”See that building up there on that hill,” starts in my husband, who has dementia.
“It belonged to my father when we started this town.” I allow him to say things like this without any correction. We have only lived here six years and most of them have been living with dementia.
He enjoys telling these stories, so who cares if they’re true.
He tells stories about everything now.
I enjoy just looking: the trees, the people standing waiting for the walk signal on the street paralleling the river. Where is everyone headed? What are they thinking?
I like going this way because it is off the Main Street in our little town and on this quaint old street lined with… old memories.
My Granny used to bring my older brother and I “to town” and we would go to the 5 and dime store so she could “spoil us” which meant we got to pick out a toy. Seems everyone knew my Granny and she liked to show us off, I think, more than anything.
My parents grew up in this town and tell stories of how different life was. Now that I’m older I pay more attention.
My mom tells of how she and her brother got to wander around town back in the 50’s when kids could do such a thing on a Saturday and they would shortcut through the tiny space between the buildings to get to the movie theater partly to sit in air conditioning.
If I had the money I would buy a space on Water Street and open a museum with exhibits that change out. This town needs a history museum. But, my very first exhibit would be “Water Street through time”. I’m always imagining “ghost images” of people who have inhabited it. What were they wearing, doing, hoping, riding in (or on), seeing?
I know my mom went to see Tarzan and went right home to jump out of a tree with a rope around her neck… now that was a story!!!
When we are driving down Water Street to the adult day care, he asks me several times (or a dozen…) if I am picking him up at 3:00. Yes. Yes. Yes. Don’t worry. That’s what I wrote on his yellow sticky note on the front of The Yellow Book he takes with him.
We made homemade tortillas and smoked up the kitchen in the process (the pan I think was too hot?) requiring that we open all the windows though there was not a breath of air in this Texas Hill Country post lots of rain evening.
To complete the eventful dinner time , my husband, who has dementia, built his own taco but he did it completely upside down. He put all of the ingredients in layers on his plate starting with the sour cream, the cheese, and the chunks of chicken and then topped it with a tortilla.
I just watched (more like an artist, less like a caregiver) to see what would happen next as he turned his plate upside down and it all fell off to the table, disgustingly. I could’ve helped him but he seemed determined.
He scraped it all off with the tortilla and ate it. I figured it was just a matter of a quick wipe up when he was done. I’ve seen worse being a mom of three.
But the chicken tacos with the fresh tortillas were just delicious.
And then we ate ice cream. And who could argue with that?
First of all, I’m considering making my own worksheets for the game of Clue. We ran out about six months ago and each time we play we write out all of the categories before we start playing. Yes, we have played it a lot over the years. And, he used to be the one to win. I’ve always been pretty bad at it. Now, my game is Scrabble!
But our daughter likes to play Clue. And, she still doesn’t mind inviting him to join us, though we figured out a way to play with just 2 players.
So, I have created – on my new IPAD Pro – a new Clue worksheet.
I first perused Etsy to see if anyone has made any. None. So, maybe I am the first?
I am going to print them and get them laminated so they can be reusable with Expo marker.
Dementia Clue Works!
We play dementia Clue which means we let him do whatever he wants. We let him have some of the cards and don’t make a big deal out of it if he says the card out loud. If you are familiar with the game, a player quietly shows their card to the person whose turn it is. It makes the game shorter which is good for playing with him. He gets joy from choosing to be for instance in the kitchen or the bedroom. We tell him he is the winner. Some of his playing and antics are funny but the last time we played I noticed I lost a bit of my game playing funny bone.
My husband’s Alzheimer’s and bvFTD dementia doesn’t keep him from reading, but it does keep him from understanding. He will pour over the morning paper. This morning, being Sunday, we are reading yesterday’s paper, with no complaint from him, since he cannot remember reading it yesterday. He maintains the posture and the seemingly interested voracious reader he once was when he would read encyclopedic books of world history… for fun.
His former self, smart guy, lawyer, he’d stay up late at night reading, reading… I used to put my knuckle in one ear and push my other hard into the pillow with the sheet over my head so I could block out the book light and sound of the pages swishing across the front of his chest.
So now he reads really just anything. He can still read out loud and you’d think he knew what he could comprehend because he can read it. Yesterday he was reading a local phone book that came in the mail. The pages he was reading was full of names and phone numbers. But, if you didn’t know what it was you might think it was a law book.
The “reading” keeps him mesmerized. He loves the pictures of little children and babies our local small town paper always highlights. He usually shows them to me with a sloppy grin on his face. In his previous life he wasn’t so interested in the sweet things. Pretty soon he will get up and ask me to help him turn his television on.
In the above image foreground sits my portable table easel and it speaks for itself.
Today I plan to launch my Patreon account where I will show my current paintings, poems, and short stories. Because in the midst of the dementia care, I art.
Caregiving Vignettes “Watering the Garden with Dementia”
I put homemade pumpkin muffins in the oven this morning.
Yes, it’s too early for Fall, but to me, after school starts at the end of August, all bets are off. Summer, go away. I have my warm pumpkin muffins and my pumpkin candle from Bath and Body. That makes it Fall here. Never mind that we are still having 96 degree days.
My husband asks if he can water the garden though I know he doesn’t really water it. It doesn’t matter, it gives him something to do. And, since I have been a horrible gardener – perhaps consciously killing off the whole entire thing – I let him go out there and give it a go. I think he’s kept the last tomato plant and peppers as well as the Rosemary alive by watering it a little. Mostly he walks around and waters wherever he’s standing in the grass.
I peeked out at him from the kitchen window where I was washing the breakfast dishes and I could hear the loud sound of the water on full blast. He had the spray up at the highest up over the fence, watering the live oak tree in the field behind our house.
The pumpkin muffins were good, warm and gooey just out of the oven.
The little blue clay owl I made is thinking about whether he ought to jump into the hole I drew. I used to make these little clay owls and for awhile I was interested in anamorphic art. So, I drew this little hole just to try it out. Faked that owl right out didn’t I?
Caregiving Vignettes “On our Toes”
Like the little owl, I sometimes am on edge. Maybe because I have to “stay on my toes”, alert, at the ready. That’s why it is good we can get some time off, the thing that in caregiving lingo they call “respite”.
Respite Care for him
We get respite care at our neighborhood adult day care center three times a week. Most of the attendees there are in their 80’s and 90’s. But, then there’s my husband who is just 70 years old. They play games, make seasonal crafts, sing songs (which is his favorite), and listen to music. He begins getting excited about going there but not necessarily in a nice way. It’s more in a keyed up way. And, when he’s there he’s keyed up about when I’m picking him up. So, He’s keyed up all the way there and then worn out and frustrated from having been there on the way home. But, it is respite for us. It means my daughter and I can get lunch out.
The Spa … for me?
Sometimes I think it would be nice to have him go to respite care and for me to go to the spa with massage hot tub and facial. I really ought to book myself such an adventure.
But, what I normally do is run around and do the errands I can’t do when I have him with me (and did I mention I cannot leave him home alone and neither can I leave him with our daughter). I enjoy grocery shopping by myself. I will spend an hour in the grocery store. It takes that long to be a smart shopper. But, possibly I just like it there. They play the best music and there are all those possibilities of me being a budding gourmet chef right in my own kitchen.
Then I come home and paint or right now fiddle with the Patreon account I am creating where I will upload videos of my creative process involved in my paintings. I like being at home with him gone. It seems so peaceful. Sometimes I almost forget to pick him up.
I count my blessings about the respite center and I tell that little shiny blue owl to step away from the edge. That hole might be deep.
I’m painting and my husband is reading the paper. He can still read. He will read out loud to me as I am painting which is good for me. I have gotten so used to his dementia. Only, with his dementia, he has no ability to know what he is reading. But he reads with feeling as I am in the middle of painting this imagined pathway that I have worked on off and on for awhile.
He has asked about five times what we are doing today. I just say, well, I’m painting and you are reading the paper. He’s ok with that. We have our morning rhythm.
The Pathway I’m on
Then, I walk down this pathway as I often do in my paintings. I love the experience of doing that and wonder if other artists do that too or am I just getting a little “teched”. While I am “in” the painting, I decide there have to be shadows along the white dusty road but I do like how it is reflecting the light from the after storm clouds and the clouds are wanting some smoothing. I love the feel and look in the just after the storm passed time. I want to put that feeling here.
I was given this high need to paint not too long after my husband was diagnosed with frontotemporal dementia. The desire to paint was a gift just at the right time which I know was sent by God.
Selling my paintings?
The painting of beach scenes and pathways soothes me and right now I don’t really care about selling them yet. I’m looking to make my paintings right in my own estimation.
I will be making my Patreon account public that I have been working on creating. I’ve been working on it each day. Patreon is a place for artists who share their art with patrons who support that artist. I intend to provide videos of myself painting and talking about my life and my painting process. And, eventually I plan to provide prints of my paintings for my patrons who support me. Right now, I’m trying to figure out how to do a good video. I want the videos to be artistic and enjoyable to watch.
The storm is passing
After I snapped the above picture of my painting before I added additional rocks and let the water spill over the front right rock formation. I often will put water in my paintings as if it has just collected in a place after a big storm has passed over. It is a peaceful feeling with sweetness in the air.
And, my husband folds up his paper, puts on his Bluetooth earphones, and says, “Now I exit stage left”.
Sometimes the caregiving goes haywire… but my kitchen coffee station (above) always stays cute!
Caregiving Vignettes – “The Art of Perfection”
Within minutes of posting my previous blog, where I explain how I found a nice little solution to a relatively minor problem with my husband, who has dementia, being unable to find the coffee creamer. And what happens next? It’s always something around here that will rise up and call me out. Call it, “the cream”.
After I literally push the “publish” button, and after I verbally walk him through, again, that the coffee creamer has a big red lid and is emblazoned with “coffee creamer” on the top… as if I totally know what I’m doing…
What does he do?
He pours JUST a big mug of the creamer and starts chugging it down.
Today is Monday, the beginning our our school week. I go against the grain of everyone I meet because I like Monday. I like Mondays, the beginning of school, and the beginning of a new year. I’m sure you have solved a not so difficult mystery about me here… I like new beginnings. What’s tough on me is there was no apparent begin to the dementia. It’s like dementia on my nice neat “perfect” life schedule is something that jumped in and the door closed with fire shooting in after it.
Today I have plans to take one of my beach scene or path scene paintings, not sure which one, and do those important final strokes… I say “strokes” – sometimes I end up painting completely over… anyhow, I will try to keep my cool… and sign each one. I was watching a YouTube painter who talked about how he finally gets done with a painting and then he signs it, the last time he touches the brush to the canvas.
Me, I’ve painted over my signature even. I will try to be less ruthless, but I cut myself a break because I do paint as therapy. So, if I do I will realize just how less expensive the paint is than an actual therapist. I have stacks and stacks of paintings. And, stacks.
In his dementia progression, he went from being able to help his clients as an attorney out of all kinds of life messes, and he went from being able to do household projects like build a window seat in our kitchen with hinges that open for storage, he went from being able to plan a road trip better than anyone, creating, no less, a binder of sites to see along the way and information about the area. If I were the one driving, he’d read it out loud to me as we drove along. He went from being able to care for me and the family. He would take my car to get gas for me. He’d always get up before anyone and put on the coffee. He’d cook steaks on the grill for the family. He’d do all the snow removal (we lived in a very snowy state at that time) while we all were inside in the warm house.
With dementia comes a progression of the inability to care for others, then the inability to care for oneself.
Now, he not only cannot do any of those things but but cannot even find the coffee creamer. It’s the little details that have to be adjusted, and adjusted for the need of the moment.
A pretty nice solution, I think: I wrote in nice black permanent marker on the top of the lid “Coffee Creamer”. (If the surface is sweaty after you pull it out of the nice cold fridge then make sure to wipe it dry first or the permanent marker will not adhere.)
I learned early on for my husband that labels attached to things helped him… and me. It saves us both frustration and time. I keep the coffee creamer in the refrigerator door and before I thought to label it, he would pull out the ketchup, the butter, the mayo, and call out each one. And, I would say, (while trying to get in my newspaper reading for the morning), it’s the one with the red lid… the one all the way to the right on the top shelf… but he’d be pulling out the things you don’t want to put in your coffee. Now, the angel on my shoulder had the idea of labeling it. The other shoulder had other ideas… like “let him try the Dijon mustard in his coffee… that might be interesting”. Good thing for him the good guys are winning.
I was so excited to see this morning how when I could see him pulling out the wrong thing I said, “The creamer is the one labeled on top…” and he grabbed it right away and said, “Oh, Coffee Mate.”
Other things I have labeled: The bathroom door. (At least once or twice a day he can’t find it). Previously in his decline I labeled other things but unless I am right there to help him sort it out it, this doesn’t work any longer. Now, the label on the coffee creamer and the label on the bathroom door help me… help him.
It keeps us all happy and I can read my morning paper.
Caregiving Vignettes: “How His Dementia Delusions Have Progressed Over Time”
The first signals of my husband’s dementia were a change in his personality. I didn’t know what was wrong with him. And, it wasn’t all the time. You know, it’s kinda like you take your car to the shop and tell the guy about the problem your car is having… only it is making that clunking sound… sometimes. Of course he will drive your car around the block and call you to report that it didn’t happen. That happened with my car a couple years ago and I told my dad about it. My car was actually cutting out and sometimes if came to a complete stop. I took him out driving with me to show him what it was doing and when the engine cut out completely and I had to restart it at a busy intersection my dad said calmly in his low gravely voice “Ok, now, let’s drive on down and take the first left.” He was giving me directions to drive right to the auto dealer to get me a new car.
Well, you can’t trade your husband in with intermittent behavioral symptoms though I am sure that there are many who want to because sometimes they seem temporarily intermittently insane.
Behavioral frontotemporal dementia (bvFTD), as opposed to the more common Alzheimer’s, doesn’t cause memory loss in the beginning. Through my research on dementia, I find that the bottom line if there is one is… different people experience the progression differently. I will try to briefly outline here the progress of his bvFTD from the beginning so that there can be something perhaps to compare to. There are so many areas of progression but I will begin with delusions. So, this blog post will be one of several covering the different areas of his life that have been effected by his dementia.
Progression over time of my husband’s delusions:
Delusions have been from the very beginning. In 2006, I thought the fears he was experiencing was because he was captivated by the tenor of the right wing news he had begun watching involving the presidential election. We couldn’t even discuss politics any more after that and I happened to be a registered independent yet with conservative views. Before that, he was a democrat. Not any more. He became a right winger. He went from liberal democrat to right wing conservative. He passed out at the office and was carried out on a stretcher shouting “Don’t let Obama kill me”. Everyone was gathered around and a little snicker went around. But, it made me mad. Of course I didn’t know he had a debilitating brain disease that was beginning to take hold of his personality and behavior. The passing out was because he drank too much alcohol and not enough water.
In 2014, when his delusions became more frequent and dominant, he still had the ability to go on his computer and his tablet and his cellular phone where he was researching electric bicycles. In 2015 when he had to give up driving, he developed a strong delusion that we were opening up an electric bicycle shop and had shipments in our garage. Having the delusions is one thing, but what they did to our family is another. He was on the lookout for the bicycle shipments, and thought I was withholding information from him. So he was angry at me about it and that led to him thinking I was against him.
He is more confused about reality now than delusional, athough yesterday he thought we had some GI’s that would be joining us for dinner. Is that delusional? I don’t know, I’m no expert. It’s weird stuff for sure that we deal with on a daily basis. My daughter answered him, “Oh, that’s so nice. Maybe you’d like to go rest up while you wait.” And, when he came in for dinner it was all forgotten. She’s homeschooling 11th grade and getting on the job dementia psychology training, I think. Well done.
In 2017 he began a confusion with memories of his time aboard the Forrestal, a ship during VietNam that caught fire. It was big. But my husband’s memories became larger than the already big catastrophe. He became more and more confused about his war service. He began wearing his father’s army war medals from WW2 on his shirt. I figured out it was best to take away all of the war memorabilia because it caused him so much continued suffering, especially that it caused him to repeat events that didn’t even happen to him. He stopped this dreadful memory pattern right away when I finally figured out this was happening.
Most of the delusions seem to be a result of actual problems in his life. I think he possibly invents the delusion to help him get through. The delusions, however, cause him greater anxiety and creates a difficult living atmosphere (to say the least).
I wrote a blog post on “The Yellow Book” that describes how it has been a helpful tool to us through many of these difficult times.
I was thinking recently that it’s good he has us to take care of him. What would happen to him otherwise? I wonder how many people with behavioral dementia just get thrown on the junk heap like a defunct automobile. I wonder how many of them are on the street, severely alcoholic. I wonder how many seem like they are mentally ill.
Can’t just trade ‘em in.
I was also thinking… always thinking!… that it’s good we have him to take care of. One day I will write about that. But, be looking for blog posts related to his dementia progression over the years.