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."
Tuesday, December 01, 2009
Wednesday, November 11, 2009
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.
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.
Thursday, November 05, 2009
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
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
Thursday, October 29, 2009
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.
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.
Tuesday, October 27, 2009
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
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, October 19, 2009
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.
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.
Wednesday, September 23, 2009
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.
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.
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