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”

20180915_1902537098364462020930635.jpg
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.

“Up North” Mayo Clinic

Right away, let me say that if you have to get sick, this is a really good place to go.

We left my brother’s home near LaCrosse early this morning and in a little over an hour we were in Rochester, MN. The clinic and its hospitals are the focal point of this small city and it is fairly easy to navigate. There are people waiting in every parking lot and in every lobby to answer questions for newcomers like us – they are used to doing it and because they have developed good systems things went smoothly for us.

20180910_211123622228104635383065.jpg
Campus map… a lifesaver, and, of course, my phone GPS.

I was amazed that we drove to the 9th floor (top) of the parking garage and were headed back down again before we found an empty spot, and at such an early hour. There were rows of sturdy wheel chairs at curbside for anyone not inclined to walk, good signage that was easy to follow. This stuff is so important! Knowing where to park, and where to go for appointments is one of my main concerns in going to a new place.

There were no long lines and no extended waiting periods! We might run into this later on but today was extraordinarily good in that respect. After check-in we were helped by a appointment specialist, Mr. Smith and put into an exam room to wait for our doctor, Dr. Jones. “Smith and Jones” jokes were exchanged.

Dr. Jones got a detailed report from Dennis. He seemed to be a good listener and made notes as we went along through the exam. He wasn’t a white lab coat doctor which I thought was interesting. He had a nice, expensive looking wool tweed suit, longish curly dark hair, and a trimmed beard. He gave Dennis quite a few tests as he talked with him and at the end announced that he had mild cognitive impairment, maybe borderline dementia. We knew that, but it was nice that someone else actually noticed it too. He is in favor of finding out why.

Not too long after the evaluation, the husband had his brain MRI, with and without scary sounding contrast medium. Very nice professionals conducted this testing with very little wait time. Mom and I had time to eat a light lunch while this was going on. We were done and on our way to the motel before 3 pm. The accommodations are clean, comfortable, adequate.

20180910_185834-14682613416900355821.jpg
They don’t have an extra chair anywhere in the facility for us to each have one, but they do fold the towels really well (cute).

We rested, had a “comfort” dinner at Olive Garden and are back in our motel ready to get to sleep early.

Dennis was supposed to have a PET scan tomorrow but because it was not yet authorized, they postponed it until Thursday afternoon. I’m hoping the insurance will cover it because Dr. Jones said it was probably the most definitive test and will show whether he has normal pressure hydrocephalus (NPH), Alzheimer’s disease (AD) or Lewy body dementia (LBD). We need to get authorized for this one and that is our prayer for this visit.

The lumbar puncture will take place on Thursday morning. The neuro-psych evaluation was scheduled for next Monday but we are going to be waiting for cancellations the next two days and hoping to get it done this week. It’s a nice enough motel but not where we want to live for that long.

Other appointments the doctor felt to be necessary were another sleep study and an ophthalmology work-up. Those can be done later in October – we will come back for them.

So far, so good. Thank you to all who have prayed for the success of our trip. It is going as well as can be hoped for.  We are in fairly good spirits.