The Prime Time in Dementialand (and Why You Don’t Want to Listen to Me Lecture at 2pm)

When I was a teenager, my mom bought me a nightshirt that said “Perky Morning People Should be Shot” across the front. Looking back, that statement was a bit harsh, but I often threw a fit (aimed at my mother) about having to get up early in the morning. And I wore that nightshirt until I was about 25…until it was virtually transparent.

Despite my allegiance to that nightshirt, I can’t say I’m not a morning person. I don’t enjoy having to get up at 5 am, but I’m most productive in the mid-morning (from 8 to 11ish). If I have important work to do, I try to structure my day to get it done in that time frame. When possible, this is when I teach my college courses. I also attempt to schedule important meetings around this time. (And, in case you were wondering, my blog posts are on scheduled released. I’ve talked to a few people recently who were impressed that I was up at the crack of dawn doing my blog. Nope. I’ve usually fast asleep when my blog posts are released.)

I’m also can’t say I’m not a night person. I’m definitely not an owl who stays up ridiculously late, but in many ways I feel my best at night. I do my best writing in the later evening (from 9 to 11ish). I feel most creative in this time frame. I’m usually happiest at night as well. If you want something from me and want to make sure I’m in a good mood when you ask, try 9 pm.

What I am not is an afternoon person. For as long as I can remember, I’ve disliked afternoons. My complaints about the evils of afternoons are many…For instance, I struggle to concentrate and lack motivation. I don’t have much patience in the afternoon. I am much more likely to be annoyed by something inconsequential in the afternoon than at any other time. I also have more anxiety in the afternoon than in the morning or evening–although I’ve never figured out why.

I’ve tried various strategies to change this, including going to bed earlier and changing what and when I eat. To be honest, I’ve tried consuming large and potentially hazardous amounts of caffeine. (In fact, I’ve tried everything short of illegal drugs to increase my energy in the afternoon.) Those things do make a small difference, but I’ve come to the conclusion that I’m just never going to be at my best in the afternoon. Trust me…you don’t want to have to listen to me lecture at 2 pm. I’ll get through it if I have to, but I’m not as “on” as I am at 9 am.

A couple of years ago I was making plans to work with a colleague on a project that involved a lot of tedious data and a few statistical methods that we had both learned in grad school but rarely used. I asked what time we should get together.

“Let’s do late morning,” she said, “That’s my prime time.” I wasn’t sure what she meant by prime time, so I asked. She explained to me that her prime time was the time of day when she felt sharpest, and she tried to schedule her most taxing tasks in her prime time. I’m not sure why, but it had never occurred to me until this moment that I could (and should) try to schedule my day around my “best” times when I could. (I’m fortunate to have a job with some flexibility that allows me to do this, and I know not everyone is as lucky.)

If you think about your day, there are probably a couple of “pockets” of time when you feel best. Maybe you’re happiest and most productive in the early morning. Maybe you don’t really wake up until noon. Perhaps you’re the type of person who thrives late at night after most of the world has gone to bed.

A few websites suggest that you can start a spreadsheet to track your energy and mood throughout the day in order to figure out when you’re at your best. However, I would argue that if you have to collect data to figure this out you probably don’t need to worry about it much. Without a chart, I can tell you that I’m pretty lackluster in the afternoon.

No one is at their best all the time.

That includes people with dementia. Individuals who have dementia may see the patterns they have experienced their whole lives exemplified. Or the patterns may change. Either way, the patterns become more important. And structuring one’s day around these patterns, and a person’s “prime time” becomes more key to quality of life.

Recently I talked to a woman, Heidi, whose husband has Alzheimer’s. She told me that they took a trip to Hawaii, which had always been a special place for them as a couple. I asked how it had gone.

“Not good,” she said. “Not good at all.”

Heidi told me that her first mistake was booking a flight that left at 6 am. Her husband had never been a morning person, and he struggled even more with mornings after his diagnosis. Getting out of bed before the sun came up seemed to increase his confusion. He kept forgetting where they were going and didn’t believe Heidi when she repeatedly told him about the trip. He even asked a flight attendant where the plane was going and doubted her answer. The combination of traveling and being up early made for an awful experience–for them both.

Heidi’s husband also struggled with the tours and planned events on their vacation. He was used to “downtime” at certain points during the day. One day they were on a bus tour (at a time when he would typically be sitting on the couch watching TV) when he become confused and panicked. They had to get off the bus and call a cab to get back to the hotel.

Heidi realized that maybe the trip itself had just been too much for him, but she also realized that she could have been more sensitive to his prime time when she planned. She assumed he’d be able to adjust. He would have been able to adjust a few years back, but she had to admit that his prime time had become important to the success of their activities.

And what about those with dementia who must adjust to life at a nursing home?

You won’t hear me knocking nursing homes as a whole. I know that there are great nursing homes, and there are not-so-great nursing homes–to put it nicely. Some of the kindest people I’ve ever met work in nursing homes. But there are a lot of downfalls to institutional living…

Although we are trending (too slowly) toward more individualized care, life at most nursing homes is quite scheduled. Meals are offered at certain times. You are expected to get up and go to bed at certain times. Activities are on the calendar. These events are often not dictated by an individual’s preferences but by the convenience of the facility. And this is not a criticism of facilities…they are usually understaffed and attempt to plan in the most efficient way for all. Unfortunately, it’s sometimes about the greater good rather than the well-being of one individual.

However, attempting to adjust to this schedule can be hard for people with dementia. In fact, it would be difficult for anyone. I know plenty of people of all ages who enjoy sleeping in…but how does that work with the schedule at a nursing home? And what about night owls? How can you stay up and watch TV when your roommate goes to bed at 7 pm? As a professed afternoon-hater, I worry that all the best activities might happen in the afternoon when I would prefer them in the morning. Individuals with dementia may struggle to make these adjustments–even more than the rest of us.

To function in the “normal” world, we are forced to play by the rules. I sometimes have important meetings at 2 pm. When I have to do reports at work, I may only have an afternoon time slot to get them done. That’s the way life is, and I adjust. After all, I’d like to keep my job.

However, adjustments may be more difficult for those with dementia. Someone who struggles with having a conversation may do well when they have visitors during their prime time but find conversation more taxing at a different time of day. If Grandma wants to go grocery shopping but sometimes finds it overwhelming, it may be useful to make sure she goes during her prime time. And if Mom typically takes a nap in the afternoon, it might not be best to plan the family Christmas celebration at 3 pm.

It sounds simple, and it is–really. If you are a professional or family caregiver, help people with dementia create schedules that work with (not against) their prime time. Be conscious of times when people may not be at their best. Consider the individual’s priorities and assist them in managing their time in a way that uses their best moments to maximize those priorities.

And do the same for yourself.

Praying for the End in Dementialand

I was 23 when my grandpa passed away. He had a lot of chronic health conditions, including diabetes, and he’d recently had a leg amputated. The last time I saw him in person, he kept calling the guy I was dating at the time “Steve” (although his name was not Steve) and he was very grateful to “Steve” for helping him figure out the remote control to his crappy TV at the hospital. The last time I talked to him on the phone, he was telling me about a church picnic that he had attended. He mentioned he brought brownies in a basket. There had been no church picnic.

I remember sitting on the bed in my small grad school apartment with my black cat, Teela, as my mom called me to tell he that he died. It seems surreal that I still have Teela (although now she has three doggie brothers and a feline sister–oh, and a dad!) and am looking at her in her kitty condo as I type this today. It seems so long ago, but I guess it wasn’t that long ago because I still have Teela–although she is a bit heavier and moves slower…I could say the same about myself though.

I asked my mom if she thought I should call my grandma to express my condolences. To be honest, I wanted her to tell me not to bother Grandma. I was a little nervous to make the call. I didn’t know what to say. When Grandma answered the phone, she launched into a story about the Red Roof Inn she was staying at near my grandpa’s hospital. She had spent a lot of nights there, and they were kind enough to not charge her for the night my grandpa died. She was absolutely overwhelmed by their kindness. I think of this every time I see a Red Roof Inn to this day.

I didn’t really know what to say when she paused after praising the employees of the Red Roof Inn, so I blurted out, “I’m sorry about Grandpa.”

“Oh, honey,” she said. “I was praying for the Lord to take him. I knew he wasn’t gonna be strong enough to come home after losing that leg. It was the best thing.”

The best thing?

At that point in time, I had this idea that we all should fight for our lives to the bitter end. I saw death as failure, not as a natural part of life. And I wasn’t sure what I thought of someone hoping and praying for a loved one to pass away.

In a way, I was glad my grandma accepted my grandpa’s death on some level. On the other hand, I couldn’t wrap my mind around the notion that my grandma prayed for my grandpa to die. I can assure you that the experiences I have had between then and now have absolutely allowed me to wrap my mind around this.

I was speaking with a woman recently whose husband has a type of dementia that can progress very quickly. I pointed out that this rare type of dementia has a shorter life expectancy than Alzheimer’s and most other types of dementia. I had only known this woman for about…3 minutes…so I worried that I’d said too much and was perhaps being a bit pessimistic and blunt when I had no idea where she was at with this.

“Oh, thank God,” she said. “The quicker this progresses, the better.” Then she looked horrified, like she couldn’t believe she said this to me.

There are many people who live well with dementia. Unfortunately, her husband is currently not one of them. And she wants this over as soon as possible, for him and for her.

Then she asked, “Am I a bad person for wishing he dies sooner rather than later?”

I wasn’t quite sure how to respond. It seemed like a question for a ethicist, pastor, or philosopher rather than for me. All I could do was reassure her that her feelings were normal considering the circumstances. She was absolutely right that he seems to have little quality of life. He spends most of his day in their bed–but with his eyes open–and he gets upset if she tries to turn on the lights or the TV. He recently told their kids that he was sorry he ever had them, and he had even become aggressive toward one of his grandchildren. She also pointed out that he’d be really upset if he realized that all the money he had worked so hard to save would likely be eaten up by a nursing home.

So, are you a bad person for hoping that your loved one with late-stage dementia passes away rather than lingers on? Absolutely not. This is normal. It’s also normal that you might wish for them to pass away in one moment but in the next minute be willing to do anything to keep them on this earth.

And when they do die, it is normal to feel guilty that you wished that they would pass away and then want them back. It is normal to feel a variety of emotions when a loved one with dementia dies, but one of those emotions may be relief. And–no–none of this makes you a bad person. It makes you human.

If someone says to me that they want their loved one to “go quickly” or “leave soon” or any other euphemism we can use to avoid the actual term “death,” it may be partially from a selfish place–because being a care partner is demanding.

However, I find that more frequently it has nothing to do with the care partner and everything to do with the person with dementia. While some people with dementia live a life worth living right up until the moment they depart, we cannot say that everyone with dementia has a positive quality of life from dementia to death. It’s just not true. Alzheimer’s, Huntington’s, Lewy-Body Dementia, frontotemporal dementia…these can be cruel diseases.

When we look at our loved ones and see depression, anxiety, and pain (physical and emotional), we may hope for death. Don’t beat yourself up if you pray every night for God to peacefully take your parent, spouse, or sibling. No judgment here. And if you attend a dementia caregiving support group and mention that you are ready for your loved one to pass away, you will see a chorus of nods and knowing looks.

I fully anticipate that this post will offend someone. And I am offended as well. I am offended that dementia causes such suffering that one would at some point hope for death for a family member or friend–and that as a society we haven’t been empathetic or supportive enough to those in the midst of this journey.

Stuffed Cats and Real Cats in Dementialand

I once got in a tense argument about whether a stuffed cat was a real cat. For the record, it was a stuffed cat but really it was a real cat.

About ten years ago, I was visiting with a hospice patient on a weekly basis. Linda-not her real name-had vascular dementia (as well as multiple other health conditions) and lived at an assisted living. She was reserved when I first started stopping by, and I had trouble connecting with her.

One day, I notice a stuffed cat sitting on her bed. She sees me looking at it and asks if I like cats. I tell her that I do. She smiles.

“Well,” she says. “You’ll love my Tiger. He is quite a cat.”

I’m not sure if she thinks Tiger was a real cat or not, so I walk over to pet him.

“Be careful,” she warns. “Tiger still has his claws.”

Yep. Linda thinks Tiger is a real cat. I shift gears and start interacting with Tiger as if he is a real cat. In other words, I step into her reality. Linda perks up some, and suddenly we have a connection. I figure out that Tiger is the key to engaging her.

Every time I stop by, I ask about Tiger right after I come in. He’s usually on her bed. Sometimes I pick him up and put him on the windowsill so he can watch the birds. A few times we find a nice sun puddle on the floor for him. One day she mentions that Tiger looks chunkier and accuses me of sneaking him tuna. I confess, and she smiles. I even buy Tiger a toy. Yes, I spend $5 on a toy for a stuffed cat. And Linda is beside herself with excitement, and I’ve forgotten that Tiger isn’t a real, living, breathing feline.

I come by one summer day while her son is visiting. When I ask Linda about Tiger, he rolls his eyes.

He tells me, “I’ve told her time and time again that Tiger has been dead for five years. He got hit by a car on the highway.” Linda looks at him, and then at me. I’m really not sure what to say.

“Actually, Tiger’s okay. He’s right here,” I say tentatively. The son takes a long look at me as I pet Tiger. I’m pretty sure he’s wondering if I’m the biggest idiot he’s ever met.

“You are petting a stuffed cat,” he says. “That’s not a live cat. It’s stuffed.” Let’s just say Linda’s son and I are not on the same page here, and I’m not about to let him break his mother’s heart.

“No, Tiger is a real. Alive and well,” I say. This is awkward. The son is not going to relent, and neither am I. I have now decided I am not going to admit to the son that the cat is stuffed. And once I pick a battle, I’m all in. He glares at me.

“Do you really not know this cat is stuffed? We bought him at Walmart,” he responds. “This is a stuffed cat.” At this point I should take this guy out in the hallway and explain why I am set on insisting Tiger is a real cat, but I don’t think of that at the time.

“Well, Linda knows that Tiger is real, so Tiger is real,” I say. At this point, I have Tiger cradled in my arms. I’m squeezing him tighter and tighter as I get more and more frustrated. If Tiger were alive, I might have suffocated him.

The son stares me down. It’s intense. Linda looks at me, and then at her son. He sighs and walks into the other room. I consider it a victory.

Mistaken Identities in Dementialand

I spoke at the Illinois and Iowa Quad City Family Conference on Saturday. We had a great turnout, and even had some press coverage:

http://qctimes.com/news/local/caregiver-conference-attracts-its-biggest-crowd-ever/article_ee4294a2-6fb4-5e3e-ba81-64b7666b8288.html

(Please note that I hate my press photo and have no idea why it appears that my hair is longer on one side than the other.)

After I spoke, a small line of people formed by the stage to talk to me. I jumped off the stage because I didn’t want to “talk down” to people. This jump turned out to be a poor decision. I had on heels and should’ve used the steps. I practically took down a lovely woman in her 50s with me when I landed. Fortunately, she seemed willing to break my fall. After I was pretty sure I would not need medical attention, she told me a story.

Her mom has Alzheimer’s. Her father had been an abusive alcoholic and left her mother decades before, and her mom had remarried. On most days, her mom didn’t remember that her first husband had walked out, and she certainly didn’t remember getting remarried. She called her second husband by her first husband’s name. Ugh.

A side note about being mistaken for someone else…If we like that person, we generally tolerate it much better. For instance, I went to high school with a girl named Kelly Oliver. I didn’t think we looked all that much alike, but I got called Kelly once in a while. I will add that Kelly was cute, athletic, and the sweetest person you’ll ever meet. I corrected people when they called me by her name, but I also didn’t mind being mistaken for her. I was flattered.

This guy was in a different boat. Not only was his wife unable to correctly identify him, she was mistaking him for someone who was a real jerk. I’m sure he wasn’t a fan of his wife’s first husband, and now (in her reality) that’s who he was. She would even make occasional comments about how needed to stop drinking, go back to Alcoholics Anonymous, and stop cheating on her.

I asked the woman how her mom’s current husband responded when he was mistaken for her first husband. She told me that he had stopped correcting her. He had even apologized for “his” past drinking problems and “his” affairs. Then he promised that this part of life was behind him and he would always be there for her now. It sounded like he made his promise quite a bit, and it seemed to comfort his wife. In fact, she would usually smile and say something about a “new beginning” for them. For the time being, his strategy seemed to be working. I was impressed. Really impressed.

I’m always telling families to stop arguing about who you are. Just roll with it. However, it’s a lot easier to do this when you’re mistaken for someone who you like and respect. When you’re not flattered by who grandma thinks you are, you tend to get a little bit more argumentative.

I once was visiting a memory care community when I heard a young woman tell her grandma in an annoyed tone, “Grandma, I’m Hannah. Liz is my sister. You can tell us apart because Liz is A LOT heavier than I am. And her nose is bigger.”

I think I might have laughed out loud. If grandma can’t tell her granddaughters apart, she is probably not going to remember the next time she sees them that Liz is the heavier of the two and needs a nose job. And, on the off-chance she does remember, she may tell Liz that she recognized her because she’s fat and has a big nose. Not exactly a win-win situation.

The take-home message here is that we can have a connection with someone even if they don’t know who we are or thinks we are someone else. Often times, we destroy that opportunity for connection when we spend time arguing about who we are.

I know it’s hard. And you get to grieve, but you don’t get to do it in front of them. If mom thinks you’re her sister instead of her daughter, continue on and have a positive visit. Talk about the weather. Smile and laugh. Then, after you leave, cry in the car. Or call a friend to vent.

It’s brutal to accept that someone you love no longer recognizes you, but accepting that may be the key to enjoying time with them. Sometimes we have to let go of what was in order to enjoy what is.