Friday we moved Dee Dee out of our house. Brian moved her things up to Gardenview while my mom and I took her out to lunch to break the news to her. All in all, she seemed to take the news remarkably well. She didn't say anything as we drove there, except to comment in a disparaging voice as we pulled up, "Oh. This place."
She said nothing as we entered. I walked her back to her room to get settled while my mom handled the paperwork. As we walked through the halls, she seemed increasingly sluggish and drowsy. I was almost worried she might collapse - her head was hanging so low and she was slouching tremendously. Several nurses and staff people greeted her, cheerfully welcoming her back. It was as if she didn't even hear them. She didn't raise her head or acknowledge them in any way. Then after one nurse left us, Dee Dee jerked her head up and started talking with me. At which point I realized the sluggishness was an act. She was determined not to talk to "those people."
Now, Dee Dee has several personality modes which I've had the privilege to get to know over the last few months. There's sweet Dee Dee, funny Dee Dee (she has an amazingly sharp wit still), agitated Dee Dee, ...and scheming Dee Dee, which is one of my new favorites. In scheming mode, Dee Dee is upbeat and smily, and revels in sharing her clever ideas to trick the people who are thwarting her desires. This Dee Dee first showed up while trying to trick her home health caregivers into letting her out of the house so she could go to the lake on her own. And Dee Dee was in full scheming mode this afternoon.
As mom and I were organizing things in her room, she started grinning as she explained to us the clever plan she had devised to escape and meet me back at my house. I can't say I fully understood the intricacies of the plan, but it included some of the following elements: 1) telling everyone it was storming outside to fool them (since it was actually a beautiful sunny day); 2) crumbling the bag of homemade cookies I brought for her into tiny crumbs; 3) collecting all the shoes she could find, including those on her roommate's side of the room; 4) sneaking covertly into the hall and scoping out exits; 5) jumping onto a delivery truck in the rain so that no one would notice her; 6) meeting me back at my house later this evening.
She was clearly not happy to be back at Gardenview, but she was channeling her dismay in a way which by far easier on Mom and me than we were expecting. There were no scenes, no tears, no physical struggles... only cheerful schemes to escape.
My mom stayed with Dee Dee several hours this afternoon, and reported that Dee Dee even brightened a little at dinner when she recognized several faces in the room. When my mom left her this evening, settled into a recliner in a common lounge area, she was cheerful. Mom reminded her that my aunt would be coming up to see her tomorrow, probably in the afternoon near lunchtime. Dee Dee asked her, "So, if I'm back by 11:30, that would be soon enough?" Clearly she is planning to escape tonight, but be back in time to visit with her daughter tomorrow.
Needless to say, Mom made sure before she left here that the nurses got Dee Dee's "wanderguard" bracelet set up, so she won't be escaping tonight. However, I wouldn't be surprised to see her tomorrow and hear all about her nighttime escapades around the town.
Thanks to all of you who have been praying for us throughout the day and sharing words of encouragement. Many of you have expressed concern that I shouldn't feel guilty, so let me assure you that I really don't. I feel very sad that we can't keep Dee Dee with us any longer, but I truly believe this will be the best situation for our family and ultimately for Dee Dee as she needs more and more care (even though she will never admit it).
Saturday, September 5, 2009
Thursday, September 3, 2009
At a Crossroads
Man, what a crazy last couple days.
Tuesday night was great. Dee Dee got up just twice to use the restroom, but otherwise slept through the night. We all thought, "Great, looks like we're set!"
Then last night happened. Dee Dee was out and about all day long. No naps. We gave her the Trazodone to help her sleep. So she went to sleep at about 9:15. We knew she was going to sleep through the night again.
I was gone until a little after midnight, but when I got home Dee Dee was awake for the night. She'd only slept for about an hour and a half. Diane (Michele's mom) spent the night on the couch and took care of Dee Dee most of the night. Dee Dee was very concerned because she knew that if she didn't keep one bare foot on the tile floor, she would die. So that episode took over an hour and a bunch of cajoling and creative thinking to get her to her recliner. And so on and so forth. Several times she threatened Diane that if she didn't do what Dee Dee said, she'd yell and wake up the whole floor.
She was awake mostly all day again today, so I don't know where she's getting the energy. Maybe she's built up an immunity to Trazodone after one night, or she has a super-power where she gets energy from sleep aids. Those are about the only possibilities that seems logical to me at this point.
For the first time today, I got to witness agitated, insistent, paranoid Dee Dee. She has historically saved those mostly for Michele, Diane, and Ace. It was quite remarkable. She really didn't want Jennifer, our home health worker, to be in our home. She kept on dismissing her, making up all kinds of stories about why she needed to leave. I was Dee Dee's only recourse. "Brian, you don't understand. She needs to go, because we're leaving."
But Dee Dee, I need to go back to work. We're not going out to lunch. She'd shake her head in frustration and say "Brian, would I lie to you? Would I? You just have to trust me!" while she grabbed my arm tightly. This went on for about a half hour until I really did have to go back to work. The afternoon went on in a similar vein until Jennifer left.
Basically, we're back to where we were before the hospital episode. She's not sleeping through the night. Getting rid of the urinary tract infection doesn't seem to have helped her dementia. And she's getting more and more irritated with her family, to the point of physical resistance sometimes.
At this point, it looks like Dee Dee is going back to Gardenview tomorrow. Tonight will be an adventure, but we're taking it in shifts. I've got First Watch. But even if things go perfectly tonight (we're upping the sleep aid dosage by 50%, per the doctor's suggestion), I don't think it will change the outlook.
By the way, I'm not upset by Dee Dee getting upset with me. I fully expected those kinds of episodes when I signed up for this. What cracks me up is that when we went out to dinner tonight, she brought up out of the blue how unhelpful and irrational I'd been that day.
So some things she remembers just fine. ;)
Tuesday night was great. Dee Dee got up just twice to use the restroom, but otherwise slept through the night. We all thought, "Great, looks like we're set!"
Then last night happened. Dee Dee was out and about all day long. No naps. We gave her the Trazodone to help her sleep. So she went to sleep at about 9:15. We knew she was going to sleep through the night again.
I was gone until a little after midnight, but when I got home Dee Dee was awake for the night. She'd only slept for about an hour and a half. Diane (Michele's mom) spent the night on the couch and took care of Dee Dee most of the night. Dee Dee was very concerned because she knew that if she didn't keep one bare foot on the tile floor, she would die. So that episode took over an hour and a bunch of cajoling and creative thinking to get her to her recliner. And so on and so forth. Several times she threatened Diane that if she didn't do what Dee Dee said, she'd yell and wake up the whole floor.
She was awake mostly all day again today, so I don't know where she's getting the energy. Maybe she's built up an immunity to Trazodone after one night, or she has a super-power where she gets energy from sleep aids. Those are about the only possibilities that seems logical to me at this point.
For the first time today, I got to witness agitated, insistent, paranoid Dee Dee. She has historically saved those mostly for Michele, Diane, and Ace. It was quite remarkable. She really didn't want Jennifer, our home health worker, to be in our home. She kept on dismissing her, making up all kinds of stories about why she needed to leave. I was Dee Dee's only recourse. "Brian, you don't understand. She needs to go, because we're leaving."
But Dee Dee, I need to go back to work. We're not going out to lunch. She'd shake her head in frustration and say "Brian, would I lie to you? Would I? You just have to trust me!" while she grabbed my arm tightly. This went on for about a half hour until I really did have to go back to work. The afternoon went on in a similar vein until Jennifer left.
Basically, we're back to where we were before the hospital episode. She's not sleeping through the night. Getting rid of the urinary tract infection doesn't seem to have helped her dementia. And she's getting more and more irritated with her family, to the point of physical resistance sometimes.
At this point, it looks like Dee Dee is going back to Gardenview tomorrow. Tonight will be an adventure, but we're taking it in shifts. I've got First Watch. But even if things go perfectly tonight (we're upping the sleep aid dosage by 50%, per the doctor's suggestion), I don't think it will change the outlook.
By the way, I'm not upset by Dee Dee getting upset with me. I fully expected those kinds of episodes when I signed up for this. What cracks me up is that when we went out to dinner tonight, she brought up out of the blue how unhelpful and irrational I'd been that day.
So some things she remembers just fine. ;)
Tuesday, September 1, 2009
Coming Home Today
Michele and I had some good talks yesterday with everyone involved, concerning where Dee Dee should go once we check her out of the hospital. Except for Dee Dee. We all know what her opinion is. ;)
The psychiatrist made his opinion clear: Dee Dee should be going to a nursing home. His concerns, though, were pretty much exclusively for our family. It would be too much. She's not sleeping through the night. We're not equipped. It's only going downhill from here. Think of your children. Etc.
I wasn't there for this, but he interviewed Dee Dee for about a minute before he came out and talked to Diane and Michele. He started off by saying that when a patient has Alzheimers, but then Diane stopped him. Dee Dee's doctors had never used that term for her before, apparently. The psychiatrist said he was referring to a broad spectrum of elderly dementia symptoms and then continued.
So clearly, I need some more info on Alzheimers. Does it just refer to elderly dementia? Or forgetfulness? Or what? Or does it even matter?
I think Ace and Diane's concerns were also for our family. Because they know how tough it's been the last week. And Michele and I agree. If last week is the new baseline, our home is not the place for Dee Dee.
However, there are a few main reasons we all agreed to take her back here today:
1) Gardenview has a room available now, but Dee Dee would only stay there temporarily until another room opens up, in maybe two weeks. We remember that last time she changed rooms at Gardenview, Dee Dee was pretty confused. So it makes sense to wait a couple weeks before she goes there.
2) The urinary tract infection is being treated, so she might be less confused than she has been the last week.
3) She's been prescribed a sleep aid - Trazadone, I believe - that should help her sleep better. Warning: one of the possible side effects is confusion. Yikes! But in theory, if she's sleeping better at night, she'll be safer and we'll be saner. It'll be interesting to figure out what time to give her this pill at night. How long does it last? How fast does it knock her out? Or will it just make her groggy but still awake?
4) If things are obviously not better over the next couple days, we're raising the white flag. Dee Dee goes to Gardenview and we go back to taking her on outings just like we did before.
So that's the plan. Michele and I are planning on sleeping in shifts tonight. The thinking is that we can each get a few hours of uninterrupted sleep rather than more hours of fitful dozing.
The psychiatrist made his opinion clear: Dee Dee should be going to a nursing home. His concerns, though, were pretty much exclusively for our family. It would be too much. She's not sleeping through the night. We're not equipped. It's only going downhill from here. Think of your children. Etc.
I wasn't there for this, but he interviewed Dee Dee for about a minute before he came out and talked to Diane and Michele. He started off by saying that when a patient has Alzheimers, but then Diane stopped him. Dee Dee's doctors had never used that term for her before, apparently. The psychiatrist said he was referring to a broad spectrum of elderly dementia symptoms and then continued.
So clearly, I need some more info on Alzheimers. Does it just refer to elderly dementia? Or forgetfulness? Or what? Or does it even matter?
I think Ace and Diane's concerns were also for our family. Because they know how tough it's been the last week. And Michele and I agree. If last week is the new baseline, our home is not the place for Dee Dee.
However, there are a few main reasons we all agreed to take her back here today:
1) Gardenview has a room available now, but Dee Dee would only stay there temporarily until another room opens up, in maybe two weeks. We remember that last time she changed rooms at Gardenview, Dee Dee was pretty confused. So it makes sense to wait a couple weeks before she goes there.
2) The urinary tract infection is being treated, so she might be less confused than she has been the last week.
3) She's been prescribed a sleep aid - Trazadone, I believe - that should help her sleep better. Warning: one of the possible side effects is confusion. Yikes! But in theory, if she's sleeping better at night, she'll be safer and we'll be saner. It'll be interesting to figure out what time to give her this pill at night. How long does it last? How fast does it knock her out? Or will it just make her groggy but still awake?
4) If things are obviously not better over the next couple days, we're raising the white flag. Dee Dee goes to Gardenview and we go back to taking her on outings just like we did before.
So that's the plan. Michele and I are planning on sleeping in shifts tonight. The thinking is that we can each get a few hours of uninterrupted sleep rather than more hours of fitful dozing.
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