Friday, April 27, 2012

Dementia Blues

I've been in a "funk" the past week or so. I knew this was going to be an emotional roller coaster. I was feeling really strong for a while; but for the past week I have been feeling really down. Nothing has really changed over the course of the week, but I've been noticing a change in my dad. He is a self-employed contractor. Despite our horrible economy, he's been doing fairly well for himself. The past few weeks, however, he hasn't had any work. He has been home everyday with my mom. Normally it wouldn't be such a terrible thing; and it's not that being with her is terrible. But it is difficult, and it can be depressing. Between the stress of not working and the stress of my mom (and finally slowing down enough to metally process her condition), my dad has seemed very depressed.

My dad is my hero; he is the rock of our family. He is a go-getter and an optimist. He is not the kind of guy to show too many emotions; his attitude, when life gets hard, is a "suck it up" and "deal with it" kind of attitude. He never feels sorry for himself and he doesn't let a whole lot get to him. He is also one of the most giving people I know. You've heard of those kinds of people who would "give you the shirt off their back" if you needed it. My dad would give you the shirt off his back and then go and buy you a dozen more. I have met very few people who are as generous and give so freely of their time and talents as my dad. When my grandfather (my mom's stepdad) was dying of Lou Gehrig's disease and needed round the clock care, my dad became his primary caregiver. He made time to work and still be there every single day to care for my grandpa. As tiring and as daunting a task that was, he never complained. Not once. 

It's been difficult to see this change in my dad over the last few weeks. I know it's not mom's health alone, but it is a big contributing factor. I can see that he is lonely. My mom is there physically, but mentally she's pretty far out there. She makes the same conversations day after day; talking about what a good driver she is, about this pain and that ache, about this medicine and that medicine, about her doctors, her upcoming visits,'s exhausting. Conversations with her consist of her sharing what is on her mind, the other person responding, and mom acting as if she never heard a word. Sometimes she will give blank looks, other times she will jump back into talking about the next thing she is thinking about. Occassionally, she will hear tidbits of what we say and that is after saying it repeatedly before it registers. Even then, she most often interprets things differently in her mind and hears something different than what we actually said.

For example, my twin brother and his family are coming to visit next month over Memorial Weekend. Camping for Memorial Weekend has become somewhat of a tradition in our family. We usually go up to the mountains with our extended family to the same campground every year; we have been doing this since I was a kid. This year is a bit more complicated; dad needs new tires on their camping trailer and due to a lack of work, new tires are not in the budget right now. We have been talking about different options including going camping in our tents, without the trailer. However, my mom refuses to go without the trailer. She needs a shower, she needs to do her hair and her makeup, she's not comfortable tent camping...there is no flexibility or reasoning on the issue.

I had a great idea. We have a campground only a couple of miles away from our house. It's not our usual, quiet place in the mountains, but it is close to home and has a lot of fun activities for the kids. It's close enough that my dad could probably drive the trailer down, and if not, it's close enough to home that mom can come during the day and return to her comfort at home in the evening. My dad seemed happy with this solution and talked to my mom about it. However, she apparently did not hear what he said. As I was driving her around yesterday, the topic came up. Immediately, her defense came up and she got upset with me.

"Your dad wants to go to the mountains too. And my brother's going too, he invited us too. Your dad said we were going. He really wants to go too."

Me: "Mom, dad can't afford the tires for the trailer right now and the trailer can't make it that far on those tires. The only way we can go camping is to stay close to home."

Mom: "No, I'm not going camping in those other things" (tents) "I'm not comfortable in those. I want the trailer. I need a shower and to decorate my hair and other things too."

I tried to repeat my point, "Dad can't buy new tires right now, he isn't working."

To which she replied, "I already told him I'd give him the money from my savings or we could use the credit card too."

My once-frugal mother is losing the concept of money. I tried explaining to her that they may need her savings for other things until dad gets some jobs lined up, and that to put something on a credit card means you have to have the money to pay it off. I don't know if she doesn't hear when I am talking or if her mind just can't process the words I am saying (though I'm fairly certain it's the latter).

"No we can just put it on a credit card. Your dad really wants to go. And if you go that other place then I'm not going!"

This is the condensed version of the conversation. Conversations like these can go on and on as we try to reiterate our point, hoping that she will hear what we are saying and eventually make sense of it. I am learning that it is pointless to argue with her. It makes as much sense as arguing with a two-year old. They are stubborn, they want only what they want and do not hear (or cannot yet process) most of what you say. They will pout and frown and make you miserable when they don't get what they want. This is how my mom has become. I am having to learn to let things go and not spend too much energy arguing and trying to reason with her. A friend (who was a caretaker to her Alzheimer's mother) told me that there comes a point when you give up arguing altogether; you just smile and tell them you love them. I understand her point completely.

It is emotionally exhausting. I think I've been doing considerably well over the past couple of months. For the most part, I have been able to keep my cool with her and I've been able to talk and interact calmly with her. I was very patient with her when trying to book her a flight out to see her brother, which was a huge ordeal. She was stubborn about which airport she flew out of (the more affordable airport is further away), stubborn about the times (they either left too early, came in too late, or took too long to get there)...she was confused on what luggage is and what layovers are (and why she has to fly to Colorado first to get to Montana) and threw little tantrums at the mere suggestion of a flight that wasn't ideal for her. It was extremely tiring. Yet somehow I was able to keep it together; my husband even commended me on my patience with her.

This week, I think I am feeling a bit depleted; my patience is running thin. Yesterday, I was all too anxious to drop her off at home after our venture out. It was all I could do to keep my composure and not lose it. I hate that I feel like this. There comes a point where it becomes too much to handle; as patient and understanding as we try to be, it becomes difficult in times when that feeling of depression is beginning to overwhelm your sense of reasoning. I know that as bad as I am feeling, my dad is feeling worse. It's no wonder why he has been feeling depressed lately. I am beginning to feel it too. I feel helpless. I wish there was something that I could do for my mom to help her condition to improve; I wish there was something I could do for my dad to lift his spirit and help him to feel happy again. I lay awake at night, worrying about both of them and the road that lies ahead. My heart is heavy and I feel a dark cloud looming overhead. I know that I need to do something.

I have heard that there are support groups for people dealing with dementia. I've even researched it a little bit. There is nothing specifically for Semantic Dementia, but there are support groups for Alzheimers. I'm hesitant to go. It won't really fix anything, it's not going to change my mom's condition. But I know that I need to do something to strengthen myself. My dad has been a rock for all of us over the years. Now it's my turn to be his.

Thursday, April 19, 2012

Easter Weekend With Mom

There is no cure for dementia. There are some medications that are supposed to "slow down" the process, but nothing can stop the inevitable. While researching the topic of how to slow down the process, I read that exposing the "ill" person to life experiences will help to slow the progression of the disease. That means getting them out and doing, vacations and trips, and so on. Pretty simple, right? Much easier said than done.

A couple of weeks ago, we celebrated Easter in San Jose with my Aunt. Going to San Jose for Easter was a tradition for us while I was growing up, and we wanted to have our kids experience the magic of Easter as we once knew it. We knew that it wouldn't be as smooth sailing this time around with mom; in fact, there are many complications in traveling with her. A classic symptom of Semantic Dementia is to be set in a day-to-day routine and mom fits the mold perfectly of this characteristic. It's hard for her to deviate from her normal routine, which makes getting out of the house a little tricky sometimes. 

Mom's routine revolves around two things: sleep and medicine. She stays in bed until 8:00 in the morning; it's extremely difficult to get her out of bed any earlier (although she seems to be doing okay getting up earlier on Sundays for church). At 8:30 am she takes her medicine, followed by drinking her Slim Fast for breakfast. She then showers and gets ready for the day, hair and make-up must be completely done whether she intends to leave the house that day or not. At 10:00 am there is another medicine she takes for her headaches. At 2:30 she has another round of medicine to take; all of these medicines are for her aches and pains that she has throughout the day: headaches from her "degenrative disc and narrowing spine", her fibromyalsia medicine...I could write an entire post just about her medication. We'll save that for another day. Back to her routine: at 6:00 pm she can take some more headache medicine if her headaches have returned. At 8:30 pm she takes her last dose of medicine which includes a sleep aid that she is directed to take 1/2 hour before bedtime. At exactly 9:00 pm, exactly 1/2 hour after her medication, she is in bed. She has a hard time falling asleep. Sometimes she'll lay awake for hours or wake up throughout the night. But she must be in bed by 9:00 because "it's very important" to get her sleep.

She fills in the times around her medicine doing word puzzles, playing solitaire on the computer, going to doctor appointments, and occassionally washing some dishes in the sink or doing a load of laundry. Sometimes she will sit on the couch and turn on some music and "exercise" by tapping her feet as she sits. She normally takes a nap midday, as she gets tired often. She cannot take her medication a minute late or a minute early. She will generally stroll in to the kitchen a few minutes before medicine time, get her medicine ready, and hold it in her hand until the clock is exactly on the right time. If we are out and about, she will look at whatever clock is nearby and then pull out her cell phone and compare times. Her cell phone is the most accurate, so that is the time she will go by.

When I call mom to schedule errands or just a day out somewhere, her first response is always something like,

"The only thing is I have to be back by 2:30 because I have to take my medication."

Followed by my response,

"You can always bring your medication with you mom."

The first time she finally ventured out with her medicine (rather than waiting next to the clock at home), was when I took her out on a lunch date. She chose her favorite fast food Mexican place, Miguel's Jr, despite my efforts to get her to venture out to a nicer, sit-down restaurant. Before we left the house, she told me that she had to take her headache medicine at 12:30. The first thing she did when we sat down at the table (around 12:10 pm) was get her bottle of medicine and set it on the table in front of her. At 12:28, with her lunch finished, she opened the bottle and said,

"It's 12:28, I think it will be okay if I take my medicine now."

I know it sounds bad, but I decided to have a little fun with her. Conversations can become very depressing with mom; she can't talk about anything except her childhood memories, her health and medication, her not being able to gets very dull and lonely. Sometimes we feel like we just need to make light of the situation and "spice it up" a bit. So I played along with her.

"Are you sure you can take it two minutes early, mom? Are you sure it'll be okay?" I gave her a little smirk to show her that I was teasing with her. But mom's sense of humor has long been gone. She doesn't understand when a person is joking around with her. She very seriously answered me,

"No, it'll be okay. It's only two minutes. It'll be fine."

Still, she held the medicine in her hand, as if she wasn't really certain if taking it two minutes early would be acceptable or not. She dug into her purse and found a piece of dental floss, which I had given her at my house the night before and she insisted was okay to clean and keep for later use, and flossed her teeth while she waited for the clock to change. She cleaned off the floss yet again, placed it back in her purse and looked at her cell phone once more to verify the time. 12:29.

"It's 12:29 now, I think I can take it now." She held it for about 20 seconds more before finally putting it in her mouth and flushing it down with a drink of water.

Her inflexibility in her routines and medication does make it difficult to go places; but we've been working on her little by little and have at least gotten to the point where we can convince her (usually) to just take her medicine along wherever we're going.

On the morning of Good Friday, my husband, children and I arrived at my parent's house around 7:30 am to load up my dad's truck and begin our drive up to San Jose. To my surprise, mom was up and ready, stuffing the last of her things into a suitcase. She had three bags just for herself, for our three day weekend trip. She had a suitcase just for her hair and make up products. She couldn't get it to all fit in the suitcase dad gave her and needed some help to work it out. When I suggested that she leave some things behind (for example her blowdryer-the hotel provides one), she became agitated with me. I knew leaving things behind wouldn't be an option so I found another bag and made it work for her.

She actually did pretty well on the drive up to San Jose. She had to stop once for the bathroom. Of course she had to stop at 12:00 for lunch; we had planned for this and stopped when we saw a Carl's Jr. so she could have her hamburger and milkshake. She was silent for most of the drive, unless she had a critique for dad on his driving skills.

When we arrived to Aunt Peggy's house, the first thing mom said when we walked into the house was,

"I can smell your dog in here. It's so funny how I can always smell your dog whenever I come over."

I cringed when I heard her say it. I knew she was going to say it; she said it the last time. Her filter is gone; whatever is on her mind is on her tongue. Aunt Peggy is very patient and understanding, she just gave her a hug and changed the subject.

The hardest part of the trip was working with mom's time schedule. Dinner was a little later than her usual 5:30. Aunt Peggy was making pizza, and only so many pizzas can be baked at one time. The first pizza came out and we fed the kids...and mom. She sat down with the kids and was done before any of them had a chance to let their pizza cool off. This is the usual with her; she's always the first to eat and she eats as if she hasn't had food in days. At 7:00-no matter if she's visiting at my house for our Sunday dinners, or if we're on vacation...wherever she's at-she begins pacing and talking about going home (or, in this instance, back to the hotel).

"When are we gonna go? Because I have to get ready for bed and I have to take my medication at 8:30. I have to be in bed by 9:00."

This trip was no exception. It started around 7:00 and every ten minutes or so she would ask us when we were planning to leave. It is like having a little child nagging at you, except a little child can't tell time and remind you how many minutes are left until he/she has to be in bed.  Since we had had a long drive up, the kids were a little tired too (surprisingly they didn't sleep in the car) so by 8:30 we wrapped up our first night's visit and made it back to the hotel. As soon as we were in a parking spot, mom jumped out of the car and disappeared in the hotel before the rest of us had even gotten out of the car; I'm not kidding. After I got my kids settled down (a few minutes past 9:00), I went next door to the room my parents were staying in, and sure enough, mom was in bed. The rooms we booked were studio rooms, so the bed was off to the side of the kitchen and living room. Mom kept yelling at dad for having the TV on, and the light.

"Why do you have the TV on at bedtime?....I can't sleep with that light...It's too noisy....You guys need to go to bed...You aren't supporting me..."

The next day we went to the zoo. Mom slept in as long as she could in order to be ready by 9:00 to leave to the zoo. I thought she did better than expected during the six hours we were there. She did complain about being hungry the closer we got to noon. The exhibits we were visiting weren't close to food and we wanted to finish seeing everything in that area before we made it back around to food. She reminded us quite frequently that she was hungry and that it was lunchtime. I have small children; anyone who has small children, or has spent any length of time with small children, knows that when they want something they will not let up until they get it. Especially when they are hungry. My mom is the same way. In fact, she is worse than my little kids. It was close to 1:00 before we made it to a food stand. Mom was the first to get her food and she finished before the rest of us even had a chance to get situated at the table.

While visiting the various animal exhibits, she seemed to enjoy seeing the different animals, but she couldn't remember what most of them were. Sometimes she would ask, most times she just quietly walked around the exhibits and looked inside the cages.

That night, we went back to Aunt Peggy's to eat dinner, dye Easter eggs with the kids and visit. Mom did okay...her conversations are always a bit awkward. She has lost inhibition on what is appropriate conversation and what is inappropriate conversation. But like I said, Aunt Peggy and her family are very patient and accepting. They understand the situation and were just happy that we could be there. Around 7:00 mom started getting antsy again. At 8:30 she took her medicine and let us know that she did so and had to be in bed 1/2 hour after she takes it. She needs to get back to the hotel now. She needs to get ready for bed. She needs her sleep or she's not getting up in the morning to go to Easter brunch with us. A few times, she leaned into Jeff and told him to tell my dad that we needed to go, that the kids needed to go and that "he'll listen to you." Back at the hotel, the same frustration and complaining ensued as the night before, with the lights and TV in the hotel room.

The next morning was Easter, starting with brunch at our traditional restaurant, Pedros. I don't know if she made the connection that this was the restaurant had grown up eating at every year for Easter brunch. She was concerned about what kind of food they had and whether or not she would like it. Apparently she found some things that she liked and ate very little; she's not used to eating a big breakfast (it's usually Slim Fast). Back at Aunt Peggy's house, we sent the men out to the park to hide hundreds of plastic Easter eggs for the kids. Mom asked where they were going and I explained that they were hiding Easter eggs. I got a very confused look in response,

"Easter eggs?"

"Yes, the plastic Easter eggs that we filled with candy," I told her.

"What are you talking about? Eggs with candy? You mean those plastic round things that we put candy in? Those aren't eggs."

"Yes mom, those are plastic Easter eggs. We filled them with candy and now they're hiding them for the Easter egg hunt."

"Hide them? Why would you do that?"

She followed us to the park and watched the kids as they ran and collected their eggs. There were several people who went with us; my cousins, their kids, and a couple friends of theirs. As soon as the first group left back to the house, she was gone. It was almost 2:30.

That night was the most difficult night with her. It was our last night visiting with our family, and we weren't ready to rush out the door early. She became very upset when 8:30 came and went and we were still visiting. At night 9:00 she was pacing and nagging us to go. At 9:06 she came into the front living room, where my dad and I were talking with Aunt Peggy, and raised her voice and became angry.

"It's 9:06. I need to get back to the hotel. I need to get to bed, it's really important that I get my sleep...I took my medicine, I have to go to bed 1/2 hour after I take it..."

We tried to calm her down, get her to relax on the couch or lay down somewhere. There's no reasoning. Finally, she gave her usual, defensive response,

"You aren't supporting me...maybe I should go and die!" and with that she stormed out of the room and back to the living room where my Uncle and Jeff were visiting. According to Jeff, she was quite upset and complaining while sitting with them.

Not too long after her outburst, we said good-bye to Aunt Peggy and her family and drove back to the hotel, where mom ran upstairs and tucked herself into bed in record time.

The drive home was fairly quiet and uneventful with mom-other than the driving criticisms and complaints of being tired (she could not sleep in the car, she had to keep her eye on the road to be dad's side seat driver). The normally-six-hour drive turned into eight-hours with traffic and potty breaks, and we arrived back to my dad's at 4:30 in the afternoon. As soon as we got home, mom raced inside and locked herself in her bedroom for a nap, leaving dad with all the luggage and clean up. Apparently it was a tiring weekend for her.

It's good to get people (who suffer from dementia) out and about. It's tiring for the people who are taking them out. It would be easier, sometimes, to just stay home and not have to deal with it. This has been difficult for our family, and especially for my dad who has to deal with this day in and day out. But, we are doing our best. We want her to be around as long as possible, so we continue to do whatever we can to keep her mind active and give her experiences to help her thrive.