I'm still finding out what I'm about but I think it has something to do with writing and connecting with people and serving God. I don't believe I have to understand it all in order to do it and am pretty content with what comes my way, day by day. I believe there is a God who created all of us, the world we live in, the science we think disproves Him, well, everything. I know my natural tendency is to think I don't need God and I need to be saved from that. I know I need a savior and I'm thankful I have one. The small glimpses I get from the here and now of what my real home is going to be like when God restores it all - that's what fuels me, stirs my sense of adventure, and keeps me going. Until then, I write about what is.
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.
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.
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.
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.
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…)
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.
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.
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.
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.
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’…
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.
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.
You will believe this more as you age, but truth is that something as simple as foot care gets really difficult when you can no longer bend over and get close to your feet. Problem feet should go to a podiatrist, but most elderly people, like my mom and my aunt, can be cared for at home quite easily. I soak their feet for a few minutes in a basin of warm soapy water (and I always hear “oh, that feels so good!”) then gently clean under the nails and clip them. I finish with a foot and lower leg rub with lotion. If you’ve ever had a pedicure, that’s basically what it is, without the polish.
Your person’s feet are pretty important and it is good practice to look at them carefully. The best time is when you are washing them. Look between toes for cracks that indicate fungal infection, which is easily treated. Check heel and ball of each foot for callus buildup and remove some of that dead skin with pumice stone. Toenails that get too long are like having little daggers on the feet. They get caught on pant legs, wear holes in socks and even cause bloody scratches on legs. That’s when I usually get requests for some foot care.
Circulation is often poor in the lower extremities which leaves feet open for pressure sores on the heel and other bony parts. I know what it’s like when I start to get a blister from shoes that rub, or when I stub a toe and rip a nail off. It hurts, but your elderly person may not even feel the pain if they have neuropathy. It is a tragedy when an injury progresses to an infection, or even worse, to gangrene. Good caregiving means catching these problems early (even better, preventing them).
There is a surprisingly spiritual side to taking care of feet, which usually rank low on the list of body parts that get cared for. It’s an act of service to wash and care for another person’s feet, as Jesus did, recorded in the Bible. It’s also kind of hard to let someone do such a common, lowly act for you, which is how Peter felt when Jesus did it for him. Maybe it’s just me, but I can’t help but think of that when I’m helping someone in that way.
Another benefit I’ve noticed, as I sit on the floor with someone’s foot in my lap (I do it that way but you can be a bit more professional if you want). My people talk to me. There’s something that happens with caring touch that makes others feel safe, and open. Maybe it’s just because they know I’m an audience that won’t be jumping up and running away any time soon. Talking is therapy. It is good and requires nothing but that I listen.
Caregiving for other’s feet has made me aware of how important my own feet are to me. I have to take care of them if I want to be mobile. Yours are important to you, so take some time and give them some care, caregiver.
I wrote many of my A to Z posts back in March when coronovirus topics were just ramping up. Since then I have begun to weary of anything virus related, and so for my own comfort I am trashing my previous topic “Virus” and opting instead for something I care more about “Vagus nerve”. How odd, you may think, but I am okay with you thinking that.
Caregiving for people with dementia is one of the hardest and most frustrating roles. It is only going to involve more people as time goes on. Here is your daily dose of statistics:
– 5% of people over 65 have dementia
– 20% of people over 80 have dementia
– 60% of those having dementia have Alzheimer’s
– 20% of those with dementia have Lewy Body Dementia
So you can see that a sizeable number of people are going to be affected both as victims of dementia and as caregivers. It’s pretty important that general knowledge about these conditions increases and that is part of my aim in sharing my caregiving life.
Research is bringing much to light about how dementia develops, its causes, and its treatment. I am amazed in particular at the early signs and symptoms that are often not recognized as such. How much could be avoided if we knew early on what our bodies were trying to tell us.
So, what about the vagus nerve, you are probably wondering? This summary article (click here) gives a good overview of this most important nerve in our bodies. It’s divided into right and left to serve different sides of the body, but spoken of as one. It is the longest nerve in the autonomic nervous system and the major parasympathetic influencer. It regulates heart rate, blood pressure, sweating, digestion, and even the mechanism of speaking. That’s a lot of essential stuff. It is the 10th cranial nerve. It starts up there where all the dementia problems start.
If there were definitive tests for dementia, ones that could detect it early, before it had devastated cognitive areas of the brain, how great would that be? We would be more concerned about chronic constipation, hard to control blood pressure, low heart rates in non athletic persons and other symptoms that get tossed into the “old age” bucket and treated with a pill.
The husband had all these problems years before his cognitive symptoms, the ones that got his attention, began. I remember the many blood pressure medications that he went through, and the multiple times he would react to them in extreme ways. He would have drops in pressure that would leave him dizzy and weak, and spikes that would alarm us. This continues now and is one of the fluctuations I’ve come to expect from LBD.
And I don’t know what his heart rate does to him but I know that having 50 or less beats per minute would make me feel strange. He tires so easily and complains of dizziness on a regular basis.
I’m not into writing about other people’s digestion or bowel habits but don’t we all know what problems can arise in these areas?!! Think honestly. There’s also the difficulty that dementia victims have in swallowing and speaking that results from impairment of the vagus nerve. There are days when my husband knows that it feels hard to swallow and he needs to be extra cautious about what he eats and how fast he eats it. I notice his weak voice and how some days it will be unexplainably stronger, making him sound like his old, normal self again.
Research is showing that up there in the brain where it all gets important is where we find protein deposits, call them plaque, Lewy bodies, or whatever. The vagus nerve is commonly affected and is responsible for many early signs.
What I say to myself about all this, and what I say to readers is that you can change what is happening in your body by lifestyle changes – simple things that take will power and determination but cost little and mean a lot over time. We cannot rely on pharmaceuticals to come up with remedies because it is not in their business interests, and they are businesses. We are people and we must investigate and do what is in our own best interest, whenever we can. We are the guardians of our own bodies. When we choose stress, poor diet, lack of sleep, and a multitude of other poor choices, we get the bad things that come with those choices. It can be sad.