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”.
Isn’t it what anyone wants to know who has been stricken with a debilitating disease? One with no hope for a cure? One with no drugs that actually work? I use the word “stricken”, not to overstate, and not to overdramatize. The actual meaning is to be seriously affected by an undesirable condition or unpleasant feeling. I think we were all stricken by my husband’s dementia.
His neurologist could not answer the question. “There’s no way to tell, actually, because it is different for each person.” I could tell she liked neither the question nor giving the answer. I felt bad for asking.
Is there an answer?
There is a progression.
Well there are what’s called “stages”. Some experts use the three stages to describe a demented patient – basically giving the illness a beginning, middle, and an end. Then there is the seven stage model with what to expect at each and about how long each stage lasts. But, with the caveat that the person might exhibit them in a different order or a different timeframe. I won’t list those different stage models. But you can take a quick google on the matter. It’s super easy to find.
I am no scientist but I can observe and compare like a scientist. Surely, I can observe and compare like an artist. Possibly there is an answer to that difficult question. Everyone caring for a person with dementia has a story to tell and if we talk about what we are going through, like I am here, perhaps there are some comparisons to be drawn and some answers.
My husband first showed symptoms (though I didn’t know what it was!) of bvFTD (behavioral variant frontotemporal dementia in his late 50’s. He’s now nearly 71.
I will tell, in very very short, the very beginning of his story and then in other blog posts I will add to it because it is just way too much information.
My husband was the senior partner in his law firm. He began slowly having a change in his personality. No memory problems. No other problems. He just was not the same person anymore. He was making uncharacteristic decisions. Only I noticed it, but then, I am his wife. But, it was nearly a decade from when I first began to notice the few subtle changes before his actual diagnosis of bvFTD.
Why? Why do I want to share this? It’s because this very personal information that I have held so closely for so long is exactly what I was searching for.
The answer is, it’s in the story. We are still living it, so I will tell it as it goes.
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.
The above painting is in my pathways collection where I explore visually the idea of continuing by faith on a path. Here I imagine that this person has been driving for some time and it’s the end of the day when the golden hour of sunlight spills into the scene as it does each evening at the golden hour, filling all it touches.
Caregiving Vignette: “Respite on The Weary Road”
Sometimes the road is weary. What do you do when you are a passenger in a car and feel motion sickness? The road winds and you do too. When I was about seven I packed my colorbook and crayons for a cross country road trip, imagining coloring up an entire book, but I probably made it through one page when I learned the definition of “carsick”. If I think about it now I can remember the smell of crayola mixed with stationwagon seat vinyl and then the smell of melted crayons because I put them on top of my suitcase in the sunshine. For years after I had a red Samsonite hard-sided suitcase with lovely melted crayons imprinted.
After I already feel that initial quease set in there is no relief possible by looking forward at the horizon which is the suggested fix. There’s nothing better than being able to get out of the car. Nothing stops the feeling of great unease after it has begun welling. Nothing but the car stopping. I’d try with my seven year old self to look so hard up ahead and keep my gaze fixed but it just didn’t work for me.
Taking breaks along the way helps and it helps for the road of caregiving dementia.
They call a caregiver break “respite care” in caregiver lingo.
A quick dictionary search defines respite as a short period of rest or relief from something difficult or unpleasant.
We have a place in our town that that gives respite. It’s called “The Take 5 Club” where I take my husband three times a week giving me a five hour break. It is $35.00 per day. The alternative is to have a home care service which is $20 an hour with a for a four hour minimum. What I like about the home caregiver is they clean while they are here. But it’s $80.00 and I feel forced out of the house. And, sometimes I just want to be at home without him here. I am needing a longer respite and am checking into that now. My next post will be the results of my research.
(Above) I am still playing around with my new IPad Pro over an acrylic painting from a couple years back. I have struggled so much with flowers but keep coming back to them. Maybe because I like flowers? I especially had fun with the side of the pencil on the vase.
Caregiving Vignettes: “Earphones for Dementia”
In today’s writing I want to talk about the bluetooth earphones we got my husband for his television. They help bring peace to our home where we are not only caregiving dementia. My daughter is homeschooling 11th grade as well and I am keeping everyone on task (ish).
“WE NEED A LITTLE PIECE OF QUIET”
The littlest member of the family with ten years between her older siblings, I’m sure my daughter, when she first coined this enduring and endearing family phrase, was most likely at a loss for how to deal with the blaring Fox News her dad then listened to, and her teenager siblings with their music.
It’s a dozen years since then and he likes his TV louder than ever, though we tamed his viewing to Turner Classic Movies. The earphones are a solution for all of us. Isn’t it nice when a solution that works… works for all involved. That’s how I know it is right. He doesn’t just sit and watch TV with them on. He comes in to sit with me with them on and even has worn them to dinner. A little giggle is elicited at the sight of him eating dinner. I think he keeps them on and walks wearing Them because he enjoys the security of how they feel (maybe?). It doesn’t matter. They provide the peace we all need.
As I have tried to write this he has not been able to wear his earphones because they are charging. He’s been busy and needy while I’ve been trying to write. He’s been taking the clothes off of his hangers and coming to show me each one, and talking about each piece one at at time, searching for his electric razor which I finally found for him in his television cabinet. And while I was looking for it I found a cut electrical cord he stored in a bathroom drawer… not sure what that was from… and of course he doesn’t remember. I tried to get him to sit with me and read while I was doing a final edit, he couldnt find his glasses which is nothing new. In order to keep him busy a little longer so I could finish up, I sent him looking for the glasses and instead he brought me dirty clothes from his room and now he wants his comb. He can’t find his comb. I suggest he check his pocket. Bingo. And he also found the note I wrote him in his pocket that says we are leaving in twenty minutes. So, it’s time for me to find an end here… for today…
Moral of the story, keep the earphones charged for peace.
The earphones work for 40 hours. If I were doing it right I’d charge them each night.
The painting above is one in a series where I was exploring artistically the idea of paths, and in each painting I was reflecting on the two paths in Matthew 7 that Jesus describes.
I like to paint a path that goes around a bend and you have no idea how difficult that path may be but there is a glimpse of color in the sky if you look up. A sunset usually appears in my paintings even if I start out with a nice blue sky with perfect fluffy clouds. Invariably, I paint over it. I do the same with placid ocean scenes as find myself painting, in the end, a stormy scene with crashing waves against rocks. Drama. But it does seem peaceful and cathartic to me for some reason. Sometimes when I paint, I imagine myself there in the painting, looking around, experiencing it. Weird, or funny? Once I wrote a child’s book and sent to my grandson of how I climbed into a path scene painting and at the end of the path I could see the ocean where I picked up a shell off the beach and brought it back to show him. So I gave him the book with some shells to make it seem like the story might be real.
I feel that being a caregiver is like being on that rocky and dimly lit path that has a beautiful colorful hopeful sky so I look up and keep my faith and hope for a beautiful beach.
Caregiving Vignette: “Refined”
My mother has taught me to first simplify, then refine.
This works in every area of life. I sometimes get lost in the details and it keeps me from getting the job done.
At home, “everything has a place” goes with the simplify and refine. What’s the most disorganized place in a home? Maybe the junk drawer. First, get a few plastic grocery bags and sort the contents to:
(1) things that go in the garage. I’m guilty of putting all kinds of things in the kitchen junk drawer because I don’t feel like going into the garage to put things away.
(2) things that go into the bedroom, and
(3) things that go in another place in the kitchen, and then of course
(4) things to throw out.
Isn’t it true that junk drawers basically are filled with those things?
Don’t think I’m a neat freak, just a semi-reformed messie.
In the workplace, for those who still file actual paper… If you are filing a stack of papers into a filing cabinet, first sort them alphabetically then when you go to file you file quickly. Simplify, then refine. I use this principle when folding towels. First I separate hand towels, face rags, and bath towels. Then the folding goes quickly. Another example is groceries: first put them all out on the table or counter in groups, pantry, spices, refrigerator, other, then put them away. If you got a good bagger at the grocery store that helps.
It’s a good thing I got a little better at simplifying and refining because add a husband with dementia to a wife who’s a messie and you get disaster.
Since my husband cannot put his things away, his room gets messy with interesting things he puts in his drawers, food, dirty clothes, books, trash. I said before in a previous post that I made him a minimalist.
Now, I am not at all a minimalist. I like my cozy cottage feel that is a little arty/cluttered. But his room is different. He gets confused about his clothes. He never can find his electric razor though I keep it plugged into the bathroom socket. He keeps putting it in funny places. His closet, which is a very large walk in closet that I used for storage of many different things, now has been very minimalized. He has only a few pair of khaki pants, a few shirts and T-shirts, and on the wall I have a shoe holder where I slide in his underwear and socks. That way everything has, at a quick glance, a visual place. That actually helps me because now I need to help him more than ever. He at one time was able to find his clothes to change into. But now we have to go in and get his clothes out for him. And, if I do not stand outside of his door and say, “Ok, now, take off your shirt and hand it to me”, and when he does, I hand him a new shirt, he will just put his same shirt back on after his shower. Same with all his other clothes. This is our method to keep him from wearing the same dirty clothes every day. If I don’t do this he will sleep in them every night.