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.

On Mailing a Package: 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.

Today is the day I decided to end my stress eating and lose some extra pounds. Today is the 21st day in a row that I have faithfully studied my Spanish lessons. Today is the 182nd day since the husband had a stroke and became totally disabled. Today is the day a hospice volunteer came to sit with my husband and give me a couple hours to leave the house. That is what I want to write about.

I don’t get out much anymore. Since most of my friends were working and unavailable I decided to run errands around town. First on my list was getting a birthday package mailed out to a friend in Florida. The box already had an assortment of small treats in it but there was too much room left and Mom and I didn’t want to waste it. She felt popcorn would be the perfect filler. It so happens that Hayward, my hometown, has a Popcorn Store. That’s not so weird, is it?

I went there, wondering if it was open since it’s winter and there isn’t quite the tourist traffic we have in the summer. I was not disappointed. There were three cars parked outside and several men inside making popcorn, I guess. One of them came to me as I wandered the popcorn showroom and offered his assistance in finding something “not too sweet” for my diabetic friend. He was the owner, I believe, and there was a distinct “Santa Claus-ishness” about him. Probably the white hair and beard.

I bought a small bag of Main Street Mix for my friend, and although this is the first day of my weight loss program, I added a bag of Kettle Korn for myself (to make it worth his while to wait on me). I noticed three larger, unlabeled bags of popcorn on a table and asked what they were for. He picked one up and said, “It’s for you!” He couldn’t have known about my near addiction to popcorn, could he?

It was their premium white popcorn mixed with mushroom popcorn, which has nothing to do with real mushrooms. Mushroom popcorn is noticeably bigger than other kinds and has a beautiful pale yellow color. It’s going to be delicious. I left there feeling like God had smiled down.

My next stop before the post office was at Lynne Marie’s candy shop. Yes, my friend is diabetic but they have sugar free candy there and I know she likes it. There was room for some in the box.

Lynne Marie herself was working in the candy kitchen and came to wait on me right away. She pointed out some sugar free chocolate covered almonds that I thought would do nicely.

We started talking and I got around to telling her who I was and who I was related to. Not only had she gone to school with my brothers, but her family had bought a cabin on Round Lake from my husband and I years ago. It had been our first (and last) investment property. We felt like old friends by the time we were done with this conversation. It is the first day of my weight loss effort, but I bought a pound of her cherry nut fudge anyway. We’re friends now and it seemed like the right thing to do.

On to the post office where I finally chose a priority mail box and packed all the presents in it, surrounded by happy birthday tissue paper and a couple of cards. Mailing things always seems like such a daunting chore, but it isn’t that bad if you just make yourself do it. I felt like I had accomplished something with my time, and gotten to know my hometown shops a little better.

I love my small town. Consider this a positive review if you’re ever in Hayward looking for popcorn or fudge. Main Street Gourmet Popcorn, Lynne Marie’s Candies

I might have seen popcorn and fudge on my list of allowed foods, yeah, I’m pretty sure…

We Made It

Feature image is of one of our early attempts to replicate our wedding cake. It was a much scaled down version.

Somewhat the worse for wear, but we have made it. We have experienced, often enjoyed, sometimes survived (barely), and definitely been blessed by, fifty years of covenant marriage. Our covenant was with each other and with God. God’s part was, and still is, HUGE.

So much to learn

Back in 1973 we had no idea how different we were, in temperament, in interests, in long term goals, in relationship language. We were in college where our similarities were highlighted. We liked music, we actually went running together, we took time for dating, we had few responsibilities except to do well in school. We each had spent time in higher education – Dennis already had his PhD in Physics, I was part way through nursing school. At this point we both were aware that we were looking for a marriage partner. We were realizing that our growing relationships with God were making it hard to find people we were comfortable with. I have always thought that was the reason God brought us together. That desire to share a serious faith in God was at the top of the priority list. In that, we were well matched.

One of our graduations – 1974

So, for each of us, God helped the finding, the deciding, and the living it out. These years have shown us how we differ, for sure. I have often wondered why God thought we could make it, but he knew things we didn’t and was willing to help us, change us and grow us.

The man God chose for me is a very unusual and interesting person. Because of who he has been I have never worried about infidelity, being impoverished, never been threatened by addictions (unless you count addiction to work), never dealt with meanness or deliberate selfishness. During tough times I knew that we were both counting on God to teach us and help us through. God was always pointing out options, and none of them were ever divorce. I am so grateful.

Today I am not sure this husband of mine knows it is our anniversary, our 50th. He is severely disabled and at home with me, in hospice care. How hard this must be for him, and yet he is uncomplaining. He still exhibits his love for God, for music, even for me. He doesn’t remember much about where he is or what has happened to him, but he remembers who to call out for when he’s confused. I remind him he can still talk to God even when that’s all he can do. I tell him that we are not in China (and have never been), that we are in Wisconsin, that our condo is a safe, pleasant place, that the living room is now his bedroom because his hospital bed doesn’t fit anywhere else. He says okay and for a while he is fine with all that. He says that if I will turn off the tv and the lights he will go to sleep, and puckers up for a kiss.

A couple months ago I told him he had to stick around until January 14th, so as not to cheat me out of saying I had been married 50 years. I was uncertain he would make it. This morning we have spent precious minutes going over that day 50 years ago. He remembers the snow falling and who was his best man. Today his memory is clear, maybe better than mine. Funny how that works. Happy anniversary husband. Happy anniversary to us. We made it.

Just realized I went through this whole post without mentioning the word “love”. How crazy is that? Love you husband.

The Last Day (of 2022)

My “second brain” planner

Most every year, during the month of December, I carry two planners around with me. One is for the present year, and one is for the year to come because I am often planning ahead. That’s what planners are for. The last day of December often finds me closing out one and looking back over the fading year. I am doing that today.

The first half of the year was filled with quiet routine. The husband was housebound except for a few rides in the car and a restaurant meal now and then. We had a regular habit of reading in the mornings and sharing thoughts on what we’d read. Evenings often included him getting a wheelchair ride around the community.

I enjoyed the seasons – skiing in the winter, gardening in the spring and, most of all, planning for our August family reunion.

While family was arriving in late July, the husband had a stroke. Before that time I often wondered how his diagnosis of Lewy Body dementia would play out. He was obviously experiencing symptom progression but so slowly. I thought he was dependent on me in some ways, but little did I realize that being able to walk at all, and being able to eat are very independent activities. He was still doing those things at will, and amusing himself during the day with tv, phone calls, and books.

The stroke took all of that away. What followed was 25 days in ICU, 5 days in a step down unit, 49 days in acute care rehab hospital, 26 days in skilled care rehab, and 24 days in a nursing home. I’ve been sitting here with my planner counting up the days and marking the events. Most of these places were 90 minutes away from home. The last was only half an hour away. I’ve put thousands of miles on the car. I was weary of traveling and welcomed bringing him home. This is his 29th day at home, the 17th day under hospice care.

I am the primary caregiver, although we do have around 15 hours of care each week from CNAs hired privately. That is the summary of the second half of 2022 for the husband and me. It’s been a year to remember.

I can’t say that I have felt like writing much during this time. Occasionally it has been an emotional release. I might also like to have record of what we have gone through, at some later date when memory fails me. But much of it I would like to forget. Ten years ago I would not have imagined living the life I have now.

Should I say something about God and his part in the road we’re on? I see him as having been very patient and understanding of my fatigue, my not want to think deeply, or pray consistently, or immerse myself in scripture every day. In some ways I am numb to those disciplines in much the same way as a young mother with a house full of toddlers. God sees what overwhelms his humans. He sends me out on a “walk and talk” and I will tell you that the natural world has been my lifeline this year.

Lots of privacy out here and a real sense of who I am praying to as I walk. No denying he has a sense of beauty.

He sits with me when I cry. He gives me words for the husband when calming and encouragement is needed. When action is called for he has given me the thought of what must be done and the energy to do it. He has given me assurance about all the confusing and uncertain things – that I can trust him and decide not to fear, not to blame.

Many friends have said they are praying for us, and have reminded me of that often. That has weight with me. This is not the first time that prayer has been important to me, but still it is a mystery how God uses it. I want to be involved in that mystery, not necessarily to understand it, but just to have a part in it. Somehow God attaches great power to prayer and I love to see him be powerful , up close and personal.

I think it was good that we asked God for healing for Dennis. Why would we not? But it is also okay that he has not been healed because perfect health is not the only blessing God can bring with a hard experience. And we have always known that we will die at some time – it’s just the end part of being human. We will not waste the experience by becoming bitter or turning away from the most exciting relationship humanity has ever been offered. No, neither Dennis nor I feel any disappointment with God, or the way he has exhibited his friendship with us.

He has been “with” us. Sometimes he has been a peaceful presence on my walks. Sometimes he has sent others to us to spend time or offer help. I’m often told that I’m not alone and have felt like saying “Well, I feel pretty alone in spite of what you say.” But now I receive that differently. God puts that sentiment on the lips of others to remind me that he is with me, even when people are not. That’s enough. He is not named “Immanuel” for no reason.

The Week Between

This strange week between two holidays always has a distinct feeling about it. There’s drama on both ends of it that kind of leak into the middle. I never feel like it’s a normal week where normal work should be done. It feels somewhat like a holiday but because it’s five days, it needs to produce something worthwhile, something to mark the end of a year.

So, I cleaned the pantry. I didn’t just wipe the shelves. I threw away all the things I didn’t want to eat. Ever.

I threw away all the food with best by dates of a different decade, all the food that wasn’t it’s original color, all the things I didn’t remember ever buying, everything that smelled “funny”, and everything that was just too healthy to really enjoy. Pantry space is too precious to waste. It was a lot of stuff.

I still have probably more food than one person can eat, especially a person who doesn’t really like to cook more than once a week. I have been reacquainted with many things I had forgotten I had and now I know where they are! It’s like being made new again. Slimmer, neater, more organized me.

A good start on a singular week.

Look, but don’t judge.

Wisconsin Winter in Progress

All photos are of my back yard. A lovely fountain area crowned with lilac bushes, a central maple and a line of evergreens along the fence.

Winter in Wisconsin! A magical, frosted fairyland.
More winter. The magic is getting kind of heavy. Poor bushes.
Magic is fading. Bush survival measures needed.
Bushes? What bushes? Need less magic, less winter.

And so begins the FIRST MONTH of a long season. Enjoy.

Another Autumn Walk

I have to say that there are some stunningly beautiful , peaceful, quiet, memorable moments available to us, even in hard times. We must chase them down and live in them whenever possible.

This was actually an accidental take but I find it gets me into the walk quite nicely. Come along…
The place, Duluth MN, the Western Waterfront Trail (or Waabizheshikana if you have trouble pronouncing Western Waterfront) along the St. Louis River. At Indian Point Campground the Parks and Recreation Department is hosting a Glow Hike. The half mile trail is marked with glow sticks. It is dusk and light is fading.
The trail is not crowded, but there is a steady stream of couples, families with children in wagons and strollers, singles like me. People are talking quietly above the sound of feet on the gravel and leaf covered path. There is an almost reverent feel to it all.
It is the perfect time to catch the last light as it turns from warm orange to cool blue. Flocks of ducks fly low and glide into the sheltered marshes along the river. The sense of peace and grace is almost overwhelming.
Even the children, decked in their glowing accessories, find a place to sit and watch.
And we all take pictures because we think we will never again see something so beautiful. We don’t want to forget.
At the campground there are fires to roast marshmallows, cookies and treats for all, quiet conversation, smiles, extra glow sticks.
On the darker side of the peninsula, the lights of Duluth in the distance are almost like glow sticks
The wood around us is darkening, but the silhouettes of leafless branches still catch my eye. The trees are like living beings, exposed against the wide sky for the last few minutes of twilight.
But one last gift comes – a crescent moon among the tops of the pines. Could the world be more wild and beautiful in this place? I have to say that I don’t think it could.

Thoughts in the Night

So many thoughts come when I’m awake at night, usually waiting for a headache to resolve, praying because I cannot sleep. Those times are not necessarily bad, even very sweet once in a while.

People come to my mind, one after the other, and I realize how rich my life is with a wide variety of friends. Circumstances come to mind and I realize how complex the world is. Everywhere there are situations that make people suffer and cry. Some say that God, if there is such an entity, should step in and make it different. I’ve read in the Bible that it was different once, and the people of that time chose to trust their own decisions instead of the wise instructions they’d been given. Turns out that has been a prevailing trend ever since.

I’m amazed that there is so much hope, beauty, encouragement left in the world and it often steps into view when we need it most. That is not an accident. It’s the plan, to lead us back to the way it was, eventually. No one but an all powerful God is going to bring about a world that we will all want to live in. It’s too far beyond any world leader or government. I am encouraged because I see evidence of his forethought and control everywhere in nature. The question becomes, how then shall I wait?

What hope do you have if you cannot imagine there is a God who could be wise enough to solve our problems, who could dissolve the anger and hate in hearts, who could comfort the inconsolable and bring justice to both sides of every equation?

It is arrogance to think that because we cannot imagine something, it cannot exist. Our search should be for a better, more faith filled imagination.

There is more beauty this fall than I remember seeing, ever. Maybe it is just because I am driving through miles and miles of it nearly every day. It puts me in awe and strengthens me for the coming months of winter.

Thoughts I Didn’t Plan on Thinking

Today we are in my brother’s truck having a rare family road trip. It’s a change for me not to be driving. It leaves me free to look out the window at the gray, somewhat foggy fall day. The leaves are turning but the colors are muted and dull. There is still a lot of green out there so maybe we’ll have a better autumn brilliance in a few more days.

We are going to Eau Claire, a small city two hours away, to visit Chippewa Valley Eye Clinic. An ophthalmologist/plastic surgeon has been working on Mom’s right eyelid after removing a small basal cell carcinoma. This is our fourth visit due to complications of the surgery and repair. Mom has been struggling with ointments, painful eyes, poor vision and a sense of being really tired of this whole process. We don’t know what to anticipate today.

We have so many medical options for anything that goes wrong with our bodies these days. And things do go wrong sooner or later – that is a given. There are many decisions to be made because of this, some we make for ourselves and some others make for us. Swirling all around these calls for decision are issues like the value of life, quality of life, the comparison of one life over another, our views of death and suffering and medical accountability. It’s deep water and not fun to navigate.

This week I was sitting in my husband’s hospital room as he slept. In the common room where I could see and hear them, a family was sitting with their youngish looking son who had obviously been in an accident of some kind resulting in brain trauma. Like my husband, he was there for intense rehab and he was showing good improvement. I had a moment of guilt as I compared him to my elderly husband, with numerous comorbidities, struggling to show progress at all who was taking up a valuable bed in the facility. I felt sorry for the doctor who had to decide to move my husband out to a nursing home for rehab, and I understood what she had to consider. Because we’re having trouble finding another suitable place, he is still here at Miller Dwan in that bed.

My husband spends time thinking about what purpose God could have for him that he was allowed to survive this stroke. He is so tired, and to look at him on some days, you might think he was half dead already. I think he looks half dead, which makes me get busy waking him up, shaving the stubble, sitting him up and telling him to open his eyes before the next therapist arrives. I want him to look valuable, hopeful, worthy of the time and effort they are putting into his rehabilitation. He has indicated he wants that and I am his advocate. It’s a job.

I’ve asked him to think about what he would want if he were to have another stroke. Would he want to go through again what he’s experienced the last two months? He said he hadn’t thought about it. How can that be? He has so much time to think. So many things happen to us because we can’t imagine what we might have to decide, but now he knows and doesn’t have to imagine.

Last week there was an article in the local paper by Garrison Kieller of Prairie Home Companion fame. He also had recently been hospitalized and had experienced many feelings my husband recognized, a lot of mention of bodily functions. He had a good laugh when I read the article to him. Helplessness and dependency is not just happening to Dennis Dietz. And at some point, it could easily happen to any one of us.

I’m thinking about my future, although I know there’s no getting “control” over this realm. It seems to help me to do mental role playing around the possibilities, that way I’m not completely surprised by some of what actually happens. My choices play into my future so I try to make good ones (most of the time) but my best choice has been in believing that God is in control, and that he doesn’t plan on wasting any of my experiences. I can accept that hardship is part of life, and that circumstances can be beyond awful at times. Endurance is needed but there is help along the way in many forms. My belief is that the outcome is good, and it is sure. Just sayin’…