A to Z Challenge 2020: Theme Reveal

I don’t know how to categorize my topic. It’s about health, emotional, mental and physical. It’s often about family. It’s personal. It’s definitely about a particular lifestyle. It’s about caretaking.

Lots of us are caretakers these days. We care for our children with disabilities, our aging parents and family members with dementia. Some of us work in healthcare institutions and give care to patients of all ages and conditions. It’s a special calling, a special task.

This year I’m using the April A to Z Blogging Challenge to share my own experience, my stories, my thoughts and feelings about caretaking. I am a retired RN, retired in the sense that I’m not getting a regular paycheck, but I’m still learning and doing, in the field of caretaking.

I live with my husband, diagnosed with Lewy Body Dementia in 2018. I’m also across the yard from my mother, a courageous 87 year old, and within a short drive of my uncle and aunt, both in their 90’s. Like so many others these days, I have a friend and a dear sister-in-law who are fighting cancer. While not giving daily care to all of these people, I’m often involved with their needs and I do care.

I’m interested in hearing from others about their experiences, since I have already found that caretakers, as a group, have much to share and teach each other. These posts are an invitation to all who read to contribute and connect. The A to Z format doesn’t cover all possible topics of caretaking but serves as a starting place for discussion. Please join me this month as we explore being caretakers.

There is a moral task of caregiving, and that involves just being there with that person and being committed. When there is nothing that can be done, we have to be able to say, “Look, I’m with you in this experience. Right through to the end of it.” Dr. Arthur Kleinman

Not Done Yet

It snowed again this morning. I am not sitting in the chair in the picture, but I am in one close by with the same view. Winter knows its days are numbered, but March gives it one more month to exhaust itself. I am SO ready for the next season. It is now very important to keep going on and not lose heart.

I’ve gotten that message in so many ways – not that it’s a new thought that I must persevere. Every inspiring story ever told has the theme of “hang in there”. It’s probably because we humans are always finding ourselves in the “go numb and give up” state of mind over some circumstance in our lives.

I was all set to go visit my daughter, the one who is planning a wedding. We were getting ready for some good mother/daughter stuff, a bright spot to take up the last days of winter. And then along came COVID-19 and all the warnings for people over 60 and the immunosuppressed. That pretty much describes all the people that I come in contact with on a daily basis, myself included. Add to that, the fact that my daughter lives two crowded airports and 6 hours in a plane from me, in a city where the majority of U.S. deaths have occurred. Yep, Seattle. So, I’m not going there now. Thank you to all who helped me make the decision. (It was sensible, but hard anyway.) I’m not giving up on a chance to do this trip in the future – that’s where the perseverance comes in.

I also thought about the merits of continuance, keeping pace, and not giving up on a recent walk with my brother. Winter walking through the woods is a bit of an art. The path is very hard and slippery in places and very uneven, which makes me tend to look down and watch my footing (while running into branches at eye level…). I’m always conscious of the biting, cold air I’m breathing in, even while I’m sweating under layers of winter clothing. It’s a strange mixture of exhilarating and exhausting. But I can see my brother’s feet ahead of mine and I know if we keep putting one foot ahead of the other, we will finish the 3 mile loop.

Right, left, right, left, slip, scramble, hop to get in step again, KEEP GOING

Persevere, my friends. Rest and recoup, if necessary, but keep going. Whatever your “winter” is, DON’T GIVE UP.

This encouraging smile was in the snow along the trail. I added the hair.

The Least Favored Soup

The Least Favored Soup

They kept coming, wave after wave of people carrying backpacks, looking a bit dazed, numb. They were hungry and they needed food, warm liquid, salt, calories. They had just skied 29K in below freezing temperatures. This was the Kortelopet and Prince Haakon races of the American Birkebeiner. https://www.birkie.com/ski/events/kortelopet/

Our small town hosts this winter event every year in February, unless there is no snow or the temperatures are deadly, rare situations. The number of people in town goes from the usual 2500 to 40,000 for the two days of races. It’s a pretty big deal for people who like snow. It takes nearly the whole town volunteering to pull it off. This is my second year of helping in the food tent, where all the skiers congregate after crossing the finish line.

The International Bridge which all skiers cross to reach the finish. It is erected over the main highway and covered with snow.

My brother is one of the race chiefs, heading up the serving of food and all the volunteers who help him. The menu is simple – soup, bread, bananas, cookies and drinks. The challenge is doing it in a tent, set up on a vacant lot where everything you need has to be brought in by someone. All the soup arrives frozen in gallon bags and has to be thawed before being warmed to serving temperature. It takes a crew of several men to keep filling the warming tanks, opening the bags and emptying them into the cooking pots, then transferring the hot soup to the serving tables inside the tent. All this is done outside.

“I ski the Birkie every year just for the chicken soup,” one man tells me. I don’t believe him, but the soup is really good. Volunteers inside the tent ladle it into serving cups as fast as they can for hours. Chicken noodle soup is the favorite but there is a choice. The tomato vegetable soup was my station and it is also a good one, perhaps a bit more nutritious too. However the chick/noodle is favored two to one.

I’m guessing that the pots are filled with about seven or eight gallons of soup at a time. I emptied seven of them – I can’t even imagine how many servings that was. It helped that I was tall. Scooping into the pot is easy when it’s full but as the level goes down, it gets more difficult to reach the bottom, and messy, especially when doing it fast.

The (least favored) vegetable soup

It was cold in the tent before we started serving the first finishers. The wind would lift the tarps and blow cups and table coverings off our tables. The ground also is frozen and cold, which is why we stand on rubber mats. After we got really busy I forgot all about my feet feeling like frozen blocks of ice. Watching the people come in, young ones, elder ones, men, women from all over the world, all I could think was “why would they want to be this cold and still call it fun?”

We fed over 3,000 today, and this was the smaller of the races. Tomorrow’s crowd will be twice as many. I hope to be there again, serving up the least favored soup, just sayin’…

Small Town Chronicles

Grocery Shopping with Mom

It is dead of winter in this small town in the northern part of the Midwest, which is synonymous with saying not much is happening from day to day, except trying to keep warm. Our weekly excitement is going grocery shopping at Walmart on Friday mornings.

We go on Friday so we can plan a pleasant sabbatical rest day on Saturday. Eating good stuff always makes it special. We go early to avoid the Friday rush. The parking lot is not full yet at 8 am – we usually have our pick of the handicapped spots. It is also nice to avoid crowds since we have an immune suppressed person in our family to consider. We just don’t need to be around coughs and sneezes.

This particular Friday I loaded up our trash and recyclables because we take it all to the dumpster on the way. We always take Mom’s SUV because it’s easy for her to get in and out and has lots of room for all the stuff we buy. It’s also a significant blessing to have this SUV in a heated garage. We never have to feel the freeze when it’s below zero outside. We just get in our seats and off we go.

I say that we shop at Walmart, but that’s really the last place we go. We know what’s there most of the time, so we check out the other grocery store in town to see if they have different/better stuff on sale. I pulled into the parking lot at Marketplace Foods and looked for good parking. I was just planning on how I would park so we could wheel our carts right up to the lift gate, when I remembered that we had forgotten to stop at the dumpster. The back of the car was full of garbage.

Another wonderful thing about living in this small town is that everywhere we go is within five minutes drive of home. So we extended our outing a few minutes and drove back home to the community dumpster. Good to get rid of that stuff and have room for groceries, yeah.

The rest of our shopping trip, through the two grocery stores, dealt with the details of finding a boneless turkey roast – not just any turkey roast, but one with both light and dark meat. It involved tech skills on smart phones and researching the store we hadn’t yet shopped. It resulted in a large white meat roast and a package of turkey legs, bone in, at the first store and the kind of turkey roast we wanted at the second store. In short, research was ineffective. Way too much turkey.

That’s it folks. That was the excitement last week in Hayward, for us. But before you label us totally lame, know that this coming weekend 40,000 people are showing up in Hayward for the American Birkiebeiner (ski race) and it will be enough excitement to last us until spring. I get to help feed hot soup to this crowd after they knock themselves out skiing 40k through the woods. This is not something one sees every day, not in this small town.

The soup crew (me on the right)
How we cook soup for a crowd with no kitchen.

P.S. There actually was more shopping excitement last Friday. Mom is redecorating the living room and we also have two furniture stores in town… but that story is for another thrilling post, someday. I don’t want to throw all the adventure in one post when it’s really worth two. Just sayin’…

Sharp Things

I am most certainly blessed in the kitchen lately – blessed with new sharp things.

It started with the apple cutter. I helped with kid’s snacks one afternoon at church and got familiar with that little tool. It worked so great I had to go to the cooking store in town and get one for myself. The store is called Hayward Mercantile and it’s kind of high end, with appeal for shoppers from the “big city” who don’t go to Walmart. That’s not usually me, but it’s such a lovely store. Their apple cutter was heavy stainless steel and came with a plastic guard. That should have been my first clue that it was really sharp. I cut myself the first time just putting it away in the drawer.

Later, we were having a rare meal of steak or some other meat, I can’t remember which tough thing it was, and the husband was having trouble cutting it up. He wondered why we didn’t have steak knives on the table. I reminded him that our two sets of steak knives were in North Carolina living in storage. Knowing that he would appreciate it, I secretly bought six lovely Cutco table knives for his birthday. Tough meat has met its match.

The reason I bought Cutco, which is probably one of the more expensive brands of cutlery, is because a young relative has gone into business selling it. He wanted to practice his sales pitch in front of a friendly audience. I felt it was only friendly to buy something, so there, I did it. The demonstration was remarkable. He had a pair of Cutco scissors that cut through a copper penny. Wouldn’t that open up a whole new world of cooking options? (A literal 50 cent meal!)

A couple of weeks later he practiced in front of Mom, who was also very friendly to him. She bought some knives AND the penny cutting scissors. What I didn’t know was that she intended to give them to the husband and me for an anniversary gift! They now reside in the drawer with the sharp apple cutter. Several times I have accidentally brushed the cutting edge with a hand – a touch that would have accomplished nothing with my usual knives – and come away bleeding. It is a fact that I almost always have two or three cuts on my hands, in various stages of healing. The kitchen has become a dangerous place.

As if this was not enough, one day we visited some friends who had a very nice cheese cutter. I hate the kinds with the wire, but this one had a shape like a server with a knife blade in the middle. You just drag it across the cheese and a cute little slice of just the right thickness appears. Again, it was the husband who wished for a cutter like that, because he is always snacking on his special cheese. Back to the Mercantile. They had one, only one, made of heavy stainless steel and costing more than a meal for two at Perkins, but I bought it anyway. It will last forever if I don’t lose it. And who ever loses their cheese cutter?

As I said, the kitchen is a whole different place now that I can cut things. And I do a lot of cutting. My sharp tools save me time and money too. Just this week I quick cooked a nice roast, well,… actually I burned it onto the bottom of the pan. But it turned out to be juicy and tender after I surgically removed the char. I couldn’t have done it without my new knives, just sayin’…

Forty-Seven

I am so glad I went through the exercise of writing this “sequel”. Anniversaries are for reminding us of truths that keep us going, just sayin…

Five years ago, on January 11, 2015, I sat writing as I am now, on the same subject – the anniversary coming up in a couple days. I took a picture of my diamond and thought about all it meant to me, being married for forty-two years.

The ring looks a lot different now. Since it no longer fit me, I had the diamond reset. My preference changed to white gold somewhere in the last thirty years, and I worried about the prongs wearing off and losing the stone. The price of the gold in the old ring wasn’t enough to pay for the new one, so it cost me. I could only afford to replace the engagement ring with the stone in a secure beveled setting, but it was good to be able to wear it again.

The new setting suits me. It is plain, safe. It doesn’t collect garden dirt or catch on my sweaters. It fits, although I don’t know for how long. My hands keep… growing.

Life has changed. We are changing with it. It’s been a little over a year ago that my husband got his diagnosis of Lewy Body Dementia. That day wasn’t when the problem started but it did mark the change in his focus. How does one think about anything else when faced with a prognosis like that? His world has gotten smaller in so many ways, limited in large part by his dependence on me. Today, at home, he was relatively quiet while we ate a meal with some friends and listened to a sermon on the internet. He spent most of the day in his recliner in the corner of the living room, looking very tired. He asked me once what I was doing. He went to bed early.

It means a lot to me that he is not ungrateful. He is not a big complainer. He puts up with me dusting him off all the time and fixing his clothing. He eats what I fix for meals and tells me when it is good. He willingly follows my suggestions. He sits still while I trim his beard. He doesn’t get mad when I easily do the things that are hard for him. He doesn’t criticize my decisions about money, or schedules. He is still here, a sweet person, a nice guy, thinking, trying to manage his daily existence as much as he can. But there is very little that he can contribute to us, to our marriage, to our future. His executive functioning is not working well.

Most of the time, I cannot imagine what he thinks about. I even have trouble describing my own feelings about what has happened to us. For our anniversary, should I not be able to put words to what’s meaningful for us?

It is for times like this that we make promises to each other. Our marriage vows had the old-fashioned words “in sickness and in health, till death parts us”. We had no idea who would be sick, no one does, usually. Few have the ability to think about what that means when the excitement of marriage and all it entails is new. But now, forty-seven years later, the promises have become meaningful. It means that we own these new circumstances together.

Now it makes sense to me what covenant marriage is. There were three of us making promises on the day Dennis and I married. God, who heard my promises, now helps me to keep them. God, who knows all about grief, loss, dread, panic, and everything else I experience finds ways to support me. He assures me that promises kept will be worth it, and that growing in personal integrity will be satisfying and rewarding. Our days now are part of something bigger, better and soon coming (relatively speaking). They are not the end!

So, on Tuesday the 14th, I will remind the husband that he is not alone. I am keeping him company as long as I am able, and I’m going to do my best to keep life from being dull (I guess he kind of does that for me too…) There are gifts all around us that we can point out to each other – maybe that’s how we’ll spend our “Happy Anniversary”.

Hand Fashion

Hand Fashion

Removable, with wiggle room, and white which goes with everything.

I had a green one just like this but it didn’t last long.

The ugliest of all, but very utilitarian.

I don’t blame anyone for not being interested in the various splints and casts that can be worn connected with CMC arthroplasty – medical speak for fixing an arthritic thumb joint (although I KNOW some who aren’t interested now will be in the future… just you wait.) I mean to finish this expose for those of you who are interested.

I am now in my second month of recovery after this major reconstruction of my hand. The doctor was fairly accurate in saying I would hate her for the first month. It’s been painful, awkward, inconvenient, and at times depressing. I’ve gotten a whole different way of viewing those with this kind of handicap.

Last Thursday the second of the hard casts was removed. The pin, the one that I was sure was causing most of my pain, was removed. It had worked its way out nearly an inch farther and was lying flat under the cast. At least that made it easy to remove. I didn’t take my phone/camera with me for this procedure. I was glad not to have it when I saw what skin looks like after a month of being wrapped up with no air and no washing. Gross.

I then got fitted for a new splint. It’s plastic that softens in warm water and was molded to the inside of my thumb, wrist and arm. Thankfully, it can be removed by simply undoing Velcro strapping. It is less bulky than the casts. I can wear my long sleeved shirts and my coats again which is great because it’s gotten to be winter up here.

I wish I could say that the pain was gone. It’s not, but the pain pills are. Ice bags have become my best friend. It seems that cold not only reduces swelling, it causes a distracting pain of its own which is much more tolerable than the pain it is covering up. The scar is especially sensitive with a burning pain that I attribute to nerves that are trying to heal. We’ll give them one more month…

I get to start occupational therapy tomorrow, at the crack of dawn. By 7:30 I will be doing thumb exercises which I’m sure will be quite strenuous. The whole imperative of not using the hand to do any lifting or thumb to finger pinching is hard for me to follow. Now that I don’t have to worry about getting a cast wet, and my fingers are more free, I find myself breaking rules all the time. I’m even typing with both hands now, in spite of it being a little uncomfortable.

I go back for another check-up December 19th. I am glad that the worst of this is over, although I’m warned that the second month is still not a “picnic”.

Give Me a Hand, cont… Distractions

November 1, 2, and 3, 2019

Life was going on smoothly with my new, blue cast, for a few days at least. We had a good, but short visit from the North Carolina daughter and another surprise visit from a distant cousin. Events like this are good distractions and I am easily distracted when pain is chronic and below a certain level. And then came Friday, with a totally new distraction.

I had an early morning appointment with the ophthalmologist (tempted to just write eye doctor) and was surprised to see the husband up and reporting to me that his leg had bothered him during the night. He thought it was swollen and felt different. I often don’t agree with his assessments, but I always check to make sure. It did look a little swollen and was slightly warmer. I sent a quick email to our doctor and she recommended we come to the clinic and see what was up. So we were there by 11:30, the husband being examined by a PA.

There was the possibility of a blood clot, a DVT, short for deep vein thrombosis. She ordered an ultrasound of his left leg and we set off down the hall to radiology. Halfway there, Dennis could not go any further. He was leaning against the wall and holding on to the handrail, looking scary. I ran for a wheelchair and helped him sit. He was weak and sweaty. At radiology he was feeling better so the ultrasound was done. I watched the screen as the tech worked and although I find it hard to know what I’m seeing, it was evident that something wasn’t right.

From there we were ordered directly to the ER and met with a whole squad of RN’s. They hooked him up to EKG, put in an IV and started monitoring his vital signs. It didn’t help that his blood pressure was 200/104. The ER doc sent him for a CT scan of the lungs and it showed multiple clots in both lungs – significant was the word they used, as opposed to massive. He was started on anticoagulants and admitted to the hospital. That’s where he spent the next two days until his blood pressure stabilized and his blood thinners had reduced the risk of additional clots.

I don’t remember thinking much about my hand the whole time this was going on. That is not to say that I’m recommending medical emergencies as therapy for chronic pain.

Give Me a Hand, continued

10-24-2019

Ten days after surgery I went back to have the splint exchanged for a fiberglass cast – the next step. The cast tech told me the thing I thought was a suture was actually a metal pin, holding bone and ligament in the right places and coming out of the skin in the shape of an L. Normally they stick out above the skin but my pin had migrated, moved, and was embedded in my flesh. A felt pad meant to keep that from happening had slipped out of place. He didn’t seem alarmed and said that it wasn’t uncommon and was probably due to my being more active. I got another 30 seconds of doctor time and then the head of the pin was pulled out slightly, cushioned with felt again and the cast was applied.

Hmm… there was a piece of metal in that hole.

This cast was less bulky and easier to live with than the splint. But a few days later I was still feeling that burning pain almost constantly.

10-29-2019

I decided to send the doctor a note about the unsatisfactory pain level and it was agreed that I should have the cast checked. It happened that I was going up to the medical complex anyway, for Mom’s dermatology appointment so they agreed to fit me in. Most of our specialists work in a city about 90 miles away so logistics are always in play.

The same tech who put the cast on greeted me with “So, what’s wrong with the cast?”, in a somewhat defensive manner. I told him it was the pin I was feeling mad at, not his cast. And sure enough, when the pretty Packer green cast was sawed off we saw that the pin had rotated again and was making another dent in my skin. The doctor didn’t look at it this time – just told him to put it back in position and wrap it up again. He labored over finding a way to keep the pin out of the sore spot. Vaseline gauze, felt padding and layers of cotton batting went on, covered by the last layer of fiberglass – denim blue this time, which I like better (no offense to the home team). I went home hopeful, but worried because it still hurt from having the pin moved. I was beginning to wonder about the wisdom of putting a pin under a tight cast that will always be putting pressure on it. Does that sound like a recipe for pain?

Such a pretty blue – goes with so many of my outfits.

To be continued…

Give Me a Hand

I realize that I completely dropped the ball (and the story) after the big build up about my surgery. The truth is I haven’t felt much like writing since then. Everything in life has become a one handed task, which makes typing pretty slow. But, it’s now time to complete the record. I just wish someone would give me another functioning hand…

For the record: (typed with one hand)

On the 14th of October, after weeks of anticipation, I had surgery on my left hand to relieve arthritic pain in the thumb joint. The hospital experience was very good, almost amazing. The only thing missing, in retrospect, was a detailed explanation of the process from the doctor. She came in to put a mark on my hand and was out again in less than 30 seconds.

I left several hours later with the hand wrapped in a bulky splint and totally numb due to a nerve block. The block took care of the pain for nearly 24 hours and then I began taking the prescribed pain med.

That first week I had far less pain than I had expected. It was similar to the way my thumb felt before the surgery. I even began using that hand for simple stabilizing tasks, even though the splint made it impossible to hold things. I remember one time when I was trying to get comfortable in my recliner and used both hands to push myself back. There was a significant jolt of pain that took several minutes of recovery time. After that I gradually became more aware of an annoying burning sensation under the many layers of cotton padding and elastic bandage.

I finally got curious enough to look underneath it all. It was uncomfortable to the degree that I thought a re-wrap might help. The incision appeared to be healing well but there was a single spot of inflammation farther up the thumb that looked like it had a very thick suture drawing it in. “What on earth is that?”, thought I. That is definitely the place that hurts.

Sorry if you find this too graphic. I’m a nurse so I’m immune.

To be continued…