Bringing a coloring book is my favorite way to visit my husband in assisted living. He doesn’t color too much in the books anymore but he sits and looks through them and seems to like that I’m coloring. There are upon occasion others who will come around interested as we sit at the dining room table so I will tear pages out and hand out colors and encourage them to join in. Pretty good and relaxing way to wile away assisted living visits, otherwise I just don’t know what to do. I see other spouses come visit and they just sit and hold hands. I either color or if it’s a nice day I suggest we walk on the sidewalk out back. He always says yes to that.
Today though the visit was strange. I was there at the table and he sat for a little while looking through the color book and then he got up to go watch television. Usually he wants to stay right with me.
The workers there asked if I’d help with the Christmas decorations, painting Christmas trees for each resident on construction paper which I of course enjoyed doing. When I left, the nurses were hanging greenery and lights. They decorate for each season, successfully creating a homey feel. My husband was engrossed in Gunsmoke, so I gladly slipped out.
My husband was cranky so when I mentioned his going to the adult day care he told me in a tone that I knew was going to be a “brick wall” conversation… that I needed to be the one to go.
Sometimes I run through phrases in my head that fortunately I don’t speak. All those years of my mom’s teaching me (and my big teenager mouth) to let those thoughts rattle around awhile before deciding to let them shoot out the chute… pays off time and again.
So I told him he’d maybe feel better if he lay down awhile. The sound of my voice was so soothing I surprised myself. Thanks mom! I know it was hard work raising me.
So today we stayed home and I made chicken flautas. Everyone’s favorite. Here’s the recipe. I don’t do exact amounts but I will try to here. I’ve been cooking these up for perhaps 20 years and the amounts don’t have to be exact. Trick is to use leftover chicken and soften the tortillas before you stuff them or they will crack.
I’ve had these in a restaurant… but always deep fried. Never like mine… so GOOD!
Julie’s Chicken Flautas
1 cup of cooked chicken, shredded or diced up small
1/2 cup grated cheddar cheese
1/2 can green chilis
1 tsp cumin
8 flour tortillas, warmed
Roll up cooked chicken, grated cheese, green chilies and cumin in each flour tortilla. Seal each one good and tight with a wooden toothpick. They resemble little flutes – where they get their name flautas, Spanish for flute. Brown then them in a little oil in a skillet. Serve over shredded lettuce and diced tomatoes and top with sour cream and salsa. They are a pretty presentation. Sometimes I sprinkle a little cheddar cheese on top to make them appear so extra tasty. Don’t forget to remove the wooden toothpick before serving.
So, I decided as I was serving the delicious meal that sometimes it is better to stay home and invite people over. I invited my parents, who I was intending to meet out for lunch, and asked them to bring cupcakes from our favorite cupcake shop: The Sweeter Side of Rails. We like the tuxedo and the peanut butter cup. That made it all the more sweet.
And after they left, I painted over the above painting which I had painted last year when I was doing clouds differently than I am doing now. And what did I do, of course you know if you’ve been reading my blog….
…but add a very wet reflecty muddy road that is in itself a weird kind of respite for me..
First off, the psychologist had at least 4″ high purple shag wall to wall carpeting in her office. I haven’t ever seen anything like it and I’m a child of the 70’s.
And her office was in an old building that didn’t have a “trust factor” for me.
As in the above painting of mine, clouds talk, and apparently, psychologists performing a psych eval do too. After the evaluation the psychologist gave her opinion that my husband probably wouldn’t get the disability because she didn’t think dementia is caused by PTSD and that he didn’t have any PTSD symptoms.
But the paperwork from the VA had said the psychologist evaluator only does the evaluation and won’t give an answer. I thought it a bit strange she’d give an opinion.
In my own reading on the matter I’ve learned that it does happen that a person can have a very stressful event happen such as my husband did in Vietnam that can cause dementia later in life.
Well, I am not worried about any of it. And I remind myself that I’m just carrying through on the application for disability that the VFW near us had helped my husband apply for a few years ago after he was no longer able to work, but had not as yet been diagnosed with dementia.
A little tiny bit of history on him case you were wondering…
He was a practicing attorney until 2012 when he wasn’t able any longer to concentrate or to properly function in his job.
Then in 2014 after he had been going to visit with the veterans at our local VFW, they helped him apply.
Then in 2015 he finally got a diagnosis of dementia.
Then… a few weeks ago (9/2018) I was looking for something in the file cabinet and I came across the PTSD disability application which he had filed. So I took it up to the VFW and they refiled it with the information they had said they were lacking. In about a week the psych eval had been ordered by the VA.
I don’t know how any of it will go. But that purple shag carpeting was very very strange. Just about as strange as clouds communicating.
Besides the sweet smell in Texas when “It’s fixin’ to rain”, one of my favorite things is puddles after a good rainstorm with reflections of a now bright sky. I love to put those last touches of bright red in the fresh puddle that make the road rise up.
I express this feel of a scene often in my paintings because it says “Look up, the torrent is over and it’s a brand new brightness.”
Being a caregiver has been a bit like that rainstorm. But, it has been helpful for me to find acceptance in who I am now. I don’t have a husband who is there for me to love and care for me. Instead I’m left with a man who sometimes packs up because it’s time for him to go home.
But “The position has been filled”… as was succinctly stated to the dog standing outside the door in Mary Poppins.
…Filled by the One who makes a storm, knows fully about the puddles, the colorful brightness, and how to fill my artist’s heart with joy.
“Every Little Thing’s Gonna Be Owlright” is a canvas bag I painted. Such a cutie!!
Dementia is progressive. It does not get better. There is no cure. And we who care for someone with dementia are at risk ourselves due to the ongoing stress of it all.
That brings me to a question I saw posed online, I think it was a writing prompt.
Wife, or Caregiver?
I think the question could be expanded to…
Husband, or Caregiver,
Daughter, Son, Granddaughter… or caregiver... and on and on.
I will speak to the spouse/caregiver because it is what I know and live.
An answer to the question is found where the lines got blurred between my husband as spouse and me as fully caregiver.
I am so glad to be able to share this information because I believe it is so helpful for the mental health of the caregiver. And, for those of you who read my blog, you know I am an artist so forgive me, a non scientist, as I get “all scientific” with my seven stages…
First I ought to say… My considering myself to be a caregiver and no longer a wife happened incrementally over the course of several years. Here are the stages we have been and are still going through:
The seven stages of my becoming a caregiver.
Stage Zero: (All spouses take care of each other throughout their marriage – sometimes one spouse needs more care… and it can’t ever be seen as equal as the spousal role is to love the other – so this stage is a reminder of that…)
Stage One. Unnoticible to those outside the husband/wife relationship: husband has small changes in his personality, husband apologizes, difficult time is covered over by husband/wife relationship. (+/- 1 years)
Stage Two. Wife confronts husband on his now more apparent personal changes, gets angry pushback. The relationship suffers. (+/- 1 years)
Stage Three. Husband is unable to concentrate on work and otherwise is acting in outlandish and inappropriate ways in his business, but, thankfully, wife is able to talk him into retiring. Still, he is able to hold a conversation, be excited about politics, and he still reads. He still drives. The family still plays games together and he can fully participate. Wife is able to talk her husband into retiring and moving out of state. (+/- 1 years)
Stage Four. Husband is acting in inappropriate ways socially and wife talks him into letting her come along to his next doctor’s appointment where he is diagnosed with mild cognitive impairment. Husband no longer reads yet spends all of his waking hours watching cable news. (+/- 1 years)
Stage Five. Husband gets confused with bill paying and has trouble concentrating, begins to have problems working his television. Wife takes over all finances. (+/- 1 year)
Stage Six. Wife has husband evaluated for driving the automobile. He loses his license. Husband begins believing he is running a business and also begins thinking “he needs to go home” and will pack his bags. Wife sees that the business ideas are being stoked by his constant web surfing so wife takes away all electronic devices. Wife is able to verbally talk him out of leaving. Husband is unable to stay home alone. (+/- 6 months)
Stage Seven. Wife has now crossed over into full caregiver because husband has become incapable of understanding most things. Wife is able to manage his television viewing habits so as to have him watch for the most part, good movies and reruns of shows like I Love Lucy. Husband is now completely unable to play a family game. Husband has times of psychotic type behavior where he, in agitation, tries to escape. Will walk down the street and not want to come back. Wife has needed to call the police to come help with this problem. Husband does not wash himself even if he is in the shower and will put on the same dirty clothes afterward. Husband sleeps in his clothing. Husband cannot at times find the bathroom though there is a label on the door. Cannot find where his bedroom is. Husband will want to eat though he just ate a full meal. (3 years… and counting).
So, for me it was not wife OR caregiver. It is wife has BECOME caregiver.
It is not just a war of words, though. Tomorrow I plan to discuss how defining myself as caregiver has helped me.
Is every little thing gonna be owlright? What do you think?
Me… and my ideas… and showing off my haircut. FYI in case anyone out there wonders… My hair went totally white and so I just… go with it. And now on to…
Respite Care Reform
Please read yesterday’s post where I describe respite care.
(Don’t get me wrong… I love the place and the people where I take my husband). But if I were asked…
I have been taking my husband to adult day care for a couple of years now, and I have some ideas for improvement…
What if there was/were
curb service drop in/pick up so that the person using a walker would not ever have to walk across a parking lot and the caregiver would not need to get out of the car. My husband is physically able but I see many that are not.
a full service salon for haircut and nails during the times they are in care? It isn’t easy for caregivers to do this.
beds for nap time because having a rested person to pick up would be nice. For my husband the respite care is busy busy. Too busy.
daily, all day care for working people. Maybe employers would allow their employees a little allowance to assist with the expense of this. Or, maybe there could be some tax remedy to allow people to afford it. Our day care is five hours, three times a week which I am thankful for but it doesn’t allow me enough time to work.
a calm schedule with activities for people who want to participate and movies or television for those who like to sit and watch. It would be nice to keep the person from being worn out from the day.
Sometimes we people who give care forget about our own needs, independent from the ones who depend solely on our energy, our kindness, our patience. Respite allows us to recharge those finite resources. If you aren’t already seeking respite… go out there and find it.
”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.
A “Navy Brat”, I spent my childhood at the beach. I think it’s why I’m magnetically drawn to paint it now.
I race through cleaning up the breakfast mess and make sure my husband has plenty of coffee and “reading” material because I’ve got an ocean scene calling my artist’s imagination. Have I mentioned I’ve painted stacks of paintings, many of them ocean scenes. Not all good. Some ok. All still in a learning stage for me.
As I paint, my husband and I usually chat about what he’s looking at in the paper. He thinks he knows the people in the pictures, he’s been in business with them, his mind is delusionally entertwined with them. Mostly I say “Oh, is that right,” and “Wow I didn’t know that”, faking a tone to allow him to continue there. I know he just likes the talking and the time.
I put a live ocean scene on YouTube loud enough so I can feel like I’m there and so I can study the light hitting all the places light hits, glowing, refracting, being deflected and diffused, causing shadows.
Sometimes when I paint, I wax a little poetic… I didn’t want to title this one because it would mess up the tip of the wave… so it is
and a dance.
in lacy edge dress,
seagulls squawk soprano,
starkly accompanying the sea.
And there am I, a party to the scene,
only in my mind through the power of TV.
~ Julie Robinson
As all of this “excitement” is raging, my husband gets up to return to his second love, Turner Classic Movies. First he looks at my painting and says, as always, “Another ocean”. I try not to be deflated by the flat dementia tone that I know he has entirely no control over.
And he leaves me at my painting to go watch Turner Classic Movies.
Sometimes I write stories or poetry to go with my paintings. I’m absolutely taken in by the subject matter and get absorbed in my paintings. The picture I took of this one in my Pathways series is a little dark… but I decided to leave it that way because I thought it a mysterious path.
The writing/painting combo keeps away the dangerous caregiver stress. (See my previous post.)
The High Cost of Dementia Care: The Process of Applying for Veteran’s Disability Benefits Part 1 of (Many?)
For “memory care” in our area the price tag is about $4,500.00 per month.
So, I am having to start thinking about how I’m going to be able to pay for the care my husband will be needing.
As I am finishing up this post, he walked out the door and I went to get him. He said he was planning to visit people. Good thing he was good about getting in the car. He isn’t always. It helped that our daughter ran down the street after him and I think I unnerved him with a big flirty smile “Hey, wanna ride?” Side note: a smile wins!
Being a Vietnam veteran, my husband began applying for disability after he began meeting with the veterans at our local VFW several years ago. It was before he was diagnosed with dementia.
So, he applied for it but because he was already mentally unable, he did not follow through with the complicated process. I didn’t know what he was up to with all of it, he was busy busy with many things.
He was still driving. He’d drive himself to the courthouse and ask to talk to the judges. He was a retired lawyer, so he was used to being able to do such things. You know, he even got himself appointed to the town council. (I had to help him get out of that gracefully). If you didn’t know him well or didn’t spend too much time with him you’d perhaps think he was ok at that time.
After I finally took over the management of our family’s finances, I gathered up all his messy papers he had crammed in a cabinet and because they looked too important to toss I put them in a file.
I pulled it all out last week when I was looking for something else. It was an application for disability.
We resubmitted the old application paperwork even though it was on an old form. The very kind man at our local VFW helping me said that he thought they might want to have it on the newer form but thought he’d give it a try.
While I was in there in my hour long meeting with the man, a line of veterans had been forming outside the door. One of them wished me “good luck” which I kinda think means it’s not going to be easy.
I was given a greater understanding of some of the magnitude of the Vietnam war after researching the disability application process. I found a very very … very long lists of our ships that were in Vietnam. And my husband was on one of them.
It is both humbling and surreal that I am following this process through that he had begun.
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.
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.
Caregiving Vignettes:“The Yellow Book” – Part 2 of 2
In my last post on “The Yellow Book” I describe how we used it in the times of my husband’s delusions.
While we no longer refer to the book to counteract delusions now because his delusions are different and I am able to (mostly) handle him by a look, a smile, a redirect, or a couple cookies. He will put both hands out for cookies and want two in each hand.
And “The Yellow Book” has changed from being relevant to him and something he wants to study for information about his life.At this point it no longer makes sense to him though he still tries to study it. What “The Yellow Book” has become is a security.
He has invested so many hours in looking at it.
We have spent time with him adding to it until it is now all full,
We have spent countless time deeply discussing its contents,
He brings to adult day care three days a week,
I ended up tearing out some pages of it that were too confusing to him.
If you were to begin “The Yellow Book” with your bvFTD person, I suggest you just use it as needed for what you are going through.Don’t feel that it has to be perfect. Just start using it and filling in the pages. I let my husband write a story in it. My daughter also spent time with him and wrote him a story. He liked cutting pictures that appealed to him from the morning newspaper and taping them in. The plastic cover is all rumpled now and soon I feel we will be retiring it because it will have lost its use.
Be a less stressed caregiver … learn to go with the flow. (When possible!)
I am always comparing caregiving to motherhood because there are so many similarities… i.e. every little child puts out both hands for cookies.
But an important difference: the goal. The goal is not to teach him but to have a peaceful home for all so if he wants four cookies and it might ruin his appetite and if he is very insistent then he gets the four cookies. The child, however, is growing in all ways. They need to learn patience so waiting for dinner is necessary so they eat their dinner well but also so they can learn to wait. At the end of raising a child you have a fully formed person ready to take on the world.
At the end of dementia is… the end. Keeping it real is important.
There’s enough delusion in dementia, it needs no participation from me.
He just came to ask me to take a look at something in his room that is overheating. That doesn’t concern me much because I know that he gets his language mixed up. It probably has something to do with his television because most things do. So, off I go to the art of caregiving.
When I am not caregiving I am exploring and pushing the limits on art. I took a picture of some flowers with my new IPAD Pro and then I played with the photo editor until I learned how to art with the Apple Pen. Don’t you think the Love looks like it’s all lit up? Truly it was just layer on layer of playing with the pen in different modes, marker, highlighter, pencil. The coolest part is placing the pen on its side and sketching with the pencil. It’s so much like a real pencil. But, better in some ways. In other ways, not.
Caregiving Vignettes: “The Yellow Book” Part 1 of 2
I’m excited that I have a place to share not only my artistic endeavors, but also the things our family has experienced in the years of dealing with my husband’s early onset dementia. I am most excited to talk about
“The Yellow Book”
that I made for my husband about 2 years ago. I will have to simply begin to lay out the topic here because it is much too big to talk about in one post. It is possibly the most instrumentally effective tool I have used for my husband’s behavior issues in his frontotemporal dementia.
I will do a question and answer here to explain what the yellow book is.
What is the yellow book actually (physically)?
It is a Mead composition notebook purchased from the office supply store. We had bought it with school supplies for my daughter. They sometimes come with plastic cover. That’s the type we have.
2. What have we used the yellow book for? Changing His Delusional Subject
Sometimes he gets stuck in some bad delusional thinking. That was worse earlier on, years ago. I can’t believe that we’ve been able to hang on this long! But, in some ways it is easier now that we know what we are doing (in a way).
The delusion at the time of beginning “The Yellow Book” was getting a job. The problem was it stirred him up, he would scour the paper for a job and think he needed to apply to them and wanted me to drive him around to find a job. He thought he would drive himself… he thought he would walk out the door and practice self help when he thought I wasn’t helpful enough on the subject.
I pulled the yellow Mead notebook out of my daughter’s school supply cabinet and sat down at the table with him and pretended to interview him. I made an important looking detailed list that he liked very much. He liked the attention to detail on the subject. The facts were simple:
that he is retired,
that he was glad to be retired.
2. What other matters have been handled by “The Yellow Book”?
I will describe some of these in detail in another post but will outline them here:
A contract that he will be nice to the lady at the adult day care. He had problems with the worker there when he first started going to the adult day care
a contract where he promised to eat the lunch while he was at the adult day care so that they could pull it out while he was there refusing to eat to see that he had signed it and I had signed it.
information about his past accomplishments
his family tree
scripture verses for comfort
pictures of family taped in throughout the book. His favorite is the babies.
information about where we are located in the world
Througout the book I have asked him to sign the page so that he would feel it was official. I thought that would be important because he was an attorney.
We reviewed the book often regarding the employment matter. And we would talk in an official way with serious voices about it: like, “Hmmm, looks like it really is official.” And shrug, .. “that’s that.” And he would answer: “Well, okay, it is official.” (Sometimes later on I think of myself doing that… playing that official part… and I smile.
3. What do we use the book for today?
He likes to review it but does not any longer understand what any of it really means. But, it seems to him that it does. He is presently sitting across from me as I type away at this blog… and is pouring over the book with a paper and a pen jotting down “notes” that make no sense to anyone but him in the moment. If you did not know him you would think he was studying for a difficult exam.
Maybe he is.
At this point he is further along the decline of bvFTD and so I have had to reassess the things I do to help him. He now uses “The Yellow Book” as a security. He likes to look at the pictures in it. He usually remembers to bring it when it’s time to walk out the door to the adult care. The most important part to him now is the baby pictures and the yellow sticky note on its cover where I wrote that I will pick him up at 3:00 pm.
I will talk more about today’s use of “The Yellow Book” in my part 2 post of “The Yellow Book”.
Thought: “It is always TODAY because yesterday is gone and tomorrow’s never here.” So, it is today where we live.
There is a pattern of behavior I have noticed in my husband where it comes to his temperament change. I call this “escalations” from his usual difficult behaviors such as looking to eat every ten minutes or talking about walking out. My usual way is to redirect him. And usually it works. But when he escalates it’s very difficult to impossible for me to get him redirected. I think redirecting might need to be defined here. How I redirect is to change the subject with a smile and talk about something else. I even will suggest that going out may be a good idea for later but that he really needs a shower first. Or I get us some water bottles and suggest he sit with me at the kitchen table. Or, lastly, I will give him a job which helps but isn’t always helpful such as with the incident of the bag of trash.
Often in our marriage he would be the one to be in charge of trash and until recently he would see me carrying a bag of trash and he would take it from me out to the large bin outside. But he couldn’t any longer find the outside trash bin and so he put it in my car. And it sat in the hot car in the garage for a couple of days. It smelled like a dumpster.
The list is short of the things I now suggest he do.
On the escalations, Sometimes he is impossible. Recently I had to call the police to come because he walked out the door and I had to pick him up in the car and bring him home and all the while he was still in the escalated state saying he was here now but that he would be leaving. There is absolutely no reasoning with him which was what the very nice police officer tried to do. It happened to be over a hundred degrees that day so she tried to reason that point. I didn’t school her on this but there is no reasoning with him.
He was beginning to escalate tonight and so I just simply asked him if he wouldn’t mind going to his room and so he did. And he fell asleep.
(Above) The frog is my sponge holder and the kitty is my spoon rest. I was just about done doing the dishes and I notice just how it appeared that the frog was looking big eyed at the bathing kitty. So of course I snapped the picture, sudsy hands and all.
…and now to..
Caregiving Vignettes “Something Stinks”
Getting to the bottom of what stinks in a person’s bedroom is something I don’t want to be good at until I need to do it. Mike came out of his room stinking last night so much so that I asked him to take a shower and get all new clothes on. Easier said than done!
Before each shower I’ve been having to go over the importance washing well and the most important part: with soap. I could hear myself having said the same words to each of my three children as I am standing there reminding him where the shower is and where the soap sits. And, I flashback to having to send the teenagers back to do it again when the first time didn’t work. They were mystified how I knew they didn’t use soap. Then as they reach a certain teen age you can’t impress enough that there is a water shortage.
He always comes to show me that he is all clean. The shower seemed to work and had tired him out so I suggested, although it was only 6 PM, that he get in bed and we’d see him tomorrow.
This morning I realized that whatever was stinkin’ was something that was rotten and or dead. And it was located in his room.I did a search but couldn’t readily find anything so I loaded up a laundry basket with a trash bag, a bucket of sudsy warm water, some rags and some rubber gloves so that I could do a 360 degree quick cleaning. Loading up with trash and dirty socks, dirty underwear in his beside drawer and fleshing out all the dirty laundry he had rehung in his closet and towels and blankets he had carefully hung up on clothes hangers. I didn’t trust anything if it didn’t look pristine and I warily sniffed stuff to see what it could possibly be.
Has anyone invented a stink detector/locator? Maybe it could run off an app and pinpoint just where the odorant originates. Maybe nothing as good as a mom nose.
I carefully checked pockets of his clothing thinking there must be something there, under the bed and last, the bathroom. I scrubbed the tub and the sink and the toilet, the floor.
But it was almost the last place I looked – a plastic bag full of something I will never know what because I just wanted to dispose of the grossness. He had carefully placed it under his toothbrush and toothpaste right next to his sink. That was the source of the smell. I kind of wondered if he had brushed his teeth with it? But I didn’t really need to imagine much more because the problem is now solved.
It was helpful that several months ago I simplified his bedroom, closet, and bathroom … not to make him our family’s first minimalist … but so he would have less to confuse him, and less for me to have to sort through.
The “buzzer” which is a little tune that plays on our new dryer just melodically sounded his last laundry load. Things are now sweet smelling.
Caregiving is an art, a career, a science. Don’t you think?
What is the change to my blog, you may wonder right away if you have been here before and were thinking you might view my art.
First I should let my readers know that I have posted my art to this blog in the past so I could share my paintings and clay creations so if you scroll down through my past blogs you will see my art. I will still be posting my finished and unfinished works here.
But, I will also now be sharing “Vignettes” of my life as caregiver, mother, and homeschool mother as well as my paintings.
This is the first in my series of what I am titling Caregiving Vignettes which I think shows what caregiving is like on a “day in the life” basis. I plan to also do other vignettes for other topics I will cover but I best stick to one thing at a time!
Maybe I should preface this first vignette with the setting. We are in our sixth year of caregiving for my husband who suffers from early behavioral frontotemporal dementia as well as Alzheimer’s. He is now 70 years old and was once a licensed attorney. Our daughter who helps me care for him is now 16 and is homeschooling her Junior year of high school starting this Monday.
… so here it is… my first Caregiving Vignette!
Caregiving Vignettes: “Second Breakfast”
The kitchen table… breakfast time.
I am distracted from an interesting local newspaper story about the history of our town by Mike, my husband, walking in and sitting down ready for breakfast though he ate only fifteen minutes earlier. For me it’s kinda like a scene from Groundhog Day where Bill Murray has to get up every day and live the same day until he gets it right.
I get him a second cup of coffee which he swigs down like a sailor with a beer. How does that NOT burn his throat? Then he reads theheadlines of the paper he previously read as if he had never seen it before. He wears a T-shirt under his shirt and a flannel shirt over that. It’s 92 degrees out already in South Texas but we aren’t going anywhere so I don’t tell him he’s overdressed. His hair is combed, slicked over with water nearly the same as he has always done. “Are you ready to go home” he asks. I tell him no. (We are home).
I’ve learned not to get into a conversation about things he is confused about. Those conversations that go nowhere. I have also learned to just smile and say that he doesn’t have to worry about it and I’ve got it all figured out. He really likes that. He gets up and pushes in his chair and says something about leaving these scoops which I think refers to the empty coffee cups on the table and says as he is returning to his room: “as they say, leave my lones” he says out of context. It’s a family quote baby speak from our daughter who is the baby of the family.
Alone at last, I push the leisure newspaper reading aside and decide I’d better get a shower so I lock his door. I have figured out how to shower and dress in 15 minutes because with full time caregiving I’m always on call. Why the lock on his door? Because he needs constant supervision.
I enjoy learning how to do things efficiently and the 15 minutes I give myself this morning is a rush of a personal care regimen that I can take over an hour to do if I have that long. Although, at the end I don’t look all that much different. And, these days I am not near as picky about how I look.
I hope you enjoyed my first Caregiving Vignette. I will be back for more, so come see.