I'm going to try and get this thing fired up again. Ken is getting closer to being able to use a computer, so I am going to have to sift through my past posts, and look for data that perhaps I should have kept to myself, or posts that may elicit suspicious thoughts (like this post, actually).
The past few months have gone well, but have seen little improvement, other than speech. His walking and movements have degraded somewhat. Ken spends about 20 hours a day in bed because of his pain. Physical and Occupational therapies have suffered because of this, but at least the muscles are not locking up as they did in the past.
We have a doctors appointment on Tuesday to get orders for palliative care. Injections, I think, to control his pain.
More soon.
Sunday, December 12, 2010
Wednesday, February 17, 2010
February 17th, 2010 11:53pm
I haven't been updating this very much lately, as you may have noticed. I try to tell myself that it is because I am either too tired or too busy. Neither is accurate, honestly.
I just either have no news, or I have complaints, and neither one is a terribly interesting read.
Ken is doing quite well. He is doing more and more. He can walk around the house very well, but still can not do stairs. Even the step into the garage from the house takes several moments of focused coordination. His right arm is doing better as well. He still does not use it for anything, but he can move it a lot more than he could before. When I say, "Ken why not hold the bottle with your right hand while you try to open it?", he looks at his right hand confused, and seems surprised that it is there. He looks up at me and says, "I forgot it was there." Actually what he says is, "the lef one is on okay but did know that when left was there forgot and to use it." His speech has gotten a little better, but not much. It is slow going. The best way to describe it is that he has the vocabulary of roughly a 4 year old. Quantities still confuse him i.e. is 100 more or less than 1000 . . . is 4 months a long time . . . things like that. He still does not understand if Monday comes before Wednesday, he calls both dogs Yodie, he can't tell time, he doesn't know his numbers, days of week or months. He takes 18 prescriptions each day, two of which have a side effect of depression, and several that cause constipation. We get up twice during the night to take pills. I haven't slept more than 6 hours since October.
I keep thinking back to this party we went to at Christmas time. Ken really wanted to go even though he had only been out of the hospital for about a week. It was at the house of two of our DEAREST friends, and we have been to every Christmas party they have had for, I think, the last 8 or 9 years. Ken said he didn't want to miss it.
At this time in December, he couldn't walk, and his speech impairment was pretty severe. I remember I wheeled Ken in, and he felt so good seeing old friends. Then this guy walked up to Ken and started talking about how he had a stroke, too, in October almost the exact time that Ken had his. This guy was standing up, walking perfectly, dressing himself, speaking clearly, wiping his own ass, and was telling Ken about how hard his experience was. Really?? You both had a stroke at the same time, and you're up and walking and talking, and Ken is still in a wheelchair in front of you, and you're telling him how bad it was for you??? Ken asked if we could go home, cried the whole way back to the house, and took almost a week to get over it.
I've been getting more and more un-motivated. I still have eye appointments to make for Ken and social security paperwork to fill out, but I'm not doing it. I don't know why. I feel all I do is go to work, pay bills, fill out forms, clean the house, fill prescriptions, prepare meals, do laundry blah blah blah blah . . .
I just either have no news, or I have complaints, and neither one is a terribly interesting read.
Ken is doing quite well. He is doing more and more. He can walk around the house very well, but still can not do stairs. Even the step into the garage from the house takes several moments of focused coordination. His right arm is doing better as well. He still does not use it for anything, but he can move it a lot more than he could before. When I say, "Ken why not hold the bottle with your right hand while you try to open it?", he looks at his right hand confused, and seems surprised that it is there. He looks up at me and says, "I forgot it was there." Actually what he says is, "the lef one is on okay but did know that when left was there forgot and to use it." His speech has gotten a little better, but not much. It is slow going. The best way to describe it is that he has the vocabulary of roughly a 4 year old. Quantities still confuse him i.e. is 100 more or less than 1000 . . . is 4 months a long time . . . things like that. He still does not understand if Monday comes before Wednesday, he calls both dogs Yodie, he can't tell time, he doesn't know his numbers, days of week or months. He takes 18 prescriptions each day, two of which have a side effect of depression, and several that cause constipation. We get up twice during the night to take pills. I haven't slept more than 6 hours since October.
I keep thinking back to this party we went to at Christmas time. Ken really wanted to go even though he had only been out of the hospital for about a week. It was at the house of two of our DEAREST friends, and we have been to every Christmas party they have had for, I think, the last 8 or 9 years. Ken said he didn't want to miss it.
At this time in December, he couldn't walk, and his speech impairment was pretty severe. I remember I wheeled Ken in, and he felt so good seeing old friends. Then this guy walked up to Ken and started talking about how he had a stroke, too, in October almost the exact time that Ken had his. This guy was standing up, walking perfectly, dressing himself, speaking clearly, wiping his own ass, and was telling Ken about how hard his experience was. Really?? You both had a stroke at the same time, and you're up and walking and talking, and Ken is still in a wheelchair in front of you, and you're telling him how bad it was for you??? Ken asked if we could go home, cried the whole way back to the house, and took almost a week to get over it.
I've been getting more and more un-motivated. I still have eye appointments to make for Ken and social security paperwork to fill out, but I'm not doing it. I don't know why. I feel all I do is go to work, pay bills, fill out forms, clean the house, fill prescriptions, prepare meals, do laundry blah blah blah blah . . .
Thursday, January 14, 2010
January 14th, 2010 8:49am
Well, let's see.
Ken had another stroke on December 25th. We didn't know that's what it was. He was having really severe headaches, and we couldn't get his doctor on the phone, so we decided to drive out to Fair Oaks Hospital ER in the hopes they could give us a Rx for something.
When we got there, they ran a CT scan and did some blood work and said that everything was fine there. (They wanted to check for cranial bleeding). And the on-call doctor for our surgeon said she wanted to take and MRI and MRA just to be safe, so she asked the Hospital to transfer Ken to Fairfax hospital.
We went over there, the did the MRI and the MRA, and we waited. Finally, they informed us that Ken had had another stroke. The decided to increase his blood pressure medicine and move him to the Neurological ICU.
He was there until about the 31st, and then they moved him into a semi-private room in the stroke center.
They put him on a dilaudid IV drip into a central line with a button he could use to give him a boost of medicine when needed. They slowly moved him off of that over to oral medication - 20mg of oxycotin three times a day, and 4mg of dilaudid every 3 hours. Then Monday afternoon, January 4th, they sent us home.
He is doing well and his pain is well managed. I am worried about him being on that many narcotics, but I guess we have no choice.
We fight constantly now. He has become very emotional, and he swings from very depressed to very angry and back again in the span of a half an hour. I don't know what has happened to me, but I feel like my compassion has run out. He is so unappreciative of everything. I can't tell you the lengths I had to go to to find a speech therapist to visit the house for him, and when she came, he said, he doesn't like her, and wants a new one. I thought she was fine, and is the only one I can get to come here, and she has to drive from Ashburn to get here (two towns over).
He doesn't want to take his pills. He challenges EVERYTHING. He blames me for keeping pills away from him. He wants to take the dilauded every 2 hours, which I think is pretty dangerous, but I just don't care anymore. He took three of them at some point in the middle of the night last night.
If he was a child, I could assert some authority, but he is grown person. I don't know what I am going to do.
Ken had another stroke on December 25th. We didn't know that's what it was. He was having really severe headaches, and we couldn't get his doctor on the phone, so we decided to drive out to Fair Oaks Hospital ER in the hopes they could give us a Rx for something.
When we got there, they ran a CT scan and did some blood work and said that everything was fine there. (They wanted to check for cranial bleeding). And the on-call doctor for our surgeon said she wanted to take and MRI and MRA just to be safe, so she asked the Hospital to transfer Ken to Fairfax hospital.
We went over there, the did the MRI and the MRA, and we waited. Finally, they informed us that Ken had had another stroke. The decided to increase his blood pressure medicine and move him to the Neurological ICU.
He was there until about the 31st, and then they moved him into a semi-private room in the stroke center.
They put him on a dilaudid IV drip into a central line with a button he could use to give him a boost of medicine when needed. They slowly moved him off of that over to oral medication - 20mg of oxycotin three times a day, and 4mg of dilaudid every 3 hours. Then Monday afternoon, January 4th, they sent us home.
He is doing well and his pain is well managed. I am worried about him being on that many narcotics, but I guess we have no choice.
We fight constantly now. He has become very emotional, and he swings from very depressed to very angry and back again in the span of a half an hour. I don't know what has happened to me, but I feel like my compassion has run out. He is so unappreciative of everything. I can't tell you the lengths I had to go to to find a speech therapist to visit the house for him, and when she came, he said, he doesn't like her, and wants a new one. I thought she was fine, and is the only one I can get to come here, and she has to drive from Ashburn to get here (two towns over).
He doesn't want to take his pills. He challenges EVERYTHING. He blames me for keeping pills away from him. He wants to take the dilauded every 2 hours, which I think is pretty dangerous, but I just don't care anymore. He took three of them at some point in the middle of the night last night.
If he was a child, I could assert some authority, but he is grown person. I don't know what I am going to do.
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