Me too, honey

'Twas talking with H last night at the dinner table about how he's doing. Difficult to get him to talk about this...he's suspicious when I ask about his health and I have to remind him that I'm asking because I care.

H asked me if I wished that he had not stopped taking his anti-virals. I said, "Well, I support whatever decision you make...I told you that. But...."

"Yea, I wished I hadn't stopped taking them, (asingleman's endearding nickname)," H said.

"Yea, I'm worried that they won't work for you, H," I said.

"Well, I'm not worried. If they don't work, then I die. Why does it matter? No one cares, anyway," he said.

"I care, our family cares, lots of friends care. Many, many people love you and would miss you."

"I wish that people would call me or come see me then," H says.

"Me too, honey."

Monday snippets and !s

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

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

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

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."

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.

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.

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.

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.

But what about them…

I was talking with H this morning over a late breakfast. He was telling me that he's been talking with his family about "arrangements." Something along the lines of 3 weeks at one sister's house, back home with some weekends with his local sister, then off to his parents for another 3 weeks or so.

I know that travelling is hard for him; being away from home is hard for him. But he isn't talking about that.

What he's telling me is that "mom and dad have their own issues…dad pretty much has to care for mom these days…and I would just be adding to that." "And (out of state sister), the last time I was there, the kids had issues because of (this or that) reason and I can't get my own bathroom there and you know how I plug the toilet sometimes." "And (local) sister, she has a full house and how can she have me there so much? She's got kids, pets, there's no privacy."

I don’t say anything other than, "Well, yes, they all have their own lives. Dad has made his own bed because he allows his sick wife to run his life. At least he's retired."

Not a surprise, but nothing about what I need in all this.

Can you tell I'm just a bit angry?

Now that I have your attention...

After a stormy late last week and weekend, it's calming down again.

So, now the family is rallied and taking H off my hands for awhile. I got scolded for acting without checking with them first, but, hey, they don't participate much anyway. The local sister is so guilt-ridden that she tells me that she's embarrassed to talk with me.

Yesterday, H went to his sister's in town for Sunday afternoon so I could "have a break." I slept the whole afternoon. I am so tired I can hardly focus at work today.

H is leaving for his other sister's place out of town in a week or so for 2 - 3 weeks.

I am still planning on filing for Family Medical Leave as I am so exhausted, I can hardly get out of bed. I feel that there is some risk to my career in doing this, but hey, I'm already in tepid-to-hot water, and FML is government-protected.

I DO know that if I stay and work, I won't be doing any better work than I have been doing and will likely do worse: my ability to concentrate is getting worse, my motivation about the work is non-existent, and my attitude continues to decline.

Hopefully, then, I'll be able to have some time off from work at the same time H is not at home. Not certain just what I'll be doing with all that time, but I likely will be sleeping a lot.

Clearly, his family is feeling some guilt and trying to hook me. I'm not letting them….

"You can't just send him away to die!" they said.

"He is dying anyway, you just don't see it. I see it every day."

"I just wish that he wasn't so terrified," his sister says.

"Me too. It's hard to see him so afraid."

They have heaped the guilt on "there's got to be an alternative to taking him away from his home and losing his independence," "when you marry someone, this is what it means (so it is divorce, then)," and "I would never do that to my husband."

To all that I said, "Stop talking divorce…not only is it not true, but it's not helpful. Look, I'm not the bad guy just because I can't cope anymore. Everyone is telling me what I should or should not be doing and feeling, but no one has been walking in my moccasins for 10 years."

While I want to be angry with them, I really don't have sufficient energy for that right now…conserve the energy for what matters.

All that I care about right now is 1) get H out of the house, even if just for a few weeks , to clear my head and rest (check) and 2) get a break from work (file tomorrow).

I haven't given up on placement for H, just a bit of a pause in the program.

Uh oh...

So, just got off the phone with H's sister and dad. Apparently, the whole family is in an uproar because I've "decided to send him off to die at a facility that is a 'cemetery'. People die there," they said. "Yes, they do die there. It's a hospice and nursing facility."

They are also upset because I have not taken some steps they wanted me to take some time ago to "reduce my burden." Translated: bring in some care from outside. I keep coming back to how this won't help me, but "if you had done that in the past, you might not be in this situation." "That may be true, but here is where I am," I say.

H is terrified they say. He "is still cogent enough to know that he's being sent off to die, that you're trying to get rid of him." And everyone is crying about this.

Yup, me too.

Sigh. I told them that I'm willing to consider other options, but I'm not certain what they are.

When I talked with them earlier, they weren't happy with my decision, but supported it. Now...guess it's sinking in a bit more and, of course, they don't want H to be terrified (neither do I), but he is very afraid and has talked with them all. I would be too.

And they chew on me for making a unilateral decision and presenting is as a fait accompi.

OK, so I walk through all this with them. How conflicted I am, how desparate I am, how this is bad for my health & his, how I just can't do this anymore, I'm at risk of getting fired, etc. Fine, you all recognize that I need help, so help me...I've been carrying this for 10 years.

"But you promised that he wouldn't go until he wasn't aware of where he is and that is what marriage is about."

"I'm sorry that I can't keep that promise. I shouldn't be making a promise to someone when they're crying, " I say.

Sadly, I agreed to put my arrangement on hold pending: looking at other places besides the "cemetery" (sic), letting H move into the other room (why this helps I don't know), and have a "family conference" about what we're going to do.

Funny, they never asked for a family conference before about him. Guilt raises its ugly head, no?

When I thought of leaving you

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

H asks me, "Do you remember T ?"

"Yes."

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

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

Silence.

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

Silence.

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

Silence.

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

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

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

Straight man from heaven

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

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

Over time, we've established an intimate bond.

Physically, from the massage, but not from sex.

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

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

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

Connections missed

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