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.

Are you strong enough to be my man?

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

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

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

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

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

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

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

Embrace the sorrow

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

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

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

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

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

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

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

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

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

Like the deserts miss the rain.

Just to get your attention

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

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

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

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

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

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

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

Long, long pause.

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

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

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

"OK, honey. Dinner's ready."

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

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

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

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

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

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

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

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

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

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

Oh, what a busy day I've had

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

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

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

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

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

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

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

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

Realistically, what can he do about it anyway?

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

Take a deep breath

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

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

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

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

If it isn't one thing….

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

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

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

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

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

Living your life for me

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

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

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

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

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

Living with courage

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

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

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

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

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

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

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

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

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

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

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

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

It's going to be OK

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

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

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

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

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

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

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

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

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

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

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

Driving blind

It started with a talk about his depression.

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

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

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

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

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

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

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

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

Horoscope

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

Tuesday, January 1, 2008

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

I feel so much better now.

Happy new year!

3 goals, just 3 seemingly impossible goals

More visits from friends over the holidays. Our long-term friends give me the benefit of the doubt and want to have a conversation with me about where H is at. Those who see H regularly are very worried about him and see what I see. Those who don't are wondering WTF?

And so I am bringing some of them up to speed with my 3 goals and let's be realistic, he's dying…slowly. Yup, new meds…who knows how long. Been here before…death's doorstep and then a magic recovery. I will believe it when I see it.

My three goals are to do the best I can to ensure:

- His well being, so that he gets the medical and mental health care that he needs (as well as the practical things, like food and shelter)
-My well being, so that I can work and be emotionally more stable that I've been (maybe even find a way to enjoy life again)
-The well being of our relationship (I am rapidly giving up that there is any hope here at all and it breaks my heart)

I don't see how to solve the equation for all three goals here. Solving for one of these is hard enough. Right now, I can't seem to figure out how to address any of these.

In any case, it is just more of the same: more drama, more drama and I don't get a benefit from it. And it's all drama that gets in the way of me doing what I need to do so that my life works for me.

Issues about H consume my life (there is so much to do and so little payback), my emotional energy, and dare I say even my well being. My choices are to try to minimize what it costs me (in some way that I don't understand) while he is still here, get him placed (hope waning now), divorce him or him me, or just disappear, which seems remarkably appealing at this moment.

Regardless of how this plays out, I do know that I am done having this cost me so much, but I don't know what to do about that. I wish that I could just make it stop.

Hey, come take a look at this

A good friend of ours, M, came over for a visit and dinner tonight. She has known H and me since the early 80's. It was so wonderful to spend an evening with her.

H felt too ill to be up for very long and went to take a nap for a few hours.

M and I talked about where H is and what has been going on for the past few months. I assumed that H had told her what was going on, but she had no idea what was happening with the whole placement issue, his family's reaction, and my break from work. She did say that H had told her that he hadn't been feeling all that well recently (not news).

I really needed her support after being kicked (while down) by H's family, and, since I've known her for a long time, I trust her judgment. She and H had spent a fair amount of time together recently and she had stories about some odd behavior and some even odder delusions. She expressed a lot of concern about H's decline the past year or so. Yup, I see it too. I'm worried and sad too.

I was talking with her about H's family reactions to placement and all that, about how they think he is fine and able to live on his own. I was relieved to hear her say, "But he is dying, they just don't see it. It's just taking awhile and they don't see him reguarly and he tells them that he is OK, but we know he's not."

Yes. Thank you so much for your honesty and especially your courage, my friend.

I talked with her about my struggles to handle this with love for H and gather his family around him. But instead I get denial and guilt. So, I told her that instead of me worrying about his family anymore, I'm just going to focus on me and doing the right thing for H. They will either come around or not.

She had a great idea: since his family is unaware of how he really is doing all of the time, I should send out a weekly or so email that briefly outlines how he is doing. How much he's been sleeping, how he's functioning, and when necessary, lab results, any special events that happen.

I'm going to try this, but I have to hard sell this to myself as just trying to improve communication with his family…even tho' I'm still steamed at them. M's take is that after a few months of this email newsletter, their denial may begin to crack. Who knows.

I've written about forgiveness being essential…and here is a lesson for me too. I need to forgive them for their anger, guilt, and fear (I have these too) and help them see what is happening with H. And to get them to the table to talk about where H really is and how to be there for him as he makes this transition, whenever that happens.

Reframing this Christmas

My best wishes to all of you for a Happy Holiday Season and, for those of you who celebrate it, a Merry Christmas!

After having two months off of work now (!), I've realized that it is harder to not place H than to place him. Rather than a clean set of boundaries and rules…created by a clean break (sic)... it is all a swirling mush of gray.

He'll have to go somewhere at some point, but in the meantime I need to get my needs met elsewhere and somehow deal with my grief and other issues while he continues to believe that our relationship can get better.

Good idea or not, I wear my heart on my sleeve most of the time. I am just not a good actor. It is hard to know how to be genuine when doing that hurts the man you love.

Snap! Caught that guilt tripping?

The answer is to just love him and be genuine, kind, and speak your truth. Realize that he is a child in many ways, can't meet your needs anymore, and just can't understand what is happening. Try to hide what you need to do that will hurt him or that he has no need to know. Yet...holding back in this way does not feel right after 25 years with this man.

H has been back from a visit out of town for about 6 weeks now. He has since spent 4 of those weeks in bed, first with seizures and now significant fatigue as his viral load goes up as his current antiviral med effectiveness wanes (again).

While I don't mean to be cruel, what happens with him doesn't matter in many ways. I believe that he will get sicker and die sooner rather than later and my life will go on and I will be the one that has to make it all work for me. I just can't allow what is happening with him to bring me to my knees emotionally, physically, & psychologically again.

My focus has to be take care of me. Nice sentiment this time of year, no?

When one goes out, the others stay lit

Each year, I care less and less about days of note: Christmas, our anniversary, our birthdays, Valentine's Day. And while I understand that days like these are difficult for many, what is hardest is that I just don't feel like celebrating with H anymore. Why celebrate when you are so profoundly unhappy?

Yet, H wants to celebrate and uses guilt as a way to try to get me there too. Doesn't work. The MO is that if you don't agree with whatever they want, then the guilt comes out to push you there. "You don't want a tree? You've never liked Christmas, it's always a struggle to get you to do anything. "

Now that the seizures are under control and the Holidays are here…no, I really don't want to get a tree and I really don't care about Christmas. More of the same....

Bit by bit our relationship deteriorates and I'm more content than I like, just watching it float by. No kisses in the morning, no kisses going to bed. Another piece gone and then another. Over time, as our life together continues to shrink, only the love remains...for now. I am worried that we will end up hating one another if this goes on.

What the hell am I doing here?

H was crying in the kitchen this morning, "Why is my life this way? I hate my life."

Indeed.

Do you see what I see?

While H's family may not see what I see, in many ways, it doesn't really matter. They are just playing out a script that they have: it can't be H's health…our son/brother is not dying…it must be you, (a single man's name). They equate me trying to address "he needs more care (really), I need to focus on work, and our relationship is suffering" with divorce.

Ironic that they equate my efforts to help H and me as me wanting to divorce him. Such BS.

H was gone for a few weeks and had been home for about the same when the seizures started again.

Petit mal seizures this time; they got the grand mal seizures under control (finally) about a year or so ago, but he still has minor episodes. They start with just his hand, then his mouth…after a few days, he could not really use his hand, eat without drooling, or even walk down the hallway WITH HIS CANE without bouncing a few times off the walls. And each day he got more and more confused…seen this all before.

We've seen his neurologist, who says, "I don’t know what to do if upping his current meds don't work," in spite of him being one of the top guys in his field in this area. We'll talk with him again tomorrow.

Good news is that H's seizure episode seems to be winding down, but he sleeps even more now with double his regular neuro med dosages.

I find the irony delicious that after H's family told me "he's fine (sic)," H has had another unfortunate episode, which has rendered him unable to care for himself much the past few days (e.g., usually he can dress himself, but I've needed to help him this week). Likely, it will take another week or two for him to bounce back…even so, it seems that with each seizure episode, even "small" ones, he loses ground overall.

I must say that one of H's sisters has been very understanding and supportive. She is the only one of the nuclear family set that hasn't gone on the attack, questioning my judgment, experience, and motives.

The sad thing is that if H and his family don't support me in my efforts to address this situation (instead of denying it further), I may need to actually do a divorce just to get him the care he needs while also saving myself. So much for trying to improve our relationship for the time he has left.

Just one of those great self-fulfilling prophecies…then I really can be the bad guy for the conspiracy theorists.

And now, marriage counselling

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

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

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

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

Simple: H is afraid.

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

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

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

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

Guilt song trilogy

Low burn

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

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

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

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

I am not trying to steal from you

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

"Dr. says you are," I say.

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

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

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

I object to the word ridiculous.

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

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

The bitter aftertaste of denial

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

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

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

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

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

Enjoy the silence

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

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

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

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

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

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

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

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

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

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

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