Stepping off the edge

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

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

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

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

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

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

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

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

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

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

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

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

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

Guess my best wasn't good enough

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

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

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

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

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

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

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

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

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

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

An upcoming appointment

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

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

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

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

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

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

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

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

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

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

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

Why go?

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

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

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

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

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

Work too seems rather meaningless…

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

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

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

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

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

Four times a week for all my men

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

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

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

"What?"

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

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

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

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

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

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

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

"What needs?" he asks.

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

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

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

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

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

"That's up to you."

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

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

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

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

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

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

A shorter run, then

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

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

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

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

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

An upcoming anniversary

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

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

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

When I thought of leaving you

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

H asks me, "Do you remember T ?"

"Yes."

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

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

Silence.

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

Silence.

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

Silence.

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

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

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

Whining, whining, & whining

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

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

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

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

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

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

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

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

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

Waiting, waiting, & waiting

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

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

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

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

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

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

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

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

Straight man from heaven

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

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

Over time, we've established an intimate bond.

Physically, from the massage, but not from sex.

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

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

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

When what I don't say hurts me

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

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

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

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

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

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

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

Caregiving takes a village or maybe just a daddy

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

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

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

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

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

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

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

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

Relief & grief

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

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

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

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

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

Then he gets up and I still miss him.

When he bitches me out

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

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

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

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

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

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

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

An exercise in reduction

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

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

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

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

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

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

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

DABA doo doo

Denial, Anger, Bargaining, Acceptance

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

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

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

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

A summer afternoon vignette

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

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

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

"I'm OK." Hissing.

"Sorry to bother you."

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

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

"I'll cry," I said.

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

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

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

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

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

Longings unfulfilled

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

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

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

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

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

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

Connections missed

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