Remembering Dad

It’s been five years since my Dad died. His was a rather sudden departure, and although it was traumatic for those who were with him, most of us agree that it was a pretty good way to die. He was comfortable in his living room chair, talking with Mom… and then he wasn’t.

It hasn’t been every year that we’ve celebrated his memory but somehow it seemed fitting to do it in 2020. Earlier in the week I had asked Mom if she wanted to do something special to help her get through the day. It was a couple days later that she said she’d thought of something we could do. She wanted us to remember Dad as we ate a bowl of his favorite ice cream – maple nut.

Dad ate a lot of ice cream. Dad shared a lot of ice cream with others. His ice cream legacy will be the story of one of his grandchildren finding him late at night, sitting on the steps inside the garage (where the freezer was), eating ice cream from the pail. Of course, she sat down and had some with him.

So we shared the plan with family members and asked them to join us, wherever they were, at a convenient time for them. “Get some maple nut ice cream, and remember Grandpa Owen as you eat it. Take a picture and post it.” Some were able to do it, and others who couldn’t will be able to enjoy the pictures. I’m 100% sure that Dad would have liked to be remembered this way.

Death is strange. Memories are a gift.

There are some things we’ll never figure out. But, it’s okay.

Spring Is Real

Here in Wisconsin, spring isn’t just a date on the calendar. It’s much more real than that. After being in various degrees of frozen for nearly six months, big changes have to happen and they have to happen fast because winter’s a comin’. I think spring happened today.

Mom and I were sitting on her patio this afternoon when my brother called her.

“What’s the weather like there today?“

“It’s been pretty stable, in the 40’s and 50’s, ever since it stopped being in the 20’s and 30’s .” (Last week)

“Isn’t that the way it’s supposed to happen? It’s spring, right?”

“I guess it is. Shirley is sitting here with a T-shirt and no coat.”

That’s right. It was so warm today that I didn’t see anyone wearing a coat. Yesterday was a different story. I was out in the soon-to-be garden in my heaviest hoodie and a scarf when neighbors Bob and LuRae, also coated and capped, came up to gift me. He had bought too many lily bulbs and just didn’t have room to plant them anywhere. He wanted to give them to me. Last year he did the same thing with daffodil bulbs.

I said yes. I had a pot with nothing in it but dirt and lilies would be nice. He came over with a rather large box. When I inventoried what he had given me I found eight bags of 10, with large sprouted bulbs begging to be planted. I spent a couple hours putting them around the lampposts of the twelve condos in our development. That’s a lot of digging.

As much as I shovel snow in the winter, I dig at least as much dirt in the other months. The major project is the garden. It has to go in pretty quick or not everything will get ripe before summer is over. But not too quick because it might still freeze at night. I absolutely know that I could walk over to Walmart and spend far less for the same amount of food, but I tell myself that the food is better and I need the sunburn and sore back exercise. I mostly try not to think about the logic in gardening.

I’ve only been “up north” for one “garden year” so far and didn’t have time to start perennials, so last month I ordered asparagus plants from Gurney’s. I was about to order the world’s most expensive raspberry plants from them too, when a friend let me thin her patch for free! I probably won’t get any asparagus or raspberries to eat this year but it will be good for me to exercise patience. It’s all about the future…

This morning Mom and I did the most definitive spring thing. We went shopping for flowers. We actually traveled 39 miles to a fabulous greenhouse where we bought almost nothing because the prices were… pricey. We stopped at two other establishments on the way home just because flowers are SO BEAUTIFUL! I bought, and got them all planted this afternoon. I have big pots of petunias, coleus and herbs on the patio. I am stiff, sore and a bit dehydrated.

It’s spring and spring is real. Putting my feet up now, just sayin’…

Reflections on A to Z 2020

I’ve done the A to Z Blogging Challenge for six years now, and enjoyed it every time. I’m proud that I’ve finished them all, because learning to finish a writing project was my main goal. I was especially grateful this year to learn that I could take a theme, caregiving, and make a cohesive body of information, based on my own experiences. That’s almost like writing a book, and I did it! (A very short book however…)

I truly felt “cheered on” by a group of readers who read most all of my posts. This was valuable since it showed me that my topic did have an audience, and was possibly serving a need. All the comments were kind and helpful, and they weren’t even all from my family and relatives! So good. (That is not to say I don’t appreciate comments from family too – that didn’t come out quite right.)

I think the challenge was well managed and designed this year. The sign-up, master list, badges were all easy to access. Perhaps the smaller number of blogs participating made it seem more streamlined – it was easy to go down the list to find topics I was interested in. I was surprised by the number of blogs I went to read and found they weren’t taking part.

Thank you so much, organizing team and readers. Appreciate you all and hope to read more of you on the Road Trip.

Rest

This post is part of a week long Instagram writing challenge, with the prompt “rest”. But, (confession) I don’t really get Instagram yet so I’m putting it here too, where I can find it.

These peaceful scenes were photographed shortly before sundown very near where I live. Nothing speaks rest to me like nature when it slows down at the end of the day. The planet we live on is designed to have cycles, and so were we – cycles of work and rest.

Science bears this out. Circadian rhythms respond to times of light and dark, and there are even longer cycles like the weekly and seasonal cycles. When we tamper with these natural rhythms, we are walking away from our own health. If we fail to give ourselves the rest our bodies need, they will force us to rest by getting sick.

I’ve done my share of pressing the limit when it comes to lack of sleep and unrestful activity. Sometimes (when I was much younger…) I even felt cool, kind of grown-up, and invincible when staying up all night. I would laugh at the need for sleep. I’m over that. My body has lost the ability to adjust and it is telling me in many ways that it wants no more abuse.

Rest is more than sleep. It is stopping your work. It is doing something different, taking a sabbatical, clearing your mind, getting ready to work again. Those who write might even need to rest from that. New ideas come from a rested mind.

Take it from God, what better example. Even he rested from his work, not because he got tired, but because rest is good.

And if you’ve done nothing else during this pandemic, I hope you’ve rested, some.

Rewrite

My blog has been my stress reliever, my “learning place”, my experiment for the last eight years. I have written a lot, and the strange thing is I don’t remember everything I’ve written. There are things in there that I don’t recognize as my own (but they have to be). Sometimes I read a post and think it was really interesting, or funny, or insightful. Other times I read and think “I’ve got to get this out of here quick, so no one else will stumble upon it”. Time for a rewrite.

What a project! But I’ve found that I like it. It’s an historical review of life “back then” for one thing. Many of the posts are timeless and can be re-purposed and put back on the blog with a new freshness. And, believe me, having something to start with makes it a lot easier to write. Rewriting is a skill of its own – a skill that I’ve improved in over the last eight years. It’s encouraging when I can easily see improvements and make them quickly.

Spring is all about fresh and new. Rewriting is too. Let me at it.

Family on Mother’s Day

We don’t all fit on one screen, and my family will know this isn’t our Mother’s Day screenshot, but it’s us the time before.

This has been such a strange day, happy in many ways, but with a pervasive sadness that feels almost like a home that I keep coming back to. In a way, I value the sadness too because it’s a precious emotion, indicating depth of feeling. I pretty much only get sad about things I really care about, and mostly those things are relationships.

We got word that my Aunt Irene (but we always said “Auntie Irene”) died today. She was 94. It was exactly two years ago on Mother’s Day that her husband, Uncle Bob, died and I think she has been trying to join him ever since. She was the last of my father’s siblings. One more generation of that family is now gone. They were all interesting, loved, important people to their children and grandchildren, nieces and nephews. At times I was very close to Auntie Irene and I wish now I had been more attentive to her in these last couple of years. Some things about being 94 are probably okay, but when you consider how many of your friends aren’t around any more at that age, it has to be lonely. I am sad thinking about the loneliness of old age.

One of my nieces who has miscarried and lost her unborn children was gifted, anonymously, a beautiful Mother’s Day orchid with a note attached. It reminded me of several women I know who grieve on this holiday. It reminded me that I used to feel that way, and I want to hug them and cry too. These things would not hurt if we did not love. But loving is worth hurting.

Lastly, nothing speaks depth of family relationship like a reunion, so we all braved technology and Zoomed together this afternoon. (Well, almost all of us – it’s bittersweet when some of our special adoptees can’t get on the internet highway and join us.) It’s always a wonder to me, to see the faces appear on my screen, one after another – the family matron (my mom), the elders (my generation), the next tier down (all the cousins), and the littlest kiddos who have no idea what they are part of. North to south, east to west, we are all over the country but together on the screen because something tells us it’s important. Our stories are not all perfectly happy, but we are together, trying to build depth into our relationships. I look at them all and want to tell them “Please, don’t ever let loneliness have the last word. You have a family. You belong and are loved.” But I might not have actually said that. I should have.

So I hope that this day so closely connected to family relationships was a good day for you. I hope you know that whether you are a single, or a couple, or a whole tribe, you are capable of family relationship because you were made to need something of what that offers. A good Creator would not have created us with desires that couldn’t be fulfilled. It wouldn’t make sense. Have hope and love those around you with all your strength. Make family a reality.

Small Stories Series

Life produces many small stories. Being small doesn’t make them “less than”, except maybe in word count.

Static Electricity (or What Is That Doing Out Here in the Field?)

I will start by saying that I don’t have a clothesline so I dry our laundry inside with an electric dryer.

It was about a week ago in early spring, so early that neither Mom nor Dennis, the husband, had been outdoors much. We were a month into the COVID 19 pandemic and tired of it already. Snow had just melted and the fields were bare, but it was a warmish , breezy evening.

We had just finished a “tea party” with family and weren’t quite ready to quit having fun. In a rare burst of energy the husband decided he wanted to walk down past the barn and to the pond to see whatever could be seen. Off he went.

Mom and I had the golf cart out for the first time of the season and we headed out past the pond to tour the wetlands and meadow. It was exhilarating, partly because the wind was still chilly. We did one big circle and headed back. I could see the husband had passed the pond and was making his way toward some neighboring condos. He had been in one of those “do it myself” moods so I decided to get Mom home first and then come back to see if he was tired and wanting a ride.

We had just crossed the bridge when I saw something on the ground ahead of us. It didn’t look like debris and it hadn’t been there when we passed by earlier. It looked like clothing of some sort.

Coming closer, I thought it looked like underwear! How strange, I thought.

And closer still, it was underwear, and in fact, it was MY underwear. What!?

I swerved over and snatched them up, and once again I noticed the husband in the distance, his pant legs flapping wildly in the breeze. There was no other way those panties could have made their way out into the field except he must have had them. They must have been stuck inside his pant legs and the wind had shaken them out as he walked. He never noticed them stuck in his pants and never noticed when they left either. His “do it myself” mood had started earlier when he had taken his shower and had chosen his recently washed and dried pants to wear. Let’s just say he’s not a real careful dresser. (But I would so have noticed if someone else’s underwear had been stuck inside my pants…)

For a minute it looked like Mom might fall out of the golf cart, laughing as hard as she was. I figure with the pandemic and all going on, God knew we needed some comedy and decided putting something common in a very uncommon place would fit the bill. (At least it was some of my prettiest underwear…)

Yep, right out there in this grassy field…

A to Z Challenge: Z for Zeitgeber

The last letter of the alphabet! This was an interesting and challenging experience, as always, and I am so grateful for all the connections and comments. Thank you all for reading and encouraging me, and other caregivers.

Zeitgeber

I ran across this interesting word as I was studying a book called “The Paleo Approach” by Dr. Suzanne Ballantyne. Zeit means “time” in German and geber means “giver”. A “time giver” is “anything that influences your circadian clock”. Your circadian clock is all about your body’s routine. And routine is one of the most important tools of caregiving.

Examples of zeitgebers are the light and dark cycle, food intake and activity. Regular times for meals, for exercise and for sleep are beneficial to all of us, but especially for the very young, the elderly and for those with dementia. Being able to depend on a routine gives the impression that things are under control, and having any sense of control is comforting.

Routines

Routine is not the easiest thing for me as a caregiver. I am the queen of spontaneity, and will usually go out of my way to break up a routine. But now, I have things I do pretty regularly. One of the most important reasons I’ve developed routines is because they help me not to forget stuff I would otherwise probably forget. Routines also cut down on decision making because we have already decided what and when. And of importance, the routines help my husband know what to expect at various times of the day.

Circadian Rhythms and Sleep

The light/dark cycle is probably the most important zeitgeber, and the one I have the most trouble with. Being outdoors in sunlight during the day, and in the dark at night greatly affects circadian rhythm, which in turn affects the immune system, mental ability, mood, alertness and energy level. Ideally, the husband and I should get as much light exposure as possible during the day. We both should cut down on our screen time at night as well. Blue light from our computers, phones, TVs, and LED fixtures signals our bodies much like daylight does. It suppresses melatonin production. Blue light not only signals through the retina of our eyes, but even our skin has sensitivity to it. In contrast, low light and darkness signal the production of melatonin and bring on relaxation and sleep.

It is dark outside. Due to my circadian rhythms, I am getting sleepy. Take care of yourselves as we go through these strange times. Good night to all.

_____________________________________________________________

This evening Dennis, my husband, came out where I was sitting and apologized. Not knowing what he was apologizing for, we talked and I discovered he had read the X post. He was saying that he was sorry for making things hard for me. I was surprised that he had not read other posts this month, even though he was aware that I was writing on the subject of caregiving. He was sweet, and humbly aware of the impact that his illness has had on me and on our relationship. It’s moments like this that make me know that he is more than just my patient. He is still very much my husband.

Forty-seven years and counting…

A to Z Challenge: Letter Y for Yelling

Well, it’s not just about yelling. It’s about communicating. When communication is not easy, and is possibly frustrating, yelling can be involved and it begins with Y. I am an opportunist when I have to be. Most of these problems have to do with diminished hearing, poor eyesight, and diminished attention.

Yelling makes people look mean.

Is there a lot of missed communication going on at my house? Sometimes it feels that way. Here are some common scenarios…

The husband thinks I’m listening to him (he may have seen me close by) and starts talking to me while looking elsewhere. He doesn’t know I’ve left and am two rooms away. When I realize he’s talking away to an empty room, I come back, frustrated and have to ask him to repeat.

In the morning when he comes out for his cup of cocoa and sits in the corner recliner. He doesn’t usually have his hearing aids in yet. I ask him what he wants for breakfast but he doesn’t hear. I raise my voice until he tells me I don’t have to yell. We both feel embarrassed.

In the morning he comes out for his cup of cocoa and he DOES have his hearing aids in. I ask him loudly what he wants for breakfast and he jumps and puts his hands over his ears.

“What?! You didn’t tell me that!” This is often said about something that was being discussed in conversation with a group of family or friends. I can understand that it’s hard to admit (or even know) that you’re not hearing what you can’t hear. It’s easier to fake it and assume that someone will get your attention if it’s important. But, dear hard of hearing person, no one knows you haven’t heard…

If you’re caring for an elder, it’s safe to assume that most everyone who is up there in age has some degree of hearing loss. Okay, I don’t have young ears either.

Hearing in noisy environments or over a phone are other risks to good communication. My uncle, who hears fairly well in face to face conversation, gets a little nervous with phone conversations. He sometimes asks me to join him on calls with his financial advisor, not because I’m a financial genius either. He wants to make sure he is hearing things correctly. And who hasn’t faked it in a noisy restaurant? Nod and smile, that would be me.

To make matters more complicated, people who are hard of hearing often hear their own voice through bone conduction. It sounds very loud, so they talk softly and can barely be heard. The husband does this with the result that he can’t hear me and I can’t hear him either. Somehow, even when I’m not angry, having to yell makes me feel like I’m being mean. I don’t like yelling.

We are getting better at communicating. Here are some things we’ve done to lessen the volume and make sure important things are heard.

1. I try to get the TV volume or other noise, turned down before I speak.

2. I look at the person I’m talking to so I know if they are listening, and if they know I’m talking to them. I try to get my husband to do this as well.

3. I communicate plans for the day, important news, etc… directly when there are no competing voices. I try not to assume something has been picked up from conversations with others.

4. Whenever I see confusion, I ask questions to see if there is a misunderstanding.

5. I often leave a written note.

So, back to yelling. I don’t like it. It doesn’t make for good communication and most of the time, even if I’m not mad or frustrated, it makes me feel like I’m being mean and ineffective as a caregiver. When I’m well rested, in my right mind and remembering my above mentioned tips, the communication is much improved. Just sayin’…

A to Z Challenge: X for Exasperated

(Ex is how you spell X, so this counts.)

Today I am exasperated. It’s a degree of frustration right before one’s head explodes. It happens fairly often in my caregiving world, particularly with my husband.

It’s not that this never happened before, when he was well. We were a fairly normal couple and we had our ways of getting past the rough times and keeping peace. We were both responsible and expected to act like mentally competent adults. Now, as with any situation where a spouse has a mental deficiency of any kind, doubt enters the picture and roles may change.

Many days I am so conscious of having to watch over our world, unaided, while my husband (my patient, is what it feels like) does what he can do, sits and watches TV or looks at his phone. When he wants to talk to me about his angst over politics or his ideas of how to conquer coronavirus, I want no part of it. I want him to do some meaningful task that would help get chores done. I want him to show concern about finances or make a “to do” list like I have to do most days. It exasperates me to have a live-in patient instead of a husband.

And at the same time I begin to feel very guilty for being angry. I am not the only one missing out on our retirement plans. He is sick and I am well, at least for the moment.

For these reasons, caregiving for a spouse, or a live-in family member is not easy emotionally. It usually starts out being a 24/7, 365 days a week job, until burn out sets in, so it’s not easy physically either. I need support and this is how I get it.

1. I have identified people that I can talk to safely, even when frustrated – ones that are regularly available to me and don’t mind if I vent.

My physically present support group that I could not do without.

2. I have joined a couple online support groups. They understand what it’s like and have encouragement/advice for all situations. They always show me I’m not alone in the way I feel.

  • Facebook group: Lewy Body Dementia Carter’s
  • Facebook group: LBDA Care Partner Support Group

3. I have a place I can go, in the house, to get away to watch a movie or read a book while the husband is occupied or napping. It’s a true multi-function “she room”.

4. I haven’t had to do this, but if needed I would hire help to cook or clean, or just be in the house for a few hours while I escape.

5. I try to spend time with my husband doing something we both can enjoy (like reading a good book) to give attention and alleviate guilt (mine).

6. I give myself grace to not be perfect, but to try again to do a good job and to love well.