Tonight I am at the sewing machine. I’m remodeling a dress for North Carolina daughter. I can’t be sure it will fit her but I have a fair idea of what is needed. I’m praying with every seam that it will turn out well. I think the prayer will be answered and I’m sewing with confidence.
The material is satin. It’s creamy white and soft and surprisingly different from today’s satin, because it is 70 years old. Seventy years ago, my grandmother sat sewing with this same fabric. She was a skilled seamstress, making a wedding dress for her daughter. Her daughter was a different size than my daughter so I have taken the dress apart to resize and change the design a bit. I have to admire her work. She was careful, and gave attention to details. It was a beautiful dress. I have seen it in the pictures of my mother’s wedding.
Expectations of what wedding dresses should look like have changed so much from 1950. I don’t know what they are making them out of these days that they should cost thousands of dollars, but I know the one my grandmother worked on was made out of love (and satin, and lace).
The work on this project has been an emotional experience for me. I take apart a seam and realize that was thread put there by her machine. Her hands touched the fabric in this very place as she guided it under the needle. She probably peered closely at that button as she sewed it on, just as I am as I remove it. We are linked, she and I, by many things that aren’t tangible, but this dress can be touched and felt. The whole idea is kind of eerie, almost sacred, to me.
And our daughters, the one who wore it so long ago and the one who will wear it next month, they are also linked by the same dress. Mothers and daughters, four women, seventy years, one dress. I love it. It has specialness that can’t be bought.
But as I said, we will see if it fits and seems appropriate for the ceremony. At the least, it will be in a picture. And to some of us, it will look beautiful. Just sayin’…
I was late going out for a walk yesterday and was nervously watching a drift of storms on the weather radar. Sure enough, as soon as I got to the trail head a light rain started.
I thought it might quit so I stayed in the truck and made a phone call to the North Carolina daughter. We were ten minutes into our chat when a man came out of the warming cabin and approached the truck. He could see I was on the phone so he kind of stood there looking nervous and waiting. When I could see that he wasn’t going away I told Julie I had to hang up and why. She said to call her back in five minutes or she was going to send people to rescue me.
I totally get that, and would have said the same to her. But isn’t it a sad thing that we all have heard of so many disappearances, abductions and murders? Isn’t it sad that we have to think about that and make provision for the possibility? Yes, it’s very sad. And that’s why I ask for God’s protection over my day and everything that comes with it. And then I trust him to give me something – instinct, intuition, a gut feeling, an angel. I don’t care, I just trust.
I might have had a few red flags initially, mostly because I had no idea where the man had come from. I had been there for quite a while and all the cars that had been there when I came had left when the rain started. Had he been in the cabin all along? Doing what?
When I considered rolling down the window so he could speak to me I looked at him closer. I began to dismiss any wild ideas when I saw he was fully decked out in his mountain bike gear, and had obviously been riding hard enough to break a sweat. He looked like he had a request. I couldn’t get the window down without starting the truck, which I didn’t want to do. I opened the door instead and stepped out.
He explained that he had been riding on the single track trail and a branch had gotten caught in the derailleur of the bike and it was broken, beyond his ability to repair it. He had walked a mile with the bike hoping to find someone at the trailhead and had entered the cabin on the opposite side from where I was parked. He had gone riding without his cell phone and was asking if I would call his wife to come get him.
We stepped into the pavilion to get out of the rain and I made the call, holding the phone so he could speak to her. But she didn’t pick up – the unfamiliar number that is usually a robo call must have thrown her off. He left a message. He was clearly in a bind so after hanging up, I asked him where he lived. It was only a few miles away and here I was with a truck – I had to offer him a ride home. I wasn’t going to walk in the rain anyway, so why not?
He was polite and genuinely grateful. He asked if I was concerned about taking him with the COVID 19 precautions. He offered to ride in the back seat. I was feeling more and more sure he was a nice guy and in no way a threat. We loaded up his broken bike and got on our way. We talked all the way to his house. He knows that I hike and volunteer for the Birkie ski race. I know that he has skied the Birkie 24 times and has retired in Hayward from Minneapolis. I dropped him off at his log cabin home in the woods, completely forgetting that I was supposed to call my daughter in five minutes, or else…
When I checked my phone on the way home it was full of calls from the daughter. I had scared her and she had been busy alerting my brother. The sherif was next on her list. I had gotten back to her just in time.
Talking about this experience later with Mom, I had to admit that all the reasons I had decided to trust this guy could have been fabricated. It’s true that people bent on evil go to great lengths to appear trustworthy. It’s true that this small town, where it’s hard to find a stranger, is much like other places where unexpected crimes are committed. It’s true that it’s somewhat my nature to take risks.
But it’s also true that the art of being neighborly is an endangered item and needs to be preserved. Mom has a well worn sign on the freezer in her garage “Let all beings be filled with kindness and compassion for one another.” All beings. Filled. I think we’ve got a way to go.
What is onethingI could do, right away, to be a kinder, more compassionate person to a neighbor?
As I was scrolling through my Facebook feed I came upon an ad for face yoga and a small survey. One of the questions was something like “what is the first impression people get of you based on your facial expression?” I rejected happy, depressed and several others and finally settled on serious. But when I asked Mom what word she would use to describe me, she said “tired”. I’ve been thinking about that ever since.
In spite of the fact that if left sitting and unoccupied for more than three minutes I will fall asleep, I have not often thought of myself as being tired. In my mind, I am always up for whatever is suggested, ambitious, energetic and ready to go. It’s actually alarming to me that people see me otherwise. What if after I’m gone, when they’re wondering what epitaph to put on my stone, they just settle on “She was tired.” What a legacy.
The result of this scare is that now I’m often aware of my facial expression. I’m telling myself to raise my eyebrows and open up my eyes. I’m thinking happy thoughts and hoping they make the corners of my mouth turn up instead of down (their natural direction). I stop short of doing “fish lips” because that is the one thing that looks so unnatural to me that I can’t abide it. As the face yoga lady says, “there are lots of muscles in your face. Why would you not exercise them?”
You can see why face yoga would be interesting to me. I want my face to stay functional, to show a variety of emotions easily. I want people around me to be able to know that I’m thinking kindly of them and find them interesting. I want to look peaceful and non-threatening. I think of how important that is in this day and age when we hear of people being arrested/assaulted just because of a perceived attitude – the expression on their face. I want it to be clear that I’m not up to anything nefarious.
My first impression of tiredness probably started years ago. I’m putting my hand written journals into digital form (what a project!) and a repeated theme over the years seems to be pain and fatigue. There’s this entry from 2007 that sums it up pretty well.
“I would say I’m about as miserable as a person can be who has nothing seriously wrong with them.”
Is it possible that years of muscle aches, joint pain, headaches, and crazy physical work and activity have gotten together and come up with a mutually satisfying expression – tired?
The face yoga lady gives me hope that I can take years off my tired face by giving those muscles some exercise. I can will to avoid the “nursing home look” of having given up. So, if you see me with my arm stretched over my head, pulling on the corner of my eyelid, while letting my tongue hang out, please don’t Baker Act me. I’m exercising. Just sayin’…
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’…
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.
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.