April 2023 Theme Reveal

I’ve missed the deadline for the official April Blogging Challenge theme reveal but the wonderful thing is, this is my blog and I can write what I want, official or not. Hahaha…

I have about a week to decide if I want to add the stress of a blogging challenge to my caregiving life. For years I’ve used this April A to Z Challenge as a way to inspire and stir up my will to write and share my writing. It’s a lot of work to write something worthwhile for 26 posts in one month. Having a theme sometimes makes it easier and I’ve been hunting for a theme.

How hard would it be to work on my ability to introduce interesting characters to readers? My thought is that I would start with 26 of the interesting people I’ve known, change their names of course, and add a few disguising details. I would end up with a fictional character based on reality. I’m not going to write a book so there will be no plot, yet. These would be character sketches.

The more I read, the more obvious it is to me that developing a believable character that readers like and identify with, or at least find intriguing, is vital to a good story. I don’t know if I’m good at that, but I would like to be. My favorite type of reading material is historical fiction. I want to learn while I’m reading but I need a plot to follow, some excitement, some wonder, problems, questions to be answered. All that requires people. I’ve already chosen my people.

And the reason I’m writing about it in advance is, well… you might think you’re one of the people. You might recognize yourself or someone you know, even though the characteristics don’t exactly match. If that should happen, remember it’s not you. It’s a fictional character and the parts you don’t like about him or her, well, those are the parts I made up. You are perfectly wonderful, as am I, wonderful and probably boring.

And even though I am making a plan, April may come and go without the plan being realized. But I do like the idea, just sayin’…

Reflections on the Death of an Unusual Friend

I was sitting by myself, in a Cracker Barrel restaurant, on Thanksgiving. My favorite family holiday was anything but that in 2011. I was having dinner and writing my first post on this blog. I was in Atlanta, on the job as a private duty nurse for my client who was a quadriplegic. It was the most miserable job I had ever taken, and writing out my misery was comforting.

Scottie was an unforgettable client. She had a diving accident in her early 20’s that ended her career as a flight attendant and changed her life drastically. In fact it changed many lives, because she went through the years having a marked effect upon her family and all her caregivers and friends. Being so vulnerable and helpless was not easy for Mary Scott Stoddard, or Scottie, as we all called her.

I found Scottie’s ad on Craig’s List of all places. I was needing a job to help my daughter Julia through veterinary school and was having trouble finding one. Even though I’d taken a refresher course, the hospital had passed me over and hired new grads instead of older nurses, like me. I was pretty desperate to get something so I went to the interview even though the salary was low, even though she was really wanting an LPN, even though I would have to drive out to Longboat Key to work.

It turned out that she was glad to hire me. She was in the habit of losing nurses, about one a month, and had gone through lots of them. Word was out there about how difficult an employer she was. The nurse who oriented me was an LPN, working on her BSN, and she hardly ever got a day off and even did some nights because there was no one else. It was a pattern I came to expect over the next six years as I became the senior employee who oriented new people.

I could go on at length about what made Scottie a difficult employer, and I did do a lot of venting in my writing. But I have since spent more time being grateful for the unique experience I had in her employ. Where else would my job description have included trapping raccoons, taking carriage driving lessons, and traveling to Nova Scotia? Our many trips to Atlanta and north Georgia were filled with interesting stops and people. We spent time at Bluegrass festivals and the North Georgia fair. We stopped for fresh peaches in the early summer and apples in the fall. She loved music, so we went to concerts. She loved the inter coastal waterway so we went out in her pontoon boat. She shared her Longboat Key cottage with me when I had family come to visit.

Scottie and I had adventures. Getting a quadriplegic with tons of luggage, two wheelchairs and a Hoyer lift on a commercial airline flight was uniquely stressful. Stopping the van on the side of the road to handle a medical emergency with her was uniquely stressful. Spending nights during hurricanes in her home, with water lapping the floorboards beneath my bed was uniquely stressful. The adrenalin rush of unique stress is about the same as the rush during excitement, and the years have blurred the line. I now think of those times as having been exciting.

I think Scottie got used to me praying for her, especially during those times of crisis when we didn’t know what to do. She even began to ask for it, and to do her own praying. And I think she would say that we got a lot of our prayers answered. Scottie died a couple of weeks ago, at her home, on a ventilator, feeding tube and IV’s. I’m sure it wasn’t an easy ending but she was ready to stop suffering.

Today, I know that the difficult years with Scottie provided me with two things. They gave me income to help a daughter through veterinary school, which was the goal at the time. But they also prepared me for the present time with my husband. I would not have had the experience and the confidence to bring him home, had it not been for the things I learned caring for Scottie. His physical care is almost the same as hers was. I could not have foreseen that part, but I believe that God knew and was even then putting things in place to help us through this difficult time.

Thank you God. And thank you Scottie. May you rest in God’s peace.

A Little Confusion

Lately I have had reason to visit some old blog posts and update them. Don’t be confused! I have not just been to Seattle. I haven’t been neglecting my vitamins. Those posts were from 2011.

WordPress has also made a big change and I am not seeing the same posting activity that you are seeing. I didn’t know those posts appeared again as if I had just written them.

I’ll get it figured out in time. I’ve enjoyed reading about my past though, and maybe you will too. I will try to identify the old ones so you know what you’re reading. Just sayin’, don’t be confused.

Thinking Kindly about Winter

Sometimes when you pay attention to something it becomes satisfied and goes away…

The snow blower (and my brother) have had more than enough to do this winter.

I was sitting with Mom this morning in our usual places – looking out the window at our small street. My brother was out blowing away the latest snowfall, even as it continued to fall. Suddenly huge clumps of the stuff came flying through the air and hit the side of the house. But most of it landed in the yard where it has been accumulating all winter. The lilac bush that is only slightly shorter than I am is buried once again.

Yesterday I thought it would be fun to play in the snow for a change. Mom has been pointing out how the snow is so high in the yard that she no longer can see which cars are coming and going. She takes her job of monitoring our neighborhood seriously and the snow was cramping her style. I decided to shave off a foot or two of the bank in front of her window, so she could see better.

The view down the street, with no lilac bush in sight.

I was surprised to be able to walk on top of the huge drifts without sinking in. There have been so many layers of ice in between snowfalls that I was supported wherever I walked. It is so strange to be standing on top of a bush that you know is probably at least four feet tall. I carefully picked chunks of snow from around the tender branches and twigs of the bush until the top of it was exposed.

And then last night’s snowfall…

Our furnace has gone out twice in the last two weeks. Since we have a boiler that heats the cement slab floor, it takes a while for it to cool down (and a while for it to heat up again). It is a beautiful way to have even temperature and nice warm floors. I don’t usually notice something is wrong until it gets down to 67 degrees inside. I pulled out the small space heaters from storage and tried to keep the husband comfortable while my brother called the repair man. After a good cleaning, the boiler was back in operation and a day later all was normal.

A week later it happened again. I couldn’t believe it – so soon after having been fixed. This time I was surprised to hear the repair guy up on the roof, shoveling snow. The exhaust stack, which is about two feet tall, had been buried by a huge drift. Uncovering it fixed the problem. Thank you winter.

So it is still definitely winter in March, as well as January and February, well… and December, and probably November. And possibly April. Yeah.

To live up here in northern Wisconsin, it is best to patiently make peace with winter, and even give it a little attention. As long as we aren’t in danger of freezing, or having to drive on ice, it can be exciting to see how extreme conditions can get.

This has been a very snowy winter, one in which I have been more restricted to being indoors, have skied less, have been less social. On the somewhat brighter side, daylight savings ends next week and we will have longer afternoon light again. I will also have one more full moon this week and one more chance for a moonlight ski. There’s always something to look forward to. (Like winter being over… shhhh, don’t tell it.)

Layers upon layers

The World of “Me Too”

Today I was challenged. What if there is one person who needs to hear my specific story in order to survive? Some stories are harder to tell than others, but that is a really good reason to tell them anyway.

The devil never tires of taking something good and twisting it to bring evil on humanity. Take sex, for instance.

Growing up, from time to time, I would hear stories of abuse, rape, family incest. I didn’t know anyone personally who claimed to be a victim because, well, me and my friends, we were normal kids, with normal families. Stories of sexual trauma were not normal.

To demonstrate what happens in the mind of a child who is abused and molested I will tell you my story.

I grew up as the eldest child of very young parents. Farming was my Dad’s profession, and I loved our farm life. I loved being around animals, having kittens to tame, and being in the barn at milking time. But it was a struggle for my Dad to earn a living on the farm and he sometimes had to hire help.

Danny was our hired man when I was around five years old. He was handsome and personable and paid attention to me. I didn’t know he was a parolee – that was how Dad was able to afford him. He began to pay attention to me, to joke and talk to me while he was working. I enjoyed the attention. I didn’t begin to feel uncomfortable around him until he started setting me on his lap and feeling around under my clothing. I had no knowledge of sex at that age but even to me, that did not seem right. And yet, he was there in the places that I loved to play and hang out.

I remember the day it all came to a head. He had suggested that we play farm and do what animals did. I didn’t know how to say no to a grown up. I also didn’t know what animals did, but it sounded dangerous to me. I kept walking around the granary trying to keep away from him. I knew that animals were usually hard to catch and that was how I intended to play the game.

My anxiety grew until I finally got out the door and ran to my Dad. He was standing at the farm gas pump, gassing up the tractor and I think I recall grabbing his leg and holding on. I don’t remember what I told him but it must have been sufficient for him to get the picture. The only other memory I have of that day is seeing a patrol car with lights flashing in our yard by the barn, from the safety of the house. There was no more Danny to worry about, and my world was safe once more. No words were ever spoken of this in my hearing. It became as though it had never happened. It was an incident.

Many years later while listening to another person’s story, and still feeling that it only happened to other people, the memory flashed into focus. It was a shock to realize that I had indeed been molested as a child. Having never processed it (and at four or five years old I’m not sure I could have processed it) I needed to know more. Who else had any memory of what had happened? Mom and Dad only knew their part of the incident and it was then that I found out about Danny being on parole. He should never have been around children.

I decided that the part of the story that I would make important, was the fact that I was believed and rescued, without hesitation. The rest of my childhood was happy. I was in church regularly with my family, taught about God’s love and made a decision to believe and follow Jesus at camp one year. I eventually went to a church university where I met my husband. We raised our family of two girls and were actively serving the Lord at every opportunity.

But lest you minimize the importance of one sexual incident, especially when it is the first exposure to sexual feelings, I will tell you that there was damage done. From that point on through the rest of my life the feelings of anxiety, confusion and dread have been linked with the feeling of sexual arousal. It was not that it was difficult to have a normal sexual relationship with my husband – I realized there was no need for negative feelings with him. The evil twist was that I had to imagine situations of anxiety, dread, being used, and coercion in order to be aroused. These imaginations were wrong and I knew that, but they were exciting and almost necessary in order to perform.

What had been stolen from me was the goodness and freedom of sex with a loving, committed partner. I see this same sad thing happening in our culture today. Stories of sexual abuse and violence are mainstream entertainment. Many in our culture, men and women, clamour “me too” at the same time as they consume a steady diet of literature and media that wallows in sexual perversion and objectification of individuals. It would be very hard for a young person to escape being influenced by this contamination of what God intended to be a pure and holy relationship. It is sad, and needs to be redeemed. It’s one more example of why we need saving. Yes, we do.

Two Hours of Normalcy (?)

I have heard that normal people often go to coffee shops to sit and connect with the world over unsecured internet and drink expensive coffee. I needed to try this during my two hours of freedom today.

My attempt at a normal outing.

For some reason I have a hard time thinking of things to do when my Hospice volunteer comes for her weekly visit with Dennis. I haven’t yet found the friends who are free during work hours to do things with so end up going to Walmart for groceries and prescriptions and whatever excitement Walmart provides. I need to do better. I would like to make Tuesday free time a treat, a time to do some “normal people” stuff and have fun. Spend money someplace other than Walmart.

There is one stand alone coffee shop in our small town, and I admit I was a little worried when I got to the parking lot. It was parked up pretty good. I knew I was taking a chance to do this on Birkie week, when thousands of skiers show up to do this ridiculously long cross country ski event. But it is early enough in the week and town is still in the preparatory stage. The coffee shop had empty tables and I am sitting at one, drinking my medium Chai and having a scone, and writing, of course.

I’m enjoying watching the activity outside as the street is getting marked with “no parking” signs. The temporary bridge has already been erected over the main highway where the skiers will cross over and head up Main Street for the finish line. It is such a fun winter event – one of several claims to fame that our town enjoys. Winter storm Olive is due to make it even more interesting this year. I would love to be volunteering at the food tent as in other years, but I’m also glad to be staying home. Staying home is what I have to do and being content with what I have to do is my main winter goal.

Being content is a worthy pursuit. It takes a little practice but so do most good things. I will not always be in this season of having my husband to care for. Being content leaves me free to look around, enjoy this moment, really notice people and things around me. I enjoy sitting and not wanting to be anywhere else. I’m looking at the people going in and out of the shop and guessing whether they will be skiing the long race or not. I’m aiming prayers at them, hoping their experience will be safe. I’m praying that as they ski through this beautiful northland they will sense God and wonder at his creation.

The scone is gone. The Chai was good. I found four hundred seventy-five words to express how it feels to be normal today.

I appreciate multi-function pine trees that can morph from Christmas to Valentines and on to St. Patrick’s Day. Kudos to Backroads for not being wasteful.

We Step Out for the Night: Caregiver’s World

It was Thursday night and I was getting ready to meet Grete, a family member, at a restaurant for dinner. Dennis was back in bed after an afternoon in the recliner. I crushed up his evening pills, dissolved them in some water and took them over to pour them in the feeding tube. It was about time for our hired caregiver to arrive, and for me to leave.

I hooked up the syringe/funnel to the husband’s feeding tube and poured medicine in and watched as a wet circle appeared on his shirt. I checked my connections with alarm and couldn’t see any leaks or openings. Then I lifted the shirt and discovered the real cause. The other end of the tube was no longer in his stomach.

There it was, with the balloon that was supposed to keep it in place mostly deflated. I didn’t know when it had come out, or why, but it probably didn’t take much to bring it out. Something like this had happened when he was in the nursing home and it resulted in a trip to the Spooner ER for tube replacement.

I seriously entertained the thought of sticking the thing back in, and would have tried if I had known I could inflate the balloon to keep it in. I didn’t have the right kind of syringe to do that, so I followed plan #2, call the Hospice nurse. Let someone else decide…

I also called Grete and asked to postpone our dinner to another day, knowing that it might take a while to see this circumstance to a satisfactory end. I also called the caregiver and told her we most likely would not be home. The husband and I were stepping out for the night.

Who wouldn’t want to spend an evening in the ER with this jolly fellow?

Hospice called the ambulance for me and they were soon at the door. Dennis knew enough to be a little anxious but I reassured him that we were going on this adventure together. He laughed. I like that he laughs at my jokes a lot more these days. “Adventure for you,” he said.

After our short ride in the ambulance we were introduced to our ER crew and gave them the story. You have to understand that after a tube like this comes out something should be done very soon to keep the tract open. The PA attending us knew that but unfortunately he had never encountered this problem yet and didn’t think they even had another gastrostomy tube in the ER. Lucky I had brought the old one along in a zip-lock. That’s what they ended up using.

It wasn’t easy to get it in, but after several attempts and a couple techniques, it was replaced and the balloon inflated. I’m a little worried that there might be a slow leak in it, and we might have another event in the future, but so be it. We were discharged and back in the ambulance for the ride home within three hours. That is amazing for any trip to the ER.

The husband got pretty tired out, but I think he kind of enjoyed the extra attention, meeting new people, new places, all that. Isn’t that what we hope for on “date night”?

Note to self: Get one of those feeding tubes before the next time – I bet they have them on Amazon.

The culprit

Being Contrary: Caregiver’s World

Today, in my caregiver’s world, things have not gone as expected, but have not gone badly either. For one thing, I did not make my bed and it set the tone for contrariness for the whole day.

Did. Not.

The CNA coming to help with morning chores needed to hurry and be done, and it was unfortunate because I was needing her to stay with Dennis while I went to my study group. I called on my brother and he was able to come but it was a bother to have to come up with another plan. I was able to get to my Bible study group late, but I was there. My phone only disturbed the group twice before I had to leave – early, oh well. I spent some time thinking about why it is so easy to stay home in contrast to the effort required to go someplace.

One of the phone calls led to a new piece of equipment getting delivered today. The hospice nurse thought the husband would benefit from a suction machine and it was added to our little “hospital at home”. I worked with it and we tested it together until he said “don’t do that anymore” (he was being contrary too), after which he called me from another room to suction him again.

The work table is getting crowded but I now have my own little emergency room complete with oxygen and suction.

But while we were doing all this, I started watching a YouTube video that I could not get away from. I was fascinated as I watched this young Asian girl carve a homestead out of the tropical jungle, all by herself. She chopped bamboo, carried rocks from the mountainside, built substantial structures to live in and house her animals, got her gardens growing and even wired the place with electricity from a turbine set in the stream. She was so smart and good at all of it. She pounds nails without bending them or hitting her fingers. Her channel is called Ana Bushcraft, and she was very crafty.

Up on the roof, no ladders or scaffolding – she just climbs
Never bends a nail (on camera, anyway)

I didn’t always know what she was building, but could not stop watching her work. Her patience and willingness to do things the slow way with whatever materials she could find made me wonder if I would be able to work like that. One project at a time, she transformed her part of the jungle. It was nice to lose myself in her world where there were no sick people, no meetings to attend, no technologies or devices to drive her crazy – just a lot of plain, old hard work. (But I also wondered who was behind the camera, out there in the rainy jungle day after day.) It rivaled the other channel we watch – the cooking show from Azerbaijan.

It was probably a little wasteful of my time, but as I said, I was feeling contrary. I should have been making my bed, but it will be a lot quicker to get into tonight. I’ll make it again tomorrow.

Shopping for Supplies: Caregiver’s World

Not what I thought it was – from http://www.designworksink.com

Yesterday a package came – I was sure it was a sustain pedal for my keyboard. I opened it and found two high class jigsaw puzzles that I wasn’t expecting at all. They came in round containers and I call them high class because they are of frameable art and posters. The pieces are all the same basic shape. I had to try one of them out today and it is hard. I can get kind of forgetful when I’m deep into a puzzle and have to remind myself that I am a caregiver (my patient no longer lets me know when something is needed). I have no clue who sent the puzzles, but thank you. I’m praying a blessing your way…

I pay close attention to the mail these days because that is how much of my shopping for the husband gets done – online and arriving in the mail or by UPS or Fedex. Packages come frequently to keep my little, private hospital supplied. What I’m learning is that I need a purchasing agent.

When I first knew that I was going to have Dennis at home I searched medical supply companies for the items I knew he was using in the nursing home. I could never find it all in one place so I ordered from three or four different companies. I have since become overwhelmingly confused with passwords, promo codes, and “did I really order this?” syndrome. One day a whole case of disposable briefs came when I thought I had cautiously ordered one box to make sure they were the right size. I’m never sure what’s coming anymore, but it’s entertaining that way, and I need entertainment. I pay for the privilege of being surprised.

But my biggest shopping woe has been/is finding the husband’s nutritional formula. He gets everything through a feeding tube. His formula is calculated to supply all his nutritional needs. I found a company that had it, but after three weeks it was out of stock and I had to find another supplier. It’s relatively important not to run out of this stuff so I get pretty nervous when I’m down to only a few bottles. The second company has also started sending me messages about stocking problems.

1 liter bottles of…, well, whatever it is. Probably a week’s supply. Yum. Not.

Yesterday I was down to 1 day’s supply left when two cartons showed up. One had traveled about four different places since starting from Pennsylvania on January 13th. The other had come from Florida and only been traveling for four days. The packing slips didn’t have recognizable order numbers although it is all from the same company. I’m getting so confused. At the end of the day, I know I’ve been charged for two more cases and they are probably out there seeing the world on their way to me. I’m hoping to pray them in. In an emergency I guess he could have what I eat without starving but I don’t know if popcorn would blend up and go down the tube very well.

I have just put the husband back to bed after several hours in the recliner. Getting hoisted up in a sling evidently isn’t the most comfortable ride because he starts doing a little half moan, half song during the process. I think he’s self soothing by distracting himself, but who knows. He doesn’t tell me what he’s feeling and most of his songs have no words. Except the other night, when I was telling him about the cooking show we watch on YouTube. He decided to sing the word Azerbaijan for a while – that’s where the cooking show is from. I took it as proof that he’s listening to me even when pretending not to.

That’s all for today’s look into my caregiver’s world. It gets a little crazy, just sayin’…

Fighting Isolation: Caregiver’s World

My husband is in the last stages of Lewy Body dementia and can no longer do anything for himself. He is in hospice care and he is at home where I am his main caregiver. This is my world.

One of the biggest changes for me after my husband’s stroke was accepting all the things I could no longer do. When he was still able to manage by himself, I could do music at church, volunteer with my favorite organizations, and meet with others for exercise. Since the stroke, and after bringing him home, I can’t leave unless I have a sitter to be with him. I have to prepare him ahead of time by giving his feedings and medications before I leave. I can’t be gone for more than three or four hours max – usually only two.

I started losing touch with my community and feeling isolated.

But now, after six weeks with my husband at home, I’m finding new, small ways to get involved that don’t overwhelm me or cause more stress. This week Mom has joined me and we are stuffing baby bottles. Yes, you read that right.

Baby bottles, only one of four boxes.
Fold and stuff with these

Every year, one of my favorite organizations, Northwoods New Life Resource Center, does a fund raising campaign. Plastic baby bottle banks are distributed, mostly through churches. People fill them with spare change, bills and checks and bring them back within a couple weeks. Last year I went to New Life Center and helped stuff instruction sheets in each bottle. This year Mom and I are doing it from home. It’s the perfect, low stress activity. I’m also able to do some chores, like washing donated clothing. I have frequent contact with others and get to be involved in a great cause. Volunteering from home, what an idea!

A big anti-isolation factor for me has also been learning to utilize the helpers I pay for and the ones that come with Hospice enrollment. My hired company gives me two morning hours and two evening hours each week day and every other weekend. Now that we know each other, my daily helpers let themselves in and tell me to get lost. I use the time to shop for groceries, pick up prescriptions and other odd errands, or I go over to spend dinner time with family. My Hospice volunteers give me a couple hours more in the middle of the day, once a week. I want to use this time to find out if I can still remember how to ski – it’s a bit sketchy…

Hospice has also been a blessing because of the number of people who come to us in an average week. The husband and I see the weekly volunteer, a nurse, a CNA, a chaplain, and a masseuse (she works on the caregiver too, yay!) We’ve gotten some good conversations and some new friends.

As hard as this time is for the husband and I, there is no sense in adding to the sadness by letting ourselves feel isolated. Separating from meaningful activity and caring community only hurts us. We don’t have to let that happen, and won’t.