All H, all the time

Well, I'm trying to give y'all a more balanced view, as not all is bad in my world (although incredibly crazy)...but you know, it is still bleak with H. In many ways, my crazy job is a respite from my caregiving and issues at home. And for that I am glad that I have a distraction.

It just seems that there is always a health crisis/issue with H these days...if it isn't one thing it's another. He's lost 30 lbs due to GI distress, had to have his gallbladder taken out, has had major issues with obtaining some meds, a whole pile of stupid Dr.-related stuff, and serious side effects from some new meds.

Latest is that his virologist is in collusion with his pain Dr. to reduce the amount of pain meds H is on. The pain Dr. upped and upped his pain meds until she talked with his virologist. Now, everyone's in an uproar again.

It nets out to, I work and I deal with his health issues.

Even after having his gallbladder removed, he's not really eating much...even his favorite cinnamon rolls sit on the counter uneaten. And he still sleeps almost all of the time. So, he can't even make a sandwich for himself and won't eat what I leave for him.

I talked with him about how we might need to have someone come in during the day and make certain he eats. He thought it "ridiculous" that someone has to "babysit" him. I told him that Drs have told me to expect that at some point he will not be able to do some aspect of daily living activities and that he will need help.

H said, "Yea, OK, I know that is where I'm headed. I'm sorry. I love you (asm's endearing pet name)."

"I love you too, H."

Halloween snippets

Family visits
H's dad and youngest sister (G) came for a visit; they live in a far away part of the US.

The occasion was a wonderful soiree for the middle sister's 50th B-day.

G hasn't seen H for over two years now. Before she came up, H told her that he "is not sure he can keep doing this." And when she saw him, she was shocked at how thin and frail he was compared to two years ago, the last time she saw him.

G is wanting to come up to see H again before the end of the calendar year. And I am glad for that because there is no way that H can make the trip down to see her.

My dance card is full, thank you tho'
On a related topic, H has to have his gallbladder removed and they also found an irregular heart beat when they did an endoscopy.

So, off to a cardiologist for a pre-surgery screening (never heard of this before).

I'm terrified that H won't wake up from the surgery and I told him so. He said, "I know, (asm), but it won't be bad for me, I'll be asleep. Know that I love you."

Present is as present does
I strive to be fully present when I'm with H (well, just in general). As a result, I find that I say things I don't expect, such as, "I'm tired of working all the time...at work, at home...I have to do everything now...it's just not fair."

H responds, "I'm sorry..."

"Me too, but I know that you would change it if you could and I would too. But it is what it is, so let's make the best of the time we have."

"Is it OK if I take a nap?" H asks.

"Of course, honey."

This wonderful feeling

In spite of it all, H and I are better together these days.

Maybe it's that the medical stuff is so routine now...even with new issues... or we've reached some type of détente in our expectations for one another. Or maybe we're both getting closer to acceptance. But on occasion and more regularly, that gentle fondness is there in the forefront and we talk, laugh, and playfully joke with bad puns...just like before.

Oh, and I finally told H just how lonely I am given that he sleeps so much and that I'm tired of being in our house alone...I just have to get out, which disturbed him greatly. I told him that we both wish it was different, but it is what it is.

So, for the past few days, he's been in bed less...up when I get home, sitting in the kitchen while I make dinner...even making some simple joint plans for the weekend…routine stuff that other couples perhaps take for granted, but that we haven't had for so, so long.

While I'm enjoying his company a lot right now, I do find myself being mistrustful that this is just a brief episode that won't last. And a tad pissed off that he's been missing in action for so long (e.g, for much of the past decade). And, for some reason, my grief keeps coming up.

But, all I can do is enjoy it this wonderful feeling while I have it and while I have him.

And, for right now, I am grateful.

First snippets of Fall

Doctor, doctor

As expected, H's health continues to be up and down, but mostly slowly down. Most recently, he's been having stomach pain and is having a much harder time walking than ever before. Some of the walking issue is his dementia and some of it is that he has a somewhat lame leg and hand due to a stroke about 15 years ago. H said to me last night, "I'm so mad at how frail I've gotten. I worry that I'll never recover...."

H and I joke about his dance card being full (on both sides) and now we are talking about stapling another dance card on so that we can add a potential gall bladder issue as well as the need for ongoing PT, not to mention more trouble holding things due to shaking, new pain now in his scalp from neuropathy, etc. And he's not eating very much and is down to 140 lbs again.

So, a series of Dr. visits this week...everyday this week, a new doctor, an old doctor, a referral, etc. And then next week, Dr. appts for him 3 of the 5 days. Hard to find the time to work.

Now, we haven't had a spate of Dr. appts like this in a long time (thankfully), but even tho' I am more than completely capable of dealing with it all, it bores the hell out of me. And while I am sympathetic and want to help, I just wonder when this will all stop...for H's sake as well as mine.

A death in the family

Our young Siamese cat finally died; he should have lived for 20+ years as Siamese are a very long-lived breed. Last Tuesday, I found him stretched out on the kitchen floor in a pool of his own (well, you know) at about 6am. And he had been coughing up blood overnight. We knew that he was close, but like most folks, we were looking for the right time...not too soon, not too late...you know. I feel really bad that we didn't put him down before he got to this point.

I went to comfort him...not knowing if he was dead or not...and gently petted his head and called his name. He cried and cried and cried and cried...wailing really...and his face was sunken in (dramatic since the night before) and his eyes hollow and red. It was like knives into my heart...my poor boy...he is only 7 years old. He was one of my favorite kitties of all time. He cried for hours until we got him to the vet when they opened at 9. I can still hear his crying in my head a week later.

So we go to the vet, H and I, to put our friend down. Now, I am a complete sobbing mess...can't even talk to the vet. H to his credit was very calm and just spent time telling the cat how much we loved him until the end. H hardly shed a tear. But I blubbered all the way there and back and the whole time we were at the vet. Last cat we lost, I shed a tear or two, but sheesh, nothing like this.

I think finding the cat in the state I did triggered a lot of my grief around finding H in in similar states (many times) over the years. If I had found the cat dead, maybe it wouldn't have been so bad. But seeing someone you love so sick they can't raise their head, looking so different from just the night before, and crying and crying and crying...very hard.

I am so glad that my kitty is relieved of his pain and suffering; I am glad that we were able to do that for him.

September snippets

A break and a new role

Had a few weeks of vacation last month and travelled a bit without H. Like before, I arranged for a trained caregiver to come in to keep an eye on him and to cook. 'Twas wonderful to get a way and when I came back, my first thought when I saw H was, "Oh my, this man is a mess...poor guy." In this case, the break gave me some perspective and increased my sympathy for him.

Came back and started a new role at the same company I've worked at for over 8 years now. I am a bit daunted right now, but it's great to have something to focus on that is challenging. Takes my mind off H and all that stuff.

Another half century

H's sister is turning 50 this month and the extended family is coming to town for the soiree.

At first, H told me that "I have nothing to wear." But I explained to him that he did. Then he said, "Well, I don’t know if I want to go because I won't be able to stay long." I then offered to get a room at the hotel where the party is being held; he said, "No, I'll spend all my time in bed."

Finally, he fessed up: "I don't want them to see how thin & lame I am...that's the real reason I don't want to go."

I don't know which is worse for H & his family: him not going "because he is too sick" (the reason he couldn't attend his mom's funeral out of town) or him going and looking very thin, frail, and sick. I told him that they all know he is sick, but he said, "yea, but they don't have to look at it."

Another sick one in the house

One of our cats is quite ill with a feline virus; it's not FIV, but is similar. And so the cat is losing weight, has been in and out of the vets's office, and is sleeping much of the time.

Our cats are our kids and this distresses H a great deal. He said to me, "ASM, can you please give the cat his medicine...I can't do it and I don't want to see you give it to him. I just can't stand to see him shrink away, gag on the medication, and...we know he's going to die soon, but who knows when. I just can't deal."

"Honey, I understand," I said softly, "it's very much like my experience with you. I'll take care of the cat."

H said, "Oh, it is like me...how do you do it?"

"Because I have to and no one else can or will."

"Thank you," H says, now crying in my arms.

How I cope

Thanks for your comments to my last post. I appreciate the helpful advice. Even tho' I crabbed a bit in my last post, I do take steps to cope.

Here's how I've finally learned to cope with caregiving after 15 years of it:

• I have a great therapist who has experience with dementia & end of life


• I take antidepressants


• I get away for one or two days a month to get a break


• I get away for a week every two or three months for work and I add additional days when I can


• I sit in a quiet house and just breath when H is sleeping


• I have a job that is not too demanding (e.g., I am under employed) that I generally like


• I have (a lot of) help around the house: cleaning, yard work, and for H: social worker, visiting RN & volunteers, the occasional doctor, caregivers for when I travel


• I try to simplify everything to reduce stress; for example, bills are on auto-pay (mostly), I use a meal service (thescramble.com) for meal planning & recipes, getting someone else to set up H's meds


• I get regular exercise, both at the gym and in the garden


• I eat healthy foods with only the occasional pig-out on ice cream


• I no longer drink except when travelling


• I am ruthless about prioritizing my time in this order: me, H, everything else


• I try not to go to every Dr. appointment with H


• I piss & moan on this blog, which helps me tremendously


• Bit by bit, I continue to reduce my expectations for H and my interactions with him


• I've realized that H is pretty demented and that he won't change; all I can do is change my reaction and approach


• I have learned to listen first to H, then pause, then think before I speak (he often doesn't mean what he says, I found out)


• I don't expect H to get better anymore


• I take one day a week, usually Saturday, and just do whatever I want, whenever I can


• I fantasize about what life will be like for me after H is gone


• I'm plotting to complete my bucket list whether H is here or not


• I fancy myself a single man, even tho' I'm caring for my long-time partner


• I accept that this situation is horrible for all parties and that H is certainly hurting too


• I remind myself that I make the choice to be the caregiver for H...no one "makes" me

Now, this isn't about thriving, but about surviving. Thriving is another thing entirely and I'll write about what I think I need to do there some other time.

Thoughtful, loving alternative

Well, I've been thinking about some comments to my prior post (Snippets Again), specifically about choice when dealing with death and grief. And I thank my gentle readers for their comments.

Here's the deal: yes, it is a choice to wallow in pain and grief, to a degree.

But, the reality is that if I am fully present with H, as I try to be, then I am sad...both for him and for me. Simple.

Sure there are gifts -- important ones that I have blogged about here -- from this experience, but after 14 years of this, I am worn out from the loss and burden. I have great hope for me and my life, but not for H.

Last night, H was telling me that he was terrified that someone was going to show up at our door, arrest him for having AIDS, and take him to a concentration camp to be executed, but not until they delighted in his withdrawal from his pain meds. He was sweating, red faced, almost crying...abject, visceral fear.

I calmed him down, but this type of thing is a frequent event at our house these days.

How can I not be sad and not be affected every single f*!@ing day when the love of my life is delusional and terrified, can't walk hardly at all...even with a cane, and can no longer make a sandwich?

I would love to hear how to not feel sad and "chin up" or "man up" under these circumstances.

It is one thing to judge and lecture, it is entirely another to present a coherent, thoughtful, loving alternative.

Snippets again

Oh, the drama of it all.
H has always liked reality television, such as Wife Swap, Nanny 911, etc. But now, he's completely focused on RTV (Reality TV), especially those shows that include yelling, screaming, fist fights, police takedowns, acerbic meter maids, crashes, etc. The noisier the better.

Grieving in the dark.
When the house is quiet at night, when H and all the animals have gone to bed, that's when I feel the saddest. Mostly, this is when I can finally hear myself think (see above). It's only then that I feel really, really sad for H and all that he has lost. And I feel sad that our lives have ended up where they are. I wish that there was some way to grieve, get it over with, and just be done with this mess…I have been grieving for over 15 years now. Ironically, I would have grieved less if he had just died 15 years ago.

As much as I grieve in the dark, it also comes up for me at odd times...in the grocery store, at the dentist (?), driving to work. I'm sad because I see what H has lost...pretty much everything at this point. And I'm sad that I can't help him, really. Hell, I'm sad that I can't help myself. And I'm sad that he's afraid...I am too.

Stuck in the past.
As I stumble into the future (which keeps arriving before I'm ready), H is rooted firmly in the past. He focuses on his anger towards his parents, getting arrested 20 year ago for minor possession, on how our relationship has never been what he wanted, how he was disadvantaged in school, how he had strokes as a child…. What can you say to someone who is living anywhere but here and now? Meet them where they are? Tell them to get over it? Just nod and listen?

Letting go.
H and I are moving farther and farther apart...at least I feel that way more and more. We spend less time talking than ever before...some of that is that H doesn't know what to say; I don't either. What can I share with him that he'd understand? What can he share with me that is relevant? He often sits in the office with his back to the blaring TV, staring at his computer screen. We are hardly even in the same room in the house anymore...a just metaphor for our life together.

Can a marriage die even when the loved one doesn't?

Amazing, helpful, and sad to read this.

The bane of proximity

Both H and I struggled upon my return. Once I came back, had a good night's sleep, and I needed to do something for H (make dinner), all of those resentments, fatigue...the burden came rushing back...less than 24 hours after getting home.

Yea, holding H in my arms was wonderful, but after the initial elation, it was the same ole, same ole feelings of "I don't want to be here. I am so done with this. Etc."

And H was so looking forward to my return, but of course, he, like me, had unrealistic expectations for what it would be like once I got home. It didn't turn out the way he wanted and so he's been in a major funk for over a week now.

It is the old cliché that absence makes the heart grow fonder. That is indeed the case, but I wish that proximity didn't undo that fondness so quickly.

Last night, I was sitting at the dinner table with H and he blurts out, "Can't I just die?"

I said, "I'm not certain what to say, honey."

"You don't have to say anything. I'm just tired of not being wanted...even S(his friend with benefits) doesn't want me anymore." He's crying now. And yet again, I'm stuck between wanting to comfort him and boundaries that I know need to be in place for my sanity.

And it pains me to see him in pain. In spite of it all, I don’t want him to experience pain, but that is completely unrealistic as all he has had for the past 15 years are losses.

I wonder what his experience really is. Most recently, he was expressing alarm to his nurse and me about the oil spill in the Gulf, volcanoes, floods, & earthquakes all make it likely that he won't be able to get his medications when he needs them.

In any case, the up-close view was just as I left it. I blissfully forgot the burden while I was away and the love for him took center stage, where it belongs. Another good reason for placement.

The beauty of distance

I've been in NYC the past week for work and have enjoyed being here in the city with my work crew. Must say, tho', that I'm far too old for the combination of working on the road, the time zone change, and the all-night party that the city can be. Yea, and a few hangovers as well.

As in the past, when I was getting near to leaving on this trip, I couldn't wait to leave and get a break. And now, as has also been true prior, I'm looking forward to seeing H again. Odd to go from being angry at H for all the exhaustion and burden to missing him and looking forward to seeing him again.

Regardless of all that has happened, the fondness and love for H is still there.

I find the emotional whiplash exhausting...an exhausting way of being that has dogged me for over a decade now. The gifts - compassion, being able to set clear boundaries and keep to them, patience, respect for my own mortality (and his), and belief in the survival of love in spite of overwhelming odds - are great, but so is the cost.

It would be easier if I were either consistently resentful or consistently in love. But that isn't the way it is anymore.

When I see other couples, I wonder what their lives are like. What it must be like to not have such a whiplash every year or two. What it must be like to stay in one frame or another: either resentment that builds over time and results in divorce or love that builds over time and the sense of the adventure of a life shared and all the excitement and comfort that brings.

But, from where I sit now, some 3,000 miles from home, I'm excited to see H again and to hold him in my arms. I wish that I could hold onto this feeling once I get home in spite of the burden of caregiving.

Frail is as frail does

Not much to report these days as H's viral load continues to stay down and life grinds on.

Happily, I'm heading out for a business trip next week to NYC. For the first time, I've arranged pro caregiver coverage while I'm out of town. I want someone who knows what they're looking at to keep an eye on him, help him with his meds, and cook for him. At least I can go with a clear mind, knowing that I've got coverage at home.

Difficult to see him so frail and shrinking. I've been stuffing him with his favorite rich foods (well, stuffing myself too), but he's barely maintaining his weight.

In the past, he's been frail, but then has bounced back. This time, he's staying frail. We were sitting in the hot tub and I was holding his hands...small, bony, weak, no grip anymore. And holding him in my arms...he's shrunk so much.

It's one thing to intellectualize the decline...to observe it and report...it's another thing to feel it with the arms that have held him so many times.

Why isn't it better?

When H is sickest, needless to say, our relationship declines. He's not cogent, feels awful, and there are other priorities.

But then, when he gets better, he goes on about how our relationship isn't what he wants it to be, that it ought to be better. Yet, he doesn't remember what's happened.

So, I find myself with someone who's been asleep for close to a year and then wakes up and wants their life to be what they want.

And, he can't understand that when he's sick, our relationship is all about me being guardian/caregiver and the last thing on my mind is what is going on with our relationship. I have other concerns, such as, "Is he going to die?"

He'll tell me that he's unhappy about this or that aspect of our time together and while I want to be sympathetic (and I am) to not getting needs met from a relationship, part of me just wants to slap him. "Don't you realize that it's like this because of your health? How can that not have an affect on our lives together?"

"Well, I'm better now," is what he'll say, "so there's nothing to worry about."

Yea, but tell that to person with PTSD. The event is over, but they are irrevocably changed, and not for the better

I'm sorry you're stuck, redux

Last night, I talked with H about his comment: "I'm sorry that you're stuck caring for me."

I thanked him for acknowledging what a difficult situation this is and I told him that I don't blame him for it.

"Where we are is because of your illness, not you," I told him. "I don't blame you for this, I blame your health. I wish that it was different, but it is what it is."

(Lots of conversation not worth repeating here.)

The core issue is that H can't accept that our relationship is irrevocably changed...he keeps telling me that I'm "punishing him" by not re-engaging in a romantic relationship as soon as he's feeling better.

I told him that "I can't deal with the whiplash. You're going to die, no you're not, then you're going to die again, then you get better and want me to be the loving man that I was earlier in our time. You don't remember last year, you could hardly get out of bed, couldn't make a sandwich, and now you want me to act like nothing ever happened. I can't keep up emotionally."

"No, I don't remember what happened last year, but I know I was in bed a lot," he says.

I continue, "If you want me to show up, you need to show up too. And you haven't for years, except for a few months at a time. I do love you H and I want to make certain you're OK, but I'm mostly a nurse now anyway, not a partner."

And then the divorce word comes up again. Sigh.

So we go through all of that again. And I told him that I'm not going to make him leave, but if he wants to, let's talk about that, but where will he go?

The whole thing netted out to him begging me to place him at the facility that we have planned on using when the need arises. Then he told me he didn't want to talk about this anymore.

This morning, I asked him if he remembered our conversation last night and what he thought about it.

"No."

I'm sorry you're stuck

I was watching TV in the living room and I hear H talking to me from the kitchen.

"I'm sorry that you're stuck caring for me," he says softly.

I couldn't say it's OK, because it's not. I couldn't say I'm not stuck, because I am (tho' by choice, I suppose...). I couldn't say that I don't want to do it anymore, even tho' that's true.

I didn't know how to respond, so I didn't.

Losing them over & over again

At his sickest, I'd get an occasional glimpse of the old H...and that would make me want more. Reminds me of taking a drag on a cigarette after having quit smoking; I always want more.

And now, I get to see more of the old H...bit by bit he's coming back. So, extending my metaphor, I get to smoke the whole cigarette. Of course, I can't just smoke one; I want more and more.

Now, this has happened over and over again, where H is at the brink (and a "zombie") and then he gets pulled back and returns to more of his former self. The miracle of modern medicine.

Problem is that he's weller just long enough for those fond feelings and that love that I have for him to well back up...maybe even some hope and optimism that things can be different, that my ole H will return to me for good. And as he gets weller, then I also dread the inevitable decline again. Then he moves back towards the brink, there is no H there anymore, and I need to steel myself up for a possible death, hospice, etc.

What is hardest is that I fall again for him as he gets well, then I lose him over and over again as he teeters on the brink.

Dementia is called the long goodbye and it is.

Back from the brink

A few months ago, H's viral load was 330,000...the second highest that it's ever been. Now, 3 months or so into the next round of new meds, his viral load is 100. Yes, 100, no comma.

Back in December and January, as I have done several times now, I was steeling myself to get hospice involved. And, like before, I made the phone calls and talked with the Drs.

But a few days ago, I came home to a vacuumed house, the beds made, stuff put away, and H making a sandwich for himself. Something is different…and then we got the news about the drastic drop in viral load.

A long-time friend of ours told me yesterday that last Fall and Winter, H was a "zombie" and that it was hard to have a conversation with him. And now, she sees the improvement in H as well.

"You know, , I don't understand how you do it," she says.

"Do what?"

"He's dying, then he's not dying, then he's dying again, then not dying again," she says.

"Yup it's a white-knuckle ride. It's happened so many times I can't even remember them all...and it will happen again, most likely. The doctors don't know and I don't believe them anyway at this point."

"Yea, but how do you do it?"

"Well, it's really hard. I know that I have no control, so that doesn't bother me much anymore. I have a good therapist and I take anti-depressants. But, at the end of the day, I can't change what's happening to H and I accept that."

"Right, but how do you get up every day and do what you do while H goes up and down?" she presses.

"I think that I've compartmentalized a lot of this by now...I've divorced myself in many ways from what's happening with his health and I've divorced myself from romantic feelings for H as a survival tactic. And I don't expect him to get any better...I expect him to get worse...so I'm not disappointed. But, to be honest with you, I don't know how I do it. I just do it because I have to."

While I'm glad that his viral load is down and he's more himself, what really bothers me is that I know he'll go the other way again. And then they'll pull him back again. And that this will drag on and on. And when I indulge this line of thinking, that's when I don't believe I can cope.

Can't go home

Sad news...H's mom died unexpectedly last week. We're not certain, but we think the cause was an accidental overdose of pain medication.

Needless to say, H is beside himself, not just because his mom died, but also because he's not able to travel to the funeral due to his health. Fastest travel times to get to the service is about 15 hours and there's just no way he's up to the travel, even if I travel with him. He can only be up for 3 to 4 hours at a time at home….

It took a long time on the phone for his family to get that his health is just too bad to travel; maybe not being able to attend his mom's service will help get them out of denial. "Oh, you'll just be tired...we're all tired." You have no idea, folks.

After the service, which we participated in via Web video, H said to me, "I'm so glad I didn't go. That trip would have killed me."

H has been having dreams where he's lost, can't find his car, his cell phone, or his cane. And he can't seem to get home, no matter what he tries. In fact, in his dream, he's not certain that he has a home to go to, but he knows he can't stay where he is.

Navigating in the fog

In one year, H has gone from being able to fix food (a sandwich) and remembering to take his meds to not being able to. Went from being able to operate the washing machine to not being able to. And from using the oven to not being able to figure out the dials…the microwave is even harder for him to figure out with all the buttons on it.

Given all that, he still has his moments of cogency, which makes this much harder. He's still there, but he's just not able to do much. And, while he can do the core set of ADLs (dressing, bathing, transferring, etc.), he can't shop, can't make food or even remember to eat it if it's prepared ahead of time for him, can't do housework (including laundry), can't really get around (drive), can't remember to take meds, and can't do anything related to money (except tell me what I need to buy).

So, I'm looking for additional help for home and that could take any number of forms. Specifically for when I travel, but I'm wanting to get it in place because over time it will be more than just when I travel. I've think I've solved the issue for when I travel in the short term, but there are larger fish to fry.

I know that I am not willing to pay myself for caregiving as this not only sets a bad precedence, but is also too expensive for us to afford. Now, if it were for a short time, OK...we could figure it out, but it's not. Besides, if H needs full time care, I don't want him at home anymore for any number of reasons.

So, I talked with H's Dr. about hospice and am working that angle. While H likely has more than 6 months to live, his care needs are increasing due to his dementia. H's visiting nurse tells us that she has several guys on hospice care. And I'm exploring other alternatives as well.

Bottom line: I'll figure it out. The reality is that I need the help and so does H. As long as I can keep him safe and cared for at home without a full-time caregiver, I will.

It was striking to talk with H's nurse and Dr. about hospice with H sitting there...he just didn't react. I'd be terrified (he was in the past) at the notion of hospice. I just don't think he's home very much anymore.

But, if I had a magic wand, I'd love to wave it and have him well again, or dead, or already placed somewhere. I am so not looking forward to the next year or so.

You can't incarcerate me

I've been trying to follow the advice of a friend and involve H more in care decisions. As I'm heading out of town this weekend for work, I was talking with him about how we can cover his care needs while I'm out gallivanting about the planet.

For a long time, he's claimed that he's "just fine" when I travel, but I know better. But it is hard to convince him of that. Very difficult to involve someone in their own care decisions when they can't remember what they need or that they need it at all. Yet, not involving them creates other issues.

I said, "I'm worried about you when I travel...taking your meds, eating...how can we ensure that you do these things when I'm gone? What are we going to do?"

For some reason, H has forgotten to take his meds in the evening two days in a row. This is really, really bad news for him for lots of reasons...at least of few of them life-threatening.

And I used to track his meds and when he takes them, but I forget too and assume that he does it. Just one reason why H and I aren't the best care team for him.

"Honey, if you forget your meds when I'm here routinely, how do we make certain that you take them when I'm gone?"

"I always take my meds and I don't need the help," he says.

I say, "Honey, how can you say that? We just talked about it. Is it possible that maybe you don't know what help you need? That you can't remember what's going on?"

He's getting defensive now, "What do you mean?"

I say, "Well, for example, when you wanted a med holiday, I told you that you had done that before years ago and that you became very sick…."

"I did?" he says. He doesn't remember either the events or us talking about it.

"Yes, so please trust me that I'm trying to keep you safe while I'm not at home. I'm talking with you so that you're involved in your care decisions."

H says, "Well, you can't incarcerate me!" (I'm thinking...honey, I don't want to do that, but what options do I have when I'm gone or even in general? And a part of my brain is saying, "Watch me!")

"That's not what this is about, H." At this point, I'm sitting in a hall of mirrors.

While a bit frustrating, this conversation was very insightful for me. He sees placement as incarceration and he clearly doesn't trust me in this regard, which is why I'm trying to involve him in all of this.

And most importantly, I realized that my evaluation is the only thing that matters. In spite of my habit and desire to involve him, I can't count on him in this way.

Clearly, his dementia is getting worse and fast. My guess is that the new anti-virals are not working for him...if his viral load isn't dropping substantially (we'll know in a few weeks), I'm moving on hospice. And H and I need to have the hospice conversation. Fine, they can come to our home, but it is likely that they will be coming this year.

What do you do? Go through the motions of involving them and then just ignore what they say? How can you get someone to accept care when they can't remember that they need it? How do you get them out of their denial if they can't remember all that has happened? How do you bring up hospice when they don't remember why they need it? How do you tell someone you love that they're not "just fine" and that they won't get better?

So many questions and (I think) so little time.

And yet more snippets

Structuring my life
While it's true that I work full time, my "chores" for H actually structure my life more than work. Work is completely flex-time, but I have to feed H. Twice a day...breakfast and dinner. And the occasional sandwich in the fridge that I leave him for lunch. Not to mention all the times that he asks me for help. What will I do without this demand?

Feeling the emptiness
Sometimes, I'll be walking down the hallway in the house or making dinner and I get hit with the thought: "someday, H won't be here anymore." And I can feel the emptiness, I feel the sadness, and I wonder what it will be like without H punctuating my life with his health issues and care needs as he has these past 15 years or so.

In many ways, H is an anchor for me and I mean this in both positive and negative sense. While I yearn for my freedom from being a caregiver, I also know that this role defines both me and my relationship with H. When he is gone, what will I do without the constraints, not to mention the company?

Where it is going
In spite of the day-to-day ups and downs (which drive me to distraction), there is little doubt that the general direction is down. Now, we won't know what H's viral load is doing for a few more weeks, but it's striking just how impaired he is cognitively and how weak/tired he is all the time.

Last night, he closed his eyes at the dinner table and just sat there for about 5 minutes...then he went back to eating. I asked him if he knew that he was asleep; he said, "I wasn't asleep, I was daydreaming." "What were you dreaming about?," I asked. H says, "I don't remember."

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."

Whine, whine, whine

The malaise is striking...what I'm finding is that I'm as busy as ever, but I don't care all that much anymore. It's not depression so much as just being bored with it all...so I go through all the motions of being a good employee, a good caregiver. No surprise, but none of this seems important or even fulfilling.

I'd rather be gardening. And that's what I've been doing with any free time.

Was talking with H's local sister and the comparison is striking: she's so busy with work and family, but she calls it all "boring." Not that she doesn't love her family, just that she's looking forward to the last kid leaving the nest and it can't happen fast enough. And her work is anything but fulfilling or even interesting now...even tho' she loved it in the past. Drudgery she calls her life.

She seems tired, distracted, mopey, bored, a tad bitter, "flat," and, if you look under the veneer, just a bit afraid. Tho' maybe just projecton as I feel like this too.

Maybe this is just the infamous "mid-life crisis" showing up for both of us as we hit 50. Maybe we're both just a bit burned out living the lives that we have.

Surprisingly, H mentioned to me that I should take a vacation by myself. When I've floated this in the past, he's been upset at the idea. The ironic rub is that, at this point, it doesn't seem appealing...it doesn't seem, well, enough. And, of course, I'd have to arrange care for him.

When I've added time to my business trips to get a break, I've found that it isn't a respite, really; mostly it just emphasizes how lonely I feel. I'm in a strange city and while I can certainly find short-lived puerile companionship, that isn't what I really want. Well, yea, but then they go away and there you are, alone... What I'd really like is to be able to take a trip with a partner again...to have that shared experience of travelling and being a tourist.

H suggested visiting his family down South...err, I don't think so. This is just so not a break in my mind...besides, I'm still sore at them for all of the BS that I have gotten from them, not to mention their denial, and abscence from H's life. Yea, forgiveness...don't know that I can muster that right now. Besides, I don't want to talk about H with them anymore (unless something happens) and if I see them, then that's what it will be.

Really got no friends out of town that I want to visit.

Whine, whine, whine.

H said to me once that the only way out of his situation, the only path that he can see ahead of him, is to die. His health won't get any better...this is as good as it gets, he fears.

Maybe the root of my malaise is the same: this is as good as it gets. And the only resolution is for H to die.

When it is time

Recently, a BBC television reporter said on camera that he had euthanized his partner, who was dying of AIDs (article here).

H and I have discussed this possibility. When when we put our cat to sleep, H asked, cyring, "Why do we treat animals better than humans? Why can't I just go to sleep like that when it is my time instead of suffering?"

We have talked about end of life and I promised him that, if needed, I'd take care of him at the end, as did Gosling.

While I hope that I don't need to do this, I will if necessary to honor my commitment and love to my partner of almost 30 years.

Monday, Monday

I H8 VD
Just don't like Valentine's Day (humbug). My (few) single friends don't like it as everyone gets all giddy and romantic with their SO. I've got one of those, but I dislike VD as much, maybe more, than my single friends.

Not because I'm lonely this VD (well, sort of), but because I'm in this tween space…not really involved and not really single. Yet, I feel obligated too and I also want to... do something for H….

Yet, my desire on this Valentine's Day *is* to be a single man.

So, H and I exchanged cards and a bit o' chocolate. A nice acknowledgement without any reference to the sex and romance part. Just the love, then…what a relief.

What isn't there
I work with a bunch of smart people, really smart people. And when you get into a meeting with them, for some reason they focus on what isn't there: here's what's wrong with this, here's what you missed....

Now, this isn't restricted to work certainly, as many folks focus on what they don't have instead of what they have.

I have a friend who is quite wealthy and healthy, has a wonderful man who loves him, several great kids, and more toys and property than anyone could want. But when I see him, all he talks about his how or ex-wife isn't doing this or that, how he's lost money on this or that transaction, how his kids aren't growing up right, and how much he hates living here and wishes he were somewhere else.

As annoying as I find this, I fall into this as well. In fact, I've whined here about my lack, sometimes at great length.

In balance, I'm healthy, well employed in a job I like, and generally a happy person that owns a home and loves my garden and music. No real worries in life other than dealing with H dying, which is a big one.

The tough work for me to reach acceptance and always see the sick and vulnerable man that I love who needs my help instead of seeing what he isn't doing for me (besides it's my job, not his, to make my life work).

Snippets from the edge (again)

Oooh, look, ponies
We're driving to the Dr. yesterday, past some pasture land where some Shetlands live. H stands up in the car (a convertible with the top down) and is leaning outside the car pointing and yelling (you guessed it), "Oooh, look, ponies!" Giant smile on his face, even as I pulled him back into his seat with the seat belt.

How I got it
Took H to a new Dr. (GP) yesterday. When the Dr. came in, H blurted out, "I just want to tell you how I got HIV…." And he did. I filled in the rest of the history with H nodding, although not necessarily in time with my information.

Salvage
Well, the new anti-viral regimen is considered a salvage regimen, where they just throw a bunch of anti-virals at the virus in hope of controlling it. Not surprising, but I had to figure this out myself with research…why can't the doctors just tell me this kind of stuff? I'd prefer honesty, thank you.

Yellow/gray
H's sister came to visit last weekend and commented privately to me, "His skin, it's kinda yellow/gray now. He's lost weight." No kidding. She was surprised that H got so tired during her two-hour visit.

A whole lotta shaking
H's hands are shaking more and more and his head's beginning to as well a bit. He is struggling to sign his name on paperwork.

Feeling any better?
I asked H if he thought that his viral load was dropping, if he was feeling any better since he's been on his meds for over three weeks now. He says, "Not really…I'm getting more tired…it may be going up instead." "I'm sorry, honey…are you afraid?" "Not yet," he says.

Please forgive us
Got an email from H's parents where they said, "please forgive us for not supporting you as much as we could because we were busy with our own lives.… I sure hope that you both can spend Christmas with us at our new house." Errrr, thanks, but you really need to come up here and visit your son. Don't you get it? It isn't about me…and H may not make it to Christmas ("let's wait and see how he does").

Family fun

H continues to be down much of the time while we're waiting for his viral load to (hopefully) drop with the new anti-viral meds that he started a few weeks ago. And his dementia continues to get worse now…more of the same, really.

I sent out an email update to his family and told them that three weeks into his new meds, I'm not seeing the turnaround that I've seen prior when he's started new meds.

And I told him about his fixation and abject fear about certain conspiracy theories: "great culling," Bildenberg Group, the US government caused/let 9/11 happen, etc.

I asked them not to encourage him about these topics.Some of them breathlessly talk about these topics without giving anyone a chance to say anything.

What I got back was a whole lot of weirdness (no surprise).

"He's not crazy because he thinks these things are true. I'm worried about what is on Fox News also…everyone should be."…I never said he was crazy or that these things aren't scary. (Ummm, yea Fox News IS scary!)

"I called him this afternoon and he seem very lucid."…not my day-to-day experience.

"My son has OCD paranoia, so I understand how difficult this is to deal with."…uhh, no you don't…you don't have any idea where H is, especially based on a 5 minute conversation.

Sigh.

My whole point was to tell them that he's afraid of these conspiracy theories. And since I care about him and don't want him to be afraid (e.g., not able to sleep at night), they need to help me manage his emotional state. Specifically, stop talking with him about these things…you know who you are!

I'm sending these emails out to give them a regular cadence of information about H. Clearly, they don't like what they're hearing (and I don't like it either). All of this is to give them information so that when things happen (sic), they won't be surprised.

New Year's Snippets

Best Wishes
I hope that my gentle readers had a great Holiday season and New Year's celebration.

No trip for H
With H's viral load so high, he just wasn't up to the trip and so he stayed home. Really was fine with me…oddly enough. 'Twas happy that I wasn't angry.

No meds for H or are there?
At first we were told that no meds would work for H's virus, now we're being told that there *might* be an anti-viral regimen for him, pending some conversations that his virologist will be having with some of his colleagues. We just have to wait for a bit to see…but with H's viral load so high, he's fading rapidly again.

Less and less
H's decline into non-functionality is continuing, of course. Not much to say here that I haven't said before. He's losing weight, doesn't want to eat, stays in bed most of the time….

Conspiracies abound
H's paranoia is increasing…he's been worried about any number of conspiracy plots and the latest one is about the "great culling," which postulates that pandemic diseases are just a way for "them" to get rid of undesirables. Of course, H sees himself in that category. He tells me tho', that he has a way out if he needs one (assisted suicide). I wish that he weren't so afraid; very sad.

Not just H
Even tho' it is happening to H, I hadn't really seen much information on HIV dementia and accelerated aging for folks on the meds for a long time. Now, there is this article in NYMag.com. These stories are so sad and yet oddly comforting for me as they give me some understanding of what is happening to my dear H.

Peace at home
One of my goals for this last year has been to have peace at home. For a long time, I have been filled with so much resentment and H with so much fear and frustration, that the "tone" at home was awful. I'm happy to say that it is peaceful now for the most part…me stopping drinking helped and also me working to reduce the poisonous resentment that I've held towards H. Yea, I can deal with the burden, but the resentment was just so corrosive. The key change for me was acceptance: H is like a (sick) child now and that isn't going to change, ever.

Expectations again
The father of a long-time friend is very ill with heart and kidney failure. The father's wife asked me, "What do I do? He's no longer fun to be with, he can't remember our history, what am I supposed to do? And I'm so angry at him."

"Love him and don't expect him to be the way he was. He can't be that for you anymore," I said. "That's what I've had to do with H…otherwise, I'll end up hating him and I don't want that."

As if this were so easy….