now and the long-term affects on brain biochemistry are there nonetheless. Throw in significant dementia and he'll not ever be what I need, in spite of how much I love him and want that.

As I get weller and weller (sic), I’m realizing how impaired he is, but he can't get well…well, as well as I need him to be. Where does that leave me, leave us?

Finding a replacement

Someone in my treatment class was whining about how much time the class and homework is taking. (I didn't say it, but I was thinking the same thing: Class weeknights from 6 - 9:30 and homework too.) The counselor asked, "Well, how much time did you spend drinking?" Every evening and weekends too.

Someone else in the class was whining about how they had to rearrange their life around the classes. (I'm sure you can see this one coming.) The counselor said, "Well, you rearranged your life around alcohol, didn't you?" Uhhhh, yes, I did, clearly.

Very strange to not drink 1,000 or more calories a day. Now I have to eat and eat and eat. And even so, I’m still losing weight. Eventually, I'll figure out and get comfortable with how much I need to eat, but sheesh…I've never been a big fan of eating anyway.

Even stranger still is to be able to know in my heart that my romantic life with H is over, yet not be angry at him about it . The more present I become as I dry out, the clearer it becomes to me that I have to take responsibility for getting my needs met and not blame H...just love him.

Weekdays of clarity

I haven't had a drink since last weekend and I'm amazed at how clear I'm thinking; people ahead of me in the treatment program say that thinking continues to improve for a long time.

Work is easier, my quick wit (we can debate how funny it is) is returning, and I'm realizing just how much I love H in spite of it all. And a little support from H and our family goes a long way in helping me feel better too.

I also realize just how impaired H is - not just in the "big" things, like not being able to cook a meal - but in small things, like tracking a simple conversation, mumbling half the words in a sentence, or struggling to wash a pan because "no matter how much I wash it, it just feels oily." (It wasn't.)

Weekday schedule now is work 8 - 5 & intensive outpatient treatment (group therapy) 6 - 9:30. Throw in physical therapy and psychotherapy once a week each and 2 AA meetings a week and I'm max'd out. Too much therapy if you ask me…. And just for fun, I'm getting a cold too.

Happily, sister and nieces are cooking for H and he likes seeing them and they love to spend time with him. And a nurse is now coming in to manage meds for H.

Nice to have some relief so that I can take care of myself.

But best of all is that my anger towards H is diminishing in a big way and I'm able to be more patient and kind. I simply don’t have the hostility towards him that I've felt in the past…even when I'm exhausted and he's being, well, his impaired self.

And for all of this I am very, very grateful.

Monday snippets and !s

We had a nurse come to the house today to evaluate H for home visits to help with his meds. It's always striking to have a cogent adult in the house and compare H to that. And I realize how lost H would be without my help with all the paperwork and questions. The first nursing visit will be later this week!

Someone asked me once how my birthday was, I said automatically, "Fine thanks…just another day with a hangover." Well, I've not had a hangover every day for a week or two and I'm realizing just how impaired I have been. Wow. My mind is working again and I'm getting stuff done at work. I have energy and my quick wit is returning. And I've lost 7 pounds!

Local sister is taking care of H's dinners for the next month or so while I'm at evening sessions. I've talked with her and all is set up. I felt elation, yes elation, when H asked me how it was going to work and I said, "We've talked and it's all set up, but you need to talk with sister to find out the particulars." How nice to pass the buck!

Lab results

H's viral load is now undectable...the first time in over a decade.

His T-cell count is 984, well within the normal range for a man his (our) age.

He still sleeps much of the time, tells me he feels crappy a lot, gets anxious when we run out of grocery items (like sugar), is in terrible pain from neuropathy, and has a hard time following or participating in a conversation or making a bowl of cereal.

Modern medicine has saved his life again, but for what? For this?

H's support

Over the past week or so, I've been consciously reducing the amount that I drink in prep for stopping entirely. Now, I know that I have to stop, but I'm hoping to manage down the withdrawal just a bit.

A week from tomorrow I start my evening sessions and no later than that day, I have to stop drinking.

So, I've cut down from 8+/day to 6 to 4, etc. over the past week. This has been surprisingly hard. And now I get cravings by 10am every day, earlier than my usual, "It's 3 o'clock…where's my beer?"

H has been helping me stay within my limits. We count out how many I get and whatever is extra gets hidden. And I don't start drinking until 5pm.

Now, I'm not keen on putting H in the role of policeman, but it's something he can do to help for the next week or two and he is more than willing to do so. And I both appreciate and need the support right now.

In fact, we discussed H going to AZ to visit his sister during this time. His sister suggested it in fact…wanting to be helpful and supportive.

I said, "No because I don't know that I trust myself to not drink and so I could really use your support.

H said, "I don't trust you to not drink either."

And while I've been whining here about H not being there for me, this is one area where he can be. And for that I am very grateful.

Confirmation

Got an assessment at a treatment center. "Yes, you're an alcoholic." Thought so. I'm starting outpatient treatment the week after next.

Getting some help, family stepping up. "I'm here for both of you," his sister who lives locally says. They will help with dinners while I'm gone.

"I'm sorry that my illness makes you drink, " H says.

I say, looking him square in the eye, "Thank you, but don't blame yourself. I have to take responsibility for this."

Talked with a nurse today about help with meds, which should start in the next week or so. "…you're losing him inch by inch, it's a chronic condition with a slow decline."

Single dad

Well, it's just not the care duties, but it's the whole package of having to play "single Dad" for another grown man in the house. Very little happens without me personally doing it, cooking, picking up the house, bill paying, unravelling insurance issues, etc.

That's annoying enough after 10+ years of this.

But the real issue isn't the care, the chores, or the responsibility, but that I don't get my needs met by this person. And it won't be any different unless I do something about it. H is hardly capable of making food for himself, let alone being capable of meeting my needs.

However this resolves itself or not, I do believe that, after a bit of errrrr adjustment, that I'll be able to handle this all better when I'm sober.

There I wrote it, "when I'm sober."

And I also think, with apologies to Saint Augustine, "Lord make me sober, but not yet."

Monday dyad

Illusions

I've been encouraging H to do as much as he can for himself. This could be medication ordering & set up, calling about insurance snafus, or even just getting an eye exam.

It's helpful to me if he can do the tasks, but mostly I’m just playing a game with myself that he's not totally dependant on me. If he can do this or that, then I don't have to acknowledge the reality.

Sometimes, he can do the task…but more often than not, he gets frustrated and whacked out. Then I have to jump in, call him down, and finish the task myself.

Might be better if I just do the tasks myself, me thinks.

Give up my dreams

We were watching some TV show and there was a Bentley on it…a nice new convertible. (He's always been keen on fancy cars, especially Bentleys.)

H sighs and asks me, "Should I give up on my dreams?"

"What do you mean?" I ask.

H says, "I just don't know if I should give up on my dreams…."

I say, "No, because anything can happen. I could die of a heart attack tomorrow and you could buy that Bentley. You just never know."

"I'd really like a red one," he says.

"Yes, you'd look good in a red one," I reply.

Gearing up to dry out

For many years now, I've been drinking quite a bit. At first, it was for fun and now, well, let's just say it's a requirement.

When H first got sick, 12 years or so ago, I started drinking more and with increasing regularity and I worked my way up to a 6 pack a day. Recently, I've blown through that mark and drink way more than I mean to, even tho' I'm trying to limit it. Sigh.

I remember talking with a therapist about my drinking. At that time, H was very, very ill. The therapist said, "Well, your drinking is understandable, but if it continues for longer than 2 or 3 years after his death, then that is a concern." That conversation was 9 years ago now.

The cold reality is that I need to stop drinking before I slip off the cliff. And the other cold reality is that I won't be able to medicate myself when I'm at home and I hate being home.

I'm sad that drinking has become what smoking was: something I used to enjoy, but now I can't control anymore and I have to stop. While I can have a cigarette from time to time, I know better than to have any in the house as I'll just smoke 'em all, quickly and without realizing it.

Now, I'm not keen on AA, and I'm already in therapy, but I'm going to my Dr. later this week to see if I can't take something to help with withdrawal. Getting Nicotine replacement was the only way I was able to stop smoking. I hope there is something comparable for drinking.

Family time

Last weekend was a big b-day bash for a family member who turned 50 (no, not me…yet!).

It was frustrating for H because his sister and her family came into town for the event and he didn't get to spend as much time with them as he would have liked.

I had a wonderful time with them all and my worries about getting grief were happily unfounded. What was even better was that we only had a moment to talk about H because there was so much going on. Nice to not have the focus on him so much.

What was most striking tho' was when I told his sister, "You know, (sister's name), I love H and I'm doing the best I can. I know how unhappy he is."

She starts getting teary-eyed. Me too.

Whatever tension was in the air due to the placement fracas last Fall vanished.

She said, "I wish I could fix his attitude. He's so angry and negative. He's pissed at you, mom & dad, me, everyone, the world."

"Me too," I said. "But who can blame him? He's not even 50 yet, but he's losing his mind, his health, everything. And mostly, (sister's endearing nick-name), he's just tired, very tired."

Thank you

I wanted to say thank you to all of you folks out there who read the blog.

It's very helpful to know that someone is out there listening.

And I'm grateful that you spend time reading my entries, doleful tho' they often are, and supporting me in your thoughts, prayers, and comments.

Why do I do this?

Twice a day, H takes his many, many meds. They make him very, very sick and so he dreads 10am and 10pm. The other morning, he was grumbling about taking his meds and exasperated.

"Why do I do this? Why do I take these?" he asks me as he looks at a small Dixie cup filled with pills. He takes two Dixie cups filled with pills twice a day.

"Because they keep you alive."

He says, "Yea, but I feel so bad so much. I should stop taking them."

"You've done that a couple of times, you know…"

"I have?" he asks, looking very puzzled.

"Yea, at least 3 times you stopped taking the meds because they made you so sick. You called it 'pill rebellion.' "

"Then, you got sick, very sick within a week or so of stopping the meds…with what you described as the worst flu you've ever had. The virus came roaring back. And you got scared - got hospitalized one time - and started taking them again."

"I did?" he asks. "I don't remember any of that."

Being the bearer

H's sister and her family are coming to town this weekend for a family birthday bash. (H's parents are not coming to town, which is AOK.) I haven't seen his sister in about 4 years…last time she came up to see H because we were told that he was going to die in 6 months. But, another anti-viral med came out and pulled him back.

But the past year or so has been strained with his family because I moved so aggressively to place him last year.

Because they're not local, they don't see how H is really doing except when he goes to visit once a year or so…like he did last Thanksgiving. And he tends to put on a good show for them, although "he does sleep a lot."

As is the case with H, whenever I raise the issue of my burnout (e.g., my experience), their response is that this means divorce and they get all discounting and accusatory on my ass. Really, what I'd like would be some support and sympathy, but they can't seem to muster it and neither can H.

So, I'm not certain what to expect when they're all in town again.

I guess that no matter how I play it, I am the bad guy. And I just need to accept that. After all, I'm the one who struggles to deal and if I can't, then they are terrified that they will have to step up.

The only way I know how to play it is to tell my truth and if they start to get surly and I feel defensive, I'll just tell them that I love H and I’m doing the best I can…and then just walk away.

My biggest challenge is to approach the time with them with an open mind (& heart!) and not have any expectations. But right now, I find that rather daunting.

Heal me

H's family has always been seekers, looking for alternative healing methods that include both the profound and the silly. Profound in terms of how we create and can change our reality and silly like a burbling mason jar of fungus has healing properties or pads that remove toxins from the bottom of your feet.

While these methods may or may not work, they pursue them with a vigor that some reserve for their most favored hobbies or passions.

Recently, H's little sister has been interested in a form of long-distance healing. She's taking some classes and others in the family are interested also.

So, H says to me last night, "They're learning this (healing technique) for me, you know."

"Yes, honey, they love you very much and want to help."

He says, "I just don't know if it could help or not…."

"Well, if it does, it would be a miracle. Not that I don't believe in miracles…just that it would take one to make you healthy again."

H says, "I really need two miracles: one to get me well and one to get a good job so I can get on with my life."

It is what it is

I keep having regrets, deep regrets about how things were and how things are. And I wonder what would have happened if I made other decisions instead of the ones I made. And, yes, I blame myself sometimes for the choices I made.

"If only I had done this or that…." "If only it were different…" "If only, if only."

Well, it's not if only. It is what it is.

And instead of just looking at things as "these are the facts and circumstances of where I'm at," I keep looking back over my shoulder wishing it was something else, that I had done something else, and that I'm somehow able to do something to change it. And I beat myself up about the regret I feel because somehow I think that I could affect the outcome. But I can't.

All of this is my struggle for acceptance of what is. That my partner is dying, slowly, and that I'm very sad and it impacts me profoundly in many ways. And that results in a life that I'm not happy with.

My favorite metaphor that my therapist uses is, "You're in a plane that's going to crash and there's nothing you can do because you're not the pilot. You're not in control, you can't be and you won't be. You have to accept the reality that H is dying, nothing you can do or think will change that in any way, and you're just along for the very scary ride."

Hoping for colon cancer

H has an accumulating set of issues in addition to his baseline stuff: depression, bowel distress, loss of strength and stamina, fear of just about everything, frequent nausea, more mental slowness (again), etc. etc.

Talking with him last night, he blurted out, "Well, maybe my bowel trouble is colon cancer. I hope so...maybe adding one more thing will get me out of here more quickly."

Then he laughed a bit.

I said, "Honey, you were checked for colon cancer just a bit ago and you were OK. Besides, in your case, clearly it isn't about how many health issues you have...as you say, all of your dance cards are full...and besides, you've beat the odds again and again."

"Yea, but I doubt I could beat cancer...wouldn't want to, anyway."

Uresolved

When H and I have had issues to deal with and we've gotten angry, usually there is some resolution to that tension. Someone takes responsibility, we agree to do something different, or one or both of us just says, "Yup, you're right." And mostly, something changes.

But now, instead of being resolved, well…it doesn't .

Recently, H got up from a nap after not having eaten all day…it was late, 9pm. I had just worked an 11 hour day and was making dinner: very tasty Reuben sandwiches with cole slaw and homemade baked potato chips. (!)

He was very upset about "sandwiches again for dinner" and "we've been having a lot of sandwiches." Uhhh, no…a few times in the past month. The night before I made a fabulous dinner, but he couldn't remember what we ate. Most of our meals are homemade meals.

So, tense words ensue and what we said doesn't matter. Unfortunately, H can't deal with me when I get angry anymore…. And he can't acknowledge the issue because he's so puzzled or he doesn't understand what the big deal is, so my anger doesn't abate.

There are many, many other examples like this, but more and more it involves a lack of resolution about the issue. Not just for me, but for us. We're not working on the issue together.

I need to get to the point where unresolved issues don't matter to me.

Honestly, I don't see how I can do that....

Burden snippets

As I've mentioned before, we thankfully have a house cleaning service and on "school nights, " I sleep in the guest room so I actually can get a good night's sleep. H asked me last night to make certain that my pillows were on "our" bed before they came to clean. I didn't ask why.

Some states have Death with Dignity laws and while I have mixed feelings about it, when my time comes I hope that I have the choice to end it if the alternative is a miserable, painful death. When H and I discussed this topic very recently, he said, "You just want me to die" and "It's a good thing they couldn't do that when I was so sick awhile ago."

One of our pets died last week…we had him for 15 years. His kidneys failed and we had to put him down. As I was driving us home, H turns to me crying and said, "Why do we treat animals better than humans? Why can't I just go to sleep?" All I could do was choke back the tears so I could see the road and gently squeeze his hand. I thought, "Yes, honey, I know how tired you are. Me too."

H takes >20 different meds each day…a total of at least 50 pills a day, plus a number of liquids. I've encouraged him to take care of the ordering and setting up because I think it's good mental exercise for him. I audit to make certain it's OK. But he can't figure it out anymore…he panics more often than not... and so I've tried to do it…even with a clear mind, it is too much for me. Time to bring in skilled nursing, which is sad and a relief to us both.

People in the house

We have people coming into our house on a somewhat regular basis...we have a cleaning service that comes in every two weeks (thankfully) and there are usually a few repairfolk coming and going on a somewhat regular basis.

Recently, we got a call about some permit issue related to some improvements that we made last Winter. Seems that the city didn't have a record that the inspections happended, yet we remember they did but can't find the paperwork.

So, the inspector has to come back.

These is the same inspector who H tells me wanted to use our bathroom as soon as he came into the house. Seems they were looking for a certain substance that, while approved for medical use in our state (and H needs and uses it with an Rx), is illegal in this country.

Maybe he just had to pee. I suggested this to H, but "that's just his excuse to go into the back of the house."

So, now H is afraid that they are coming back to the house again, not because the paperwork got lost, but because they are out to bust him and so they're going to be here collecting evidence.

Recently, the house cleaning crew has become suspect. "They keep having new people come over...they're just checking out the house. They're collecting evidence." And so, before they come over, we must scour the house of all visible trace.

I'm very sorry that H lives with so much fear and worry. (I have fears and worries too, but mostly about growing old and that it will get much worse with H over time.)

On one hand, I won't tell him that he's crazy (although I think he is by now) and on the other, I can't tell him that he is right. All I can say is, "Honey, it will be OK. I'll help you put things away."

Funhouse

When I was a kid, we used to go to the local carnival and they had a fun house. Dark, twisted hallways, mirrors, smoke, scary heads that pop out from no where, horrible noises...the ususal dark ride stuff. I always hated those because you never knew what was going to happen, but you knew that it was going to scare the **** out of you.

These days, while things are calmer...sense of resignation, perhaps...it still borders on the bizarre from time to time. And I don't know what to expect anymore.

H grabs me in the hallway, really, really upset looking...almost in tears.

"I have something important that I need to talk with you about...it's been bothering me a lot," he says.

I think "Oh boy, is this another relationship conversation?" But what I say instead is, "What's bothering you, honey?"

"Well, I've been watching this movie and the US government really DID cause 9/11 to happen. They let it happen, the b******s. I just knew that it couldn't be the terrorists...the government just wants to control us with fear to advance their agenda...."

OK, so I'll stop there with his narrative on this.

Another time he's visibly shaken and is telling me that he's having nightmares. So we are talking about that and then he starts telling me about watching CSI shows and shows on serial killers. And while he won't watch a horror or ghost movie with me like we used to (or even a tense movie at all with me because he "has enough nightmares"), he's clearly obsessing on death these days. And in some ways, he needs to confront it...even if on TV.

I'm finally learning to just hear what he has to say, not have any pre-conceived notions in my head about what he's going to say, and to not cut him off. The only way I know what is happening with him is if I get the unfiltered story. And so, I've shifted my internal monologue from "Oh, God, what is the issue now" to "I wonder what he's thinking." And when he says something, I just try to have an open mind and listen.

Keeps me saner.

But I really never know what to expect: it ranges from outright rage at simple things ("Dammit, you put WAAAAY too much food out for the dogs (insert much yelling about how I never listen to him)"), to complete contradictions in a single sentence, to multiple shows on serial killers (e.g, movies about them or documentaries about them) on the DVR, to a whimpering puddle at the thought of a government conspiracy.

Another step in my acceptance is that I just need to think of him as a child...sometimes they rant, they cry, are mad, are lost in fantasy land, or scare themselves silly.

Truth be told, it scares me too.

Control

Two of our long-time friends, T and C, have significant health issues.

T is in his late 50's and was in a very bad accident many years ago and is confined to a wheel chair. He is terrified of using the baseboard heaters in his house, even when guests come over to visit and everyone is up and about. It's been been cold and snowing here.

He rants about how dangerous the heaters are and yells at anyone who reasonably says, It's cold in here, "Well, that's just the way we live. If we can do it, so can you." Meanwhile his wife has a little space heater by her desk where she goes to get warm once in awhile.

We couldn't wait to leave.

C is 85 and has many joint replacement surgeries due to rehumetoid arthritis. She uses a walker now to get around. We went down to the garage to pick her up at the elevator. She came out of the elevator, I got out and opened the car door for her as she walked 20 feet past the car...walker shaking over the rough asphalt..."No, pick me up over there."

"I told you I don't like to be picked up here...you come over here right now!" A few back and forths...I walk over to her to help her to the car and she swats me away...now she's fuming and screaming, red tight face. This episode occured after we had gone to her apartment and she said she didn't like our haircuts, our hats, our generation, our opinions.... We were there to deliver her Christmas present and take her out to lunch.

There was no way that lunch was going to be any better, so we simply drove off.

Burnout = divorce

During dinner last night, I was chatting with H and he was after me for my "flat, sarcastic delivery" about how much Christmas costs every year and how I'm trying to manage that down for this year.

I said that I didn't mean to be sarcastic, but I'm just tired and burned out.

He looks at me intently and says, "Well, we should just get a divorce." And he goes on from there about an attorney, selling the house, whatever....blah, blah, blah.

I said in a flat, tho', not sarcastic voice, "Well, if that's what you want." Truth be told, at least this would be one way out of this mess.

He flies into another tirade about something related to whatever, whereby I get up from the dining room table and walk away.

What's striking to me is that this is the same M.O. that his family has: whenever I raise my experience and my struggles with caring for H, I get the consistent comment, (sigh) "Well, I guess that means divorce then."

While I understand that no one in the family will take H, what I don't understand is how little empathy there is for my struggles caring for him.

Why is it that saying something is hard for me causes these folks to jump to divorce?

Perhaps this is all just their guilt, but I think that the motives are much more pedestrian: money. They all know that I support H and without me, who will or can? If it's labelled divorce, then maybe he or they get a settlement?

Later in the evening, H is all mopey and affectionate. After a bit of TV, I go off to bed in the guest room.

At this point, I have to confess that I don't care much anymore, really.

Bleak house, redux

How silly of me to think that things would be different, just because H is visiting his family for a few weeks.

While he's not been ill while travelling, somehow I thought that all would be happiness while he is gone, a chance for me to refresh and regroup and, mostly, to enjoy myself.

I don't have the seething anger and resentment with him gone, I don't have to listen him fret, I don't have to do anything for him, and I no longer hear the screaming in my head, "I am so done with this. You need to go away."

And right now, I do notice great relief from not carrying that load. I am grateful for the break.

But being here at home alone show me how wacked out I am with H just drowns out everything else in my life. And while I don't want to pin it all on H, I believe that my life would be very different if he hadn't gotten ill or if he had just simply died some years ago.

Truth be told, I've just felt empty, barren, since he left…no desire to do much of anything except drink, watch those compelling videos, and go to the gym. It's not depression; it's not a mood, it's an empty bucket.

With him gone, the issues I have with my life sting more and I oddly feel both urgency and resignation.

Whether he is here or not, I'm lonely, I drink too much, I'm tired of being celibate, I'm going to be 50 in a few months, and I'm just tired. Some is existential anxiety, but much is just asingleman's life needing some attention.

"Like the deserts miss the rain…"

Quiet house, quiet mind

It's been a long time since the house was this quiet and even longer since I've felt any sort of quiet in my head. H has been gone only a few days now, but the relief I feel is palpable.

When I returned from Europe last week, I experienced the opposite. As soon as the cab pulled up in our driveway, my back, neck, even my legs began their characteristic chronic aching. While I was gone I had a bit of soreness from walking so much, but nothing as systemic as what I experienced upon my return.

Once I saw H disappear down the jetway, those aches and pains mostly left me again.

While I always knew that my responsibilities for H weighed on me, I've never been aware enough to feel that weight come and go so suddenly. Such is the cost of caring for someone you love who is slipping into dementia and slowly leaving this planet before your very eyes.

Now, with H out of the house and a long horizon until his return, I can exhale and my body is actually relaxing. My deep tissue massage actually is deep now.

Aside from the obvious benefit of not having to provide care for H while he is gone, what is striking is the just how quiet the house is and how quiet I feel, along with the belated realization that my life is, in fact, all about me and what I need. The clarity is startling...my gentle readers know that this is obvious, but I have clearly lost much perspective in all of this.

And while I can make a consicous effort to sacrifice my time and energy to care for someone I love, I am enjoying this peace far too much to want him to return...ever.

Bleak house

Coming back from a week out of the country was as expected, maybe a little worse.

H had a "bad week," he said. He has some minor episodes of seizures, which has happened before, but he didn't go to the doctor or call his sister, who lives nearby. He didn't want to call as it "would have meant a trip to the hospital."

He said he was depressed and slept most of the time; lonely too, he said. Hardly ate because he "just gets confused cooking" and didn't go out to eat very much. Happily he had a few friends come visit.

While I hear the voice screaming in my head, "I'm done with this," it doesn't mean that I can't feel sympathy for this sad, sick man. And I do. And so, I can't or won't scream at him.

H leaves tomorrow for two weeks out of town and I'm glad. I shall be able to have some peace and quiet and relief from the funhouse that is our home now.

Looking back

Now a week out of the country on work travel with my extended team. In addition to the wonders of a more tolerant society who believe "live and let live," I've really enjoyed the break from the tedium of living with H and just how helpless and hopeless he is.

My team is astoundingly smart, funny, and passionate. Sometimes I don't feel that I belong, but that is my issue as I have clearly already been accepted.

Many nights out with all of them and obvious things to say: they are not only looking for an adventure…to expand their experience…but they are also able and willing to go after it. There is a keen desire for adventure and the ability to go after it. To have fun without the "my feet hurt," "I feel sick," "I need to lie down," or "I need you to make dinner for me."

So, we are in a strange city and go clubbing…men and women, straight and gay. It is just about having fun together without accommodation. Up steep narrow, twisting stairs, dancing on a crowded floor, walking a mile back to the hotel on rough cobblestone streets at 3am.

Maybe that is what I struggle with: the notion that he needs so much accommodation and I need a peer…someone who can keep up with me. Not that I'm running marathons, but still….

"There is a fine line between being noble and being a martyr." From the Alzheimer's' Moments blog.

So, you think that you're being noble…but is expressing your grief and whining being a martyr?

And for those who haven't experienced this slow, long painful goodbye...is missing what you once had and talking about it being a martyr?

I want you to be there for me

While there is ample evidence that he's simply not capable of meeting my needs, I still want him to be there for me as I struggle through his waning days. But he simply can't be there in the way that I need, but that doesn't stop me from wanting it.

Oh sure, I can intellectually understand how he's not capable anymore, that H is my patient, my job, if you will…and not my partner anymore. But my heart still yearns for him to be what he once was and to be there for me as he once was, plain and simple. How could I not?

And if we were living apart, say with H in a facility, the physical distance would be the evidence I need to really get that he is no longer there for me, literally and figuratively.

H and I continuing to live together has slowed down my grieving and transition in many ways...there is no marker like moving away or death, just a long grind down to the inevitable.

A vignette from last night (this has happened many times in the past month or two):

So last night, I'm sitting on the couch watching TV with H, holding his hand. Suddenly, his hand gets very sweaty, then very cold, and he's stopped breathing. I touch his shoulder, once, twice...nothing...Oh God is this it?...then a firm push and say his name. He comes to and says, "Oh, I must have fallen asleep."

Tension in the house

We have mildew in our bedroom closet.... Happens pretty every Fall/Winter and we treat it by spraying with Lysol. Works well, but smells a bit.

So, the other night H couldn't sleep in the bedroom due to the Lysol smell, but it didn't bother me, so I slept in our bedroom and he slept in the guest room.

Last night, while we were in the office, one of our cats starts meowing...he does that, he's a Siamese.

H says to the cat, "Oh, honey, are you upset?" Meow. "Are you upset because I slept in the guest room last night?" Meow. "Are you upset because there's so much tension in the house?" Meow.

Truth be told, you can say anything to this cat and he will respond with meow.

H says to me, "There, even the cats are upset with what's going on here."

What can I possibly say to that?

Anger management

The husband of a dear friend of mine has Parkinson's and the progression is limiting what he can do more and more. My friend told me that she finds herself getting so mad that her husband can't do even simple things (like the dishes) anymore...not just irritated mad, but raging mad. She asked me what I thought she should do and I said, "Don't expect anything from him anymore."

I was talking with H the other night and somehow we got onto the topic of anger, my anger. He's pressing me, what am I so angry about? "That I lost my partner, my lover, that I'm exhausted from all this." "Well," he says, "you can't be so angry and still love me. You better talk with your therapist about this (he's yelling now and goes on for about 5 minutes in a rage)." Everytime I try to say something, he cuts me off and yells louder.

He's screaming now about how our relationship isn't what it could be, should be and that this is my fault. I tell him that he's living in a fantasy world...out relationship has changed, period. More yelling, "You're the one living the fantasy...you go off to work everyday, make money, have somewhere to go...I'm hear all day, alone." He's crying now.

Don't expect anything from him anymore. Don't expect him to understand.

H's has been having dreams with lots of crying, he says. And lots of yelling. I'm not in those dreams.

Next month I'll be travelling for a week and H will be visiting family for two weeks. So, for ~3 weeks I won't see him. I need to get used to him not being in my life both literally and figuratively. It will be a very welcome break.

He's not your partner anymore

I really struggle with how to view H these days. While I understand that he is sick, I keep expecting him... nee keep needing him...to be my partner. As I've written here before, since we still live in the same house that we bought 20 years ago, I just keep hoping and filling in blanks for him.

So, I'm whining in therapy about my disappointment about not getting my needs met and how to deal with H's issues as I go out and get my needs met (nothing too salacious, just taking some nights off to visit with friends).

Now, it's hard to even do simple things without him as he gets pissed and mopes about that I don't love him, that I’m ashamed of him, that I am tired of him, and "we never do anything together anymore." Right, doing things with him is not fun for me, it is work because he is so high maintenance.

And I'm whining about how H continues to be after sex and talks about how our relationship isn't what it used to be. Yup.

At some point, I blurt out, "Well, I just think that I should be able to talk with my partner and work through these issues…"

My therapist leans forward and says, "He's not your partner anymore. He just can't be. You are in a fantasy that he is or ever will be again. Whatever he is to you, he is no longer your partner in the way that you need one. Sure you love him and care about him, but based on everything that you've told me for the past 4 years, he will never be able to give you what you need. In fact, it continues to go the other way."

What needs to shift for me is to view him as the sad, sick little man that he's become. Maybe I won't be so angry at him if I just accept this.

And maybe, just maybe, if I can think of him differently, I can begin to move on in a way that honors him and the love that we have while still getting what I need.

Gifts and gratitude

I was talking with a friend of ours who has known H longer than I have. I surprised myself when I told her about the gifts that I am receiving as a result of H's illness and my time caring for him. I've certainly shared my grousing in this blog and so it makes sense that I'd share my gifts and gratitude as well.

Let's start with compassion. Before I met H (and even for awhile afterwards), I wasn't the most compassionate man. I wasn't mean or selfish, per se, but I was definitely not patient and compassionate when considering others' experience. Now, while I do get impatient with my situation with H, I find myself being way more sympathetic and patient with H and other people overall. Not just the disadvantaged or ill, but with everyone. In many ways, this experience has taught me to love in a way that I didn't expect: unconditionally.

Respect for mortality. Before H got sick I hadn't had much experience with people that I love getting ill, but in the past 10 years or so, I have seen what it means to be in poor health. As a result, I convinced myself to stop smoking some years ago. And most importantly, I feel deep gratitude for my good health pretty much every day and I try to do the right thing. And I realize just how precious good health is.

Slowing down. In my work, we are racing constantly…racing with the market, with other groups in the company, with our peers; fast paced doesn't cover it. But when you need to patiently explain the same thing over and over again, it helps to have patience…to gear yourself to the other's pace. While I can't claim that I've nailed this one yet, it does me no good to be impatient with H and I'm finding that it just makes life more stressful to be impatient all of the time.

Forgiveness. Can't say that I've got this one nailed down either. But I can say that I at least understand how important it is: not forgiving others just gets in the way of me loving them. And not forgiving myself just keeps me stuck in regret and pain.

Would I want to repeat this experience? No! Please, no!

But what is it worth to learn how to love unconditionally, to respect our health and bodies, to slow down, to forgive, and to be grateful?

Counseling our marriage

Up early today and busy with getting ready for a house project that involved moving some furniture, etc. Great anxiety for H as "someone is coming early in the morning and I have to have my breakfast made before they get here." So, we're both up early today.

I'm sweeping and just moving stuff around and H asks me, "Can we get some marriage counseling? I don't want to be here if we're not having sex."

"Uhhhh, sure," I answer, but not meaning it. He'll likely forget he asked me about this and I don't really care much anymore about the outcome anyway. Frankly, I would prefer to live alone and have wanted to for many years now.

And I didn't say what I was thinking, "I don't want to be here at all anymore either. I told you I was done years ago and I've said that over and over again. What part of "I'm done" don't you get?"

His question did make me sad, very sad. Our time as lovers is over and, even tho' I know this to be true, I'm very sad about this. Not only am I sad due to what H and I have lost, but I'm also sad because I want what he wants and likely as desparately as he does, just not with him.

And I just don't want to tell him "No" again and again and again.

For my new readers, sex has been a issue with H and I for awhile now. His doesn't work and I just end up in tears and can't do it. Very sad.

One bright spot is that maybe counseling will help him move on, but it hasn't in the past. We've been here before and nothing changes. Nothing at all. Sometimes, in my more irrational moments, I fantasize that he'll want to leave so that I don't have to be the bad guy and "kick him out"...sure, I'll continue to help him, but I won't have to live with him anymore.

What I can say is that it is unreasonable for me to expect him to change in any way. He just can't. And he'll never leave under his own steam.

While H may have lost some of his mind, I am losing more and more of mine as time goes on.

Yup, sometimes I just want him to die...but mostly, I just want it to be different.

How do you be?

I have a hard time separating out my love and desire to care for H from our history as lovers, romantic partners, spouses, soul mates.

He so wants the romance, the way it used to be, and of course gets reassurance from me when I provide the kiss, hug, etc. I don't get any reassurance from H when he returns the favor. All I can hear in my mind is a voice screaming, "I am done with this."

Yea, I want that too...just not from him anymore.

I am done with that. For many years now, I've gone through many motions (sic) to give him that reassurance. But it get harder and harder to fake it.

And so I struggle with feeling guilty about just not wanting the romantic part from him anymore and, more to the point, dealing with his reaction about that.

The dilemma is that I love him and I know that he needs that attention (we all do), yet I just don't want to do that with him anymore.

But the real question is: How do you continue to live with someone when you are done with the romantic part, yet you desparately want that, but not with this man? And yet I love him and want the best that I can do for him.

The reality is that after being his caregiver for so long, I can't be anything but that (albeit a caregiver that loves him deeply).

Just smack his butt, etc. and make him feel good when smacking his butt is the last thing I want to do. It's not about what he needs anymore, other than the caregiving part.

How do you be under these circumsances? How am I supposed to interact with him? How are we to spend time together? What are we, then?

Neither of us likes where we are, yet here we are.

He needs so little and I need so much

I've been thinking about how to position H in my mind, my life, and my heart. Our relationship has changed so much over the years, especially the last 3 or so as he has been so sick.

And all this time, I kept thinking that his needs were so overwhelming. But you know, what he needs is reassurance, some help with meals, some companionship, some love. Pretty simple really. Yea, I think that he would like more, as do I, but I think he's also finally coming into reality.

I keep thinking that he is in my way and that because of that, I feel more resentment towards him than is warranted and fair.

But he isn't in my way. I just think that he is.

His needs aren't so great, I just think that they are.

But, I need a fully functional partner and all that entails. And I haven't had one of those in a very, very long time…oh, let's say 10 years or so.

So, at this point, it really isn't about him at all, but about me.

The party in question

For many years, one of our lesbian neighbors has been having a large, very large garden party in July. Lots and lots of people attend. And for the past several years, I haven't gone.

It isn't the people or the venue, it's me: I just can't deal with seeing all those happy, healthy-looking passionate gay couples there (same reason I don't like Pride) and I'm tired of all the conversation around H's health.

Mostly, I am just tired of being the sick guy's partner.

So, this weekend I thought that I would just plan to go to the party…just plan to go for the first time in at least a few years.

Slept in on Saturday. Took a nap later. Good. Putz'd in the garden. Seems OK.

But by 4:30, I was a heaving, sobbing mess. And I continued to be a mess all evening. Even Sunday was a very emotional day. And I'm still verklempt here in the office on Monday morning.

While I'm trying very hard just to accept my lot and make the best of it, I really struggle with situations like this.

Poor H doesn't understand. For him, me not being there highlights HIS loss. For me, being there highlights MY loss.

H just thinks that I want him to die. What he doesn't seem to get is that our situation is what it is because he IS dying.

You are not the center of me

As I've written before , I've struggled with how H's health issues (and the impact to me) have become at times the center of my life. It's all about H and his health and his issues and what he needs and that he's leaving me bit by bit.

And I have fought this centralization (sic), knowing that I can't allow myself to be swallowed up, but usually I got lost in the maelstrom of it. Of course, how could it not impact me?

What I haven't been able to do is to just accept: I am caring for a sick loved one and this is what it is. He isn't any more than he is, which is less than I need. He can't be. He won't ever be again.

And also accept: I don't have the heart to send him away…I couldn't do it when he was so direly ill, so I just have to release that possibility as long as he is weller (sic).

And, most importantly, if I accept it for what it is and don't fight it and rail against it, then maybe I can focus on what I need (which is a lot, admittedly). If I can just get to the point of acceptance that he is what he is and that won't change and that he will continue to be home for now, then (my hope is that) I can be more rational about how I approach my life and what I need.

They say acceptance is the final stage of grief…my hope is that I'm nearing the end of (at least) this part of the road.

Bits 'n' bats

Cutting myself some slack

I've been really ragging on myself recently about: my drinking, my performance at work, my social life, my emotional state, my choices, my depression, etc. etc. etc.

I keep forgetting that this is the cost of my choice to stay with H, plain and simple.

Once I started giving myself some grace for why I'm where I’m at, I felt much better. Forgiving others is one thing, forgiving yourself is harder, I think.

At least it's not home

After a bit of time off last week, I can happily say that work is refreshing and just a bit overwhelming. Home is just bleak.

I used to find that I enjoyed his companionship, that it nurtured me to be with him. That is no longer the case.

Odd that work is more fulfilling than home...not because work is so great, but that it's not home.

Giving up

I've tried a bunch of ways to deal with my depression: exercise, cutting back on my drinking, eating better, …. But it's just too oppressive, bordering on debilitating.

Depression is one of the stages of grief, the one that says "I can't bear to face going through this." And I really just can't.

So, today I will schedule an appointment with my Dr. to go back on my anti-depressants. Goodbye, sweet Johnson…it was nice getting to know you again.

If you know what I mean

I get a phone call from a long-time friend's wife yesterday. H and I have know these folks for at least a decade now. I've been invited to a BBQ on the 4th ("we wanted to invite you...") and I can bring "…a guest of your choice…anyone you want to…if you know what I mean."

I said, "Hmmmm, I'm not certain that I do, but H is taking a nap right now, so let me talk with H and I'll give you a call back."

Was kind of taken aback that H wasn't explicitly invited, nee, he was explicitly not invited. This friend's wife also told me some years ago that she didn't like H being around her (much younger then) kids, that he was "too weird."

And when this woman's husband, my friend, was here a week or so ago for a visit, he pretty much ignored H or at the very least, was patronizing and bossy with him.

While I can't claim that I am always the most patient with H, what I can say is that this behavior is not OK. It is not OK to exclude H from an invite and it is not OK to be rude to him.

I think that part of the reason this bothers me so much is that I've already moved on in my head in many ways, yet I still go through the motions of doing the right thing with H. I don't actively exclude him, I try to listen, I try to be supportive.

Yet, I see others doing what I only dream of: H is now yesterday's news. Next.

Once again, the drama is about H. It's always about him; it always is.

Just enjoy him, redux

I wrote last time about how I should just enjoy what time I have with H. I wish that I did. Frankly, most of the time, I just see him as a burden now.

Now that his health is (relatively) good, we don't have a crisis to rally around, to define our time together. And what we have left after all the crises over the past 10 years is less than satisfactory for both of us. How could we both not be affected?

I think that we both struggle with how to be with one another given our roller coaster. Given where we are right now, if H were healthy enough, or thought that he would be for long enough in the future, I know that he would leave me. And that would be OK. In balance, if he hadn't got so sick, then we would not be where we are.

And while I wish that what has happened to us didn't affect us and our relationship so much…it does. How could it not?

On the occasions that we "click," it is delightful to experience the fondness, humor, and love that we have for one another. But those clicks don't happen much anymore.

And so, I find myself not being able to enjoy him very much anymore. It isn't that he's a bad person in any way (he's actually quite a sweetheart), it's just that the challenges with his health and what it's done to him and to me and to us have changed us and our relationship irrevocably.

Simply put, neither one of us is happy, neither one of us gets our needs meet, and neither one of us knows how to proceed from where we are.

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?

Controlling us with fluoride

One of my local cities is talking of taxing or outright banning bottled water.

H tells me last night, "They're banning bottled water in (city name). You know, the Nazi's gave their prisoners fluoride so they could control them. That's why they're banning bottled water you know, they want us to drink tap water so that they can control us."

I say, "OK, so they want us to stop drinking bottled water so that they can control us with the fluoride in tap water?"

H laughs, "That sort of sounds like one of those conspiracy theories, doesn't it? But it's true, tho'."

Home for the holidaze

Home for a long Memorial Day weekend, 5 days worth. On Thursday, I couldn't wait to leave the office and get home. By Wednesday following, I couldn't wait to leave home and get to the office. I have been on this wheel many, many times.

Happiness, someone once said, is looking forward to going home and looking forward to going to work.

What is it when you can't wait to leave wherever you are, yet don't like where you're going?

Part of me keeps expecting, hoping for something different when I get home. Bargaining I think they call it.

But H was true to form, only up for a few hours a day (eat, bathroom, and a bit of TV (Oprah and Dr. Phil)) spread out over 3 or 4 stints. And when he was up, he was rummy, slow, somewhat odd in focusing on bad things that happen, his health issues, etc…predictable, really.

He keeps telling me "I don't know why I’m so tired; I just want to sleep all the time." I mention that he's been this way for years now, that he hasn't felt well in a long, long time. "I don't know what's wrong with me…must be because I didn't get to bed early enough last night. I'm going to lie down now."

And so I find myself at home alone, again, save for that sick man that sleeps all the time in our old bedroom and a few pets that need my, well any, attention. Everyone in the house wants something from me…needs something from me, yet I am not nurtured here.

To offset my despair and loneliness, I medicate myself with alcohol, etc. Now, I have great concern about my need to drink so that I feel normal, although I haven't written about it here much. Right now, I am able to manage what I'm doing…to keep from sliding further into alcoholism...but I fear that I won't be able to hold it at this level forever.

I remember years ago talking with a couples' counselor about my concerns about my drinking and he said, "Well, it's understandable. But if you're still worried about it 2 or 3 years after he dies, then that's another issue." OK, so now we're 8+ years after that conversation.

But this weekend, I tried and tried to not hit the stuff or just to have less, but without my usual, I just can't deal with what is left for me at home. My distress is too high…so I leave for awhile and it follows me home again. After a few drinks, I feel more normal and can actually function without freaking out; and after a few more, I don't care that I can't function anymore and I don't mind so much that life is slipping away from me also.

By Weds, when I came back to work, my brain is addled from a weekend of imbibing and despair and I'm just sad and feel the distress well up again and am not able to focus on work at all today. Ahhh, just another day with a hangover. And I have lost yet more days in a daze.

Good thing I only drink at home, alone.

Maybe you'll be there

In spite of overwhelming evidence, I find myself still hoping that H will once again be the man that he once was…even just part of the man that he was. But there's ample evidence that this just won't happen. Even tho' his VL has dropped, all the neuro damage won't repair…some will, I suppose, but I doubt that it will be enough to return him to me.

And so, as we continue to live in the same house that we've shared for over 20 years now, I find myself transported into the past. I hear him come down the hallway, open a door, and I am returned to history and I expect that bouncing, healthy, and hot man to appear around the corner with that big happy grin that I fell for so very long ago.

While I love our house, there are so many memories and I respond so automatically and I am filled with heartfelt hope, even if just a little bit and just for a moment. I've realized that hope is just another form of bargaining ( "he'll get better, it isn't so bad, he's not so sick") and just a waypoint-albeit one that I'm stuck at- toward acceptance.

These lyrics from "Maybe You'll be There," written in 1947 by Sammy Gallop sum up the hope so well:

Someday if all my prayers are answered
I'll hear a footstep on the stair
With anxious heart
I'll hurry to the door
And maybe you'll be there

But they keep telling me he will die

In the past decade or so that H has been sick, I've been told many times by his Drs. that he will die, sometimes it could be tomorrow, sometimes it's a matter of weeks or months.

First, in 1997 it was PCP pneumonia and a 3 week stay in ICU on a ventilator followed by months in the hospital and nursing home. And, no, they told me, he won't be going home. But he did.

Then every two years or so as his virus developed resistance to each set of meds, I was told to get ready for hospice. Then a new med comes out and pulls him back from the brink.

In the last 3 years now, I've been told 4 times that he has <6 months to live. So, for two of the past 3 years, he has been on that edge. And so have I.

Thus, the horrible cycle repeats and repeats where I get ready for him to die and he doesn't yet continues to functionally decline. And I get more and more desperate for relief and he does too.

H asked me once why I haven't left him yet. I told him honestly, "Because I love you and they keep telling me that you're going to die and I wanted to be there for you through that."

How do you honor someone you love, your soulmate, while also honoring yourself under these circumstances?

While he may be dying slowly, so is our relationship and, while I may not be dying myself, I'm certainly suffering and in some metaphorical sense, it is killing me too.

Another piece falls away

H and I don't sleep together much anymore.

While I prefer to sleep in our big, cushy bed, his C-PAP machine is just too noisy and I get woken up 3 or 4 times a night, which makes me pretty much non-functional during the work day. So, over time I've moved into the guest room more and more frequently and now I sleep in there on "school" nights and sometimes on the weekends.

At first, I really liked the idea of sleeping alone. I sleep through the night and wake up at 5:30 - 6am without an alarm. Who would have thought that with regular good sleep, I'd have more energy, think more clearly, my mood would be better, and I'd just generally be more productive?

Even tho' many of our other couple activities had fallen away (sex, entertaining, visiting friends, joint projects and goals, intimacy), we still had the comfort, the ritual of sleeping together and of sharing a bed…even if I couldn't always sleep due to noise.

And now H is referring to our bedroom as "his" bedroom and the guest room as "your" bedroom.

Whatever else is going on, we've slept together for all these years and now we don’t. And it makes me terribly, terribly sad…not in the "Oh, I’m sad" sense, but in the visceral, painful gut-wrenching grief sad.

Lonely, but I want to be alone

In my busy life, I work ~10 hours a day and am home for only a few hours in the am and at night. In the morning, I get ready for work and leave; in the evening, I cook dinner and then maybe watch TV or play video games for an hour or so. Very boring, I think, but maybe not untypical.

Unless I get him up, H will sleep in the morning until after I leave for work and will nap through me getting home until dinner time. This gives me some much-needed alone time to do whatever I need to do for me...sometimes, I just sit in a quiet house or listen to music or putz in the garden or watch one of those compelling all-male movies.

This morning, H gets up just as I'm finishing my breakfast and he is distressed.

"What's wrong?" I ask. And I try to sound concerned, but all I can hear in my head it, "God, what now? It was such a peaceful morning." (Would be nice to get the internal monologue and external dialog to match up.)

"Can you get me up when the coffee's ready? So that I can spend time with you?" he asks softly.

"Sure." I say, without meaning it. I won't put the other S word I thought of here.

While I fret about my loneliness and isolation, the little alone time that I do get is precious to me. Just another example of how our needs collide without an obvious solution for us both.

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.

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.