In the past week, Michele and I have been swarmed with calls, emails, and offers of help. Thanks so much to all of you. Michele got some flowers from Sarah and an offer of Dee-Dee-sitting from Juli. Lynda has offerred to come up from Texas to help out, and tonight Maggi is bringing us some dinner. Wow! I know I’m forgetting some folks – we appreciate and thank all of you.
Add to that all the normal, everyday help from Denise and Diane, and we feel pretty lucky. Even when things have been tough like they've been the last couple weeks.
Especially touching to me personally has been the offers of help from friends of our in Jefferson City. A lot of those friends have been following the blog, and some were notified by a prayer chain request Michele sent to our old church. Michele's had some great talks with Julie and Stephanie and probably some others.
Last night, I had a great talk with another old JC friend, Jana. Her cousin, Roxana, is some kind of geriatric specialist (Jana – what is her title again?) and had some great advice for us.
One of the pieces of advice I thought was especially intriguing. Roxana said that in cases where there is a sudden and rapid increase in dementia, it’s usually (75% of the time) related to a bladder infection. Especially among women. She said this was especially important for us to know because most primary care doctors don’t know to look for that.
It reminded me that perhaps we’d be better served by seeing a geriatric specialist instead of Dee Dee’s long-time doctor. I don’t know. If anyone has any experience with doctors specializing in geriatric medicine, please let us know!
Tuesday, August 25, 2009
Friday, August 21, 2009
Dreams
"Have you ever had a dream that seemed so real that you just can't shake it?"
That's what Dee Dee has asked me several times in the last couple days. We just went out for some White Castle, just Michele, Dee Dee, and me. It was a good time. Since it was over my lunch hour, we drove separately, although I was able to swing it so that I drove with Dee Dee alone there.
I'd been thinking for a while about if/how to bring up the "I'm Dead" topic. I broached it today in the car. I decided I would avoid trying to convince her that she's not dead and instead just focus on how much she loves Michele, and it makes Michele sad when people talk about death with her.
So that was my plan. I executed it somewhat okay, but she threw me for a curve by implying that she doesn't really believe she's dead lately but that she's had really realistic dreams.
In short, I think the outing to White Castle went well. Michele's taking her shopping right now, and we know that at least in part, keeping Dee Dee busy is helpful in tamping down those delusions.
That's what Dee Dee has asked me several times in the last couple days. We just went out for some White Castle, just Michele, Dee Dee, and me. It was a good time. Since it was over my lunch hour, we drove separately, although I was able to swing it so that I drove with Dee Dee alone there.
I'd been thinking for a while about if/how to bring up the "I'm Dead" topic. I broached it today in the car. I decided I would avoid trying to convince her that she's not dead and instead just focus on how much she loves Michele, and it makes Michele sad when people talk about death with her.
So that was my plan. I executed it somewhat okay, but she threw me for a curve by implying that she doesn't really believe she's dead lately but that she's had really realistic dreams.
In short, I think the outing to White Castle went well. Michele's taking her shopping right now, and we know that at least in part, keeping Dee Dee busy is helpful in tamping down those delusions.
On Death and Dying, Part 2
Physically, Dee Dee seems to be doing great. We've got a new home health person (we politely fired the last one and her agency) named Jennifer, and she got on Dee Dee's good side by giving her two massages.
Mentally, things are a different story. Dee Dee has latched on to the idea that she's dead. But at the same time, she knows she's alive. She doesn't seem to have a problem with the logical inconsistencies.
While listening to a podcast of RadioLab (which I highly recommend), they had a segment on Cotard's Syndrome. You can listen to it here - just go to part 6, around the 5:00 mark of the 2nd segment. Basically, it's a mental illness where the patient believes that they are dead. Reading up on it in Wikipedia, one of the first diagnoses of this disease went hand-in-hand with not eating, which Dee Dee did for a while Wednesday. She told Michele she didn't need to eat "because of what we talked about earlier."
Those who know Dee Dee lately knows that she loves to eat. I wouldn't have thought she could go 4 hours without eating. But she went almost 24 hours the other day.
Anyway, I'm not a doctor and I have no idea if this is what she suffers from. But I personally find it helpful to look at her thoughts as the effects of a disease rather than ... I don't know. To me, it seems similar to when your three-year-old might say "I hate you, Daddy!" You're not going to lose sleep over it. It's a passing thought that they sincerely hold, but it doesn't reflect their true self. If you decide to argue with the three-year-old, you'll be sorely disappointed. They don't hold to ideas of logic or reason.
It's fair to say that Michele is struggling pretty hard with these death delusions. I think we were pretty prepared for her forgetfulness and her physical impairments. But the delusions have caught us off guard.
We're getting her to see a doctor soon. The hope is that he can either convince that as a medical expert, she can believe him when he says she's not dead. Otherwise, he could refer us to a psychiatrist or something.
Basically, we don't know how to talk to her. Do we contradict her? Convince her she's alive? Or can Dee Dee happily live another decade believing she's dead? Or is it a passing fancy that we shouldn't worry about?
Right now, Dee Dee treats Michele as her confidante. That's a good thing. But I'm thinking it might be helpful for some other folks Dee Dee knows and loves to also talk to her about these thoughts.
Mentally, things are a different story. Dee Dee has latched on to the idea that she's dead. But at the same time, she knows she's alive. She doesn't seem to have a problem with the logical inconsistencies.
While listening to a podcast of RadioLab (which I highly recommend), they had a segment on Cotard's Syndrome. You can listen to it here - just go to part 6, around the 5:00 mark of the 2nd segment. Basically, it's a mental illness where the patient believes that they are dead. Reading up on it in Wikipedia, one of the first diagnoses of this disease went hand-in-hand with not eating, which Dee Dee did for a while Wednesday. She told Michele she didn't need to eat "because of what we talked about earlier."
Those who know Dee Dee lately knows that she loves to eat. I wouldn't have thought she could go 4 hours without eating. But she went almost 24 hours the other day.
Anyway, I'm not a doctor and I have no idea if this is what she suffers from. But I personally find it helpful to look at her thoughts as the effects of a disease rather than ... I don't know. To me, it seems similar to when your three-year-old might say "I hate you, Daddy!" You're not going to lose sleep over it. It's a passing thought that they sincerely hold, but it doesn't reflect their true self. If you decide to argue with the three-year-old, you'll be sorely disappointed. They don't hold to ideas of logic or reason.
It's fair to say that Michele is struggling pretty hard with these death delusions. I think we were pretty prepared for her forgetfulness and her physical impairments. But the delusions have caught us off guard.
We're getting her to see a doctor soon. The hope is that he can either convince that as a medical expert, she can believe him when he says she's not dead. Otherwise, he could refer us to a psychiatrist or something.
Basically, we don't know how to talk to her. Do we contradict her? Convince her she's alive? Or can Dee Dee happily live another decade believing she's dead? Or is it a passing fancy that we shouldn't worry about?
Right now, Dee Dee treats Michele as her confidante. That's a good thing. But I'm thinking it might be helpful for some other folks Dee Dee knows and loves to also talk to her about these thoughts.
Tuesday, August 18, 2009
On Death and Dying
Dee Dee had a rough birthday this year. On Sunday, she turned 89. As always, she was surrounded by loving relatives. Dave and Billye flew in from California, and Lisa and the boys came in from Chicago. She got the traditional singing and sirens at Happy Joe's Pizzeria.
But all was not well with her soul. A few nights ago (Friday night), she started writing notes like crazy. She was especially restless. In the morning, she told Michele that she had a premonition from God that she was going to die the next night. She spent a lot of the day crying Saturday.
Michele and Diane took her out to lunch that day at Lion's Choice. While they were eating, an ambulance drove by, but Dee Dee didn't comment on it.
Later, when they got home, Dee Dee mentioned "Did you see what happened at Lion's Choice?"
"What was that, Dee Dee?"
"That ambulance? It stopped and picked me up. I'm dead."
"I didn't see that part, Dee Dee."
"Yeah, well, it happened in a split second."
Dee Dee could not be convinced that she wasn't dead. Only hours later, after she'd had dinner with a bunch of kids and grandkids and great-grandkids, did she acknowledge that maybe she isn't dead.
Michele had a talk with Dee Dee that night, prompted by Dee Dee's concerns about how she was raised in the Catholic church, and if you ever go to another church, even just to visit, you're kicked out of the Catholic church. Michele had a good opportunity to share the basic gospel message with Dee Dee, which apparently greatly relieved her. Michele's not sure how much sunk in, but Dee Dee thought it was literally "good news!"
Still, Michele and I slept a little lighter than normal that night. Isn't that how all the stories you hear turn out? The crazy person says something is going to happen, nobody believes them, and then it turns out to be true?
She seemed pretty good for a couple days, although she still cried a couple times. She told us, "Well, when you're turning 90, it's pretty emotional." (She's continually disappointed when we remind her that she's only 89)
Last night, around 12:30 a.m., Michele found Dee Dee in the kitchen, writing again. The note read something like "I didn't want to spoil anyone's night or wake anyone up, but I'm going to die peacefully in my sleep tonight." She'd apparently had another premonition.
So that's where we are today. In a lot of ways, talking about death can be healthy. Part of our consternation about all this death-talk is just our own fear of Dee Dee dying. I know she's going to die someday, but I don't want her to talk about it.
But it's still disturbing to see her so delusional, to confuse death with being alive, to get premonitions from God, to imagine ambulance rides that never happened.
And of course, it's tough to watch Dee Dee be so sad.
Some of you have heard me comment that my goal in this family is to keep the kids laughing, and to keep Michele from crying. Now I'm amending it to "... and keep Michele and Dee Dee from crying."
But all was not well with her soul. A few nights ago (Friday night), she started writing notes like crazy. She was especially restless. In the morning, she told Michele that she had a premonition from God that she was going to die the next night. She spent a lot of the day crying Saturday.
Michele and Diane took her out to lunch that day at Lion's Choice. While they were eating, an ambulance drove by, but Dee Dee didn't comment on it.
Later, when they got home, Dee Dee mentioned "Did you see what happened at Lion's Choice?"
"What was that, Dee Dee?"
"That ambulance? It stopped and picked me up. I'm dead."
"I didn't see that part, Dee Dee."
"Yeah, well, it happened in a split second."
Dee Dee could not be convinced that she wasn't dead. Only hours later, after she'd had dinner with a bunch of kids and grandkids and great-grandkids, did she acknowledge that maybe she isn't dead.
Michele had a talk with Dee Dee that night, prompted by Dee Dee's concerns about how she was raised in the Catholic church, and if you ever go to another church, even just to visit, you're kicked out of the Catholic church. Michele had a good opportunity to share the basic gospel message with Dee Dee, which apparently greatly relieved her. Michele's not sure how much sunk in, but Dee Dee thought it was literally "good news!"
Still, Michele and I slept a little lighter than normal that night. Isn't that how all the stories you hear turn out? The crazy person says something is going to happen, nobody believes them, and then it turns out to be true?
She seemed pretty good for a couple days, although she still cried a couple times. She told us, "Well, when you're turning 90, it's pretty emotional." (She's continually disappointed when we remind her that she's only 89)
Last night, around 12:30 a.m., Michele found Dee Dee in the kitchen, writing again. The note read something like "I didn't want to spoil anyone's night or wake anyone up, but I'm going to die peacefully in my sleep tonight." She'd apparently had another premonition.
So that's where we are today. In a lot of ways, talking about death can be healthy. Part of our consternation about all this death-talk is just our own fear of Dee Dee dying. I know she's going to die someday, but I don't want her to talk about it.
But it's still disturbing to see her so delusional, to confuse death with being alive, to get premonitions from God, to imagine ambulance rides that never happened.
And of course, it's tough to watch Dee Dee be so sad.
Some of you have heard me comment that my goal in this family is to keep the kids laughing, and to keep Michele from crying. Now I'm amending it to "... and keep Michele and Dee Dee from crying."
Monday, August 10, 2009
I've got to get to the Lake to see my family
The family headed down to the Lake of the Ozarks, with Dee Dee, to hang out with Michele's sister and her two boys. It went great. Dee Dee had lots of people on hand to help her, and I think it's good for her any time we get her out of the house.
On Friday, we brought Dee Dee back from the Lake. She took a nap in the car and then when she got home. This turned out to be important, as in her mind, she was just with us at the Lake.
At 1:00, we got our new home health person, Yolanda. We had the standard meet and greet that we've become accustomed to. After Dee Dee was settled and looked good to go, the rest of us headed out the door for some family time at the mall.
While we were gone, apparently, Dee Dee tried to leave the house repeatedly. Since there are several doors on the main level that she has rarely seen used, this meant that she was trying the door to the garage, the front door, and the door to the basement (the most dangerous door of all for her). Yolanda of course prevented her from leaving, at one point even standing in front of Dee Dee.
Dee Dee asked for Yolanda's phone at another point, saying that she needed to call us.
So it didn't go well. We got the after-action report from Yolanda, then later we heard Dee Dee's side of the story. You see, that woman was keeping Dee Dee from going to the Lake to see her family. We had left without her. Yolanda was mean. She wouldn't even let Dee Dee use her phone to call 911. She wouldn't let Dee Dee leave the house to find us.
"But Dee Dee, we weren't at the Lake. We told you we were just running some errands."
"But I told her I needed to go to the Lake to see my family, and she wouldn't let me!"
"Dee Dee, we told you, we weren't at the Lake."
"But she didn't know that."
Dee Dee was obviously very confused, and it was the most agitated I'd ever seen her. She definitely believed that we drove to the Lake while Yolanda was there. But even after she recognized that we were just out running errands, she was still upset that Yolanda wouldn't believe anything Dee Dee said. I've never known Dee Dee to dislike anyone, but she definitely disliked Yolanda.
We had high hopes before that visit that Dee Dee would adjust well to her new home health helper, but Friday was not a good start.
On Friday, we brought Dee Dee back from the Lake. She took a nap in the car and then when she got home. This turned out to be important, as in her mind, she was just with us at the Lake.
At 1:00, we got our new home health person, Yolanda. We had the standard meet and greet that we've become accustomed to. After Dee Dee was settled and looked good to go, the rest of us headed out the door for some family time at the mall.
While we were gone, apparently, Dee Dee tried to leave the house repeatedly. Since there are several doors on the main level that she has rarely seen used, this meant that she was trying the door to the garage, the front door, and the door to the basement (the most dangerous door of all for her). Yolanda of course prevented her from leaving, at one point even standing in front of Dee Dee.
Dee Dee asked for Yolanda's phone at another point, saying that she needed to call us.
So it didn't go well. We got the after-action report from Yolanda, then later we heard Dee Dee's side of the story. You see, that woman was keeping Dee Dee from going to the Lake to see her family. We had left without her. Yolanda was mean. She wouldn't even let Dee Dee use her phone to call 911. She wouldn't let Dee Dee leave the house to find us.
"But Dee Dee, we weren't at the Lake. We told you we were just running some errands."
"But I told her I needed to go to the Lake to see my family, and she wouldn't let me!"
"Dee Dee, we told you, we weren't at the Lake."
"But she didn't know that."
Dee Dee was obviously very confused, and it was the most agitated I'd ever seen her. She definitely believed that we drove to the Lake while Yolanda was there. But even after she recognized that we were just out running errands, she was still upset that Yolanda wouldn't believe anything Dee Dee said. I've never known Dee Dee to dislike anyone, but she definitely disliked Yolanda.
We had high hopes before that visit that Dee Dee would adjust well to her new home health helper, but Friday was not a good start.
Monday, August 3, 2009
Home Health Care Problems
The biggest help for us, and the only reason taking care of Dee Dee is at all possible, is the home health care helpers. Michele, is that what we call them? They bathe Dee Dee, hang out with her, do some physical therapy exercises, some light cleaning, etc. We went with a company called Home Instead.
Our hope was that we could bring someone in who could become a real friend to Dee Dee. Someone long-term. Someone that Dee Dee would look forward to seeing three times a week.
Our hopes were answered with Fozia. Sweet, mild-mannered, and just a hint of an African accent. Dee Dee fell in love with her. "When is Fozia coming back? I like her!"
Then after about two weeks, she didn't show up at her house at the appointed time. We called the agency and they tried to contact her to no avail. I still don't think we know what happened there, but I understand she's no longer employed by Home Instead.
We were worried about telling Dee Dee about Fozia not coming back. But when we broke the news to her, she just said something to the effect of "She didn't show up? Well, that's no way to run a business!"
The next caregiver, Annikki (from Sweden - man, I love those accents!) lasted a couple weeks as well. But she didn't show up last night. So that means our caregivers have lasted about two weeks each. Needless to say, we're frustrated. Do we stay with Home Instead, look for another agency, or what? Or is this such a high-turnover industry that we can't expect to have one person for years at a time?
Our hope was that we could bring someone in who could become a real friend to Dee Dee. Someone long-term. Someone that Dee Dee would look forward to seeing three times a week.
Our hopes were answered with Fozia. Sweet, mild-mannered, and just a hint of an African accent. Dee Dee fell in love with her. "When is Fozia coming back? I like her!"
Then after about two weeks, she didn't show up at her house at the appointed time. We called the agency and they tried to contact her to no avail. I still don't think we know what happened there, but I understand she's no longer employed by Home Instead.
We were worried about telling Dee Dee about Fozia not coming back. But when we broke the news to her, she just said something to the effect of "She didn't show up? Well, that's no way to run a business!"
The next caregiver, Annikki (from Sweden - man, I love those accents!) lasted a couple weeks as well. But she didn't show up last night. So that means our caregivers have lasted about two weeks each. Needless to say, we're frustrated. Do we stay with Home Instead, look for another agency, or what? Or is this such a high-turnover industry that we can't expect to have one person for years at a time?
Saturday, August 1, 2009
White Castle's Been Around a Long Time
White Castle has always been a favorite of Dee Dee's. Michele didn't feel like heading out today, and I get cabin fever easily, so I took Dee Dee and the girls out and left Michele home. Dee Dee raised the average female age at the table from 7 to 27.
In our discussion there, she mentions that White Castle has been around a long time, and that she doesn't remember a time when there wasn't a White Castle.
The first White Castle opened in 1921. Dee Dee was born in 1920. So that makes sense. I don't want to give the impression that everything she says is off-the-wall; much of what she has to say is accurate and/or insightful. But I just had to look up White Castle on Wikipedia just to double-check her recollection.
During lunch, she also talked a lot about how our girls are growing up, and boys are going to start checking them out. "You'll be out at a dance or a show [in her mind, these are what kids do on weekends] and two guys will walk by your girls, then they'll turn around and say 'Man, there goes a looker!'" After pausing to reflect, she then added "And boys don't always stop doing that even after they're married!"
Anyway, it was fun, and it felt surprisingly normal. We all ran back to the car in the rain, which has got to be the first time in years that Dee Dee has had to run in the rain.
Michele took a trip to Grant's Farm yesterday with Dee Dee and some members of Michele's Aunt's family (Ace, Ashley, Henry). We'll try to get some picture up soon of that trip.
In our discussion there, she mentions that White Castle has been around a long time, and that she doesn't remember a time when there wasn't a White Castle.
The first White Castle opened in 1921. Dee Dee was born in 1920. So that makes sense. I don't want to give the impression that everything she says is off-the-wall; much of what she has to say is accurate and/or insightful. But I just had to look up White Castle on Wikipedia just to double-check her recollection.
During lunch, she also talked a lot about how our girls are growing up, and boys are going to start checking them out. "You'll be out at a dance or a show [in her mind, these are what kids do on weekends] and two guys will walk by your girls, then they'll turn around and say 'Man, there goes a looker!'" After pausing to reflect, she then added "And boys don't always stop doing that even after they're married!"
Anyway, it was fun, and it felt surprisingly normal. We all ran back to the car in the rain, which has got to be the first time in years that Dee Dee has had to run in the rain.
Michele took a trip to Grant's Farm yesterday with Dee Dee and some members of Michele's Aunt's family (Ace, Ashley, Henry). We'll try to get some picture up soon of that trip.
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