Category: the husband

We Step Out for the Night: Caregiver’s World

Shirleyjdietz2 Comments

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

Shopping for Supplies: Caregiver’s World

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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’…

Northwoods Journal: Changes

Shirleyjdietz11 Comments
Hi from a friend’s house in Duluth, Minnesota. She lets me stay in “my room” when I’m too tired to drive home.

Back several weeks ago, in July, we were getting ready for our family reunion, enjoying walks like the one in my last post, and having a great summer. And then the husband had a stroke, a cerebral vascular hemorrhage (CVA). He has survived but our lives have changed, a lot.

Since then, most of what I’ve written has gone in a separate blog, one that tells the story of our experience since his diagnosis of Lewy Body Dementia. I won’t tell it again here, but in summary, we now have first hand knowledge of ICU’s, ventilators, tracheostomies, feeding tubes, and several other things that the husband never wanted to know about.

Hi, I’m the husband. My real name is Dennis and this is Occupational Therapy at Miller Dwan Rehab, the nicest place I ever wanted to get out of.

This is the first day in five weeks that I’ve been home all day. Dennis is in a rehab hospital now, a really good place, and making progress slowly. I felt he would be okay if I didn’t see him every day. The hospital is in Duluth, 90 miles away, and I’ve grown a little weary of the drive. I’m often in the car eating things I shouldn’t eat, just to stay awake – a bag of popcorn can last nearly 70 miles if I don’t spill too much of it.

Although I have wonderful support from friends and family, these changes leave me feeling physically alone quite often. Fortunately, I am spiritually befriended. God is such a friend. Jesus is such a friend. I took a walk this evening, kind of like the one in my last post, on the wetlands trail and saw evidence of my friends. It was almost like things were being pointed out, to look at, to talk about and enjoy. And I took pictures, of course.

All by itself in the middle of a nicely mowed field
Hello
She looked and then went on eating.
Sunset coming on.
Like fire in the sky.
Clouds, not mountains, in the east and in the water.

It’s September now. August was surreal, hard, and so different from anything we have known. We have yet to find out what our new normal will be. But it’s coming, and it will be okay.

Being “Right” Comes Full Circle.

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(It has been suggested by the husband that I write this to his daughters.)

We were reading a thoughtful paragraph on humility this morning, referencing people who are always right about anything and everything. Dennis laughed and said something that our youngest daughter had said to him once. “I am right, because I am a Dietz!” It was said tongue in cheek and they laughed at it at the time too. Then he got quiet and continued, “I love our daughters so much. I hope they know that.”

It was a special moment and we continued talking about the meaning of that conversation and why the memory of it sparked such gratitude and love inside his “dad heart”.

During the years our daughters were growing up at home there were so many good times for us as parents and for them as children. There were also times, not so good, when they felt distanced from their parents. The role of provider was always of high concern for Dennis, and required a lot of his attention. Maybe small people (children), having limited experiences, were not as interesting as other friends and business associates. He never intentionally conveyed this to them, but it was conveyed nonetheless.

In addition it was natural to assume that children’s opinions, reasons, and thought processes were still to be directed and molded, not listened to and considered. This attitude also was never intentionally spoken, nor was it applied 100% of the time, but over the years it was felt, sometimes acutely. Although Dad provided well and loved them, he didn’t know them personally and was often clueless as to what they were feeling. Perhaps they heard more of “don’t leave toothpaste in the sink” and “your lights were left on – go turn them off” than the things daughters need to hear from their dads.

So what does it mean when a daughter can tease, laugh and point out some hurtful flaw when talking to her dad? What did it mean that she could remind him of that “always right” attitude in a gentle conversation (well, I don’t actually know how gentle it was or what it was about because I wasn’t there…)? To him, it meant forgiveness. It meant that she wasn’t afraid to remind him of that proclivity of his. It was acknowledgement and grace extended. And it was love.

The husband has mellowed so much in the last few years. Retirement has put the distraction of being a provider behind him. He fully realizes those things he has missed by not being more aware, more curious, more persistent about knowing his children. He has also been diagnosed with a heartbreaking condition. But it has turned into a blessing. It’s almost as if his heart had to be broken in order for him to know what was in it. It’s amazing to think about.

Although he is disabled, he has traveled long distances to see each of his two daughters get married, during pandemic times. He would not have missed these opportunities for the world. “Being right” has come full circle and is now much more like “Being in love.”

It provides hope for us all. We can grow, learn, change. The whole story doesn’t have to be pretty for the outcome to be good. God be praised for his transforming power, his gentleness and his wisdom, and his mysterious ways.

Give Me a Hand, cont… Distractions

Shirleyjdietz4 Comments

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.

Running Out Ahead

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The husband keeps repenting of “running out ahead” of God. He is a problem solver and problems drive him crazy – it always seems to him that because he is aware of the problem, it is his to solve. He is not comfortable waiting for God. It’s usually in retrospect that he realizes his “running ahead”.

I am not saying that I condone inaction, waiting on everything because one is too lazy to address issues. That drives me crazy. When a problem is there to be solved, I am willing to pray about it and do whatever comes to mind in a reasonable fashion. Do something, do one thing and see what happens next…

Lately, almost daily, new problems are coming up on Dennis’s radar. He thinks about them obsessively. When there isn’t an actual problem, he thinks of a possible problem. He comes to me three or four times in the space of an hour, with more to say about the developing structure of the problem. It grows, takes shape in his mind and is often described as a dangerous situation, not just to him but to others as well. He must figure out what to do and intervene. He must convince others that action is required because he is not physically capable of doing what is needed by himself. What a dilemma. His world has a lot of anxiety in it.

The basement where his stuff is stored is likely going to flood because there are springs on the property.

The coming trip back home is dreaded because something in the truck is messing with his eyesight and making him sleepy. His wife will fall asleep and there will be an accident.

He hasn’t heard that the AC in his daughter’s house has been serviced in the two years she’s lived here. Danger, danger…

He might run out of vitamins, or pineapple on the trip home and his whole health regimen will go down the tubes.

There must be a reason he’s had the word “Fabian” given (by God) to him to investigate. Who is Fabian Farrington and how can he discover why he needs to know?

How can he keep from being further brain damaged while his wife is using the hotspot to access the internet?

How can he convince the code officials of the need to reverse their thinking about grounding rods in duplexes? People’s lives are at stake.

Who wouldn’t be anxious? It seems to me that the challenge is to be aware of possible problems AND aware that someone more capable than one’s self is working out the solution. Trust someone else. Trust God. Learn to wait without stressing out. Like the sign I saw yesterday in the barn I was in – ” Remember stressed, spelled backward, is dessert”. Yes it is, just sayin’…

Search me, O God, and know my heart; test me and know my anxious thoughts. Psalm 139:23

The New Normal (Our Life with LBD)

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I don’t really know if it can be called normal. Normal seems to mean that something stays the same over a period of time, long enough that you can grow used to it. We can’t seem to grow used to things that are changing all the time as we deal with the husband’s problems. “Normal” has come to mean regular frustration as he deals with less of almost everything he needs in every situation.

It snowed yesterday and was wet, slushy and slippery everywhere we went. The husband’s shoes were getting wet and were clearly not what he would need for winter, so today we shopped for boots. This is something we both remember him doing by himself, but since he no longer drives, I am with him everywhere he goes.

The first thing we had to do in the shoe department was find a place to sit down. Dennis can’t walk very far or stand very long without getting tired, and he always has to sit to put on his shoes. We struggled. Putting on boots can be such hard work. I fetched pair after pair from the shelves, opened them up and pulled and pushed until he could get his foot down inside. Each time he had to stand and test out the feel of the boot. Up and down, over and over. He was worried about the small bench he was on as it would start to tip as he pushed himself up. We finally found a pair. I think he would have liked to go home at that point, but he had also wanted to get a new watch.

After pointing him in the direction of the jewelry counter, I thought, briefly, that I would let him look over the options and choose. But no, I decided it would be easier if I helped him so we went together.  His vision is one area where “less” keeps happening. In order to see the time he decided the face of the watch had to be white, with dark hands and numbers that were easy to read. No shiny reflective surfaces would be suitable. The band had to be easy to close. He would have liked one that showed the date, but finally decided that he would do without since he couldn’t read those small letters anyway. It didn’t take us very long to pick one out but by then he was really tired. He went to the pharmacy where they have benches, and sat waiting while I got a few groceries.

And we are getting very good at finding restrooms in all the places we go. This was Walmart and he had to walk to the far end of the store for that before we could leave. He walks very carefully, and very slowly.

Often we think of dementia as robbing a person of their memory first. That is not a given with Lewy body dementia. Right now some of the husband’s most frustrating symptoms are motor related. He has less strength, less balance, less flexibility, less stamina. He will tell you that he is also forgetful but I find that he can make himself remember most anything he wants to, given enough time. He may get overwhelmed with thinking too hard, but he still thinks correctly. He remembers. And that is what is hard – remembering what he used to be able to do, but no longer can.

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We got the boots.

My Elephant

Shirleyjdietz4 Comments

Part of my problem as a writer is that I often feel like a minor player in someone else’s drama. Even if they don’t write their own story, I feel like I’m stealing if I write about it.

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In searching for reasons why he was diagnosed with Lew Body Dementia just weeks after his retirement, the husband has wondered if he is supposed to share his experience with others. Could it be he is meant to encourage others in some way, even though he is pretty sick about this whole thing? He actually says he might start a blog, or write stuff down as he thinks of it. For several reasons, I think the chances of him writing anything are slim.

For one, he has a history of brilliant ideas that never see action. I don’t see his diagnosis changing that.

Reason two – he doesn’t have experience expressing feelings. He has them, but they don’t usually bother him or beg to be shared. He would like to share things now, but they end up coming out in long, convoluted histories of his life journey accompanied by tears, and a tone of desperation and sadness. He’s doing it a little better now, but the first couple of weeks were tough and any compassionate person who had time to listen patiently ended up crying with him and giving him a hug.

Reason three is simply that writing is work and work isn’t something he’s looking for. Too much mental work makes his head spin.

It’s true that my story has a lot to do with his story but, of course, I tell it from a very different perspective. He reads what I write. I wonder if I will be able to write what I really think or will I change the narrative because of the effect it might have on him?

Interestingly, the two things that have helped the husband and I know each other better in the last few years are our “together” prayers and my blog/journal. I guess in each instance I tend to be more open, truthful and informative. In each instance he feels less threatened by my words because they aren’t spoken to him – they are conversations with God or my readers. He listens better. And the same goes for him when it comes to telling God his thoughts and concerns – one might as well be honest. I learn things about him that he doesn’t think to tell me.

It certainly isn’t that I don’t want him to write his own story, from his own perspective. I do. But not writing about this part of my own life has been hard. The vague feeling that I couldn’t write about this big thing happening to us, has made me not write much at all. Somehow, when there is “an elephant” in the room, so to speak, writing about anything else takes second place to wondering about the elephant and what it’s going to do next.

That elephant is on my mind most all the time. I might as well write about it. Probably have to. Just sayin’…

“Back in the Day”

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Back in the day…

Something about those words makes me cringe with premonitions of stories about how high the snow banks were or how many miles it was to walk to school. Now I am guilty of using it all too frequently as I write. Guess what – EVERYTHING has a back story. EVERYBODY has a back story. That’s what we call it today, if we are kind.  I think the back story is often crucial to understanding things about the present story.

A long time ago, in a land far away (Bradenton, Fl) the husband decided to buy a man toy called an E-Bike. He has always found gadgets intriguing, especially if they were energy saving and had some practical use. This bike was an early exploration into transporting oneself using electricity, much like electric cars are today. It was only available through car dealerships and was the social experiment of the day. It was pretty, shiny blue, feeling of quality and fully decked out with lights, various indicators on the handlebars, locking mechanism, gears, horn, and all kinds of gear bags made to fit. Sweet.

The plan was to ride it the seven miles to work, along a busy highway. I guess there was a bike lane in some places but it was often hazardous with broken glass and other tire-puncturing trash. The traffic went by, close and fast. It was often raining, or hot. The plan didn’t last long. But being the oddity that it was, the bike was pulled out pretty often and demonstrated to curious friends and family. It rarely left the driveway.

My own most vivid memory of using it was when I visited frequently with an elderly lady who lived five or six miles away, mostly through residential areas. I got some exercise, because I could pedal it like a normal bike. But, its real advantage was in the take off moment at intersections. Instead of having to go from my resting/waiting pose to that awkward effort of quickly powering through the crosswalk with dozens of eyes watching, I could just touch the little lever and smoothly zoom away with no effort at all.

The real reason I remember this time had nothing to do with the bike however. It marked the first time I lost a cell phone out of my back pocket and spent hours retracing the the route looking for it.

Years later, the husband gave the bike another chance. The office had moved and was not even two miles away so once again he was riding it to work. One day, there might have been a light rain making things slippery, he rode across a railroad track which crossed the road at an angle. The front tire got caught and he crashed and tumbled. It was a trauma for the husband and for the bike. Neither has ever been the same, although the husband has recovered acceptably.

For the past year or so, I have enjoyed biking frequently for fun and exercise. I would be doing so now except I have lent my $60 pawn shop bike to a friend who had no transportation. Not knowing when I would ever see my bike again, I turned my attention to the E-Bike, sitting forlorn and flat-tired in storage. With the heavy battery removed, and the broken parts held in place with a bungee, it actually rides pretty well. I was pleasantly surprised this week on my first outing with it. The seat had shock absorbers, the handlebars straightened up nicely, it went quietly, and unlike my pawn shop bike, the brakes worked. It’s a go.

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It’s still a pretty color due to hardly ever leaving the garage for years.

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A few covers missing, a couple bungees holding the empty battery compartment shut. It works.

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Some of the clip on instruments are missing but it still has a strangely “techy” look, I think. Looks are so important.

There is a satisfaction in bringing an unused thing back into use.  I also appreciate the back story of the E-Bike and the chance to think about other back stories, and the whole concept of histories and how they might inform the present. Just sayin’, “back in the day” might become a frequent theme.

How to Get Over Your Winter Cold

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and by that I mean, your upper respiratory infection, your virus, your bacteria gone wild in your body with all the gruesomeness that goes with it. I know I’m leaving out a lot of details.  Be grateful.

The husband and I got our winter colds together, more or less, this year which actually makes things convenient in a way.  We get quarantined together and only for half as long.  And exciting because it is so rare, we share the same interests, which are mainly, tissues, Airborne, and cough meds.

I hold certain over the counter cold medicines in high esteem. King of the bunch is the red mixture of acetaminophen, dextromethorphan HBr, and doxylamine succinate known as NyQuil.  It has to be red flavored.  I always keep this on hand as well as a good supply of DayQuil for days when sleeping is not a good idea.  In spite of all my admiration of meds I’m really kind of a natural remedy girl, and my most desired natural remedy is sleep.  Sleep always helps me feel better, and NyQuil always helps me sleep.  That is the connection.

We ran out.

The husband was at the big box pharmacy yesterday and decided to help out by seeing if I needed anything.  Should he get some cough medicine, he wanted to know.  Yes, yes, good idea.  Get some more NyQuil. Make sure it is Nyquil.  We have DayQuil.  We have everything except NyQuil and I like the red kind.  Did I say all this?  I’m not going to swear that I did because it would only cause disagreement, but I think I did.  And he certainly knew what  we had before.

We are now well supplied with cold and flu remedies.  We have NyQuil (green), two kinds of Robitussin, plus all the non-sleep cough medicine I had before and a new box of DayQuil.  At the rate of one bottle per cold season we are set for the next six years.  And the husband will get to drink all three big bottles of NyQuil because that green flavor (licorice?) won’t go down my throat.  The red kind is bad enough.

Live and learn.  We are both getting better, sleeping better, drinking lots of water and thanking God for bodies that heal, eventually.  Hoping everyone else is getting through the cold/flu season too and just a hint… your might want to do your own shopping for cough syrup if you’re as fussy as I am.  Just sayin’.

Ok, it's my own fault. I should have gone myself. This is only part of the stash...
Ok, it’s my own fault. I should have gone myself. This is only part of the stash…