Quattro Tuesday

Tree up and decorated
Last year, we didn't have a Christmas tree. After two years of me putting it up a giant tree mostly by myself, I just wasn't going to do that much work again. And besides, its no fun to put up a tree by yourself, especially since I see the ornaments as one rendition of our history together and I miss sharing that with him.

So, H and I were talking about putting up a tree this year and I had to work and work to get him to understand that 1) I would like a tree this year, 2) it can't be a large one, and 3) I'm not going to do all the work myself again. Nope.

So, last weekend we put up and decorated a 4.5' artificial tree. Just big enough to hold all our "special ornaments" and yet small enough to finish quickly to make it fun. It was nice to have him there, decorating, as we reminisced as each special ornament came out. How it should be….

Viral load up and despondent
H had been on a holiday from his anti-viral medications since about March of this year. 3 months ago, his HIV viral load was effectively 0 and his T-cell counts were good. Results from last week showed that his viral load is now up to 330,000 and his T-cell counts are dropping.

Time to go back onto the meds, I think, and he's not happy about it at all as these meds in particular make him feel sick much of the time. His virologist will let us know in the next few days the results of a test (phenotype) to see which meds may still work against H's virus. The big risk is that the virus will be resistant to the new meds that had been working for H the last year; if that is the case, there is no other treatment for him and he will most certainly get sick and likely not pull out of it. And if the meds do work, he can look forward to feeling sick most of the time.

Oddly, I feel a bit relieved and I also feel a bit frightened and sad for him.

Now, what's for dinner?
As the chef in our house for the past decade or more, I've got my favorite recipes and new ones that I try out. Over time, H has ruled out whole food groups: pasta, curry, pizza, stir-fry, Mexican, eggs, etc. Now, I'm struggling to figure out what to make him for dinner and, at the same time, my resentment grows for his increasing fussiness.

The unbearable weight of responsibility
So, my manager is leaving the company and I've been approached by several folks, including my "big" bosses, telling me that I should apply for my manager's job. I've led groups like this one before, so I know what's involved. And this is a great opportunity any way you choose to slice it.

But the first thought in my head was, "I just don't have the energy for this as long as H is around. How can I focus on work when the situation with H just sucks the life out of me?" Sigh. I am so tired of being tired and distracted.

Turkey snippets

Smokin' 'n' drinkin'
While I was in Europe last month, I decided to smoke and drink out on the town with my pals from work. I worried a bit about the drinking…if I had my first drink in 7+ months, would I be able to stop?...but all for naught. 'Twas a social thing only. During the day, no cravings; no cravings upon my return home. I could take or leave smoking on the road, but once I got home, I wanted to smoke more.

Down for a visit
Although I've only got one response from H's family to my status email, H will be heading South to visit many of them after Christmas. They are eager to see him and I'm glad that he wants to go. Also, gives me 2+ weeks of break, which I am grateful for.

All is calm
H is doing rather well physically right now. We'll know what his viral load is here in a few weeks. What's so odd is that he's stable right now and his spirits are good. In some ways, I don't know what to do with him when there isn't a health issue going. His dementia is still worsening tho'.

When I'm sick
Over the past several weeks, I've had two migraine headaches and also got a weird flu. H was good about this, as there was no way that I can keep up at home when I was that sick. He said, "Sheesh, even when you're sick, you don't get a break." I replied, "Yup, I know." And, to his credit, he asked me for nothing during my sick times.

Deteriorating in front of my eyes
One of H's sister lives in another state, not too far from his parents. Since this sister lives closest, she sees what is happening with his parents. Like most folks in their mid to late 70s, they have a myriad of health issues, but some dementia is beginning to creep in.

His sister said to me, "I can't believe it, I'm watching them deteriorate before my eyes…it's horrible (crying)." I told her that I understood as I'm watching H deteriorate as well. She asked me what she should do…I said, "love them and realize that you can only do so much to help them…you can't stop them aging. Most importantly, just be there for them."

Family response

My prior post is the text of an email that I sent to H's family to give them a sense of where he is.

Of the 3 recipients (two sisters and parents), only one sister replied:

"...that is sad news, very sad indeed. Thanks for the update. I know some people who can help with H's caregiving…just let me know and I'll fwd their contact information."

Trouble is that a full-time (or even part-time) caregiver is waaay more than I can afford ($800 - $1,000/week) and that wasn't really the point of my email. (I do worry about that as H declines further that I won't be able to keep him at home…even tho' part of me would just like him to leave.)

Really, all I wanted to do was to give the family a sense of where H is. Interesting to me that I got only one response and that was to get some "hired help.

I was hoping to hear that they all will spend as much time with H as they can while they can.

Thought you should know

A few days ago, I sent an email to H's family to tell them about my worries and to give them some idea about what is going on.

Here's the text of that email (kinda long, apologies). In a future post, I'll give y'all a rundown of their reply.

Beloved family,

I hope that I have all your correct email addresses here….

I wanted to give you all a private update on how H is doing. Please don’t forward this email to H as I don’t want to have him worry unnecessarily or hurt his feelings.

Please don't worry, I'm not wanting to "put him somewhere" right now, nor is he having any acute health issues right now. And, I'm not trying to frighten you or request any action from you.

I'm telling you this because I know that we all love H and you need to know what is happening.

What I am seeing is a continuation and acceleration of his general physical and mental decline, especially compared to a year ago. Many of our long-time friends see this too and have told me their stories.

His HIV viral load has been down this year (in spite of now being off his anti-virals) and his T-cell count is normal for a man his age (highest that it's been in a decade or more). Usually, when his viral load is down, he does better physically and mentally, but not this time. He'll get another blood test next month.

His doctor has told me that they can control his virus, but his dementia will get worse. And it is:

-He can't operate the washing machine any more…he gets confused by the dial and what to do. We've had this washer for > 10 years now.
-He can't operate the over timer anymore…we've had this oven for almost 20 years.
-He will sit and mutter to himself for several minutes at a time, shaking…almost like an autistic kid.
-He can hardly make a sandwich or a bowl of cereal for himself anymore
-His short term memory is shot and he will ask me the same question 10 times a day
-He is having a harder and harder time keeping up with even a simple conversation or TV show.
-He is having much more trouble walking and balancing, even with his cane
-He can't take his parrot out and about anymore…he's too tired, too lame and afraid to leave the house
-And on and on…

Now, some of these things (and worse) have happened before, but what is so striking is the change in the past year. And that decline is accelerating. Even though he does have his lucid and cogent moments, he is becoming physically lamer and cognitively much slower. And, I don't know how else to describe it, but his personality is fading and his emotional range is shrinking.

Doctors tell me that he is in a decline, where we will lose him "inch by inch," maybe faster. The can't predict his death (besides, we've all heard those predictions many times), but they do say that he is heading towards "general disability," which means the inability to do anything. Much like what happens to Alzheimer's patients.

Based on what I'm seeing and what the doctors tell me, the reality of it is that H is not going to get any better than he is right now and he will most certainly continue to decline.

My recommendation to all of you is to find a way to spend as much time with H as you can within the next year or so.

Much love,
asm

General disability

A long-time friend is now helping me with the garden. She has know H and I for about 20 years or so. Now, she's over a few times a month and is able to spend some time visiting with H and me.

While I was visiting with her yesterday, she told me how she had seen H decline over the past year. She characterized it as significant mental slowness, difficulty in getting around, lack of ability to track with a simple conversation, and just overall "fading" of his personality.

She says that "if he continues declining at this rate, I don't see how he can be at home for much longer…likely he'll only live a year or two more."

I can see the same things also (and I do think that his tether is short), but I'm so close that I don't notice the gradual decline and I mostly focus on the significant events: confusion over the washing machine dial, inability to make a bowl of cereal, major short-term memory issues, muttering to himself and shaking, and trouble setting the oven timer.

While I'm away next week, a series of our friends and family will be spending time with H. I will check in with them after I'm back to get their observations.

But, I know what they're going to all say and I do appreciate their counsel. That doesn't change my reality any, but does help me with needed perspective.

Reality is that, given his series of CNS & dementia issues, he is heading towards general disability, a disability where he can't hardly do anything, eventually resulting in him being bed-ridden.

Leavin' on a jet plane

In a few days, I leave for Europe again. Last year, I went to lovely Amsterdam; this year it is (I've heard it's lovely) Rome.

While it sounds a bit glamorous that my company sends me about the world from time to time, I find it rather grueling and my ole' man's body is not too keen on that whole jet lag thang.

Nonetheless, I am looking forward to the break. I've got H covered through a combination of family and friends. And, so I am free to travel half-way across the world.

This is the first time that I've had such diametrically-opposed feelings about leaving.

On one hand, I can't wait to get away from H and all the care that he entails. I need the break and I'll have a good time travelling with my team.

On the other hand, I am actually more worried about him than I have been in a long time. Not from an acute health issue, but from the continuing chronic decline. Over time, he just seems less and less "there" and less able to do even simple tasks.

But I am certain of this: when I get in the cab to the airport, my aching back and other body parts will stop aching. And, when the return cab drops me off at the driveway at home, those aches will return

Monday snippets

More of the same
I haven't posted much as life grinds on with no real news…just more of the same with me struggling to cope and H struggling to do just about anything. Really, I'm struggling to accept and my not accepting reality is why I struggle.

That must be frustrating
I've told H on many occasions when he's expressing his dismay at all he no longer can do, "That must be frustrating, honey." "Yea, it really is." What I don't say is that it is equally as frustrating for me (especially when I hear the same story over and over) and that makes me frustrated (but there's nothing he can do).

Better living through chemicals
Effexor is a wonderful anti-depressant in so many ways. I'm not longer in my deep, dark hole and for that I am glad; in fact, my mood is pretty darned good these days. But, the side effects are troublesome, from the slight agitation feeling, to the hot flashes, to the libido up, but performance down.

Nodding and muttering
I keep finding H sitting at his computer nodding and muttering. He tells me that he's daydreaming. This usually also happens when he's sitting at the dinner table, fork shaking in his hand while he's staring down the dinner plate.

Using the oven timer
Yesterday, H put some cinnamon rolls in the oven while I was doing laundry. He came to me and said he couldn't figure out the timer (on our oven that we've had for 20 years). When I went to check on the oven, he had set it to self-clean and then to a timed bake for 90 minutes at 400. I tried to explain what he had done, but finally settled for "only use the left button" for the timer.

Wish I could remember
H continually reminds me of things that need doing. Problem is that he doesn't remember that he's already talked with me several times about the chore and we've reach agreement on what needs to happen. Chances are, the task is already done. Challenge for me is to reply as tho' we never had a conversation about the topic…that's how H sees it after all.

Favorite quote of the day
"If you experience chronic difficulties in a particular area of your life, there’s a strong chance that the root of the problem is a failure to accept reality as it is," Steve Pavalina here.

The never ending list

Since I don't see H much - what with me working and him sleeping so much - whenever I do see him, he rattles off a list of what "needs to be done" and "we need to buy."

Now, I've written before about this, but H's requests for the list are doing nothing but escalating. And in the past I'd get all agitated about this (the "I have to do everything" martyr song), but now I'm less upset about the never-ending list.

Many of the things he asks for - cleaning the gutters, ordering pet food, new eyeglasses - are all fair game, but some are just bizarre.

My favorite is the pressing need to tear out a Laurel hedge in the back yard and replace it with a small building…a studio with power and water that we could rent out. The other fun one is that the 42" plasma TV that we have had for less than a year isn't "big enough," so we need to buy a 54" one. So not going to happen.

The other day, he was pressing on getting something done (I can't even remember what it was now) and I did get upset.

"Why are you so pissed off?" H asks me.

"Well, I can't keep up anymore with just what I need to do and you sleep all the time and then get up and tell me everything else you want me to do. And over time, you're able to do less and less, so you just assume that I'll pick everything up that you can't or don't want to do," I said. (AKA "the martyr song.")

"Oh, I don't understand, but I'm sorry." H said.

I thought about telling him that nothing happens in the house or our lives unless I do it, but it didn't seem worth it. So, I just dropped it as I often do. The trap is that I keep thinking that he can understand and empathize with my experience (he used to be able to), but of course he can't anymore.

The challenge is to take what I think needs to be done and talk him down from the others where I can. And since he often can't remember what he asks for, sometimes I just agree and then change the subject.

Peace in the house

Since the very brief conversation that we had, the tone in the house has been more peaceful, more gentle. No real whining, carping, no angry skulking from H.

Part of this is that between me stopping drinking and taking anti-depressants, I'm just in a better mood.

But most of this is just H and me clearing the air with a thank you and a you're welcome.

This isn't to say that all issues are resolved (far from it), but I needed to hear some appreciation to remove that chip on my shoulder. And, as much as I stuggle to not have any expectations or needs of H, I needed to hear him acknowledge what it is that I've done and continue to do.

Appreciation

We're in the office, surfing the Web and H says to me, "I love you (singleman's name).

"I love you too, honey."

H continues, "Thank you for not abandoning me."

"You're welcome."

Great resources for spouse caregivers

If you're caring for an ill spouse (as I am), I've found a great resource at wellspouse.org.

Useful information on the site, but the real gems are in the forums (you'll need to register). I spent a fair amount of time being amazed and relieved that others experience what I do (e.g., distress over the change in our relationship, should I stay/should I go?, etc.).

On a different note, I started taking Effexor again for depression. Even tho' I'm only a few days into a low, ramp-up dose, I feel so much better. While I have mixed feelings about taking the meds, I can't argue with the results. And I'm a bit worried about side effects, but better the devil that you know.

Be amazed

'Twas talking with my massage therapist, who's actually a spiritual teacher in some ways, about my decision to go back on anti-depressants.

I stopped drinking because I was not functional and now depression is getting the better of me so that I struggle to function, especially at work.

He suggested, "If you could focus on what H CAN do right now and be amazed at anything that he does...loading the dishwasher, folding any laundry, anything really...then maybe you wouldn't need anti-depressants."

At this point, I was beginning to grumble a bit in protest.

"You have a need for him to do particular things...things he used to do...and the fact that he can't is what makes you sad, depressed. Your expectations are what is making you sad. What if you didn't need him to do or be anything other than just what he is?"

Isn't that acceptance in its purest form?

Still seeing the doctor tomorrow, tho'.

Acceptance

Strange, but true…I am, for the first time, feeling peace with where H is and what is happening. Now, that doesn't mean I like it, because I most certainly do not.

Happily, I no longer get angry (or as angry) at H for his incoherent questions, his general lack of ability to accomplish anything, or his need for my help in almost every area of his life. These days, I have caught myself trying to be helpful, to anticipate his needs and to do so willingly and whole-heartedly, even cheerfully.

I'm relieved that I'm finally feeling gentle towards him again…been a long time, too long.

As I recounted in my last post, I recently pressed on finding the parrot a new home and getting a viral load test during his anti-viral medication holiday. Both of these topics made him very angry and remarkably coherent for several minutes, which is a rarity. The net of it is that he doesn't want to know what is viral load is doing, doesn't want to re-start the anti-viral meds, and doesn't want to work on finding a home for the parrot.

Seems that all he wants to do is spend time with his bird and with me. And sleep.

Last night, I was talking with H about how much he's sleeping these days (18 - 20+ hours a day) and that I've noticed this increasing the past few months. Again, I got one of the most coherent answers I've heard in a long time: "Well, I've just given up. I can't do anything. I feel sick all the time. I'm in a lot of pain. I don't have a brain anymore. I'm tired of fighting this. I just don't want to be here anymore."

This is the most honest answer I've heard from him in a long while; usually, it's about how he will get better…"when I get better, I'll do ," or, "when I'm on my med holiday, I'll…".

And without taking his anti-viral meds, he will die. Simple…they are the only reason he is alive today. We'll see if he really doesn't want to restart his meds when it is time to do so (it may already be). But, for now, I'll support him in his decision, even if it means he will die. Truth be told, his life is no better if he takes the meds; in fact, he'll just feel sicker from the "chemotherapy."

And while what is happening is sad, I am relieved that both of us are arriving at some kind of acceptance, albeit by very different paths.

Birds in a cage

Whenever I get overwhelmed by the whole ball o' fun, including work, stress from watching H decline, and now having to do everything around the house (except for cleaning and H's meds), I just tell myself, "This sucks, but I can handle it." Seems to work much of the time.

Nonetheless, I find myself fantasizing about life "outside," life without caring for a very sick person…of course, the fantasy is likely better than what the reality might actually turn out to be.

H has had a large parrot, a macaw, for about 7 years now. In the past, H took the bird on picnics, to Petco, to friends, and for long walks around the neighborhood. But recently, H has not been able to do these things and is now having trouble holding the bird as his hands are shaking. Of course, H can't clean up after the parrot or feed him, etc….so I end up doing that.

For awhile now, I've been thinking, but not saying, that we need to plan for a home for the bird when H can no longer care for him. Now, these birds need a lot of attention…they are highly social animals and they adopt families as their "flock," so it is bad for them if they spend too much time alone or in a cage, which is what is happening now. I work much of the time and H sleeps pretty much all day.

I've raised the topic of H and I working together on finding a future home for the parrot (but, likely, I'll have to arrange that myself). I want to make certain that the bird gets a good home, someone who knows how to care for him. But H got really, really angry about it and said that the Dr. just needs to change his meds so he doesn't shake so much, but that is just one part of it.

H fell again the other night and was incoherent for 5 minutes or so afterwards. This is the fourth time in two weeks that he's passed out and fallen. Luckily, I was home each time. Drs. know about this, but say that his blood pressure is so low that they're not certain just what to do. Mostly, "just don't stand up so fast."

This morning, H said that he is afraid to take a walk in the neighborhood or go anywhere because he might fall down and that he doesn't feel well. And that he's afraid to leave the house without me. And so, even tho' H stopped taking his HIV meds this Summer, so he could "have a life," he doesn't.

When he's feeling better

It drives me crazy when I come home, as last night, and H is in a chipper mood and has been doing stuff.

"Doing stuff" in this case means playing with the pets, doing stuff on the computer, and cycling the dishes in the dishwasher. Nothing major for the rest of us, but major for him.

I guess that I should be happy that he is feeling better for that day, but really I just resent it because it's not consistent…and most importantly, that it conflicts with how I've learned to see him and my own resolve with how to move forward.

And just a moment ago, he called me at work to say, "I just called to say I love you."

While the distress and desperation that I often feel is overwhelming, so is the cognitive dissonance.

Are we there yet?

Back at the desk (and the Web) after a two-week+ break. Nice to get off the grid for a bit. Didn’t do any travelling this time…was a staycation and it was a delightful break from work: get up and just do stuff I want. And coming back to work is a relief from what has been going on at home.

H has been having fainting and falling spells, so that created a bit of a hubbub during my break. Well, hubbub for me anyway. Dr. didn't seem alarmed about this or H's faltering mental state…"well, yes, his dementia will get worse, yes, he's at risk for falling." What's expected by others doesn't help; it's a big deal to me.

Keep wondering when he'll die…like being on a long, hot, uncomfortable car trip and you don't know when you'll get there because you've never been there before and traffic is bad. Sure, at some point you will get there, but not soon enough, in any case.

H pretty much slept through my whole vacation. Up around noon, take meds, back in bed until 4, take meds & eat, back up for dinner at 8, up for a few hours for TV, and then sleep again. More of the same, really. Just a shadow in the house now.

So, I just go about my life, visiting friends, working in the garden, etc. and I see him for 2 - 3 hours a day.

This year, among other things, I had planned to 1) quit drinking (check), 2) focus on work until vacation (check), 3) take an extended break from work (check), and 4) figure out what I'm going to do with H.

So, here were are.

Short answer: no surprise, but I’m not going to place him until I have to. I won't place him (I don't think) due to my issues, even tho' I can really feel the burden now that I'm rested about work. But I do wonder how long he can continue to be at home by himself.

He can't remember to take his meds, is at high risk of falling, goes to bed and leaves the windows opened and doors unlocked, can't remember to eat or if he does, he can't figure out how to make food or even where to get food from the refrigerator (e.g., looking for eggs in the produce drawers).

And from here on out, that trip in the hot car will only get more uncomfortable, however long it takes to get there, wherever it is that we're going.

Why I sleep so much

For years, H has slept a lot…up a few hours in late morning and early evening, but generally in bed the rest of the time. Sometimes he sleeps more and sometimes less, but generally, he's sleeping 18 hours a day or so. When he sleeps more, he's up for a few minutes here and there and then goes back to bed.

When I've asked or said anything about his sleeping, I get a range of answers, usually defensive, which is not what I was trying to achieve:

* Because the meds make me sick and I'd just rather sleep it off
* The pain meds make me so sleepy
* You're an asshole and I prefer not to be around you
* You don't want to be around me
* I'm trying to give you some alone time

When I ask, I'm looking for information about how he is doing. A few days ago, I mentioned that it seems he's sleeping a lot more (up for just a few minutes at a time and I really notice this) and he said, "Well…you can't diagnose me. "

"Oh, honey, I'm not trying to diagnose you, I'm just trying to understand what is happening," I said. "I'm asking because I care."

H said, "Well, I'm just depressed. I'm sick, I feel bad, and you don't want to be with me anymore. So I sleep. Besides, I just love sleeping. I really enjoy my naps…the highlight of my day."

Snippets from the edge

H has been off his anti-HIV meds for over a month now. He hasn't called to find out if his viral load has gone up or not. He says, "I just don't want to think about it or know."

Conversations at our house are very quiet…I talk but I rarely get a response. H is quiet a lot these days, part of it is that he's not been feeling well and I think that part of it is that he's not home very much.

My therapist talks about how people feel lost when a spouse dies. Nice to have a name for what I've been feeling.

Went out to dinner with folks from work and some work-guests from out of town. Everyone has something interesting to talk about…books, travel, hobbies. I come home and it's, "I'm not feeling well, I need to go to bed."

Work consumes most of my time and thoughts right now. It's good fun tho'. Will get a break in August and I can use the rest. Not certain how the time at home will be for me as I'll be alone whether he's up or not.

The thing about the hat

H and I went to our friend C's b-day party a week or so ago. She's 86 now.

While we were there, H told me that he was feeling bad vibes from the crowd and that C had likely told them bad things about him. I told H, "Well, if there's an issue, give them the responsibility to bring it up…otherwise, let's enjoy ourselves."

Later, H talked about how the bad vibes at the party must be because he wore a hat when outside during the party. Now, it was a very stylin' hat, a modern take on a nice fedora. He said, "They're from a different era and must not have liked me wearing my hat."

For the next 5 days, C called us several times, but H refused to answer the phone when she called and he didn't want me to answer it either. And he went on and on about how C is just cranky and wants to chew him out about wearing the hat. I tried to talk him down, telling him that "you don't know that's the issue…." But of course, that was the issue for him.

"I just know she wants to chew me out about wearing the hat," he says.

Finally, he decided to call C to "spoil her little game."

As it turns out, C wanted to thank us for coming to the party and to tell him how much she enjoyed the flowers that we sent to her home. No mention of the hat.

How to wash

Since i've been so busy recently at work and H is on a break from his anti-viral meds that make him feel so ill, he's been trying to help more around the house.

I really appreciate all the help I can get and give him losts of positive reinforcement for any help at all, even unloading the dishwasher and bringing up the empty garbage cans from the street.

Last night when I came home from work and the gym, he was starting to do laundry. He asked me how I do it.

"What do you mean?" I asked.

"How do you use the dial? Don't you start at the top?"

Our washer has 3 cycles (heavy, light, and delicate) on a big dial. I showed him each of the cycles and told him what each was for.

I told him about the dial for about 5 minutes trying this tack and that. You "don't always have to start at the top of the dial," but that you pick the cycle based on the clothes and how dirty they are. And sometimes, where you start is not at the top of the dial. It just depends....

He was very puzzled and more than a bit agitated at this point. Clearly, he was frustrated.

I finally said, "For most things you can just start at the top of the dial."

"Oh, OK, now I get it," he says smiling. "I've already washed one load, you know."

This is a man with two college degrees and was once one of the smartest people I know. Now, laundry seems daunting.

He has noticed that he hasn't rebounded (energy and thinking) like he has in the past when he took an anti-viral med holiday. I agree with his self-assessment. He asked me this morning if I was worried about this.

"No honey, I'm not. Give yourself some time off the meds. You know that you have good days and not so good days. You'll be just fine."

"Good, I'm glad to hear that," he says smiling.

But I know he won't. And I'm scared and sad about it.