Will try to keep this brief..mostly because I'm super tired. Glen has taken a definite turn for the worse. He was hiccuping every time he ate on Wednesday, leading to a serious vomiting episode after he went to bed Wednesday night. When I checked in on him before going to bed he was shaking violently, so I contacted hospice, who sent a nurse. He had a fever and was complaining of chest pains. Started morphine, which he is now getting every 2 hours.
Spoke at length with Dr North last night. He said the next few days would tell, but he believes Glen's got pneumonia (or some other infection obviously) and that Glen not being able to lie down without great distress is most likely a sign that he is beginning to build up CO2.
That's about it for now. Will update when I can.
Friday, July 30, 2010
Friday, July 23, 2010
Well we've had kind of a rough couple of weeks. I believe Glen is feeling more ill, and as a result is showing greater awareness that he has a terminal illness. The first indication was before our friends Peter and Patti came to visit. The night before he said to me "I wonder if I'm even going to be here tomorrow." I did my best to reassure him that of course he would.
One day he was looking sad and when asked, said he was thinking about his older brother and how they hadn't really gotten along well during Glen's "formative years." (His phraseology is still fascinating sometimes) He also confided that he felt his chances of seeing his brother again were about 50/50. Bob is in Alaska until September. The next evening I was sitting with him while he was falling asleep, and for the first time since his diagnosis a year ago, he actually cried. I asked him what he thought was going to happen and he said "I'm just going to fade away." He made me cry too. We spent some time talking about whether he believed he was going to see his mom and dad (yes) and my mom and dad (yes) and my brother... which elicited a little grin. I said waiiiiit a minute... you two aren't going to be giving me a hard time are you? Another grin. "Hey.. I don't want any shenanigans from you two!" I actually got a little giggle.
These conversations always happen right before he goes to sleep in the evening. During the day he was becoming much more agitated and much more "inappropriate." We have made a fairly large increase in his meds, and for now it seems to be helping, AND he seems to be sleeping through the night.
On a happier note, progress on the yard has moved along fairly quickly and we were able to take Glen out in back today and show him the new raised beds for the veggie garden, the framing for the arbor and the finished patio. Of course he wanted to walk over and gaze into the pool.. he's really looking forward to going into the water. [note to all: no water goes in the pool until it is fenced] Finally got the refi on the house approved too, so everything moves forward with less stress!
For those of you who are my Facebook friends there are a few photos of the yard posted on my page. If anyone else wants to see them, just ask and I can e-mail them to you.
One day he was looking sad and when asked, said he was thinking about his older brother and how they hadn't really gotten along well during Glen's "formative years." (His phraseology is still fascinating sometimes) He also confided that he felt his chances of seeing his brother again were about 50/50. Bob is in Alaska until September. The next evening I was sitting with him while he was falling asleep, and for the first time since his diagnosis a year ago, he actually cried. I asked him what he thought was going to happen and he said "I'm just going to fade away." He made me cry too. We spent some time talking about whether he believed he was going to see his mom and dad (yes) and my mom and dad (yes) and my brother... which elicited a little grin. I said waiiiiit a minute... you two aren't going to be giving me a hard time are you? Another grin. "Hey.. I don't want any shenanigans from you two!" I actually got a little giggle.
These conversations always happen right before he goes to sleep in the evening. During the day he was becoming much more agitated and much more "inappropriate." We have made a fairly large increase in his meds, and for now it seems to be helping, AND he seems to be sleeping through the night.
On a happier note, progress on the yard has moved along fairly quickly and we were able to take Glen out in back today and show him the new raised beds for the veggie garden, the framing for the arbor and the finished patio. Of course he wanted to walk over and gaze into the pool.. he's really looking forward to going into the water. [note to all: no water goes in the pool until it is fenced] Finally got the refi on the house approved too, so everything moves forward with less stress!
For those of you who are my Facebook friends there are a few photos of the yard posted on my page. If anyone else wants to see them, just ask and I can e-mail them to you.
Sunday, July 11, 2010
Nothing hugely dramatic this week. Glen is experiencing a (for now) slow but steady decline. His speech is markedly worse.. frequently if he says something, we have to mute the tv and ask him to repeat himself. What I genereally try to do is repeat back what I think I heard, or as much of what he said as I think I understood. I try to remember to use yes or no questions as much as possible.. I'm still guilty on occasion of giving him choice a or choice b.. to which he will nod his head yes or no leaving us all very confused. We try to inject as much humor as possible and try to keep the mood light.
At one point this week after Glen had missed an afternoon dose of his anti-psychotic medication, he seemed so much more alert that I decided to see if we could back off that dose. Unfortunately the trade off was an increase in odd behaviors. Last night he wanted to go upstairs (pretty much off limits to him)... when I asked him why he told me "because there's a beautiful creature up there." He was also insistent on going upstairs, outside, for a walk, etc. So it came down to a choice: more alert but making worse choices, less alert but safer. After talking it through Kev & I have chosen safety... which also means things are much more peaceful and calm.
He's also sleeping more.. goes to bed earlier, sometimes takes two naps instead of one, semi-dozes while watching TV. If I had to guess, I'd say his CO2 levels may well be starting to build up. On the other hand, he said this afternoon that he misses USF basketball and we talked about the fall season.. I even got him to agree that if we did get tickets, he'd agree to use the wheelchair to get to and from the gym. Big concession on his part, but he couldn't go for a walk today because of quad cramps, so I think it might have just been timing.
At one point this week after Glen had missed an afternoon dose of his anti-psychotic medication, he seemed so much more alert that I decided to see if we could back off that dose. Unfortunately the trade off was an increase in odd behaviors. Last night he wanted to go upstairs (pretty much off limits to him)... when I asked him why he told me "because there's a beautiful creature up there." He was also insistent on going upstairs, outside, for a walk, etc. So it came down to a choice: more alert but making worse choices, less alert but safer. After talking it through Kev & I have chosen safety... which also means things are much more peaceful and calm.
He's also sleeping more.. goes to bed earlier, sometimes takes two naps instead of one, semi-dozes while watching TV. If I had to guess, I'd say his CO2 levels may well be starting to build up. On the other hand, he said this afternoon that he misses USF basketball and we talked about the fall season.. I even got him to agree that if we did get tickets, he'd agree to use the wheelchair to get to and from the gym. Big concession on his part, but he couldn't go for a walk today because of quad cramps, so I think it might have just been timing.
Sunday, July 4, 2010
4th addendum
well.. despite a good start to the morning, Glen faded fast and after a late breakfast and spending some time watching Rushi open birthday presents, he asked me to help him in to take a nap. His color was back to yesterday's grey and he was again slurring his speech heavily. I fear I got my hopes up this morning when he seemed so perky, forgetting what the adrenaline from the fall could do. Sigh.
Happy 4th all!
Today is actually starting off better than I'd hoped. Woke up at almost 9 and realized Glen wasn't watching TV.. usually not a good sign. Went into his room and sure enough, he was sitting on the floor.. but with a big grin on his face, go figure. He'd only gone down a few minutes before, it wasn't the middle of the night, and Kevin was home so all in all it was very convenient. Got him up and he's now having some breakfast. He was really awake and not druggy this time and so could actually tell me that his legs just gave out. I realized that he needs to make a left turn to get to the door (his left side is his weak side), and that he goes down in that same spot every time. May be time for some furniture rearrangement. Unfortunately it's also another indication that his legs are starting to be more involved. Damn.
Yesterday was an especially rough one. He had an very bad night Friday with extreme vomiting and was very weak and tired all day. He actually felt like he might have a slight fever but seems much better today. The really interesting thing is that for whatever reason, Glen was here.. the real one.. and we got to talk about a few things. Much of it was sad but still good we could discuss it. He was power grinding, and I finally coaxed out of him what it was.. he was thinking about his older brother, and (um.. gonna paraphrase here) how they didn't get along well growing up. Ah hell.. his actual words were: "in my formative years he was an asshole." He said he figures there's about a 50/50 chance he's going to see his brother again. [For those who don't know, Bob's in Alaska until the end of September] Glen acknowledged feeling scared, and feeling like things were going to go downhill quickly from here. That being said, he had no regrets about decisions we've made concerning feeding tubes, trache tubes, etc. I said that the way he was feeling was probably just a little glitch and he'd be better soon. He shook his head no. He doesn't seem to think there's a lot of this left to go on. I think Kathy was right.. the issues with Bob are because when he's clear, he's kind of reviewing his life and was thinking about his childhood.
I asked him if he believed he was going to see his Mom and Dad and he said yes. I said hey wait a minute.. you and my brother aren't going to be coming back and messin' with me are you!? He gave me a big grin. I told him I wanted NO shenanigans!! He grinned again. I may be in trouble.
As mentioned earlier, he slept in today and despite his fall seems to be in a good mood. He's had some fruit and is waiting for Kev to come back with coffee and breakfast. His color is much better and his breathing is somewhat shallow but much easier than yesterday. Sadly.. "real Glen" is gone again, and we're left with the power-grinding, Martha-searching adolescent version. Oh well. It was a nice visit.
Yesterday was an especially rough one. He had an very bad night Friday with extreme vomiting and was very weak and tired all day. He actually felt like he might have a slight fever but seems much better today. The really interesting thing is that for whatever reason, Glen was here.. the real one.. and we got to talk about a few things. Much of it was sad but still good we could discuss it. He was power grinding, and I finally coaxed out of him what it was.. he was thinking about his older brother, and (um.. gonna paraphrase here) how they didn't get along well growing up. Ah hell.. his actual words were: "in my formative years he was an asshole." He said he figures there's about a 50/50 chance he's going to see his brother again. [For those who don't know, Bob's in Alaska until the end of September] Glen acknowledged feeling scared, and feeling like things were going to go downhill quickly from here. That being said, he had no regrets about decisions we've made concerning feeding tubes, trache tubes, etc. I said that the way he was feeling was probably just a little glitch and he'd be better soon. He shook his head no. He doesn't seem to think there's a lot of this left to go on. I think Kathy was right.. the issues with Bob are because when he's clear, he's kind of reviewing his life and was thinking about his childhood.
I asked him if he believed he was going to see his Mom and Dad and he said yes. I said hey wait a minute.. you and my brother aren't going to be coming back and messin' with me are you!? He gave me a big grin. I told him I wanted NO shenanigans!! He grinned again. I may be in trouble.
As mentioned earlier, he slept in today and despite his fall seems to be in a good mood. He's had some fruit and is waiting for Kev to come back with coffee and breakfast. His color is much better and his breathing is somewhat shallow but much easier than yesterday. Sadly.. "real Glen" is gone again, and we're left with the power-grinding, Martha-searching adolescent version. Oh well. It was a nice visit.
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