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Sunday, June 8, 2014

The Best Days

 My best days, by far are the days that my kids and grandkids come to visit. It is so hard to get out of the house, taking care of Dad. When they come to visit it is like a dark cloud gets shot out of the sky with a super shooter 2000 water sprayer.
 
 Days become about smiles, bubbles and laughter. Running and giggling fill the air. Life feels like life again. Sunshine pours over me even if it is storming outside.


 There is nothing like watching the wonder in the eyes of a toddler and a preschooler with bubbles! The pure and utter joy! Bubbles are so magical and friendly. Kids just know that a bubble isn't going to hurt them. That the only reason for a bubble to exist is to make them laugh. 
And water, running water, bubbling running water. If it isn't there to stick toes in, what the heck is it for? 

 Ok, I guess for washing rocks of course. And toes, and puppies, oh, and baby brothers too. 
 Paxton decided that Grandpa had become a little lax in mowing. He obviously needed to assist him. It is a very rare thing to get a picture of this kid when he's not moving. Most pictures of him are a blur of color topped with blond streaks in the wind.
 More rocks, more water. Grandpa has moved the little water feature since she was here last. I wonder if she will approve?
 Let's face it, the kid is cute and he knows it! I still need to work on making him a Rams fan though. 
 Noah, he got Daddy's hat, and just what are you going to do about it? 
 He can be very angelic when necessary, look out Mommy. 
 He's pulling himself up to a stand now a days. He has just started crawling, too. When he's in a hurry though he still does the army crawl, especially on our hard wood floors. It's just faster. 
 "Not this again!" He's not a fan of sunglasses. 
 Grandpa set him up his own royal chariot. Grandpa can be a little over protective. He hates it when one of his grandkids gets a boo boo. It breaks Grandpa's heart when they cry!
In case you can't tell, Noah loves his Grandpa.

 The chariot was enjoyed by Mommy and Daddy, too. 
 The fish tank is also a big hit with all of the grandkids. Grandpa loves letting them feed the fish. He will sit in front of the fish tank with a grandchild on his knee all day if they want to. 
 Exercise is important for a growing boy. 
 More bubbles. 
And some pure silliness to brighten a day.

Saturday, June 7, 2014

You Will NOT Win

Living with someone with profound dementia can cause a full range of emotions. Everything from frustration, loneliness, and sadness to laughter, surprise and bewilderment. You never know what the person affected is going to say or do next. It reminds me of a line from the movie Apollo 13. I don't remember it word for word, but it was something like, hours of pure boredom punctuated with a few minutes of sheer terror.

While I have only had a few of those moments of sheer terror so far, I have had the long hours of pure boredom. Once in a while though, Dad surprises me with moments of his old self. The other day I brought down one of his old photo albums.
 He spent about an hour looking through it. Telling me stories about the people in the photos. Showing me some very old Japanese money, from World War II.
 He showed me pictures of Billie Jean, his first real love, the one that got away. He still speaks of her more than he does my mother. Mom wasn't always nice to him though, that may be why.
He smiled and laughed and enjoyed looking at the old photos. It made his day to spend time in the past. The past is where he feels the most comfortable. It is what he still remembers best. 

There are a lot of rules when dealing with people with dementia. Join them in their world, where ever, or whenever,  that world is at the moment. Don't try to bring them back to your world. It just causes frustration and torment for both of you. 

The other day Dad was telling me something he "heard." It was something from his world. It was something of dire consequences. "They had to close the Big Island of Hawaii." He told me with the seriousness of an anchor man talking about the devastation left by a tornado. 

"Really?" I asked. Expecting to hear something about a volcano about to erupt. 

"Oh, yes!" He continued, "they have to keep everyone off of it." His eyebrows were raised in an all knowing way that I have seen repeatedly since childhood. 

"Why," I asked again. 

"It broke loose, and is heading for Alaska!" He told me, believing every word he was saying. 

Now, I realized I was in his world, and trying very hard not to laugh, and look as if I believed every word, "What? Really?"

"Oh yes! It is going to crash into Alaska. When it does," he was squinting, and looked dead serious, "the volcano is going to explode, and take out half the island!" 

"Seriously?" I stayed in his world with him.

"We don't have to worry about it though." He said. 

"How come," I had no idea what to expect next. 

"It isn't going to happen for a hundred years," he finished. 

I don't say this to make fun of him. I say it because it is one of those moments that make the boredom of so many other moments all worth while. It may not be reality as we know it, but it is him still communicating, still talking about things, still with us. 

And then there is the number one rule of taking care of people with dementia. The most important rule of all:

 DO NOT argue with them.  Why? For one simple reason, YOU WILL NOT WIN!

You could be 100% right. You could be sitting and watching the news and it is proving you right. You could have ten books and fifty people proving you right, YOU WILL NOT WIN!

I forgot this most important rule today. I blame myself. I was trying to make a cake from scratch for Willie's birthday, it didn't go well. It took FOREVER to make. I followed the recipe exactly, it did not taste good. It was dry, and not very chocolaty. It had five star reviews on the Food Network app. I thought for sure it would be good. I tell you what, those reviews must have been by people who think grocery store cakes are good. You know the ones, they sit there in the bakery coolers, for days and days, waiting for some fool with PMS craving chocolate to buy. It wasn't even that good. I was pissed! 

I went out to the living room and they were talking about the Belmont Stakes. I said something about forgetting that it was on. I like to watch horse racing. Seeing those beautiful beings gracefully running, I just enjoy it. I was sad I missed it and still pissed about the cake. 

"They are trying to move that to Iowa," Dad said. 

"What? The Belmont Stakes?" I asked, bewildered. 

"Yeah, they want to run it at that big car track," he said. 

"Dad, they are not going to move the Belmont Stakes to Iowa."

"Oh, yes they are, they offered to pay $75,000 dollars to move it to that big track." He insisted. (Yeah, you read that right, it only took $75,000 to move one of the most elite horse races in the world, to Iowa. What a deal!) 

"Dad, they aren't going to bring the Belmont Stakes to Iowa, and they are certainly aren't going to run horses on a car track," I continued, my frustration showing.

"The guy that bought the big track, said he is going to try to get that big horse race there," he was determined. 

"Dad, they can't run horses on a car track and they can't run cars on a horse track. The horses hooves would be ruined if they tried to run on a car track. And they aren't going to move the Belmont Stakes there" I tried to get him to understand. 

"That's not what they said," (you should know that everything is something "they said") "The guy who bought that track said he is going to bring big horse races there."

"OK," I gave in, remembering the number one rule, don't argue with someone with dementia. I walked away, I did NOT win. 

In case you are wondering, the track he is talking about is a NASCAR track in Newton, Iowa. It has had Nationwide and Camping World races there, and I think they are hoping to have a Sprint Cup race there someday. I'm pretty darn sure The Belmont Stakes will never be moved to Newton, Iowa. Except in Dad's world. I will never doubt him again. 


Sunday, May 18, 2014

An Outing With Dad

Today Willie and I decided that we were going to take Dad to a park we found that had a perfect path for his electric chair. The path was wide and went all the way around a little lake. Today was a perfect day for it, too. The first obstacle, convincing Dad that he wanted to go. I decided to take the assertive approach and just tell Dad we were going. I got his chair out, and had him get in it when he came out of the bathroom. Success!

"It looks like it might rain," he said. He uses this excuse when he doesn't really want to go out with his electric chair. He will go on and on about wanting to take "the big boy" (that's what he calls his electric chair) out, but then when I say ok, he'll say that it looks like it is going to rain. 

I wasn't going for it this time. It wasn't going to rain, it was a beautiful day. There were clouds in the sky, but the big puffy happy clouds. Bob Ross clouds. The beautiful spring day clouds, not rain clouds. 

I told Dad, "It's not going to rain, you told me so." He reads me the weather from the newspaper every day. Every once in a while, because he gets his newspaper in the mail, he will get three papers in one day. On those days, I hear the weather report three times. 

We got Dad out to the car. Got him in, and brought his chair around to the lift on the back of the car. I was so happy that Dad didn't try to worm his way out of going. We put the key in the lift to lower it, and nothing happened. "You've GOT to be kidding me!" I said out loud. Willie and I messed with it and messed with it. We checked the line to the lift. We followed the line and found it was connected to the car battery. Willie took the fuse out and put it back in. We go back to the lift, and it started going down. "YES!" We both said. 

We put the chair on to the lift. Turn the key the other way to lift the chair up. Nothing..... "Really!!" I grumbled. Willie messed with the fuse again. Nothing..... We messed with the key again, nothing. I was ready to kick the damn thing, then suddenly, it was working again. We get the chair secured, finally after about twenty minutes. We get in the car and head out on our way. 

We get to the park. After a few more are you kidding me's, and really's, we get Dad's chair back on the ground and him in it. After all of the fussing with the stupid lift, Dad now needed to use the bathroom. The only bathroom was a non flush latrine. It was interesting getting him in and out of there, but we did it with no wet pants, so I counted that as a win. 

We started down the parking lot to the path. Dad started worrying that he couldn't fit on the path with his chair. I think the dementia is starting to affect his eyesight and perspective. 

Once we got him on the path the next obstacle was a bridge. This park has five or six very old bridges that have been brought in from other areas, rebuilt and preserved on this path around the lake. Dad started to panic a little about going over the first bridge. I don't think he would have gone over, but Willie and I talked to him the whole way. The bridges aren't very long. Once he was on the other side Dad calmed down some. Once he got into the groove of steering his chair, the rest of the walk went very well. He worried a bit going over the second bridge, but after that he went over the rest like a pro. 

 Along the path we came upon several families of geese. The baby goslings were cute as could be. The parents made sure to warn us to stay back, but seemed very used to humans. None of them came chasing after us, or became aggressive in any way.
Willie and Dad talked quite a bit along the way. Dad reminisced about a state park up by Algona. He has been talking more and more about Algona. I know at some point that will be mostly all that he will remember. For now though, he still remembers who most of the people in his life are. Even if he doesn't remember what he just said a few minutes ago. 


We got all the way around the lake and back to the car. Dad enjoyed being out of the house, and outside. He might have even enjoyed taking another lap, but he was thirsty. Next time we will bring ice water along with us. 

After fighting with the lift again, we got his chair loaded up and headed back home. A successful outing if I do say so myself. Next time, maybe we will try bringing Bazinga. I know Dad would enjoy that. 


Saturday, May 17, 2014

A Conversation With Dad

Dad and I were watching the movie Twister today. The one about the storm chasers. Helen Hunt is in it.

For some reason, Dad was "recognizing" Helen Hunt. He couldn't remember her name, but he "knew" her. I told him who she was.

"That's Helen Hunt," I said.

"Oh, I know that." He replied. I watched him. He kept studying the TV.

"I know who that is but I can't think of her name," He said, again.

"That's Helen Hunt, Dad," I told him, again, trying to hold back a giggle.

"Oh, I know that." He kept watching the movie intently. I could see that he was trying to "place" her again.

We kept watching the movie. When it was over the credits started rolling.

"Helen Hunt," he said. "That's who she is. She used to live next door to us up in Algona, when I was a kid." He was so serious. My 87 year old father, truly thought that he had lived next door to Helen Hunt when he was a kid. Again, I held back a giggle, but I had to text my friends Dawn and Kelley to let them know that my dad rubbed elbows with a celebrity as a kid.

With the movie over, Dad started talking about a tornado that hit Okaboji when he was a kid.

"They found a cabinet out that had been blown out of a house. Inside...." he got an all knowing look on his face, "inside, they found a dozen eggs, and not a one broke! And that tornado taught people something that they didn't know before," he continued. "People used to believe that tornados wouldn't cross water, but this one did!" He looked so knowledgable about this.

He looked away from me. He turned back, with his all knowing face again. "There was a tornado that hit Okaboji, and after it was over," he got very serious, "they found a kitchen cabinet with a dozen eggs in it. Not a one was broken!" He got up to go to the bathroom.

Now, I know the tornado stories are true, he told us kids about them when we were little. Helen Hunt.... of course not. Although, her grandmother lived in Atlantic, Iowa in 1920, I found out on Google today. She would have been about eight years older than my dad.

Dad came walking out of the bathroom. "There was a tornado in Okaboji once. After it was over, they found a kitchen cabinet, with a dozen eggs in it......"

Friday, May 16, 2014

Dad's Project



 I've been doing a lot of reading about dementia and Alzheimer's recently. I'm glad I have. It has given me a much better insight into the disease and how it effects thinking. This has given me a peace of mind that I hadn't had before. Knowing that my dad's strange behaviors, lack of manners, and never saying a simple "thank you," is part of the disease process and not really directed at me, has changed my attitude. It has lifted a cloud that had been hanging over me. I no longer feel like I just can't do anything right.

I also have realized how lucky I really am. While Dad isn't polite to me, he isn't angry or aggressive. He isn't yelling at me, throwing things at me or trying to hit me. While he might hide his checkbook now and then, it isn't because he doesn't trust me, it's because he has a lack of trust in the world in general. If I ask him where his checkbook is, he tells me, if he can remember. 

Dad still has a sense of humor. He still laughs, he still makes jokes. I've read that many people tormented by this disease are much different. Very paranoid, very frightened, very angry. Dad isn't any of these things, yet. People suffering from dementia, have no control over these very negative, very heartbreaking reactions they have. The parts of their brains that control those emotions are no longer functioning properly, their brains are losing more than just memory. 


Some of the things I have read, have suggested letting the person with dementia try art. I like painting, and creating things. I've been working on a lot of projects for Valerie's wedding shower. Dad watches me as I work. He asks me questions, and seems interested.

Today I decided to see if he would like to help with one. I know this can be very tricky. Learning new skills is impossible. He still has trouble with the volume button on the TV remote, and he's lived here for a year. Trying to teach him to make an origami rose, just not in the cards.

I had bought two shelves at The Habitat For Humanity Restore. I knew I wanted to use them for the shower. Not as shelves, but as signs or something. They were only three bucks each, even if I couldn't figure out something to do with them now, I would later. They were painted a reddish brick color. I planned on using them pretty much as is, but they needed cleaned up.

I looked at them this morning. I looked out at Dad sitting in his chair. I didn't know how this was going to turn out. Would he say no? Would he get mad that I asked? If he said he would help, would it overwhelm him? I wouldn't know if I didn't try. I decided to ask him in a way that "no" just wouldn't be an answer.

"Dad, I need your help with something," I decided to say. I brought the first shelf out. "I need you to clean this shelf off for me. I want to use it for Valerie's shower, but it needs cleaned up first." I wasn't sure what to expect out of him, and was very pleasantly surprised when he said ok.

I put a towel over his lap, brought him a damp towel and he went to work. There was a price sticker on it and he asked if he should take it off. I told him to please take it off. It was pretty sticky and he worked hard at getting it off. I went out to the kitchen and got him a scrubber pad. He scrubbed at it until he got it all off.

He looked very proud of the job he did. I brought him out the other one. Just as dutifully he clean the second one off. When he was done, I asked if he'd like to paint them. I hadn't really planned on painting them, but he was enjoying working on them so much, I thought I'd try.

"Do you want to paint them for me?" I asked. This time leaving him a chance to say no if it would be too overwhelming.

"Well, sure," he answered.

I got him the paint, and paint brushes. I realized quickly that I had given him too many paint brushes to pick from, his face was a bit panicked when he looked at them all. I removed all but three and he calmed down. I poured four colors of paint in a pie pan, the one I always use when I paint. I put the paint where he could reach it.

"The number one thing you need to know is, you can't do this wrong. You can just do whatever you want. If you want to paint a tree, that's fine. If you just want to swirl the colors around, that's fine too. Whatever you want to do." Then I let him have at it.

I've read that some dementia patients turn out to be great artists, that no one ever knew they had such talent. My Dad.... not one of those people. He enjoyed it though. And actually, the way he swirled the colors together, it looks just fine and will still look perfect for what I want to use it for.

Best of all, Valerie will have something at her shower that her grandpa made. I may have to find other things he can help with. Even if it is folding hand towels, or something like that. I think he liked feeling useful.

Wednesday, May 14, 2014

Dad Wants To Go To Algona

My dad grew up in Algona, Iowa. He has a lot of happy memories of his life there. Even after his father died when he was thirteen, most of his memories are good ones. He will tell me stories about how this family or that person helped out his mom. Or how this fellow tried to teach him how to drive a big delivery truck. How the church did this and the school did that. You know, the days when neighbors helped neighbors. My dad's family was probably very lucky to live in small town Iowa when his father passed away. It was in the throws of the depression, in a city they may have had a much harder time of it. He and his four brothers and one sister could have ended up in much different situations. As it was, the neighbors looked out for them, helped them grow into fine adults, and watched out for Grandma.

Dad has wonderful memories of his childhood. It wasn't until he was older that they moved to Des Moines, when Grandma got a job there. Grandma was a fighter. If anyone could raise six kids on her own, five of them being boys, it was Grandma. She was the type of little old lady out shoveling her front walk when she was in her eighties.

Dad wants to go visit Grandma and Grandpa's graves. He wants to make sure the headstones are still set, and not broken. I want to take him, and offered to. However, when I made the offer, I didn't realize it was a four hour drive, one way, from here. I know it will make him happy, but I don't want to take him alone.

Four hours is a fairly long trip for anyone. For a man with dementia, and less than reliable bladder habits, driving eight hours in one day, would be forever. Frankly, the idea of taking him by myself, terrifies me.

I have gotten used to the idea that I have to take dad into men's bathrooms. I don't like it, and am embarrassed when some poor man wants to come in and go to the bathroom. Most will go back out and wait, which makes me feel guilty. Others will go in the closed stall and go anyway. Most are very understanding. As a matter of fact, I haven't had anyone get mad at me, yet. Most of these bathrooms are small with one or two stalls. Taking Dad into a rest stop bathroom on the interstate is different. It is easier, with the newer rest stops. They are bigger and set up better for people with wheelchairs. That part is good. But they also have a lot more stalls. Making it much more likely that someone else will come in. Dad always wants to use the urinals instead of going into the stalls. So there I am, out in the open. Men walk in, see me, and automatically think they are in the wrong restroom. I explain, "no, you are in the right place, I'm not," trying to joke to ease the embarrassment on both sides.

If Dad makes it on time and his pants are still dry, I can get him in and out quickly. If he doesn't make it on time, or his aim is off and he needs changed, it's just a nightmare. It takes a long time to get Dad changed. He can help with his left leg, but his right leg is more difficult. If the stalls are too small, we have to change him out in the middle of the bathroom exposing him to anyone who comes in. If the stall is large enough for his chair, it usually isn't easy for me to maneuver around in. I end up bumping my head on the toilet paper dispensers, or getting jabbed with a coat hook. And I don't want to sit on the floors, because they are usually gross, so I end up with a sore back as well. It isn't fun. It stresses me out, which in turn stresses him out. Stressing Dad out can lead to more accidents, because he tries to hold it, when he can't. It makes him more obstinate, and when I ask if he needs a bathroom he will say no. We could be somewhere, anywhere, before we leave, I always ask if he needs to go to the bathroom. "No, I'm fine." He always says.

Knowing better, I'll always ask, "can you try anyway, just to be sure?"

"I don't need to go!" He'll growl.

I take him out to the car. I get him in. I put get the wheelchair all broken down and lifted into the car. I get in the car and pull out of the parking lot. I look over at Dad and he is doing his ever so familiar bathroom jiggle. "We need to get to a bathroom," he says with panic on his face.

I know that it is the dementia that causes this. I do, and I try very hard to remember that. He probably doesn't even remember me asking him if he needed to go by the time he is in the car. That wheelchair is heavy though. He has an electric one, with a lift on the back of my van, that he won't take on long trips, "because it might rain," he always says. It could be 80 degrees with no cloud in the sky, but.... "It might rain."

So, eight hours in the car, just does not sound like a whole lot of fun to me. Especially, since we will probably drive the four hours up, get to the graveyard, he probably won't get out of the car, and then drive back home. A drive in which he will be squirming around the whole time because he is uncomfortable from sitting all day. Honestly, he will probably have been squirming most of the way there, too.

If I am going to drive 8 hours in one day, I'd rather it be all in one direction, and take him to Washington DC to see the World War II memorial. I know it is more than an 8 hour drive, but we could stop, and stay at hotels along the way.

But he wants to go to Algona. Wish me luck.

Tuesday, May 13, 2014

Early Morning Walk

 A few mornings ago, I woke up early. It was Willie's day to go into work late, and he was still sound asleep. Dad was still in bed and it was still early to get him up.

I laid there in bed and played on my phone a bit. Then I decided to get up, get dressed and take Bazinga out for a walk. We don't get to get out much, I don't remember the last time I took him for an actual walk. Winter was so crappy this year, and with Dad needing constant supervision, getting out for a walk was just not a priority.

With warmer, more predictable weather setting in, I've decided to make getting out for a walk a priority. I can't take care of my dad properly if I don't take care of myself. Getting up early though, that's quite a challenge for me. I hate getting up. Once I'm up and Bazinga and I are out the door, it is always worth it though. Just getting to see so many spring flowers and breath in their sweet aroma made it all worth while.
 Bazinga had a grand time scoping out the dandelions and checking on their readiness. He does like a tasty dandelion puff, but has no interest in their yellow pre-ripened state.

Of course there were all of the wonderful doggie smells to smell, and posts to pee on. He had to make his presence known.
It was a Sunday morning.  If you ever want to roam peacefully about a small Iowa town, Sunday morning is a perfect time.

Williamsburg is such a town. It is a strong Lutheran community. The church across the street from my house always has a full parking lot for both Saturday evening services as well as Sunday morning.

The town rolls up the sidewalks at noon on Saturdays, and doesn't unroll them until Monday morning at nine. It is a nice quiet way to live. The "simpler life." I enjoy small town living, as long as there is a larger city nearby. Iowa City/Coralville is only 25 minutes away, so that works fine.

On our walk we found some violets. I love violets. If it would have been possible I would have used violets and daisies for my wedding flowers. I know most people think of them as weeds, but I  don't. I see them as little reminders of everything spring.

 Not to mention, they look like little butterflies taking off to fly somewhere wonderful.

White violets, purple violets, yellow violets, I love them all.

Bazinga, however had no interest in the tiny delicate little flowers.
He much prefers his dandelions. Which, I learned on this particular walk, have a very specific ripening time. A yellow dandelion isn't even worth a sniff. Bazinga passes those by without a second look. (Although, I have a friend whose pet pig thinks they are delicious.)

Even dandelions that are in puff mode, aren't necessarily ripe to eat. They must be in full puff bloom. When they have gotten to that stage, you can't keep Bazinga away from them. He gets them so quickly you don't even have time to try to stop him. He loves his puffs.

Dad Rediscovers His Bell


We have an old school bell. I remember it being in Gran and Grandpa's house before they sold it to buy a travel trailer and travel the country. Where it came from before that I have no idea. I don't remember much about Gran and Grandpa's house, except it was big, it was on a brick street, and Gran always planted snap dragons. Gran was the one who taught me how to make a snap dragon roar, and then would get mad when I would do just that.

I loved Gran and Grandpa very much, and was sad when they sold their big white house. Though it was good for them to get to travel, and my mother received a lot of their furniture, which was good because ours was wearing out. Mom and Dad used that furniture until my mom died in 1988, and Dad just couldn't bare to look at the couch she spent most of her life on reading and embroidering. The couch she spent her last days on gasping for air due to severe emphysema.

If you never remember anything else from this blog, please remember this, DON'T SMOKE! If you do smoke, STOP! Dying from emphysema is a horrible, long, painful death. It steals away everything important to you inch by inch over increasingly painful and awful years. It is not a good way to die. And I do blame my mother's smoking, (not my mother, herself, she was lulled into smoking in the 50's when everyone was smoking, and the tobacco companies were deep into their lies and false propaganda campaigns)  for a lot of what my father is going through now. His mini strokes (TIAs) were probably made worse by my mother's second hand smoke. He may have even had a few before she even passed away that we never noticed.

Dad, for years has used the bell when he needed something after being in bed. When he was younger he was able to get up to the bathroom on his own using his crutches. Dad had great upper body strength, he had to. I even remember when I was very young, him hopping to the bathroom because he didn't want to mess with his crutches. Probably, why he ended up with a total knee replacement years later, which stopped the hopping. And a complication with his last stent placement, about seven years ago, forever ended his use of crutches. They had to go in through the artery in his arm rather than the groin, and a series of events culminated and he almost lost that arm. Dad being the ever vigilant young sailor in an old man's body not only kept his arm, but mostly has full use of it again. However, his crutches had to go, the strength in his arm was gone. Enter, the bell.

Dad used the bell to let my brother and sister know when he needed something. A drink of water, his urinal emptied, his blankets straightened. Dad has a big issue about his blankets being straight, I don't know why, but they must be just so.

Once he could no longer use his crutches to get to the bathroom, he started using a urinal at night. Makes perfect sense. Dad's house was not set up for wheelchair use. The doorways were much too small, there was clutter and junk everywhere. It just did not work out well. Plus, when you are on water pills, having to transfer from bed to wheelchair to toilet and back again in the middle of the night.... a urinal was much more practical. No matter how hard I tried, I could not convince my brother, who set up Dad's pills, that he should give my dad his second dose of water pills before 4 pm. He was determined to give the two doses 12 hours apart, which meant poor dad was up most of the night peeing.

When I would go visit my dad, I would go into his room and find three full urinals and a gallon milk jug also full of urine that no one had emptied. Pissed me off. So, I resolved that when he moved here, he would have one, and only one urinal. It would get dumped and cleaned daily. It would not sit for days and days getting stinkier and stinkier.

When Dad first moved in he used his bell a lot! Not just to have his urinal emptied, but for everything. If he thought I gave him too many socks, he would ring his bell. If he was cold, or hot, or couldn't get the TV to turn on or off, the bell rang. It drove me a little nutty, but I'd rather have him ring when he doesn't need to than not ring when he does.

Then he stopped ringing his bell. I'd go in his room in the morning and he'd say he was cold all night. I'd ask why he didn't ring the bell, I could have comedown and turned up his heater. He'd just look at me like I was crazy. I'd come down to his room and he'd say he was up all night hurting, again I'd remind him he could use his bell, and again he'd look at me like I was crazy. The other day, I walked in and his urinal was full to the top. I again reminded him, that he could use his bell. This time, for unknown reasons, it took!

I blame myself really. I didn't have to remind him of the bell. All the other times he didn't seem to know what the heck I was talking about, and would promptly forget the whole conversation within a few minutes.

I have still been giving him coconut oil. Poor Willie is really starting to notice how much in our house tastes like coconut. I really think it is helping my dad's memory though. Now, that said, I do not believe it is either reversing the damage already done, I do not believe it is changing the coarse of his disease. I do not believe it to be a miracle cure. I just believe it is helping some neurons, that are compromised but still functional, work better, for now. It is not going to keep those same neurons from dying, it is not going to grow new neurons. It is just helping energize, however temporarily, some weakened neurons to keep them a little more functional.

In the mean time, my dad is back to ringing his bell. He has a habit of tucking away his socks under his pillow. Remember, he only wears one. Then out of the blue, he pulls said socks out, rings his bell, and asks me why I gave him "so many socks."

Saturday, May 10, 2014

More Surprises


Today, Dad and I were sitting in the front room. He was "watching" TV, I was reading a book on my Kindle. I put quotation marks around watching, because most of the time he seems to just stare at the TV. Not really comprehending what is going on. He will remark once in a while about a game show, but mostly he just sits. 

Today he was actually commenting on shows. He was laughing in appropriate places. He seemed to get what was going on. He hasn't done a lot of that. It was fun to actually talk to him about what we were watching. Honestly, I wasn't sure what we were watching, so he was ahead of me on it. We were watching some M. Night Shyamalan movie. I only know that because I saw it in the credits at the end. It was about the plants and vegetation of the earth attacking and killing humans with a poison vapor they were emitting into the air. I was reading at the same time so I was getting confused about the plot. Dad, on the other hand, not only was keeping up, (with an M. Night Shyamalan movie) but asking questions that made sense. One scene, the hero, Mark Wahlberg, got separated from the heroine, Zooey Deschanel, and a little girl who had been with them. Wahlberg was running alone and Dad asked, "where are his girls?" 

I looked up from my Kindle, "I'm not sure, Dad."

"Well, they aren't both his girls, one is a girl the other....." he lost his train of thought, "well, the other isn't his girl." He was trying to say that the other was a grown up woman, but couldn't find the correct words. This was amazing! Though he lost track of his words, the fact that he was keeping up with the movie, and understood what was going on in the (M. Night Shyamalan) movie was incredible. 

The movie ended and another was coming on. For days now I have been trying to get Dad to go outside. Just go out and sit on the porch. Or come out when Willie and I were planting herbs the other day. He wouldn't do it. At one point I even brought his electric chair out to the front room, hoping he'd get in it and come outside. He refused, and I drove his chair back into his room hitting the bed and the wall along the way. He likes to complain about not getting out, but when we ask him to come out with us, he says no. 

Today, the movie "The Girl With the Dragon Tattoo" came on. I was still reading my book. It is called "I Will Never Forget." About a daughter and her journey with her mother, as her mother faded deeper and deeper into dementia. As you may be able to guess, the book has caught my attention and kept it. I also recently read "Chicken Soup For The Soul, Living With Alzheimer's and Other Dementias." I recommend both, especially if someone you love is or has fought the fight with this disease that rips the very soul from an otherwise familiar body. 

Suddenly, Dad sat up in his chair. "Hold the door open for me," he said out of nowhere. 

I looked up and said, "ok," not sure what door he was talking about. I looked at the bathroom door, but it was open, and he never needed my help with that. 

"I'm going to go out and sit on the porch." He said. 

I was completely taken aback by this. This is the first time he has taken the initiative to go outside. I expected him to ask me to go get his electric chair. He didn't. He stood up, grabbed his walker, and WALKED outside to the porch. He walked over to one of the outside chairs and sat down. HE WALKED OUTSIDE! He has not done that since last summer. He only did it then because he had to. We didn't have the ramp yet, and had to walk down the three steps in the front of the house when we had to go to his appointments. 

Then he started talking about wanting to go somewhere. This is something else he does and then changes his mind when you offer. Which I did, and he did change his mind. "And he's back," I thought to myself. 

"We could drive to Algona next week if the weather cooperates," I told him. 

His eyes lit up, "Ok," he said. He grew up in Algona. His parents and brother Don, are all buried up there. He hasn't been up there in several years to visit their graves. He has said several times he would like to, I guess I'll find out  next week if he really will or not. I'll make the plans anyway, and see what happens. 

He sat outside for about 45 minutes, until "nature called," as he puts it. I worried if he would make it to the bathroom on time, he did. 

I still wonder if the coconut oil is helping his brain function better. I hope that is what it is. I don't know how long it will last. I just plan on enjoying the time while it does. 

My other thought, and this one scares me, is this might be the calm before the storm. It is a fact that people with dementia quite often will have a short period of lucidity shortly before they either slip into  an even deeper dementia, or shortly before they pass away. Sometimes, it is a very short time, even just a few short minutes, long enough for the person to say goodbye to his loved ones. Sometimes it can last a few days. Mimicking a remission of sorts, and just as suddenly as it starts, it ends. 

I hope it's the oil, but I am preparing myself for the other. 


Friday, May 9, 2014

He Turned It On!!

This journey I have been taking with my father has been a circle from strange to bewildering to humorous  and right back to strange again. One minute he's fast asleep, the next he's having a conversation with the dog. He wears his winter gloves in the house when it is seventy degrees. He forgets he asked a question two minutes ago and asks again, but remembers that his car HAS to go to a dealership 80 miles away, to get the oil changed. He worries if the dog is outside to long in sixty degree weather, "he's probably cold."
I'm not going to lie, life has been very interesting this past year. I've watched as dad regressed, slowly, deeper and deeper into his dementia. There were increasingly more bathroom accidents. Increasingly more repetitive questions. I had said that I could tell if it was going to be a good day if Dad remembered to turn on his electric toothbrush in the morning. Soon, he wasn't turning it on at all. 

I had read several different articles about how coconut oil was good for you. It can be good for your heart and even help lose weight. While Dad doesn't need to lose weight, I sure do. Since dad moved in, I have gained twenty five pounds. I really don't like that at all. Not so much because of the way I look, but because I know it is so bad for me. I caught a virus about ten years ago that weakened my heart, so extra weight is just not a good thing at all, and I was too heavy before the twenty five pounds. So, I thought, might as well try the coconut oil. 

I started mixing the oil in different things. I put it in our morning oatmeal. I used it in baking, I put it on our toast. Dad and I were eating lots of coconut oil. Did it help me lose weight? No, no it did not. I kept up with it anyway. Dad's cholesterol was not just good, it was phenomenal. His good cholesterol was really high and his bad was 70! I mean seriously! I wish mine was that good! 

So, I kept up on the coconut oil. Something happened that I was happy about. Dad stopped having so many bathroom accidents. For a while, Dad was having one every time he went into the bathroom. He wouldn't wear depends so I was doing a ton of laundry. Going to Des Moines for his doctor appointments had become an experiment in terror. I would have to help him change his pants in tiny men's public bathrooms. Men's bathrooms are gross by the way. It got to the point where I didn't want to take him anywhere unless I had to. The worst was when Dad had a huge bowel accident all over a gas station bathroom that took me a half hour to clean up. I think the only thing that kept me from crying all the way home after that was that I was driving in the middle of a freak blizzard that the weather service had no idea was coming. 

After that, I convinced dad it was time to try Depends. He wore them on the next trip we had to take to Des Moines. I thought they would make life a little easier. They did not. He still wanted to use the toilet, which I was very glad to accommodate. I want him to be able keep as many little pieces of independence as he can for as long as he can. The Depends just got in the way, and I ended up changing his pants anyway. I was ready to give up. 


Then, out of no where,  the accidents slowed down. Suddenly, he was making it through the day with just one or two accidents. I was so thankful. Every trip to the bathroom he would get through without having to change his pants was like a vacation. Then he was making it all day. It confused me, but I was grateful. 

It was time for another dreaded trip to Des Moines. I packed up Dad's backpack. Three pairs of jeans, three pairs of underwear, three plastic bags for wet pants and off we went. It was a long day. He had a couple of appointments, and they took forever. Yet somehow, when we got home, there were no wet pants to wash! I thought it was a fluke. A fluke I was very happy about, but never expected to be repeated. 

A few days ago we had another long day in Des Moines. A very long day! We left the house at 7:00 am and didn't get home until 5:30 pm. Again, his back pack had all dry clothes in it when we got home. I was giddy. It was a very good day. When I asked if he needed the bathroom, he went. He got home in the same pants he left in. It was such a relief! 

I had never put it together. The coconut oil and the decrease in bathroom accidents. The other day I was researching online about dementia, and looking for things like support groups. While I was doing that, I stumbled upon an article with a video. It was about a doctor who's husband has Alzheimer's. She had been giving him coconut oil. Apparently, she had found research that the keytones in coconut oil can help in dementia patients. Our brains do their work by using the energy we get from glucose, or sugar. In dementia patients the blood vessels of the brain change and glucose can no longer pass through to energize the brain. They are too large to pass through the changing membranes of the blood brain barrier. The keytones found in coconut oil apparently are small enough that they can. The brain then uses the keytones as energy. When the brain has an energy source it works better. One test they do for dementia is to have the patient draw a clock. Before the doctor started giving her husband the coconut oil, his clock was not even recognizable as a clock. After weeks of giving her husband the oil, he drew it again and it actually looked like a clock. 

Now does this mean that my dad's change in bathroom habits can be attributed to the coconut oil? I can't say for sure. Does it mean I should expect more "improvements" as I keep giving it to him? I have no idea. Will the food in our house keep tasting like coconut, you bet it will! Do I think it will keep improving my dad's memory or change the eventual outcome of his dementia? No, I don't, but if I can get a few more weeks of him not having bathroom accidents, I'll make all of our food taste like coconut! 

Oh, and today, for the first time in months, Dad turned on his electric toothbrush!

Friday, March 28, 2014

Things I've Been Working On

Valerie is getting married in November. Something I am looking forward to very much. She is going to be a very beautiful bride. Her fiance is a kind, good, hard working man. He has a calm spirit that complements Valerie's high spirits in a way that enriches both of their personalities. They are so good together.

Right now, my sites are set on her bridal shower. I have picked out a theme, which I will not divulge here. While Valerie has seen most of what I am working on, she doesn't know the whole theme yet.

She worried me at one point. I had already made many paper flowers and painted some jars. I had already put quite a bit of time into things.
 "I don't really want a shower or a bacholerett party." She said matter of factly. "I don't really need much as far as household stuff." I'm sure my face must have dropped.

"Well, dear," I started, "you can talk to your sister about the bacholerett, but, you are going to have a shower." If I have to, I'll just tell people to get her gift cards to Lowes. They want to paint and stuff like that so why not.

I have been busy making paper flowers, saving and painting jars and planning how I want to use them all. I decided that I want to use repurposed items. It actually amazes me just how fast you can save glass jars. You think that everything is in plastic now a days. There are a lot of things still in glass though. Which is good for me since painted glass jars are a big part of the decor for the shower.
 I started paining the jars all one color. They were a rose gold color. It was very pretty. I liked it a lot. Until I started getting bored with it. The shower is going to be in the fall some time. I decided to start adding more colors. Some bold,  some not so bold. By the time I'm done they will all have a common theme, though.

Some are decorated with other materials as well. I have a book of upholstery samples that I got in St. Louis at a store that sells items that can be repurposed. I paid a few bucks for it and it has been a big part of what I've been doing.

 Some of the flowers I've made have been made from paper, but others out of the samples. I've been having a lot of fun experimenting and using different materials and methods.

I've also been making origami flowers. Mostly, roses. Some are made from brown paper bags, some from newspapers, and others from parchment paper.
 Pinterest is definitely a huge help with it all. I have gotten some ideas from there. A few ideas have been my own. And I learned how to make the origami flowers on YouTube.

When all is said and done, hopefully, it will all look the way I think it will.