Sunday, June 19, 2016
Tuesday, June 14, 2016
Maybe it's not a delusion
This week I am attending at a workshop on the economics of cyber-security. The topics include is infrastructure, such as power grids and transportation, cyber-crime, and a few other of the usual subjects. Leaving the house these days always more complicated because Don needs more daytime supervision. As recommended by the neurologist after the slide, he is attending the day program more often, even though he has said he hates it.
The personnel at Birchwood have been updating me almost daily on their observations. They also had noticed the slide, and were concerned. Yesterday I received a note from his day program nurse.
I wanted to let you know that Don was wearing slippers that were too big and I was afraid he may fall. We let him use our walker again today and that seemed to help. Also he did have delusions while in my office. He stated that you were in Alaska and that your teenage daughter was in charge. He also said that you were working with Thermal Nuclear war. Just wanted you to know.
My reply:
The personnel at Birchwood have been updating me almost daily on their observations. They also had noticed the slide, and were concerned. Yesterday I received a note from his day program nurse.
I wanted to let you know that Don was wearing slippers that were too big and I was afraid he may fall. We let him use our walker again today and that seemed to help. Also he did have delusions while in my office. He stated that you were in Alaska and that your teenage daughter was in charge. He also said that you were working with Thermal Nuclear war. Just wanted you to know.
My reply:
I am working with the White House commission on cyber security At Berkeley in California (not Alaska)
And the teenager is not in charge. Her godmother is
Then the next day in the discussion in the morning session of the conference I was attending we talked about directions for research, and eventually worked into the cyber-security triggers global disasters. Someone mentioned the obvious, thermo-nuclear war. A little bell rang in my head - maybe I had mentioned thermo-nuclear war?
My second note to the caregiver:
My second note to the caregiver:
Correction
Today we are talking about cyber security infrastructure and, as he [Don] said, thermo-nuclear war
I guess I mentioned it.
She answered:
Ok Thanks! That means it wasn’t a delusion. J
My life is so surreal.
Friday, June 3, 2016
Black Friday
I don't know what I expected the results from the neurologist would be, but not this.
The talk we had was short but not sweet. The neurologist is almost the same age as Don. (Within a year) He stated Don was chronologically 64, but looked and acted like he was in his eighties. Don cannot handle financial or medical decisions, and should have a conservatorship and guardianship established. That is already done.The neurologist stated Don needs 24-7 care for cognitive issues.
24-7? Holy crap. I can't wrap my brain around that. Is he incompetent like a 2 yr old? Or a ten year old? Or a twelve yr old? How do you manage care like that? I made an appointment with a lawyer to start discussing Medicaid qualification again. If I need more help to keep him at home, how are we going to pay for it? And will I ever be able to leave the house?
The news came after Don and I had a nice lunch with Jan and Ken Morris. When Don went to the bathroom they turned to me and said, "What a shock! What has happened to him?" I had tried to warn them that he had been sick, but seeing Don at 133 lbs using a cane, and not following conversation really brings the situation home. The lunch is part of what I am secretly calling the farewell tour. I am trying to connect with old friends while he can still enjoy it. Based on the news, I may be too late in the game.
The only bright spot was Don seemed to understand what the neurologist said. He looked at me and said clearly, "That was some really bad news." He seems to understand that he will not be able to be left to his own devices, like he was trying to do earlier in the week. Maybe he will stop fighting what we are doing to make him better.
The talk we had was short but not sweet. The neurologist is almost the same age as Don. (Within a year) He stated Don was chronologically 64, but looked and acted like he was in his eighties. Don cannot handle financial or medical decisions, and should have a conservatorship and guardianship established. That is already done.The neurologist stated Don needs 24-7 care for cognitive issues.
24-7? Holy crap. I can't wrap my brain around that. Is he incompetent like a 2 yr old? Or a ten year old? Or a twelve yr old? How do you manage care like that? I made an appointment with a lawyer to start discussing Medicaid qualification again. If I need more help to keep him at home, how are we going to pay for it? And will I ever be able to leave the house?
The news came after Don and I had a nice lunch with Jan and Ken Morris. When Don went to the bathroom they turned to me and said, "What a shock! What has happened to him?" I had tried to warn them that he had been sick, but seeing Don at 133 lbs using a cane, and not following conversation really brings the situation home. The lunch is part of what I am secretly calling the farewell tour. I am trying to connect with old friends while he can still enjoy it. Based on the news, I may be too late in the game.
The only bright spot was Don seemed to understand what the neurologist said. He looked at me and said clearly, "That was some really bad news." He seems to understand that he will not be able to be left to his own devices, like he was trying to do earlier in the week. Maybe he will stop fighting what we are doing to make him better.
Thursday, June 2, 2016
Bad Thursday
We are not in the emergency room. But we may be headed there soon if the slide continues. I am starting to see some of the behaviors that preceded the psychotic break of 2014.
Don decided to run away from home today. He didn't want to go to his day program. I got him dressed and ready, and then took my shower and got dressed. Based on our discussion with his counselor yesterday, I was avoiding him in the morning to allow him to move at his own speed. When I came downstairs, the front door was open and he was gone. I looked at my watch, and it was within the range of time when his Senior Services ride usually arrives. So I didn't worry about it.
Then suddenly he came through the garage door. He said he had been circling the house.
Apparently I hadn't noticed he was running away, so he had to come back to make sure I knew he was going. So he takes off again and heads up the the street. Now, since I know, I have to follow him and get him to come back. I get him turned around and his Senior Services ride arrives. He refuses to get into the car and tells the driver to go away.
Then he starts hitting me with his cane. I try to get him into my car to take him either to Birchwood, or the emergency room. He starts beating on the dashboard with his cane, so I take the cane away.
The Senior Services drive stays to make sure we don't need to call the police. I go get my keys and he gets out of the car again. He tells me I am crazy and he is going to break everything he can get his hands on - and shakes me. I called Katy to talk him down. He tells her I am crazy.
Finally I get into the car and convince him we are going either to Senior Services or the emergency room - but he isn't staying home. During the drive to Senior Services he opens the door several times to show me how mad he is. As the drive continues he calms down. I still don't know where to take him - is it bad enough to commit him to 48 evaluation in the mental ward, or can he still be reached? Katy is supposed to visit tomorrow, but if he melts down he will be in the locked ward when she gets here. I decide to try going to Senior Services to see if he will go.
When we get there, Don is so angry at me. But this time he asked to talk to Kary. I call her again. She tells him, "Hang on til I get there." He says, "I don't know if I can." I don't know if he can either. But he did go into the day program. And then I had lots of 'splaining to the staff.
After I got home, I got another call. The Senior Services drivers were concerned about driving him and I would need to pick him up. No surprise there. Then I got another call saying he wanted to come home early. Really? He may be mad at me, but he still calls on me. I am in no rush to get him back. I hope I can keep him home until Katy comes.
Don decided to run away from home today. He didn't want to go to his day program. I got him dressed and ready, and then took my shower and got dressed. Based on our discussion with his counselor yesterday, I was avoiding him in the morning to allow him to move at his own speed. When I came downstairs, the front door was open and he was gone. I looked at my watch, and it was within the range of time when his Senior Services ride usually arrives. So I didn't worry about it.
Then suddenly he came through the garage door. He said he had been circling the house.
Apparently I hadn't noticed he was running away, so he had to come back to make sure I knew he was going. So he takes off again and heads up the the street. Now, since I know, I have to follow him and get him to come back. I get him turned around and his Senior Services ride arrives. He refuses to get into the car and tells the driver to go away.
Then he starts hitting me with his cane. I try to get him into my car to take him either to Birchwood, or the emergency room. He starts beating on the dashboard with his cane, so I take the cane away.
The Senior Services drive stays to make sure we don't need to call the police. I go get my keys and he gets out of the car again. He tells me I am crazy and he is going to break everything he can get his hands on - and shakes me. I called Katy to talk him down. He tells her I am crazy.
Finally I get into the car and convince him we are going either to Senior Services or the emergency room - but he isn't staying home. During the drive to Senior Services he opens the door several times to show me how mad he is. As the drive continues he calms down. I still don't know where to take him - is it bad enough to commit him to 48 evaluation in the mental ward, or can he still be reached? Katy is supposed to visit tomorrow, but if he melts down he will be in the locked ward when she gets here. I decide to try going to Senior Services to see if he will go.
When we get there, Don is so angry at me. But this time he asked to talk to Kary. I call her again. She tells him, "Hang on til I get there." He says, "I don't know if I can." I don't know if he can either. But he did go into the day program. And then I had lots of 'splaining to the staff.
After I got home, I got another call. The Senior Services drivers were concerned about driving him and I would need to pick him up. No surprise there. Then I got another call saying he wanted to come home early. Really? He may be mad at me, but he still calls on me. I am in no rush to get him back. I hope I can keep him home until Katy comes.
Wednesday, June 1, 2016
The slide
I finally sent a text to Don's sister, Katy, in Virginia. The gist was - come while he still knows who you are. It seems to me during these last two weeks of May, Don is on a downward spiral. He is more unsteady on his feet. As a result, he can't make it to the bathroom in the middle of the night. A combination of sleepiness, darkness, and unsteadiness makes the trip to the bathroom fraught with peril. After cleaning up the floor for two nights multiple times, I have started to turn on the lights myself, regardless if it wakes me up to the point I cannot go back to sleep. Either I turn on the lights and wake up, or clean the floor and wake up, or change the sheets and, of course, wake up. Full nights of sleep are not in my immediate future.
The night problems are accompanied by day problems. Don is resisting going to his day program. And taking meds because either it is too much trouble or because I am telling him to do it. He is forgetting how to cook things he has been making for years. He asked me to help him make a quiche. I have never made a quiche, so I looked it up on the Internet. It turned out good, but he still complained about it.
In the last week I have started to help him get dressed in the morning. He is having trouble, as Abraham Lincoln says, putting on his pants one leg at a time. Half the time they are on backwards. He has no butt any more, so it doesn't really make a difference other the pockets point backward toward his rear. I am not sure whether he can't see the two different leg openings, or can't comprehend how they relate to his two legs.
Getting him to eat is a struggle. I know he is not eating all his meals. Taking him out to eat means he does eat, and going to his day program means he does eat. But so often he says he has no appetite. My cooking, such as it isn't, will not tempt him. He has lost another 15 lbs at least. He seems to lose a little more brain function every 2-3 days. We have a series of doctor appointments coming up, and I hope that will get us some answers. I am not sure I will like the answers we get.
The night problems are accompanied by day problems. Don is resisting going to his day program. And taking meds because either it is too much trouble or because I am telling him to do it. He is forgetting how to cook things he has been making for years. He asked me to help him make a quiche. I have never made a quiche, so I looked it up on the Internet. It turned out good, but he still complained about it.
In the last week I have started to help him get dressed in the morning. He is having trouble, as Abraham Lincoln says, putting on his pants one leg at a time. Half the time they are on backwards. He has no butt any more, so it doesn't really make a difference other the pockets point backward toward his rear. I am not sure whether he can't see the two different leg openings, or can't comprehend how they relate to his two legs.
Getting him to eat is a struggle. I know he is not eating all his meals. Taking him out to eat means he does eat, and going to his day program means he does eat. But so often he says he has no appetite. My cooking, such as it isn't, will not tempt him. He has lost another 15 lbs at least. He seems to lose a little more brain function every 2-3 days. We have a series of doctor appointments coming up, and I hope that will get us some answers. I am not sure I will like the answers we get.
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