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.
Wednesday, June 24, 2009
Thursday, June 18, 2009
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.
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.
Saturday, June 13, 2009
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.
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.
Monday, June 08, 2009
Peas for dinner
About 12 years ago, H was recovering at a local facility that has a specialty in AIDS care after a bout of PCP pneumonia that nearly killed him. At that point, he had been in the ICU for almost a month and needed skilled nursing care to get him back on his feet. This is the same place that I was working to place him at the end of 2007. Lovely, kind people and state-of-the-care.
I had wheeled H in a wheelchair down to the dining room as he wasn't yet able to walk due to shaking and weakness. We lined up for food and I got his plate from the servers. Tonight was steak, mashed potatoes, and peas.
A handful of folks were in the dining room, mostly residents and a few family members. All the residents were either in wheelchairs or using a walker/cane. Only low talking, serious tones.
At the table, I'm cutting his meat because he isn't coordinated enough. But he bristled at being fed. He tries taking a drink, but is shaking and spills the water .
He tries to stab a pea with his fork, but misses and the pea skids off the table. I suggest a spoon and reach for it. "No! No! I can do it," he says.
He loads the soup spoon up with peas and moves up from the plate. OK so far, but then his hand starts to shake a little bit…a few peas drop to the table.
The higher he lifts the spoon, the more he's shaking and peas go flying. One hits me in the forehead and bounces into my water glass. I start laughing, then H starts to laugh and the spoon shakes more.
Now several peas are launched across the dining room. One splats on the nearby window. One flies towards the serving line and many land bounce across our table. At this point, I'm nearly in tears laughing…H begins to laugh more. And more peas fly.
One flies across the dining room, bounces on a table, and hits a guy in a wheelchair in the side of his face and drops into a visitor's plate.
At first he flinches like if a bug hits you, then he realizes it’s a pea, looks at us and starts to laugh heartily. Then others at his table laugh. Later as they were leaving, one of them comes over and says, "Thanks for making Joe laugh…we don't see him laugh enough anymore."
I had wheeled H in a wheelchair down to the dining room as he wasn't yet able to walk due to shaking and weakness. We lined up for food and I got his plate from the servers. Tonight was steak, mashed potatoes, and peas.
A handful of folks were in the dining room, mostly residents and a few family members. All the residents were either in wheelchairs or using a walker/cane. Only low talking, serious tones.
At the table, I'm cutting his meat because he isn't coordinated enough. But he bristled at being fed. He tries taking a drink, but is shaking and spills the water .
He tries to stab a pea with his fork, but misses and the pea skids off the table. I suggest a spoon and reach for it. "No! No! I can do it," he says.
He loads the soup spoon up with peas and moves up from the plate. OK so far, but then his hand starts to shake a little bit…a few peas drop to the table.
The higher he lifts the spoon, the more he's shaking and peas go flying. One hits me in the forehead and bounces into my water glass. I start laughing, then H starts to laugh and the spoon shakes more.
Now several peas are launched across the dining room. One splats on the nearby window. One flies towards the serving line and many land bounce across our table. At this point, I'm nearly in tears laughing…H begins to laugh more. And more peas fly.
One flies across the dining room, bounces on a table, and hits a guy in a wheelchair in the side of his face and drops into a visitor's plate.
At first he flinches like if a bug hits you, then he realizes it’s a pea, looks at us and starts to laugh heartily. Then others at his table laugh. Later as they were leaving, one of them comes over and says, "Thanks for making Joe laugh…we don't see him laugh enough anymore."
Wednesday, June 03, 2009
When it is time
When we had an old cat who was quite sick, the vet told us that he would die pretty soon, but that he wasn't in pain and so we should take him home and enjoy him while we can. "He'll let you know when it is time," the vet said.
So, we took our old kitty home and just spent time with him like we always did: treats, cuddling, and just sitting with him on the couch, petting. The old cat wasn't interested in playing with his toys, the other cats, or with us, but he wanted to hang around us a lot.
And, after awhile, it was time, but we had a few weeks more together where we enjoyed one another's company.
Of course, I think about this now that H is going off his anti-viral meds again, just as he has several times before…each time being a bad trip for all concerned.
In the past, when he's gone off his meds, H has been much more functional than he is now…we could by and large have a normal time together, at least for a month or so until the virus flared up again and he went into the hospital or couldn't figure out how to use his cell phone.
I need to manage my expectations better. I keep thinking that he'll be able to do stuff with me once he's stopped taking the meds that make him sickest. But reality intrudes. And I keep wanting him to be able to do things, not run a marathon, just normal things.
H doesn't want to play or run around, of course, he just wants to hang out and be with me. And right now, I find that rather painful for many reasons, not the least of which it brings up much fear that I'll have to descend into the depths of pain and grief yet again.
So, we took our old kitty home and just spent time with him like we always did: treats, cuddling, and just sitting with him on the couch, petting. The old cat wasn't interested in playing with his toys, the other cats, or with us, but he wanted to hang around us a lot.
And, after awhile, it was time, but we had a few weeks more together where we enjoyed one another's company.
Of course, I think about this now that H is going off his anti-viral meds again, just as he has several times before…each time being a bad trip for all concerned.
In the past, when he's gone off his meds, H has been much more functional than he is now…we could by and large have a normal time together, at least for a month or so until the virus flared up again and he went into the hospital or couldn't figure out how to use his cell phone.
I need to manage my expectations better. I keep thinking that he'll be able to do stuff with me once he's stopped taking the meds that make him sickest. But reality intrudes. And I keep wanting him to be able to do things, not run a marathon, just normal things.
H doesn't want to play or run around, of course, he just wants to hang out and be with me. And right now, I find that rather painful for many reasons, not the least of which it brings up much fear that I'll have to descend into the depths of pain and grief yet again.
Monday, June 01, 2009
Brains & bunnies
H says to me in the car on the way to a local park, "I can really tell that my brain is not what it used to be. "
"How so honey?" I know the answer, but am wanting to encourage him to talk.
He says, "I can't remember hardly anything anymore and I keep having to re-learn how to use programs on the computer. And I've had to learn them again and again."
"That must be very frustrating," I say. What else can I say?
"And I can tell what's from the dementia and what's from the stroke and the epilepsy and what's from the meds."
I nod and say, "That's a lot of stuff, isn't it? Honey, you have gotten more than your share. And I'm sorry for that."
"Yea, me too. I thought it would get better without the (anti-viral) meds, but it isn't."
I say, "Give it some time, honey," not believing what I'm saying.
When we get to the park, he sees a bunny and goes on about it for quite some time. "Oh, look a bunny…." He's standing there pointing his cane at it, bending down and talking loudly to it. People looking at him being so excited and smiling kindly like they do for a little kid. I find it challenging to stand there.
We walked a bit in the gardens, but it became very clear that he was struggling just to walk around on level ground. I'm learning to be more patient and go slowly with him, which is hard as my gut just wants to run away.
And later on the way home, he says, laughing, "It just made my day to see the little bunny. I love rabbits, you know, so soft and furry and kind."
"How so honey?" I know the answer, but am wanting to encourage him to talk.
He says, "I can't remember hardly anything anymore and I keep having to re-learn how to use programs on the computer. And I've had to learn them again and again."
"That must be very frustrating," I say. What else can I say?
"And I can tell what's from the dementia and what's from the stroke and the epilepsy and what's from the meds."
I nod and say, "That's a lot of stuff, isn't it? Honey, you have gotten more than your share. And I'm sorry for that."
"Yea, me too. I thought it would get better without the (anti-viral) meds, but it isn't."
I say, "Give it some time, honey," not believing what I'm saying.
When we get to the park, he sees a bunny and goes on about it for quite some time. "Oh, look a bunny…." He's standing there pointing his cane at it, bending down and talking loudly to it. People looking at him being so excited and smiling kindly like they do for a little kid. I find it challenging to stand there.
We walked a bit in the gardens, but it became very clear that he was struggling just to walk around on level ground. I'm learning to be more patient and go slowly with him, which is hard as my gut just wants to run away.
And later on the way home, he says, laughing, "It just made my day to see the little bunny. I love rabbits, you know, so soft and furry and kind."
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