A to Z Challenge: Letter V for Vagus Nerve

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.

This has nothing to do with my post. I had a hard time finding pictures of the vagus nerve so instead you’re seeing this favorite barn picture that I’ve wanted to post for a long time. Like it? (It’s so wonderful to have my own blog where I can do whatever I want. )

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.

Aren’t you glad I didn’t write about ventilators?

A to Z Challenge: Letter U for Unusual Behavior

Dementia does a number on the brain, creating unusual thoughts and behaviors. It helps to know ahead of time what these can be. As a caregiver of my husband who has Lewy Body Dementia, I have joined a couple online support groups. I have learned more from them and from a couple of books than I have from any of our doctors. Doctors don’t have the time to educate patients about complex possibilities that may or may not happen to them.

Hallucinations

Often one of the early symptoms of LBD is hallucination. Interestingly, the things people see are usually not scary. They see small animals, children, or people who just sit and look at them. What they see is very real and vivid to them and they may or may not be aware that the visions aren’t really there. The advice I hear most often is that it can make the person anxious if the caregiver tries to argue them out of what they think they see. It is best to acknowledge that they see something, and then distract them.

I heard an interesting possible explanation of this at an LBD conference given by Mayo Clinic. It’s like a filter is missing or damaged in the LBD brain. The missing filter results in their dreams being very real and acted out when they are asleep (REM sleep disorder) and also allows dreams to sneak through when they are awake as hallucinations. I may not have explained the connection accurately, but there may be a connection between the two conditions of REM sleep disorder and hallucination – fascinating.

Hallucinations can also occur in the later stages of Parkinson’s Disease. My aunt has mentioned that she sees animals (cat, rabbit, etc…) once in a while but she knows they are hallucinations. It’s still distressing to her. The husband has not had hallucinations, or has not told me about them if he has…

Delusions

These are beliefs or impressions that are not rational. Last summer the husband had delusions about electricity causing some of his symptoms. We went to surprising lengths to dispel his theories, which were many. (Read a bit about that here.) Nothing worked and he thought he would die quickly (and it would be my fault if I didn’t explore all possible remedies). Fortunately, that period passed and has not returned. I am grateful.

Delusions can be very distressing to all concerned, and as with hallucinations, it doesn’t work well to try to point out that the person is delusional.

Capgras Syndrome

It’s sometimes called “imposter syndrome”. People in the support groups have such stories about this. Usually the person with dementia is sure that their caregiver, or someone close to them who they recognize, has been replaced by an imposter who looks just like them. Often the caregiver deals with it by leaving the room and coming back as themselves. They report that they got rid of the imposter. It doesn’t always work. There are a lot of strange variations to this one. So blessed the husband does not have this problem!

“Show Time”

Another common occurrence. At home there can be all kinds of problems and complaints, misbehavior, and general trouble which the caregiver has to deal with and tells others about. But when the others, usually family members or doctors, are present the person with dementia goes to great lengths to be normal. They put on a pretty effective act. Of course this causes others to doubt the caregiver’s word and that is frustrating. Not being believed sometimes means not getting the help the caregiver needs. We don’t have this problem either, thankfully.

Sundowning

I’ve mentioned this before, in my R post about rest. Some of the most desperate caregivers are those who have not been able to get their patient/loved one to go to sleep for numerous nights in a row. Of course they are exhausted. They have to be hyper vigilant that their person doesn’t leave the house (think special locks on the doors), try to drive the car (without a license) or make some unthinkable mess doing something they shouldn’t be doing. We don’t have to deal with this problem either.

My husband and I are noticing that he has been greatly improved since our bad month last summer. He has been given hope that his dementia can be reversed, largely through lifestyle changes and diet. We also pray and believe that God can heal. Something seems to be working and we are thankful for every good day.

We were having fun.
The husband and I acting demented.

A to Z Challenge: Letter P for Parkinsonisms

The logical P word for caregiving would have been “patience”, and it’s true that you need that, but there’s not much more to say about it, except that it requires some understanding. So here is another “p” word that we have been dealing with at home that makes patience more important.

Parkinsonism

It’s an umbrella term for a group of neurological symptoms that can have different causes. It’s not the same as Parkinson’s Disease (PD) but people who have PD have most of these symptoms. So do many people with Lewy Body Dementia (LBD), and there are over a dozen other conditions which cause parkinsonisms. The husband has a few of these symptoms and they are the most discouraging for him because they are so visible and he doesn’t see them improving much with his therapy. They are all movement problems. Here they are:

• Altered gait

• Tremor at rest

• Slowness

• Stiffness

• Balance problems

My aunt, who has Parkinson’s Disease, has all these movement problems as well. They are caused by a lack of a neurotransmitter called dopamine. She is able to take a drug called Levodopa to replace the dopamine and it does lessen her difficulties. But drugs like this can increase other undesirable symptoms, like hallucinations, in Lewy Body Dementia, so it hasn’t been recommended for the husband.

These parkinsonisms were some of the earliest symptoms that caught our attention several years ago. I could hear my husband walking around the house long before I could see him. He would shuffle, not lifting his feet, and take tiny steps. We teased him for walking like a pregnant lady.

Another characteristic of his walk is that he doesn’t swing his arms at all. There is a noticeable rigidity. And last week, for the first time, he mentioned that he got walking and was leaning forward and felt that he might not be able to stop easily. These are typical parkinsonian characteristics.

We used to walk often in a nearby mobile home park in Florida. That was before the difficulties began.

Last year, he had several falls and became wary of cracks in sidewalks, door jambs, stairs and any kind of uneven ground. He didn’t like to walk on the lawn, or in the woods anymore. The slightest bump or dip made him feel unbalanced.

Getting in and out of chairs became more difficult. He and my aunt used to have conversations about how the day was going and how many tries before they were able to stand up from their recliners. Now it amazes me how long it takes him to get in and out of vehicles, or even to sit down at the dining table.

And the tremor. It started in his right hand, and commonly it is one side that is affected first. I think it scared him because it started last summer and that was when he was sure stray electricity in the house was causing it. He was aware something was happening but wasn’t sure why. He is able to quiet the tremor with conscious effort or with meaningful movement, but at rest, when he’s not thinking about it specifically, his hand is always shaking. It has begun in his left hand as well.

Parkinsonisms affect how we as caregivers look at our loved one or client. They make them appear older and feeble which is distressing to them and to us. They also make the word “patience” a necessary skill as we learn to wait, to empathize, and to assist when necessary.

A to Z Challenge: Two N Words

Many of the people we care for are elderly or have dementia. Here are two conditions that they may have that I’ve become aware of in my caregiving role. Read this post and you will feel smart about a couple of obscure things.

Neuroleptic Malignant Syndrome

On the day my husband got his diagnosis of Lewy Body Dementia, the doctor made sure that we added Haldol, an antipsychotic drug, to the list of his allergies. It wasn’t that he had ever had a reaction to Haldol or even that he had ever taken it. The recommendation to avoid this drug was so strong that one of the handouts given to us was a wallet card to warn medical personnel and a order card for a medic alert bracelet. We got one.

I remember quite a few times in my nursing career when we would get a patient who was agitated, maybe even combative and unable to behave. Haldol was frequently the drug that was given to calm the patient and protect them from harming themselves (and us). As a caregiver you may find that your family member with dementia has times of extreme agitation and acting out. They may even run away or get lost. If they are taken to the ER or urgent care, Haldol might mistakenly be given to them. Many people can safely take Haldol, but having Lewy Body dementia in particular puts them at high risk for neuroleptic malignant syndrome – what a mouthful of scary sounding words!

This condition can be fatal, but is treatable if recognized early before muscle or organ damage takes place. Its primary symptoms are a high fever and muscle stiffness. These may start a few days or a few weeks after the drug is started, and is more likely with high doses. Part of the treatment is, of course, to stop taking the drug. There are newer, safer antipsychotics that should be used for people with LBD, like Seroquel.

Neuropathy

My simplified definition of neuropathy is a condition when nerves, usually in the arms, hands, legs or feet, don’t work right. It feels like numbness or weakness. Nerves can be damaged by so many different things – trauma, chemotherapy, radiation treatments, poor circulation, even bad posture.

My Mom is not sure what caused her neuropathy, but it may have been made worse by radiation treatments she had for cancer. As a result, her feet and legs have a partial numbness that makes it hard for her to feel stable when walking. It’s an unsettling feeling and causes her to be less mobile.

Mom’s feet feel so strange to her that she goes barefoot most of the time, even outside. When she has to, she wears simple, slip-ons like this, and for as short a time as possible.

Neuropathy can also make hands or feet more sensitive to pressure and cause feelings of pain or burning. It’s not fun, and most of the time those nerves do not regain proper function. There is extra risk with neuropathy that injury can occur without the person feeling it or, in my Mom’s case, a fall due to loss of balance.

If you are caregiver for someone with neuropathy, be watchful and aware of the problems this disability presents for them.

A to Z Challenge: Letter A for Acceptance

Ever since “sheltering in place” and “social distancing” became the norm, writing has become difficult, more like work I can’t concentrate on. I’ve been worried that this year’s A to Z challenge would be hard, maybe unsuccessful, and probably not fun. Rather than give up, I will possibly write things that are a bit strange, just to make the 26 days easier, and maybe more fun. Fun is good and worth pursuing.

Way back in the dark ages I got married and left behind a good life and a good friend, my mom. We’ve remained close, but I’ve always told myself that I wanted more time, daily time, to renew that relationship and do life together again. When my dad died a few years ago and mom was alone, I started to think that it might be time. She was starting to want help in small ways, and I knew I wanted to be there, to give whatever care was needed in the future.

Mom and I

Meanwhile my husband, who thought he would work at his desk until the day he died, started not enjoying work as much as before. He struggled with some physical problems. He lacked energy and motivation. Retirement started looking good to him.

It took a long year of planning and hard work but in July of 2018, the retirement happened, our house in Florida was emptied and ready to sell, and we moved to Wisconsin to be near mom. A couple months later my husband was diagnosed with Lewy Body Dementia, which changed our lives significantly. I was suddenly thankful to be in a simpler living situation, near a supportive family group. Caregiving life had started.

The husband and I

Accepting caregiving as part of my life, something I chose to do, not a lifestyle forced on me, was key in helping me to be a satisfied, basically happy caregiver. Maybe it wasn’t as hard for me as for some because I had already been a parent (the ultimate caregiving opportunity) and chosen nursing for a good part of my working life.

Nevertheless, one of the most confusing things about caregiving has been the temptation to feel like my life has been “taken over” by the needs of someone else. I’m working at a job that, at times, feels like I have no choice. I’m trapped and have to do it. If I rebel, guilt can start to dictate to me. Nagging voices try to tell me what I “should be doing” if I’m a good mother/wife/daughter/family member. My thinking gets filled with those limiting words; trapped, forced, should do, have to, guilt.

But the truth is that I have a choice of how to respond to people in need. I could choose not to be a caregiver. There are options these days and not everyone is able to offer the same kind of caring. What I do know is that if I feel like a martyr, I won’t be as effective in the care I give and I also won’t be fun to be around. It can get toxic.

I believe there is a realistic way to look at the limitations of caregiving. Being married has limitations when compared to being single. Having children has limitations when compared to not having children. Some jobs are limiting when compared to other jobs. So it is with caregiving. There are days when I am tempted to think of fun things I could be doing, other than taking care of someone else. But, thinking about all those other options will probably rob me of opportunity to find value and fun in what I’ve chosen to do.

Caregiving, as a choice, has it’s hard times just like any other path, but IT IS MY LIFE. I’m accepting my choice. Instead of holding others responsible for my happiness, I’m going to use that energy to make this life as good as it can be. Acceptance makes that so much easier.

Am I alone here? When have you found yourself in a time consuming caregiving role? What limits were especially hard for you to accept? Can you tell me about it? Would you have moved NORTH for retirement?!

Forty-Seven

I am so glad I went through the exercise of writing this “sequel”. Anniversaries are for reminding us of truths that keep us going, just sayin…

Five years ago, on January 11, 2015, I sat writing as I am now, on the same subject – the anniversary coming up in a couple days. I took a picture of my diamond and thought about all it meant to me, being married for forty-two years.

The ring looks a lot different now. Since it no longer fit me, I had the diamond reset. My preference changed to white gold somewhere in the last thirty years, and I worried about the prongs wearing off and losing the stone. The price of the gold in the old ring wasn’t enough to pay for the new one, so it cost me. I could only afford to replace the engagement ring with the stone in a secure beveled setting, but it was good to be able to wear it again.

The new setting suits me. It is plain, safe. It doesn’t collect garden dirt or catch on my sweaters. It fits, although I don’t know for how long. My hands keep… growing.

Life has changed. We are changing with it. It’s been a little over a year ago that my husband got his diagnosis of Lewy Body Dementia. That day wasn’t when the problem started but it did mark the change in his focus. How does one think about anything else when faced with a prognosis like that? His world has gotten smaller in so many ways, limited in large part by his dependence on me. Today, at home, he was relatively quiet while we ate a meal with some friends and listened to a sermon on the internet. He spent most of the day in his recliner in the corner of the living room, looking very tired. He asked me once what I was doing. He went to bed early.

It means a lot to me that he is not ungrateful. He is not a big complainer. He puts up with me dusting him off all the time and fixing his clothing. He eats what I fix for meals and tells me when it is good. He willingly follows my suggestions. He sits still while I trim his beard. He doesn’t get mad when I easily do the things that are hard for him. He doesn’t criticize my decisions about money, or schedules. He is still here, a sweet person, a nice guy, thinking, trying to manage his daily existence as much as he can. But there is very little that he can contribute to us, to our marriage, to our future. His executive functioning is not working well.

Most of the time, I cannot imagine what he thinks about. I even have trouble describing my own feelings about what has happened to us. For our anniversary, should I not be able to put words to what’s meaningful for us?

It is for times like this that we make promises to each other. Our marriage vows had the old-fashioned words “in sickness and in health, till death parts us”. We had no idea who would be sick, no one does, usually. Few have the ability to think about what that means when the excitement of marriage and all it entails is new. But now, forty-seven years later, the promises have become meaningful. It means that we own these new circumstances together.

Now it makes sense to me what covenant marriage is. There were three of us making promises on the day Dennis and I married. God, who heard my promises, now helps me to keep them. God, who knows all about grief, loss, dread, panic, and everything else I experience finds ways to support me. He assures me that promises kept will be worth it, and that growing in personal integrity will be satisfying and rewarding. Our days now are part of something bigger, better and soon coming (relatively speaking). They are not the end!

So, on Tuesday the 14th, I will remind the husband that he is not alone. I am keeping him company as long as I am able, and I’m going to do my best to keep life from being dull (I guess he kind of does that for me too…) There are gifts all around us that we can point out to each other – maybe that’s how we’ll spend our “Happy Anniversary”.

The New Normal (Our Life with LBD)

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

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

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

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

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

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

20181105_2226265191044300771156869.jpg
We got the boots.

My Elephant

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

20181016_135350814293637732673536.jpg 

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

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

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

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

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

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

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

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

Mid September “Up North”

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This is a September sky in Wisconsin.

September is more than half over, wow.

As often happens when a large, mind-consuming task is done, I’m left wondering what to do next. All the things that I haven’t thought about while concentrating on our trip to Mayo Clinic, are probably still there needing to be attended to, but I’m not sure I’m remembering them all.  That is my most frequent prayer, that I would be reminded to do things at the right time – that nothing would fall through the cracks.  Things that do fall through the cracks unnoticed create bigger problems later.

We are becoming a little more devoted to our keto eating plan now that the husband is motivated to protect his brain cells, keep those mitochondria healthy, and all.  It is a good diet for neuro-degenerative conditions, as well as cancer, diabetes and heart issues. Since I wrote about his condition of Lewy Body Dementia I have received lots of suggestions of things to try and things to avoid. We already know about some of them but will probably try them all eventually – none are ridiculous, or lacking in a good success story.

Which brings me to the point of how different this disease can be from one person to the next. Each individual kind of paves their own way down this path. There are some common traits, but even those come and go.  While it is interesting and hope producing to read stories of cures and great improvements, it can be equally devastating to read about unsuccessful outcomes. I would rather think that the husband’s story is his own and it’s not been told yet. Let’s just live well and watch what unfolds.

We can do this.

Thank you to all our friends who have responded lovingly, given us encouraging words, and have let us know that you are praying for us. A health threat is a bad reason to be drawing attention, but because of it we are newly aware of people out there who care.  I think that we could relieve your fears for us if you could be around Dennis for a while. I think you would be reassured that he is still himself, and thinking well. Circumstances are troubling, but God pays no attention to circumstances since they do no control him in any way.  It only makes sense to us to trust God and try to think like he does.

Tomorrow we are making a fun trip to the nearest “big city” of Duluth, MN. We are seeing some friends and then going to my favorite department store, Sam’s Club (lame, but true). We are looking forward to it. This weekend is Fall Fest in Hayward. It’s also the start of the Feast of Tabernacles. We intend to enjoy both. Life is good. We are not downcast. But don’t any of you stop praying, okay? Just sayin’…

P.S. The husband, a.k.a. “the fan man”, got a work related call today.  His brain is in high gear when it comes to ventilation and fans. He was proud that his company still refers the “sticky” problems to  him – and he deals with them.

Mayo Clinic: A Diagnosis

20180915_2000445957117869457069032.jpgWe’re thinking it over.

We’ve had a little over 24 hours now to sit with the weight of the doctor’s words, process them, test how our involuntary reactions are stacking up. He didn’t tell us what we wanted to hear most – that the husband’s problems could be fixed with surgery. It wasn’t NPH, normal pressure hydrocephalus. It was, or is, a form of dementia called Lewy Body Dementia.

I won’t go into the details of the condition. You can find it in Wikipedia or by putting it in the Google search bar or by clicking this Lewy Body Dementia . It’s not high on the public awareness scale but it is the second most common form of dementia, right behind Alzheimer’s. It is progressive. Everything has an acronym, so LBD is what it’s called. There is research, there are educational resources, there are support groups, but no cure as of yet.

The doctor spent time explaining thoroughly how he arrived at the diagnosis. He told us exactly how he wanted to treat the symptoms and what things should be done as far as lifestyle changes. We were already doing many of them so life will not change greatly for us. There are a couple new medications, and a few new cautions. Not much is different except now we know.

We are going to be okay. The husband is okay. He likes telling people it hasn’t affected his sense of humor at all and I always agree – it is as bad as it always has been. He is still very much himself, as most of you know.  At Mayo, he did quite well on his cognitive tests, and he will discuss complex things at times and have no trouble at all.  I would say that he is more emotional, more compassionate and understanding of others, more grateful and aware than in the past, simply because life has given him a jolt that enables him to see pain and struggles in the lives of those around him.  I think he feels held and loved by God more because he needs it more.

He is looking for any way that God might be able to use him. You know how men are (well, a lot of them anyway), they want to feel useful and not dependent. He wants to share his story and encourage others. He wants to call himself the Demented Disciple (not my idea).  We’ll see how that works out.  It is however, going to be an experience that we go through together as a family so I know I will have to write about it as a caregiver in order to stay mentally, emotionally and spiritually healthy. I don’t think it’s going to be easy.

I missed a day in my September blogging challenge, but since I’m making my own rules I’m going to ignore that.  The tests yesterday at Mayo were interesting. I may write more about them when I feel more in the mood to inform. The ride home was pleasant and we were glad to get to Hayward around 9 pm.

That’s it for tonight.