The Move

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).

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. ;)

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.

Still in the Hospital

Dee Dee is still in the hospital, but doing fine. The sedatives they gave her in the ambulance took a while to wear off, but as of last night she was walking around and chatting normally. She no longer has back pain, which tells me it was mostly just pain from not being situated in the hospital bed correctly.

The reason she's still in the hospital is because the doctor wants her to have some more physical and occupational therapy, and he also wants to get a psychological evaluation. I think the psychiatrist was there with her as of this morning - we'll know more soon. I was hoping to have her back with us yesterday, but it was not to be.

I'll be visiting her later on today to check on her, but I'm starting to hear murmurs about her not coming back to our house when she's released. I haven't spoken to any doctors or to Ace/Diane yet, but I think there may be concern that unless the mental issues get better, our house isn't the best place for her.

I have high hopes that if the increase in dementia was caused by the urinary tract infection, she will become more coherent over the next few days. I would also add that I don't think her having more dementia affects her staying here per se. If she wants to talk to me all day about how she got married at age 15 and has parties at night with her brothers and sisters, that's fine by me.

But I also see that if the mental issues cause her to crawl around on the floor and zonk out for hours in our foyer, that's probably not the best situation.

So we'll see how things develop. As always, I'll keep the blog updated.

To the Hospital

Michele and I just got back from Missouri Baptist hospital, where Dee Dee is spending the night. Diane was with her when we left, and Ace is probably heading there at some point, too.

(By the way, Ace took her to the doctor on Friday and did indeed find that Dee Dee had a urinary tract infection. So Roxana was correct in that guess. We started her on antibiotics last night, and in fact she seemed not at all combative or agitated last night.)

Dee Dee is mostly fine. She's pretty alert. X-rays and MRI (or maybe CT scan?) came back negative. She's complaining about back pain and won't/can't walk. If she had walked for the doctors tonight, they would have sent her home with us, in fact.

We were hanging out at home today while my mom and dad took the girls to the movies. I was getting ready to take Dee Dee to White Castle when I find her on the floor in her room, sitting up. She's scooting across the floor. I rush over to her and offer to help her up. She strongly discouraged me from helping her up and said she just wanted to rest.

Alright - I can't help someone up who wants to stay on the floor. But instead of resting, she scooted into the hallway and then laid down for a few seconds, then sat up and scooted more, then laid down, etc. All the while she just told me she was fine - she just needed to rest.

She eventually scooted to the front foyer on the hard-wood floor and laid down on her back, eyes closed. It really looked like she was asleep. Her breathing and pulse were normal. But we couldn't wake her up for anything. Michele was yelling into her good ear and got no response.

When we tried to help her up, she strongly resisted. Her eyes were closed and she wasn't talking, but she definitely wanted to stay right where she was. It was the strangest thing. Whenever we tried to cover her up or hold her hand, she strongly waved or kicked us away.

Eventually, after consulting Ace and Diane and the on-call doctor, we called 911. They whisked her away. As they lifted her into the ambulance, she was yelling at the EMS guys to leave her there. All still with her eyes closed.

Once in the ER, Michele tells me they had a normal conversation. She was a little groggy from the sedative the EMS guys gave her (to get her to calm down enough for an I.V.) but otherwise seemed normal. They ran a bunch of tests over the next few hours, but they all came back negative.

She's complaining of back pain. At one point she said that she hurt her back falling out of her chair in her bedroom. But then later she said her back was fine until she had to lay so long in the hospital bed. So who knows. Nothing's broken, though.

The next step is to get her to walk. Michele and I are worried that once she's checked into the hospital, there might be a slow recovery. That's what happened in February when she went to the hospital for a bowel impaction and then got dehydrated and wound up having to spend weeks in a nursing home.

We'll keep the blog updated as we learn more.

"The Party's Over"

Michele here. I haven't posted in quite a while - since it stopped being fun to talk about how Dee Dee was doing. As Brian has been documenting, she has been growing progressively worse.

Brian did a great job of recapping last night's excitement, but I have a few details to add. Dee Dee was urgent to get out of the house last night for the family party to which I was not invited. After our little walk in the rain around 2 am (Dee Dee fully dressed but without a sweater or jacket, and me in my nightgown and bare feet), I coaxed Dee Dee into pajamas and persuaded her (I thought) that the party was postponed until tomorrow because of the rain outside. Ten minutes later, she was fully dressed again and headed for the door. She spent a full hour circling the house from one door to the next, trying each one and moving on. I might have considered going back to bed, but she consistently parked her walker and kept trying to leave without it. (This morning she explained to me that there were no walkers allowed at the party.) So I busied myself in the family room and kitchen - making lunches, folding laundry, cleaning out the fridge - so that I could keep an eye on her.

Eventually, she got tired and went to bed, around 4:30. I set myself up on the couch for the night, to be sure I heard her if she got up again. Which she did, at 5:30. She insisted that I come stand in her room and listen to everything she had to say. I cut her off after a couple minutes, telling her I had to sleep. She became extremely agitated by this, demanding that I listen to her. When I asked her if her story was related to the party, she gave me a puzzled look, and replied, "No, the party's over."

I left her room sooner than she wanted and returned to the couch. Over the next hour, she filled an entire notepad with notes about the special telegrams she needed to send to all of her family all over the world (relatives in Norway, Ireland, and Europe, which, to my knowledge, do not exist).

All morning she has been very anxious and demanding of my time. She keeps pulling me into a room where we can talk privately - away from Louisa's ears - and the things she is saying, I have to admit, make no sense. One sentence doesn't follow coherently from another, but each time I interrupt to ask a question, she accuses me of not believing her.

Needless to say, five days away is too long to wait to see the doctor. My mom is calling this morning to see if we can get in earlier.

The woman living in my house bears little to no resemblance to the grandma I remember. She is becoming increasingly self-consumed, demanding, and accusatory. It is so hard to believe when you know the incredibly sweet and selfless woman she has always been. I am praying that the doctor will have medications to deal with these new delusional symptoms. We need a big improvement, quickly, for her to be able to stay here with us.

As for me, my aunt is coming for a visit today, and I am planning a nap for the three hours that Louisa is at kindergarten.

Night Dreams

I'm not entirely sure what's going on, since it's 3:30 in the morning. Michele could tell you better than I could. I don't think either of us will be going back to sleep at this point.

Dee Dee has been up and about for a few hours now. That's not so surprising on its own - she often is just as awake at night as she is during the day. I suppose that makes sense when you take lots of naps and don't know whether it's day or night.

Tonight, though, Michele and I noticed a sound by the front door around 11:00 pm. Michele investigated, and to our disappointment it was Dee Dee trying to walk out the front door. At night. In the rain. On a strange street. Near a busy highway. Without her walker. However, I will give Dee Dee points for being fully dressed and wearing some good walking shoes.

Thankfully, we've got those child-proof doorknob thingies that prevent most people (even most adults, it seems!) from opening them. We've got them on all three doors on the main level. That was a precaution we took early on just in case.

Michele was then up a few times over the next few hours to help guide Dee Dee as she wandered around the house. For extra excitement, she's been trying to do most of this walking without her walker. Yikes! She fell down on our watch that very first night she spent with us and not at all since then. Dee Dee, don't ruin our record! :)

I'm not sure when Michele gave up on sleep, but I gave up around 3:00. I came out to the family room to see what Michele had been dealing with: Dee Dee walking from door to door, trying to walk out, then saying "Oh right, this one is locked." I asked her if I could help her, and she just said "Oh good morning, Brian! No, I'm just dreaming," and walked on to continue trying the doors. She seemed pretty cheerful to me.

As Michele tells me, around 2:00 this morning, in an effort to humor Dee Dee and calm her down, she offered to go outside with Dee Dee. They walked together in the rain. Dee Dee said she was going to a party with her brothers and sisters because one of her daughters just died, and Michele wasn't invited. When Dee Dee got to Highway 141 and started to cross it, Michele brought her back to our house.

We've got a doctor's appointment for Dee Dee this coming Wednesday. Five days away. I think it's reasonable to say that if we can't get her to sleep through the night, we'll have no choice but to bring her back to the nursing home.

Friends and Family

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!

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.

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.

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."

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.

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?

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.

Why We're Doing It

For those who don't know, here's a little insight into why we decided to invite Dee Dee to come live with us.

1) Her happiness. Gardenview was good. She got plenty of food. They were very nice to her. We really have no complaints. Dee Dee certainly never complained. But every time we dropped her off after taking her somewhere, she was obviously sad. When she was at our house, she enjoyed just hanging out in the kitchen with whomever, talking or not. As long as she's with family, she's content.

2) Her finances. I don't know particulars, but I got the sense that Gardenview was expensive, and Dee Dee would need to sell her house soon to pay for it. She still has expenses living with us: home health people who bathe her 3x a week, for example. But as I understand it, living with us is far cheaper than living at Gardenview.

3) Our Christian obligation to take care of our parents. After we had made the decision, we ran across this article from Christianity Today. It's called 'Honor Thy Father' for Grownups. The paragraph that really stood out for us was this one:

The generations handling care for dying parents are facing something their ancestors never did. They're part of smaller and less-stable extended families. They're less likely to live near their parents—sometimes they are thousands of miles away. And the amount of time spent caring for elderly family members can extend from a few tough years to many difficult decades. Even the strongest families will be stretched to the limit when attempting to fulfill the commandment to honor one's parents. So what do you do?

You take care of your parents.

Basically, just because it's hard doesn't mean we shouldn't do it.

4) Do you have relatives who are hard to get along with? Of course you do. Everyone's got some little quirk that annoys you after a while. And if you get to know someone well enough, eventually they'll get mad at you for some offense. But not Dee Dee. I've never seen her get mad. She is a remarkably kind woman. That made the whole decision a lot easier.

5) If I'm really honest about it, I would also add this one: We didn't think it would be that hard. Dee Dee had been living on her own and only went to Gardenview because she needed to recover from a stint in the hospital. She dressed herself, fed herself, etc. But as it turns out, she does all those things with only about a 75% proficiency. She needs more help than we thought. It's still manageable, but it's more work for us than we thought.

So here we are. So far, so good.

An example of a morning discussion

Michele: Good morning Dee Dee. [She is heading into her room and, I thought, towards her closet.] Are you planning to get dressed now?

Dee Dee: No, I'm going to get a drink. My throat is really dry. Did you know that I built this house? [referring to our house]

Michele: Really?

Dee Dee: Yes, I own this entire block and all the houses on it. It will all be yours someday, so start looking around for a house that you like.

Michele: Well, I like this house.

Dee Dee: Oh, this one? Well, okay. They will all be yours. You see, I worked all the time when I graduated from high school, and Harry had his severance pay from the army, so we had plenty of money to buy this block and build all these houses. It was a nice start for a young couple.

[A brief interlude of ten minutes, in which she gets dressed and I type the first half of this post. Then I re-enter her room.]

Dee Dee: So you didn't know I built this house, huh?

Michele: No, I didn't. I thought you built the house on Forestate.

Dee Dee: No, Forestate was when I was in high school. That was a looong time ago.

Michele: Well, I thought you got the house on Forestate when my mom was in high school.

Dee Dee: No, that was this house, that we're in now. Forestate was when I was in high school. My brother was in high school there too.

So, this is a somewhat surprising discussion in which I realize, at least for this moment, my grandma can't distinguish the house that Brian and I bought last year from the house that she built with Papa and lived in for 40 years.

The upside of this realization, I suppose, is that our house clearly feels like home to her, and at this point, that's what is most important.

Girls' Night Out (G.N.O.)

The other night, Sabrina wanted to go to the library for some new books. Brian and the other girls were staying home, so I gave Dee Dee the option of whether or not to come with us. She was eager to go. When we got there, Sabrina disappeared over to the kid section, and to pass the time, I directed Dee Dee over to the large print section.

We scanned the shelves for any titles that looked familiar to her, but to no avail. Eventually she picked up a Nora Robertson novel off the shelf, and I asked her if she was able to read it. She opened it up and started reading aloud.

A couple of details you should know:

1) Dee Dee speaks in one volume. This volume applies equally at home, at a noisy restaurant, in church, or in the library.

2) Dee Dee is capable of reading, but her eyesight has deteriorated to the point where even large print books are difficult for her.

So she read aloud (and when I say aloud I mean loud). She read about half of the words correctly, and the rest she substituted for words with similar letters. Or sometimes she would latch on to one word in a sentence, and create a new sentence apparently out of thin air using that word.

This could seem like a sad thing, but actually it was hilarious. Sabrina had rejoined us by this point, and she and I were practically splitting our sides laughing. But we weren't laughing at Dee Dee; she knew she was being funny. The sentences she was spouting made absolutely no sense, but she read and read, almost a page in all.

At one point, I heard a throat clear in the aisle behind us. I'm not sure if it was directed at us or not. Likely so, but Dee Dee was too endearing for me to mind much if we were a bit disruptive.

We finished the outing off with ice cream from Dairy Queen, where the mood remained festive. All in all, a great girls' night out.

Sleeping and eating...and sleeping...and eating...and sleeping again

Dee Dee got off to a good start this morning. She woke up around 9 am, got herself dressed without any prompting from me, and then proceeded to the kitchen and fixed herself frozen waffles for breakfast. This was a first - I didn't help her at all!

However, for the rest of the day she has done nothing but sleep. Ace came over today at 12:30 to take Dee Dee out to lunch and do a little shopping with her. Ace finally had to wake her up at 2 pm, at which point they went out to Steak-n-Shake. By shortly after 4:00 she was asleep in her room again, and I had to wake her up for dinner. And immediately after dinner, she disappeared once again to her bedroom, where she is currently sleeping soundly. She didn't even stay long enough to keep me company while I cleared the table, which as I've mentioned before, she usually enjoys.

When awake she seems to feel fine and have a healthy appetite, but she has not really interacted with us at all today outside of mealtimes. I am hoping that everything is okay.

(7:40 pm Dee Dee woke up to use the restroom. When she returned to her room, I went to check on her and ask her if she was okay. Clearly thinking it was morning, she told me that she went out but didn't see anyone else awake, so thought it was too early to get up. When I mentioned that she had been sleeping a lot and asked her if she was feeling okay, she explained that she was just tired because she had been up so late dying Easter eggs. When Audrey heard this reply, she sat processing for a few seconds, then said to me privately, "I think she's confused again.")

Michele's First Post

Today marks the two-week anniversary of Dee Dee moving in with us. It sure has been an interesting two weeks, filled with laughter at Dee Dee's ever present sense of humor, to dismay at the things I am realizing she cannot do, to joy at just being with her and seeing her happy.

She loves to be helpful and not to be a burden. All of you who know Dee Dee know how true this is. We are striving to find ways to let her be helpful in ways that are appropriate to her abilities. So far, I let her fold all my laundry. She LOVES to do this, and it occupies hours of her time. I alternately keep her company, and keep the laundry advancing, and it has been so fun just hanging out with her. When we chat over everyday things, that is when she seems the most like her old self that I remember growing up with.

When I am handwashing dishes, she likes to dry them for me. I bring them to where she is seated at the kitchen table. Today, I realized afterward, she opened up paper napkins and set them underneath each dried dish on the table, to keep the table dry just in case the dishes were not completely dry. When I took the dishes and put them away, she spent five minutes refolding the napkins and carefully aligning them with the rest of the napkins in the holder.

Another thing she tries to do in order to not cause me extra work is to carefully wipe off her plate at the end of a meal with a napkin, declaring it perfectly clean, and telling me it should go back in the cabinet; it doesn't even need to be washed. I thank her and take the plate from her, but she does not notice that it ends up in the sink rather than the cabinet as she had requested. Hopefully she never gets around to putting her dishes away herself! (Today she put her iced tea mug in the freezer by mistake and the bottom broke off of the mug when the tea froze - the girls were fascinated and delighted with this and Louisa spent twenty minutes licking the iced tea popsicle.)

Dee Dee likes to keep me company whenever I am in the kitchen, but apart from that, unless otherwise invited, she spends all of her time dozing in her recliner or on the family room sofa (or using the bathroom). I am trying to find ways to engage and include her and stimulate her throughout the day. Today I got out a deck of cards and retaught her Solitaire. I needed to remind her of the rules, but much of it came back to her and she seemed to really enjoy it. At the end of the game, reorganizing cards from descending stacks of alternating color into ascending stacks by suit was a skill that was just about perfectly suited to her current level. She concentrated carefully and managed to figure out (for the most part) what she should be doing. She won the game with only a little bit of inadvertent cheating and seemed quite pleased.

So it has been interesting learning how to live together with Dee Dee. In many ways things have not changed at all. She has adapted beautifully into our daily routine, or lack of one, and is just so happy to be here. She is so sweet and we are happy to be able to help make her happy.

I Heart Handicap Parking Tag

I tell you, this handicap parking tag is AWESOME! Today, we took Dee Dee out to White Castle* and then to Twin Oaks Park. Driving around with that tag makes me feel like a VIP. At the park, for example, there are parking spots up a hill and about 500 feet from the playground. But with the tag, you get to go in the drive that says "NO DRIVING! (except handicapped and emergency vehicles)". Sweet!

* Her suggestions are always, in this order: Pasta House, Steak 'n' Shake, and then White Castle. Pasta House, of course, is super expensive. Last time I went with her, she ordered toasted ravioli and then chicken Marsala. It came to about $25 just for her. She ate the TR's and then didn't touch the chicken. So I try to steer her towards the cheaper options when I can.



This picture reminded me of Star Wars, whenever you see R2-D2 walking along and he encounters a step.


We really wanted to take advantage of today's exceptional temperatures. When we left the house, it was 71° and overcast. You couldn't ask for more perfect Dee Dee weather than that. We parked at the park, walked to the playground, then Dee Dee said it was too cold, then we walked back. :) So much for the perfect weather. She had a sweater with her as well, but to no avail.



Louisa by the waterfall

Twin Oaks is a tiny town of about 300 people right next to Manchester. But because they have so many businesses within their city limits, they have tons of money. This park looks more like the Botanical Gardens than a typical municipal park.

Now we're back and Dee Dee pretty much went straight to her room to take a nap. A well deserved one, I might add.

Bachelor Living

Michele and the girls are out shopping, so I'm home alone with Dee Dee. That doesn't happen much. But it struck me that she doesn't let me help her like she lets Michele help her.

Dee Dee wanders into the kitchen. "Dee Dee, can I get you a snack?" "No, I'm full. Thanks!" "Can I get you some iced tea or a soda?" "No, I'm good."

Then she goes to the fridge, gets an iced tea, and adds it to the group of her three drinks already at the kitchen table.

I'm trying to figure out what it is she wants, but it's a little awkward. Maybe not unlike living with anyone you don't know all that well. I make a point to "happen to wander through" whatever room she's in every few minutes. Just now I found her stacking up children's books. Maybe she's cleaning up?

She seems like she's unable to do much, but of course if she were to start cleaning up, I suppose that would be good for her. As long as she doesn't feel like she needs to clean up. I have a hunch that once I told her Michele was out running errands, she got an age-old, uncontrollable urge to help out. For example, once she was in the kitchen, she picked up an empty laundry basket and put it in her walker as if she was going to go downstairs and empty the dryer!

I put in "Love in the Afternoon", the classic Audrey Hepburn / Gary Cooper movie for her, and I think she'll settle in and watch that. After all, doing all that laundry is bound to make her tired.

What's for dinner in the morning?

Things are settling into a rhythm now, 11 days after Dee Dee has moved in. Michele and I have gotten our crash course in what her grandma can and can't do, and Dee Dee has figured out where we keep the potato salad.

Michele and I have been talking about how to get Dee Dee to eat more healthily. She had lost some weight before she moved into Gardenview, but then she gained a bunch due to regular eating and (near constant) snacking. I think some of her clothes may be getting tight. So add "nutritionist" to the list of Michele's jobs.

This is another area where it's tempting to treat Dee Dee like one of our little girls. But you can't really tell her not to eat something, or she's had enough. If I get to be 80 years old, dadgummit, you can't tell me not to eat 63 chicken nuggets; I'm a grown man!

At Michele's suggestion, I had bought some deli potato salad for Dee Dee. None of us care for the stuff. But once Dee Dee figured out it was in the refrigerator, it was devoured in short order. That day, she had breakfast, then second breakfast potato salad, then elevensies of potato salad, then lunch.

It's become apparent that:

1. Dee Dee often doesn't know what time of day it is, so she eats breakfast for dinner and vice versa.
2. She doesn't remember when or what she last ate.
3. She eats either out of lumberjackian hunger or boredom - I haven't yet decided.
4. She'll finish whatever you put in front of her.
   
5. There is no cookie she doesn't love.
   

Typically, we get the food for her that she requests. But now that she's figured out where we keep certain items in the fridge, she's helping herself more. That's great on one level, but it makes it harder to help her eat right.

For now, our strategy is to keep more fruit on hand that she likes, and to not buy the cheese curls she ate all the time at Gardenview. But heaven help us once she figures out how to get food out of the pantry...

Who is Dee Dee

Dee Dee is the nickname of Michele's grandmother, given to her by one of her grandkids who was too young to say "Grandma". Or that's the story I've heard. Born in 1920, she was married to Harry for over 54 years. She has three children, nine grandchildren, and eight great-grandchildren and lives in St. Louis, Missouri.

Recently, she got to the point where she could no longer live by herself, and the family was able to check her in to a dementia-care facility (Gardenview, at the corner of Big Bend and Dougherty Ferry). After much deliberation, Michele (her granddaughter) and I (Brian) decided to have her move in with us. This is the blog of taking care of an elderly grandmother while trying to raise kids and live "normal" lives.

I suppose the target audience would be people interested in our private lives, those who know Dee Dee, and anyone who is taking care or thinking of taking care of an elderly relative. Michele and I will both be making posts, hopefully pretty often!