An upcoming anniversary

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

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

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

When I thought of leaving you

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

H asks me, "Do you remember T ?"

"Yes."

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

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

Silence.

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

Silence.

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

Silence.

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

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

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

Whining, whining, & whining

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

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

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

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

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

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

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

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

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

Waiting, waiting, & waiting

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

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

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

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

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

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

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

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

Straight man from heaven

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

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

Over time, we've established an intimate bond.

Physically, from the massage, but not from sex.

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

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

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

When what I don't say hurts me

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

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

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

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

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

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

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

Caregiving takes a village or maybe just a daddy

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

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

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

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

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

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

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

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

Relief & grief

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

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

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

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

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

Then he gets up and I still miss him.

When he bitches me out

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

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

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

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

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

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

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

An exercise in reduction

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

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

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

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

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

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

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

DABA doo doo

Denial, Anger, Bargaining, Acceptance

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

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

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

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

A summer afternoon vignette

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

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

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

"I'm OK." Hissing.

"Sorry to bother you."

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

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

"I'll cry," I said.

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

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

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

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

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

Longings unfulfilled

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

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

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

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

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

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

Connections missed

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

When All Else Fails, Eliminate Your Expectations

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

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

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

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

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

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

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

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

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

Back at the keyboard

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

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

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

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

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

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

A birthday, an upcoming visitation, and a tire

Yesterday was H's birthday and it was a peaceful day at home, thankfully. I made his favorite coconut curry dinner and made some homemade bannana walnut bread. A few cards, a modest gift. A happy birthday song first thing in the morning while he's sitting on the john. Just a typical day.

In a few weeks, we'll have some friends come and visit for a week or so. One of the guys, S, has been here several times already and he's a delightful guest (and a sweet man to boot). His sometimes BF, P, will be coming with for the first time and it will be nice to meet him finally.

H is a bit worried about them coming to visit. He said the other night, "I think that I'll need a wheelchair when I go places with ." What? H tells me that he's having a hard time walking around these days, that his legs aren't working properly...uncoordinated and sore and get very tired quickly. We'll talk with the doctor about this next visit, but my guess is that we're just seeing the progression of the brain damage (walking can become harder).

Make that a spare tire. Sigh. I've been trying to be good, but not good enough. I'm at my all time high weight and while I certainly have gained muscle mass over the past several years, what I'm seeing hanging over my belt is not muscle. Must eat less and exercise more.

Gaming & shrinking

Our life together has shrunk.

From a wide range of activities, friends, intellectual & prurient interests, hobbies, house projects, each having varyingly successful careers at different times, relocations to exotic places, our family of pets.

To what we are having for dinner, how he's feeling, how my job search is going, and most recently some rather distressing games on H's part.

I thank Jeff (comment in last entry) for pointing out that it's just anger escaping his body. I forget that from time to time. H is angry and he is also feeling guilty. If I were in his shoes, I would be as well.

While I understand, hearing things like "I sleep all weekend because you don't want to be around me," "you're embarassed to go out in public with me" and so on is really hard. There's this whole guilt tripping thing going on and outbursts of anger. Putting words in my mouth that basically position him as the victim and me as the guilty party in his victimhood.

A friend of mine refers to this as the "tyranny of the ill."

H has always wanted to be morally superior in all manners: "I'm a good boy, I know what is right, I do what is right (so that I won't get in trouble)." A family of origin issue for him.

And so that continues today. But in the past, there was so much more of our life together the moral superiority thing was small enough in comparison that it wasn't so bothersome.

And, the anniversary incident pushed me very far away and I am disengaging more and more emotionally. I don't think that was H's intent, but it is the result.

The end result is that there is little left for us but the gaming, the setting of the hook to see if I'll bite.

I am not engaging in the guilt tripping. I refuse to. I just smile and don't comment. What else is there to do? If I engage and take the bait, then it opens the door to more manipulation.

My belief is that me taking the bait less and less will result in him becoming less and less happy being at home.

My desparate hope is that it makes it more likely that H will willingly go to the facility. Although I have power of attorney and could "force" him there, I would prefer not to.

It is so very sad to see it shrink like it is. But it is what it is and I am doing the best I can to forgive myself, to forgive H, and to forgive all of our situation and past so that I can focus on loving him. I desperately wish that he would focus on forgiveness as well, but I don't see how that will happen with him at home.

A hotel of my very own

I realized last night that the only reason H is still with me is because I love him. But he is with me for many reasons, including that one as well. I mean he needs my income, my cooking, my occasional cleaning, my comfort, my driving, health benefits from my job, etc.

To a large degree, he lives at our house like a hotel. Sleeps whenever he wants, gets food from me, bills are paid, he doesn't have to do anything. Nor do I expect him too.

A few weeks ago was our anniversary; 24 years in fact. Both of us "forgot" it until later in the week and then I brought it up and apologized for forgetting.

Me: What do you want to do to celebrate?
H: Since we're not having sex hardly at all anymore, there's nothing to celebrate.
Me: Hmmmm. Now, ever since you got sick there have been issues with sex, but we've still managed to celebrate and honor the time we've had together and our love. Can't we just hug and acknowledge this marker?
H: No.

OK. So, we can't celebrate our anniversary now because he's not getting as much sex as he wants (but when we do do it, he doesn't work to speak of). Nothing else that we have had together matters. Even in our most sexual times, there's always been more for us together than just sex.

Boy, do I feel hurt, deflated (sic), and invalidated. Nothing else matters except for the sex? Sheesh. Not me holding his hand in ICU for 3 weeks, not me taking him to the hospital and ER over a dozen times in the past year and being with him & working the Drs., not me worrying about him, helping him in so many ways, feeding him, and trying to provide a home for him in his last days.

Without me, he would be in a nursing home.

This is what prompted me to think about me running a hotel.

Now, I do know that those with dementia have a hard time seeing anything from the perspective of "the other." But even knowing this, what he said floored me.

Everything has now been reduced to whether his willy is satisfied and if it isn't, then we aren't married and have nothing to celebrate. Well, my johnson isn't satisfied either, but I can still love him and honor our time together.

While it has been relatively peaceful on my front for a bit now (I've resigned myself to more of the same), this conversation has emotionally pushed me in ways I didn't expect. And it made me realize just how little I get and get credit for.

588 and obligation

Latest bloodwork for H was good, VL of ~35K and the highest T cell count (588) since he got sick 10 years ago.

Without a long diatribe (must keep entries shorter....), I'm glad for the good bloodwork, but it doesn't really change what is happening at home and how "faded" he is. Faded in the cognitive & participating in life sense, not in the jeans sense.

I do not want the following to be said of me: “You are the type of man that would stay with someone for the rest of his life out of obligation.”

However, I have reason to be worried, I think.