Taking a Vacation

I took one. It was planned last year, involving expense and arrangements with other people so I could not easily change the plan, although I considered doing that. To be gone for seven days required more effort and stress for others than I had thought it would.

I am glad that I had the foresight to ask youngest daughter Esther if she could come to stay while I was gone – to keep her father company, and to help her grandmother not feel the whole weight of socialization. I also wanted feedback on my own observations and assessments. I don’t always know if I am seeing what I think I’m seeing, or if I’m just being impatient and somewhat biased because of my closeness to the issue.

There were hard moments for both of them – Esther confirmed this – but overall she did a great job of making him happy, helping him feel guided and informed. She gave him tips on calming himself, on exercising with dance, and being lighthearted and silly as therapy. They talked. They did things together. It was good for him and good for their relationship. I am grateful for all she supplied, but also aware of the cost for her. Taking solo vacations is probably not something I will be doing a lot.

However, we can take vacations together, the husband and I. And that will be another adventure, I’m sure.

What Will Today Bring?

That is what I think to myself each day as I wake and take stock of the time and where the husband is. Today he was asleep initially, got up once to visit the bathroom, and then went back to bed until nearly 10 am. Even Mom was wondering about him and asked me how he was – was he alive?

As I watched him get out of bed, he told me he wanted to see David Kelling, the chiropractor. He was pretty sure that what he ate the night before was not good for him. He had decided that the meatballs must have had pork in them and he wanted to find out if David knew how long it would take for him to purge himself of the effects. The effects had mostly to do with his fatigue, and sleeping longer than usual. “Clean” and “unclean” has increased relevance to him since watching one of the TBN preachers on the subject.

He decided that fasting was the order of the day for him, but he did want to pray with me for the meal I was having for breakfast. He remarked about how different it was for him to be praying for my breakfast, but his fast – that it would be a good one. For several minutes I was able to distract him with news of people we had known in Florida, but soon we were back on the subject of health, only it was now my health. According to his observation I thrash around in my sleep a lot, and he is unable to wake me lately, to get me to stop.

Behind this topic is his supposition that I have REM sleep disorder, which means I’m just like him only a few years behind in my progress. My symptoms should move me to take more magnesium, quickly.

He was able to sit and lift one leg up onto the opposite knee without using his hands to pull it up. He is doing this the last couple of days, meaning that he is improving his strength and flexibility. Everything he does better than the day before is because his therapies are working. Everything he does worse is because of something he did wrong – the wrong supplement, the wrong food, not enough exercise… The fluctuations are never because of LBD and its usual course. Sometimes he looks sad and he may be thinking of the LBD, but he does not acknowledge it.

I looked at his blood pressure log yesterday and noticed that he hasn’t recorded anything since 12 days ago. This was an obsession not too long ago, needing to be done every time he “felt” any change. I don’t know if he’s forgotten or if he believes his pressure is normal now and no longer needs to be monitored – since he stopped taking all his medications. Yes, he did that. Dr. Chambers told him it wasn’t the smartest thing to do since he still had some high readings and having a stroke would put an end to all his other therapies. He didn’t agree. He is getting better.

In spite of getting better, he has come out for help putting on his shirt, and just came out to tell me what a terrible time he had putting a different belt through his belt loops while trying to keep his shorts on.

He has taken to heart what he heard from another preacher on TV, about being selfless and thinking of others. Twice this week he has insisted upon riding in the back seat of the car and letting Mom have the front. He makes sure it gets talked about.

Trying to Sleep

Bedtime is often early – 7 or 8 pm – after an early dinner. Around 9, just when I think I will have some undisturbed time to read or write, I will hear him get out of bed and shuffle to the door and peer around the corner at me while I sit at my desk. He will do a silly little wave and announce his first wake up of the night.

Tonight, he came out and sat down next to me as I wrote. He waited until I looked at him and then told me that he wanted to talk to me.  Conversations that start like this are often ones I don’t like.

What he wanted was for me to document “his phase” that he was in. It’s a problem that happens at night and this is how he describes it.  It’s tension that keeps him awake, a bit like restless leg syndrome.  He feels that his blood pressure is high and that he needs to have more magnesium water.  He wants very much to sit and resolve this tension but knows that he must do something active to resolve it.

I suggested he take his blood pressure to verify what it was, but the act of getting up and putting the cuff on to take the reading was something he said would cause more tension. He didn’t want to do it but finally relented if I would go get the cuff and put it on him. (And yet he knew the next thing he needed to do was his high intensity exercise, which involved moving too. He admitted the contradiction.)

His blood pressure reading was 167/95 with a pulse of 49.  He got up to do his exercises, which consist of mostly arm movements and a little bit of squatting for four minutes, but I doubt he spent that long at it.  He insists that it be recorded as his hands begin to tingle, and he feels the stimulation up the back of his neck, and of course, he gets tired and breathes a little heavier.  All this is important to note because it shows that you don’t have to have a lot of exercise to get what he calls “nitric acid dump”.  This is an exercise protocol he learned from an online coach named _______. After exercise his blood pressure was higher 183/106, pulse 58 which he predicted would happen. After resting for a while and drinking more Mg water his pressure was back down to the pre-exercise reading.

From reading, he has a mental construct of what he thinks is going on in his body.  Taking his blood pressure puts pressure on his bladder.  Autophagy starts taking place a certain number of hours after he eats and makes him have to clear his throat and spit, makes him have to urinate, makes him need more and more magnesium.  Something makes him feel that the whole process is speeding up and requiring more magnesium. He measures how much he thinks he needs by how much he is drinking.  He used to sip on one 16 oz. bottle of water with 300 mg. magnesium per day and possibly another one during the night. Now he is asking for at least two and sometimes three.  He asks because measuring the minerals is difficult for him. He shakes and spills some.

He believes the night time spitting and urinating are signs of autophagy, which is most certainly clearing the misfolded proteins out of his brain.  He feels like a scientist, taking part in a ground breaking experiment, which must be recorded. (I don’t know how to explain the drama involved in his every move, every word of this life changing stuff…)

Faithfulness

04-03-2019

So tired.

Last week we went to church and sang “Great Is Thy Faithfulness”.  As he began to talk to us, the pastor wanted three people to tell of God’s faithfulness in their lives. I always jump up at this kind of invitation. It’s not that I have it in mind to say a particular thing, but I know God has been faithful and I should say so. I stumbled around a bit, explaining the difficulty of moving to a new area and then getting word that my husband has dementia.  It has had its depressing moments, circumstances that we weren’t happy about, but we go through each day, able to find the goodness of God toward us.  I said something to that effect.

As I finished, the husband raised his hand and said, in his “Lewy voice”, “and I wouldn’t have it any other way”.  I know what he meant by that. We have talked it over numerous times.  He has felt an actual friendship with Jesus and had dreams (I think he would call them that) where he’s been given words to think about and investigate. Jesus knows he’s a scientist and loves to figure things out, so he gives the husband clues, that lead to more clues.  If he gets stuck and doesn’t know what comes next, he asks and waits until Jesus tells him more. He’s very touched by this friendship and gets emotional relating the details.

It’s never been his choice to have this diagnosis, of course, but knowing that God has allowed it for a reason, he is accepting it. The resulting relationship with God, and with friends and relatives, has enriched the experience beyond what he would have expected in life. In that sense, he really wouldn’t have wanted it any other way, because it probably wouldn’t have happened any other way. God knows how to make happen what we need to have happen.

Why This Blog

3-29-2019

I can’t remember if I wrote this. I decided to start a second blog so I could write freely about my perspective on life with LBD. I did the work of getting it set up, transferred a bunch of previous posts over to it and am now waiting, for something…, I don’t know what.

Initially I called it The Demented Disciple’s Wife, because he was okay with calling himself that. Tonight I changed it to Hope in the Face of Dementia. I think that sounds more hopeful to have Hope in the title. There’s always hope, right? Not everyone would like the other title – I know I didn’t when I heard the husband wanted to call himself the demented disciple.  It will also be less likely that he will google it, start reading and recognize it’s about him.

But I will tell him at some point. I don’t intend to say anything he couldn’t hear, or anything terribly disrespectful, but I think it’s best not to put an emotional burden on him by sharing all my angst. I want this blog to be helpful to others, supportive to caretakers and informative to any who want to know about LBD. This may be the only way for him to share any of his thoughts or research with the world, because I just don’t see him doing that himself. He is all talk and no action at this point. 

Today we got our first shipment of Dr. Carolyn Dean’s magnesium and mineral complex supplements. The husband has been very excited about starting on it, this better form of Magnesium that is absorbed immediately before leaving the stomach. It should not cause bowel irritation or diarrhea so more of it can be taken. He is still sure he’s very deficient and needs the maximum amount. He is sure that he’s successfully untangling the amyloid protein bodies in his brain and restoring himself to normal.

He has been off his prescription meds for a little more than a week now.  He has some high numbers on his blood pressure but he is convinced it’s reaction to being upset at the time he measures. He takes it again later and it will be a little lower usually. He thinks his skin condition has improved, his other symptoms associated with his facial nerve have improved (eyesight and smell) and he feels he is moving more steadily. When we walk he comments on how he can look around now, not at his feet constantly. And of course, he is not constipated. He has to tell that, even to strangers he has just met. It’s weird. He doesn’t just tell them he’s not constipated, no, it has to be the before and after story, with all kinds of details. It’s weird.

Even though he sees improvement in his condition, there are still the fluctuations to deal with. Things can change on an hourly basis so it is hard to say the improvements are lasting. One thing I can say is that he doesn’t seem to be getting worse. That is a hopeful thing for which I am thankful.