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.
Thursday, October 29, 2009
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
Labels:
caregiving,
decline,
my poor sweetheart
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.
Labels:
acceptance,
dementia,
patience,
stop the madness
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