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Dementia: A Day in the Life

I inadvertently took a week off from my musings. I think it is because I have been so overwhelmed with ideas I want to share that I did not know where to begin. But not writing for a week has felt like I forgot to brush my teeth. So I am back! And now the week off has turned into two because of unexpected medical issues (I will share in the next blog).

I think one of the most important things I am learning each day is the art of empathy. When I try to define empathy myself, it is difficult, as it just seems like a concept that comes naturally, which led me to look it up in Merriam-Webster. Here is what I found:

Empathy - the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner

In a lot fewer words empathy is the ability to feel what someone else is feeling without actually experiencing it yourself.

Why is this so important when I am working with Lisa and Joseph? For those of you who have spent time with loved ones in the throes of dementia or Alzheimer’s, I imagine you often find yourself frustrated at their lapses in memory, repeating themselves over and over and not being able to think logically. The more frustrated we get, the more we show it to our loved ones, probably increasing their agitation. Moreover, we then get upset with ourselves for reacting so harshly to someone who is ill. Thus, the cycle repeats. When I find myself getting frustrated and feeling like I am not being heard, it helps to empathize with Lisa and Joseph. I try to put myself in their shoes and vicariously experience all the emotions I imagine they go through in a day. The rest of my blog this week will focus on what (I believe) it is like to live with dementia or Alzheimer’s. In other words….a day in Lisa and Joseph’s life!

Let’s start with a day in the life of a recently retired, healthy 70-75 year-old; much like the life Lisa and Joseph were living as recently as three years ago. You wake up and get your 3-mile walk in before 6:00 AM. You sit down at the kitchen table and read the newspaper while you drink your coffee and eat your breakfast. You take your shower and put on clean clothes; ready for whatever the day has to offer. You go for a ride every day, sometimes down the coast, sometimes up to the city. You have no limitations on where you can drive. You do your grocery shopping on Mondays and your laundry on Saturdays. If you need something, you go to the store and buy it. You go to see movies here and there (and you walk to the theater because it is so close). You make dinner almost every night and your kids and grandkids come over a couple times a week to visit and eat. Sometimes you take them out to dinner. You look forward to special occasions so you can see the extended family and don’t want to go home until the party is completely over. You go to live sporting events (college and professional) whenever you can. You have season tickets to Stanford volleyball and football. When 4:30 PM rolls around, you enjoy your 1-2 beers or glasses of wine before making and eating dinner. After dinner, you watch the end of your favorite games on TV. When a winner has been decided, you go to bed, get a good night’s sleep and wait for the next day’s adventures. If this doesn’t sound like you, imagine your own daily life after you retire.

Now, you have dementia. You wake up between 8:00 and 9:00 AM. You notice the bed is slightly damp, but by the time you realize that the sheets should be changed, you forget all about it. You are confused as to why it is so late and you are still in bed. It takes you about 30 minutes to get out of bed and take a shower. You don’t want to put clean clothes on because you have become attached to the clothes you were wearing yesterday. And the day before. And, oh wouldn’t it be nice if that stupid girl who spends all day every day at your house would stop telling you to change your clothes! By the time you get to the kitchen to eat breakfast you are so short of breath you are doubled over and hanging on to the counter for support. That same stupid girl who made you change your clothes is now imploring you to use that god-awful “breathing machine.” When you tell her you already did it this morning, she yells at you and tells you she knows that you didn’t. She also tells you that you just woke up; but you know you were up at 6:00 AM and have already walked 3 miles. You go to the refrigerator to get milk for your cereal. When you get to the refrigerator, you have no idea what you are looking for. But it’s a good thing you are up because you noticed the counter is sticky so you wipe it off. Then your teeth feel grimy so you brush your teeth. When you get down to the bathroom to brush your teeth, you realize you are hungry and return to the kitchen to eat your cereal. And damn it! That stupid girl is still in the kitchen telling you what to do.

After breakfast you settle into your chair in the living room and realize you need to go to the bathroom. But you have forgotten that you are a lot slower now and wet your pants on the way. And that damn girl has now followed you into the bathroom! Wasn’t it enough that she watched you shower? She tells you she is following you around to prevent you from falling. But you don’t remember ever falling. You decide you can escape the girl by getting your husband to take you for a ride. The only thing is the same girl tells you that he cannot drive so she would be glad to take you for a ride! When you explain to her that you don’t want her around because you can take care of yourself and your husband, she insists that you are paying her to be here so she will do her job and chauffer you around. But, now you realize that the pots and pans are all askew in the cupboard so you better fix them right now. Oh – but here is that blasted girl again telling you to get off the floor and get in the car because your husband is waiting!

By the time you get back from your drive you are sure that it is happy hour. You go to the refrigerator to pour your wine and there she is again. This time she is telling you that you can’t start drinking wine because it is only 1:30. What else are you going to do? And, oh by the way, you have been drinking wine for 60 years so you will drink however much you want whenever you want! Then you realize that you haven’t taken anything out for dinner, but that’s ok you can always order a pizza.

Oh, how lovely, that girl is here and has offered to make you dinner and agreed to eat with you. She is a true treasure! You should offer her a glass of wine.

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