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….

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.