My friend had what I interpret as an anxiety attack – big time.

What happened?

We’d gone to visit my family for a weekend.  That was two days spent away from our home, and a bit more than a day in a house that wasn’t our house.

Two hours into the three hour drive home on Sunday, Carl slid into an anxiety attack.  He’s never done this before.

He was asking me, “Where are you taking me?”  The only answer I could come up with was that we were going home.

He asked, “What did I do wrong for you to do this to me?”

Things progressed gradually, and at one point, he shouted, “WHY?”

At another point, he put his face in his hands and started crying.  I pulled over to the side of the road and tried to comfort him.  He just pulled away from me.

I knew that we needed to get home directly.  As I drove, I tried to reassure him.  As we got closer to home, I asked him if he recognized where we were, thinking that I needed to re-connect him with familiar anchors.

Once we were back home, things slowly got better.

After I got him calmed down, and lying down, I said I would unload the car.  He jumped up and said, “I’ll help you.”  I figured that helping me would be distracting, so I elected not to try to press him to stay lying down.

What brought this on?

There was the general departure from our normal routine and environment.  This is challenge enough for me, but I can make adjustments, and I can ride it out.  For Carl, it must be enormously more difficult and distressing.

On Saturday, I spent several hours power washing Mother’s front walk.  Carl came out and asked if he could help.  It wasn’t a two man job, so I said I didn’t need help.

Eventually, he came out again and asked, “What did I do wrong?”  At this point, I started to try to be a little more helpful.  I suggested that he handle the hose – to keep it out of my way.  We continued, with him guiding the hose, until a thunderstorm forced us inside.  When the rain let up, we finished washing the walk.

After the anxiety attack, in the car on Sunday, I didn’t immediately connect it with the power washing episode.  But the “What did I do wrong?” question suggests a connection.

What I did?

I look back, and I’m amazed that I didn’t freak and curl up screaming.

I was trying to do two things.  One: get us home as directly as I could – without going faster than five over the limit – and trying to drive calmly.  Two: I was trying to reassure Carl – and re-connect him with familiar sights and feelings.

I was concerned that he would unbuckle his seatbelt and try to get out of the car.  Fortunately, he didn’t do that.

Earlier, we’d planned to have lunch at our local Taco Bell, before going home.  Clearly that was no longer a good idea.

I had a Toastmaster meeting scheduled for Monday evening.  As we drove, I decided I couldn’t leave Carl alone that soon.  Once we got home, I sent an e-mail message telling them I would not be able to make it.

Aftermath

The next day, Carl said he had a wonderful time.  I observed, “Except for a rough return trip.”  His puzzled look told me that he didn’t remember the anxiety episode.  I didn’t explain further.

A few days after we got back, we went out shopping after dinner: Barnes & Noble, Bed Bath & Beyond, Target, Trader Joe’s.  On the way home, Carl started asking me where we were going.  He didn’t get upset, but he was confused and a little distressed.  It occurs to me to wonder whether the Sundowning phenomenon (see previous post “Alzheimer’s Disease and Sundowning”) could have contributed to this moment at least some.

Recently, Carl has wanted to be close to me, more than previously.  If I’m working in my study – working on my writing – he prefers to sit with me, rather than sit alone on the sofa.  That of course has a predictable impact on my productivity.  I try to adjust and continue to make progress.

I’m thinking that all of this indicates an unfortunate progression of my friend’s cognitive decline.  And of our situation generally, considering our lack of financial resources and the fact that I haven’t figured out how to make a living from my writing.

Carl doesn’t have the power to remember what happened five minutes ago, but ironically, he has more power than is helpful to feel that something horrible is happening to him.

At the same time, I need to not get pulled down by changes that could be due to normal variations.  I have to allow that tomorrow could be better.

I find that Carl tracks OK when I guide him in our normal routine.  I have to make that routine work for him – and for me – for as long as I can.

Sometimes it seems that going for a walk – or walking on the treadmill downstairs – helps some.  And, at other times, I feel that that idea is illusory.

I am researching dementia and Alzheimer’s disease.  After reading about preventing, delaying, and slowing dementia – which all turn up the same recommendations – I thought that Carl and I ought to try to read together.  We used to do that – once in a while.  I had my misgivings, but eventually – actually, it was on a walk at the nearby park – I suggested that we sit together and read poetry.  Carl enthusiastically embraced the idea.  I was worried about how difficult it would be – for both of us – but Carl read better than I expected.

And I’ve discovered that with endless patience and guidance – historically, not my strongest suit – Carl can learn.  At the mailboxes, he had trouble picking the right key and the right box.  I kept guiding him.  Once, he picked the right key and the right box, and I clapped excitedly from the car.  Since then, I guide when needed – and I make my excitement loud and clear when he gets it right.  And he gets it right regularly now.  That’s encouraging.  But I have to be realistic.

I must work to continue these physical and mental activities.

So …

Like I said in an earlier post (Alzheimer’s: “I don’t know what’s wrong with me”), in the Lord of the Rings, the elves fight what Galadriel calls the long defeat.

I have to keep pushing on.  I have to try to keep things as good as they can be for Carl – and for me – for as long as I can.

I can’t think of anything else that makes sense.

My friend Carl is saying, “I don’t know what’s wrong with me.”  And I don’t know what to say back to him – that’ll be any help.

It’s not a good situation – not encouraging at all – for either of us.

Wednesday

We went to a MoveOn event.

We’d gone to the organizing meeting, a week or so earlier.  And Carl had enjoyed himself quite a lot.  Afterward, he could remember several things about the meeting, which I found encouraging.

At the actual event, Carl didn’t understand what was going on.  The heat and humidity weren’t enough to distress me, but Carl quickly got confused and disoriented.  He couldn’t focus on holding his sign flat, so people could read it.  He couldn’t focus on holding it toward the oncoming traffic.

I expect that part of the problem was the unfamiliarity of the situation – an experience wildly different from his usual routine.  But the heat and humidity didn’t help.

Eventually, he said, “I can’t do this.”  In my occasional “that was not very helpful” fashion, I got irritated.  We left.

Then Carl was hugely upset that he’d ruined it for me.  He wanted to know what it was he’d done wrong, so he could not do it again.  I kept trying to reassure him that he hadn’t done anything wrong.  I knew that explaining wouldn’t help.  I said, “We tried something, and it didn’t work for us.”  But into the evening, he kept getting more and more upset.

I had a monthly Alzheimer’s Association support group meeting that evening.  But with Carl in the state he was in, I felt it wouldn’t be helpful or kind to leave him alone.  I called the group and explained that I wouldn’t be able to show up.

I stayed with Carl, and by bedtime, he’d calmed down a little.

Thursday

In the morning, Carl was still deeply distressed – asking “What do I do?” – and saying “I have nothing” and “I have nobody.”

I needed to distract him.  And I needed to try to get him to be more positive.

I got us through our morning routine and breakfast.

Ordinarily, we would shower next, and then I would work on my writing – on my computer, upstairs, in my study.  But I figured that Carl was in enough of a rough spot that I needed to help him more than I needed to write.

After breakfast, I suggested that we go down to the basement and walk on the treadmill.  He was starting to brighten up a little, and he accepted the idea fairly cheerfully.

When we walk on the treadmill, we play a VHS tape.  We were partway through Oklahoma.  That day, the tape started with Curly and Jud in the smokehouse, singing Poor Jud is Daid.  While I was on the treadmill, Carl was beating time with the music, which I took to be an encouraging sign.

Then we showered.  A shower usually perks Carl up.  And it did.

After our shower, I would usually work on my writing, and Carl would settle on the bed or on the sofa.

Today, I printed out the project I wanted to work on, and I sat working at my end of the sofa – with Carl sitting at his end.  We kept each other company while I worked.

By dinner time, Carl was pretty much back to normal.  So we had a normal dinner, and we watched The Shop Around the Corner.

It’s rough

Thursday was so rough that I’d started thinking this would be one of those “drop off” points I’ve heard about, where an Alzheimer’s patient makes a dramatic decline.  But my friend has bounced back – almost completely, if not completely.  I keep a weather eye out for the things Carl is able to do – that he volunteers to do – and the things he’s able to figure out for himself.  Every time I see him figure something out for himself, I send up a silent – or almost silent – cheer.  By mid-day Friday, it looked like he was doing pretty well.

But he’d been asking, “What can I do?”  I don’t know what to do.  Financially, we’re about at the bottom of nothing.  And I’m not doing well at discovering how to earn a living from my writing.

But I’ll keep pushing forward – as best I can.

What I try to do

As a caregiver, I’m advised to keep Carl as active as possible, mentally and physically.

He can’t remember things – or focus on things – so how do I keep him mentally active.  I don’t really know.

I try to keep us on routines that he can become familiar with.  And it seems to work.

Every shower, we do the same things – in the same sequence.  When we start, I say, “Wash your body.”  When I get the shampoo down, I say, “This is shampoo for your hair” – two or three times.  When I get the shower gel down, I say, “This is shower gel for your body.”  With each direction, I do what I say – I wash my body or I wash my hair – so my verbal prompts are reinforced visually – and also, you might say, kinesthetically as well.

One day, I got down the shower gel, and I said, “This is shower gel for your body.”  Carl said, “Isn’t this for my hair?” – or something like that.  As I was trying to figure why he was confused, I realized that I’d gotten distracted, and I’d skipped the shampoo.  So Carl showed me that my routines are doing what they are intended to do – at least some.

When we’re rinsing and he reaches for the soap, I say, “No.  No soap.  We’re rinsing soap off.”  In earlier days, this would distress him.  But I’ve gently persisted, and now he accepts it and uses the information appropriately.

I wash his back, partly to get the adhesive from the transdermal patch off.  Also, I figure that any sensory stimulation I can provide is doing something to keep nerve pathways active.  When his back is soapy, I take the knuckle-finger side of my fists and give his back a firm, somewhat deep massage.  He does enjoy this.

When we use the shower gel, I comment on the fragrance, and I look for a response from him.

I hug him a lot – in the shower – in the kitchen – anywhere.  Even in the grocery store, I make sure I connect with him physically.

I figure that this contact is activating neural pathways of some sort – somewhere.  And I figure that I’m providing emotional support, where I suspect that a lot of Alzheimer’s patient caregivers become more and more distant and hands off.

When we fix our lunch salad, there are certain parts of the process that Carl always helps with.  Any time the salad needs to be tossed, that’s Carl’s job.  And he fetches things – like the big mixing bowl — or if I need a new bag of broccoli from the basement refrigerator.  And he sets up his TV table – and he gets ice for our drinks.  He helps wash and dry some.  Also, I try to think of new things he can do, without holding up the process too much.

And my friend appreciates the things I do for him.

So …

I’m reminded of John Howe, the conceptual designer for Peter Jackson’s Lord of the Rings.  He was talking about Tolkien when he said, “He was writing the antithesis of commercial fiction – this notion of being able to go on – and finding hope in hopelessness.  The most poignant statements in the Lord of the Rings are the elves, who have been fighting what Galadriel calls the long defeat.  And they’ve been knowing that they will lose for the last few thousand years.  But they will continue fighting until they are defeated.”

But Tolkien used the phrase “Hope with no guarantees.”  That’s what I try to keep up.

Joseph Campbell said, “The individual has to find an aspect of myth that relates to his own life.”  I’d say that Tolkien’s tale is as good a myth as you’ll find anywhere.

So I’m learning from my myth.

I’ve got to keep pushing on.

I really can’t think of anything else that makes sense.

Sundowning syndrome – also referred to as sundowning and sunsetting – is a pattern of more severe behavioral symptoms in the late afternoon and evening.  This pattern is common in people with Alzheimer’s disease and dementia.

Sundowning and the Full Moon

People forge a connection between sundowning and the effects of the full moon, possibly because both terms refer to solar system objects.

I found limited information to support the effects of the full moon – or barometric pressure – on nursing home patients (see “Alzheimer’s Disease and the Full Moon“).

But sundowning syndrome is extensively discussed.

Sundowning is attributed to changes in light level at the end of the day, and to end-of-the-day fatigue and restlessness, among other things.

The syndrome appears to be another of those topics without exhaustive research and about which there is some disagreement.

But the syndrome does appear to be broadly accepted, extensively explored, and there are generally consistent causes and suggestions.

Sundowning

The most complete and accessible explanation of sundowning I found is on “Sundowning | Just the Facts” – apparently created by the California Southland chapter of the Alzheimer’s Association.

The syndrome is described by explaining that, in late afternoon and evening, the patient “may become demanding, suspicious, upset or disoriented, see or hear things that are not there and believe things that aren’t true.  Or they may pace or wander around the house when others are sleeping.”

I will briefly echo the points in the article.  You can of course click through to the complete text.

The sundowning problem may be due to:

• Difficulty seeing well in dim light,
• Hormone imbalance disturbing their “biological clock”,
• Fatigue at the end of the day,
• Restlessness due to late day inactivity,
• Anxiety caused by caregiver communicated fatigue and stress.

Try to reduce sundowning behavior by:

• Making the later hours less hectic,
• Exercise,
• Diet adjustment,
• If nighttime sleeplessness is a problem, encourage activities and discourage napping,
• Reduce noise and activity,
• Consult with physician about possible medication to encourage sleep,
• Make it easy to use the bathroom,
• Keep rooms adequately lit.

Remain flexible and consider the person’s needs:

• Let them sleep on the sofa or in a chair,
• Reassure and comfort the person,
• Avoid arguing or asking for explanations.

Then, finally, remember to care for yourself.

• Get adequate rest.

The “Just the Facts” article also explains that “sundowning” is often accompanied by “shadowing,” where the person with Alzheimer’s follows or mimics the caregiver, or talks, interrupts, and asks questions repeatedly.  This explanation of “shadowing” is accompanied by a list of suggestions.

A web site called “A Place for Mom” (an elder care referral network) has a “Sundowners Syndrome” page with a suggestion that I didn’t find elsewhere.

“Establishing a routine.  Routines help sundowners feel safe.  Routines minimize surprises and set up daily rhythms that can be relied on.”

The “Place for Mom” page explained that sundowners “affects up to 20% of the more than 5 million Americans with Alzheimer’s.”  It also observed that the syndrome will occasionally “affect people in the early morning hours.”

I close with a poignant description of sundowning from the patient’s point of view.

“[...] you have to always keep in mind what their day is like – they are holding on with their fingernails, and life has become a swirling, confusing jumble that makes no sense.  Their days can be filled with boredom, obstacles, mistakes and failures – it’s actually very stressful for them.  They also will have perception problems.  The brain damage from Alzheimer’s can cause disturbances to body rhythms as well, so sleep and wake pattens are disrupted.”
[Site: AllExperts – Page: "Alzheimer's Disease – Sundowners" – Writer: Mary Gordon]

I wish I could do more to help Carl.  I wish, to the most wonderful stars in Mr. Sagan’s Cosmos, that I had some way to do more to help my friend.  To help my best friend in the world – at this time, when he needs help more than he has ever, in his life, needed help.  At this time, when there’s no other person or place or power he can look to for help.

But that’s exactly what every other Alzheimer’s caregiver feels, isn’t it?  Millions and millions and millions of people.  Even if their situation isn’t exactly the same as mine, they fervently hurl an identical plea into the implacable ether.

Carl’s Concerns

Carl and I recently went to Longwood Gardens, two days in a row, to see their Nature’s Castles treehouses.  I want to write an article (or a few articles) about the treehouses, to post on one of my blogs.

As we were coming home, both days, Carl was worrying about having no place to go.  He was fretting about having nobody.  I assured him repeatedly that he lived with me – that I was his friend – that I loved him – that I would take care of him.  But he continued to be upset and concerned.

“But you’re not always there,” he said.  I told him that any time I go away, I always come back.

He continued to fret – until I mentioned that we had haircut appointments that evening.  From that point, he asked me, over and over, what time the haircut appointment was.  And where would I be?

Recently, Carl has had periods when he seemed particularly confused and disoriented.  And he’s been worrying about this confusion.  He’s started asking me when his next neurologist appointment is.  He has somehow gotten the idea that something is very wrong, and he needs to make things better – and that idea has an optimistic ring to it.  I keep assuring him that the doctor already has him on the best combination of medicines available.  But, of course, that doesn’t stop him worrying.

Every night, he wonders where he’s supposed to sleep.  And he’ll ask me where I sleep.  I always tell him that I sleep with him – I just go to bed a little later than he does.  And he’s amazed that he never sees me.

Most nights, when I get into bed, he reaches over and says Hi.  But he doesn’t remember.

My Concerns

Part of the problem here is that Carl’s expressed concerns mirror my concerns – concerns that I try to keep to myself.

We’ve both been out of work for several years.  For some time, we lived on our savings, but we’ve exhausted those resources.  More recently, my family has been helping us, but that can’t continue forever.

There should be a way for Carl and I to survive – possibly even thrive.  But I’m not very accomplished at discovering that sort of opportunity.

I wish I had the resources to know that I could take care of Carl.  That I could take care of both of us.  But I don’t have those resources.

However, I’ll persist in trying.  And perhaps I’ll succeed.

I guide Carl through his day.  I watch out for him endlessly.  I touch him often – I hug him tightly – in a hopeful attempt to keep him from feeling abandoned.  I massage his shoulders and back quite often – in the shower and other times.  I try to keep him feeling connected and supported.  I imagine that touching will stimulate nerve pathways and keep a few of them from shutting down quite so soon.

But I need to spend time in my study – working on my writing and research – working to find a way to support us.

I wish I could spend more time with him.  I wish I could do more things with him.

I wish I could hold him more – and reassure him more – and always do my best to keep him from feeling abandoned.  I wish I could take him places – keep him active – keep him distracted.  Keep him, as much as I can, from worrying about his situation.

This morning, Carl didn’t sigh his way through breakfast, like an ancient locomotive – which is what he’s done these past two days.  He didn’t have to go back to bed for a while before we could get a shower.  And we went out and ran several errands with no difficulty.

Over and over, I sent my thanks to the stars.  And I have hugged and touched Carl that much more often today.

But this afternoon, he’s still asking about the doctor appointment next week.  He’s written it down two or three times, but the question continues to plague him.

At one point, he said, “I don’t think I have long to go.  But that’s life.”  I’m at a point where the remark didn’t shock me – or even startle me.  But I’m not happy that I couldn’t think of something helpful to say.

So …

Carl keeps saying, “What would I do without you?”  I try very hard not to think about the answer to that question.  Or even about the question.

As Valjean says to Javert, about Fantine’s child Cosette, “There is none but me who can intercede.”

I just wish I could do more to help Carl.

“As we walked, every two minutes, I would seize up, surging close to convulsing into tears.”

Those were my words. I wrote them in my initial post to this blog, a little over six months ago.

I was figuring that I’d work my way through the tears – and then I would move beyond the tears.

But I’ve found that every time I talk to someone about Carl and his Alzheimer’s Disease, I burst into tears. Sometimes, I just choke up – and I can’t talk. Sometimes, I plunge into wailing, choking, and sobbing into my arm.

When I talked to the lady in the Alzheimer’s Association office, I seized up over and over again. When I speak up at an Alzheimer’s Association caregiver support group meeting, more often than not, I choke up – I can’t say what I want to say, clearly and quickly. When I went to an all-day Family Caregiver Training Seminar, nearly every time I spoke up, I was unable to control my tears.

I mentioned my problem with the tears, at one of the support group meetings, and the moderator said, “It doesn’t go away. It’s part of the horror of this disease.”

So – the name of my blog is all wrong. There is no path beyond the tears. This lachrymose cataract will follow me – wherever I go – always – for the rest of my days. I can not escape it.

And yet, while I may not be able to struggle free from this horror, I can move forward. I can achieve at least a little more control over my crying. And it doesn’t plague me all the time.

When I’m not being blinded by the tears, I need to make progress. Progress for Carl – and for me.

I must enter that mythical forest where there is no way or path. There I will find no road for my tears to obscure, so they should not impede my progress.

And tears or no, I must move forward – as best I can.

And there is yet another name problem – the title of my blog – again – “Dementia: The Path Beyond the Tears.” It was set up after the psychologist diagnosed dementia – but before the neurologist diagnosed Alzheimer’s. So one more part of my blog name is all wrong. It seems I’m batting zero here.

But – dementia, as a term, does encompass, and it does include, Alzheimer’s disease. So while my reference isn’t precise, it is, in point of fact, accurate. So I’ll keep it. At least for the time being.

What has happened since then

During this six-month period – since I started this blog – we’ve covered a fair bit of ground.

After the initial “dementia” diagnosis by a psychologist, Carl was seen by a neurologist.

The doctor did an assessment – which included a lot of questions. I sat there, not answering for Carl – feeling like I was abandoning him to pain and abuse. But I was bright enough to realize that the doctor needed to feel Carl answer his questions – or the doctor would not discover what he needed to know.

He asked me several questions as well: when did something start – what did I see. I did feel a bit like a self-centered, unobservant idiot.

But I think that’s the reality of this sort of situation. You DON’T notice these things until it’s far to late to have any clear feel for when they started.

The doctor also ordered an MRI.

The doctor – the neurologist – diagnosed Alzheimer’s disease.

Carl is now on two medications – which work together to slow the progress of this disease process.

Beyond working with the doctor, I’ve gotten in touch with the local chapter of the Alzheimer’s Association. This organization is a huge resource – for information and for support – in person, on paper, and online.

I’ve also started to attend the monthly meetings of two Alzheimer’s Association caregiver support groups. These are stunning sources of information and support.

I attended a whole-day class called “Family Caregiver Training Seminar” – sponsored by the Alzheimer’s Association. Lots of information – some of it scary.

Then – beyond the groups and the classes – there’s another element of progress that I think it’s important for me to recognize here. I have journeyed from and through: ignorance, shock, fear, and who knows what else. It’s like Elisabeth Kübler-Ross’ “Five Stages of Grief.” Indeed, it may BE her “Five Stages of Grief.”

I’ve also learned a fair bit about adjusting our home life to accommodate Carl’s situation. And about adjusting my attitude and behavior. Of course, there’s much more to discover here.

What I’m planning to do

My plans for the future have evolved a bit over this half-year period of time.

I’m planning to attend any other classes I can fit into my schedule and my budget.

Someone might ask, “Why would you consider sitting through similar material more than once?” It’s a reasonable question.

But – I have learned that reading a book more than once will give me a clearer and deeper understanding of the material covered. If I’m reading a book from which I feel I could benefit greatly, then I will surely read it more than once – perhaps more than twice. And if I’m reading a book that’s difficult for me, but which I really want to understand better, then multiple passes through the material are always helpful.

The same is true for a video. Whether the video is documentary, comedy, or drama, if I watch it a second time, I see and appreciate points that I didn’t notice the first time through. The same holds true for a third viewing – and often for subsequent viewings.

The same will certainly be true for classes and seminars. Hearing the same information multiple times – and from different points of view – the knowledge will surely become clearer and more useful.

It’s entirely possible that something in one class won’t click for me – at that time. But later, with new experiences under my belt, it will click. That mental “bong!” That “ka-ching!”

And I can not think of any other subject where it’s more important – critical – essential – for me to know and to understand the absolute best I possibly can.

As a researcher, I’m planning to embark on a project – perhaps an ongoing and unending project – to learn everything I can about this disease: about it’s variations and it’s stages – about the diagnosis of the disease – about the risk of getting the disease – about the treatments – about the suggestions to slow the progress of the disease – about research – about resources – about how I can better help my friend – and about any other topic I can identify.

As a writer, I’m planning to write articles – and post them to my Dementia Path blog – and publish them anywhere I can – about any of these topics – and about any other related topics I get interested in.

So …

Since creating this blog, we’ve covered a fair bit of ground. And “The Road goes ever on and on, Down from the door where it began.”

It appears that “the path beyond the tears” is filled with tears. And will be filled with tears.

Now where did I put those gumboots? I’ve got work to do.

The banging rang along the halls of the nursing home. A moment before, it was quiet. Now, the regular, rhythmic pounding echoed through the vaulted open area.

I was seated at a conference table. I was attending my second evening meeting with this Alzheimer’s Association caregiver support group.

I knew that the building was built only a few years ago. So the utility systems shouldn’t be making that kind of racket. At least, not quite this soon.

Sheri was sitting across from me. She was on the nursing home staff, and she noticed my puzzled look. She told me, “That’s Mrs. Myerson – trying to open the locked door. Ethel often does that just after her daughter leaves.”

Sheri also pointed out that the full moon was the following Monday – just a week away. She explained that the staff understood how AD residents could act unusually strange at times, and staff would glance at each other and say, “It’s the full moon.”

While the lunar effect was briefly discussed around the table, Sheri made a similar, but briefer, observation about barometric pressure.

I had learned of my friend Carl’s Alzheimer diagnosis only a few months ago. But already, I’d noticed episodes of more unusual behavior – sprinkled in amongst the not so rough times.

After hearing these stories of astronomical and meteorological influence, I wondered whether lunar phase – or atmospheric pressure – could play a role in the variations I was seeing.

Then I wondered whether a little online research would confirm or refute these ideas.

Lunar Influence

I didn’t find a lot of information on this topic – which is a suggestive nugget of information in its own right.

Robert Todd Carroll, of The Skeptics Dictionary web site, wrote an article titled “Full Moon and Lunar Effects” where he reported that the lunar effects which have been identified and studied, have been found to have little or nothing to do with human behavior.

Mr. Carroll observed that the full moon has been linked to a long list of events and effects – including agitated behavior by nursing home residents. He cited a 1996 examination of over 100 studies on lunar effects. The examination concluded that the studies failed to demonstrate a clear correspondence between lunar phase and behavior.

Many people believe that since the moon’s gravitational pull produces the earth’s ocean tides, and since 60-70% of the human body is water, that the moon must effect the human body in a similarly dramatic and rhythmic fashion. But force of gravity is proportional to the mass of an object and inversely proportional to the square of the distance between the objects. Given the minute and bounded mass of fluid contained within the human body, compared to the enormous and free-flowing mass of ocean water, and given the enormous distance to the moon, the lunar pull on the human body is negligible. Closer objects – such as other people entering or leaving the room – would exert a greater gravitational effect.

On the other side of the question, Alan M. Beck of Purdue University conducted a longitudinal study “To objectively examine the lunar influence on the frequency, duration and intensity of behaviors in individuals with Alzheimer’s disease.” (www.nursinglibrary.org)

The behaviors examined were wandering, anxiety, physical aggression, and verbal confrontation. The study concluded that individuals with AD exhibited significantly more behaviors during periods of full moon, and that these behaviors were of a greater duration during the full moon.

Mark LaFlamme, a staff writer and columnist, summarized the lunar effects discussion nicely when he wrote, “The full moon people are not likely to be swayed. The great, white satellite is more than 4.9 million years old and 238,857 miles away. It has more than twice the effect on our tides than the sun. And even those high-brow studies and statistics can’t rule for certain that it has no effect on us all – science in the natural world doesn’t consider the supernatural.” (www.marklaflamme.com/Moon.htm)

Barometric Pressure

I found less information on the effect of barometric pressure on behavior than I found on the effect of tides.

Mike Bockoven, of the Grand Island Independent, described a Veterans Home wing for AD patients. He wrote that you will see a sign reading, “They don’t live in our facility. We work in their home.” That reveals something about the writer’s thinking and about the facility’s thinking.

He wrote that “The staff tells stories of changes in barometric pressure or right before major weather events when, one minute, everything is calm and, the next, problems seem to explode all around them.” (www.livingthroughwindows.com)

The effect of barometric pressure on AD or dementia is suggestive, but it’s probably difficult to demonstrate.

So …

These topics don’t appear to have generated a lot of concern or activity. It would seem unlikely that there are great bodies of work on these topics that are not available to me – when there’s so little that is easily available.

None the less – I think I’ll keep an eye on the moon’s cycle – just for the heck of it. I check the weather online every morning, and I’ll add the lunar phase to the points I note.

Beyond that, I’ll decline to get concerned – or excited. And I will make my own observations.

This past Monday morning, I attended my first meeting of a men only Alzheimer’s support group – sponsored and supported by the local Alzheimer’s Association.

Joe runs the meeting, and it meets the 2nd Tuesday of each month at 9:30 AM. Joe said that 15 to 17 guys attend the meetings. Most of them are caregivers for their wives, who get together to share information, resources, and experiences. The meeting was formed by caregivers who are more comfortable in a group that is not mixed.

They usually meet at The Flavor of Britain tea shop, at Independence Mall, 1601 Concord Pike (Rt. 202), Wilmington, Delaware, 302-658-9975. Attendees contribute for the coffee and teacakes.

Sometimes the group will meet somewhere else, just for a change of pace.

Or they may meet at a topical location – like a nursing home. Joe explained that it’s useful to have first hand information about facilities that you may need to use later on to care for your loved one – such as assisted living, day care, and nursing homes. He said that it’s best to see what’s out there, before you have to make that decision.

Joe is a fount of information. At this particular meeting, he had a stack of brochures from a health fair he’d attended. He had flyers from the local Alzheimer’s Association. He had information about learning opportunities, fund-raising events, and a bus trip, to Washington, D.C., to talk to legislators about Alzheimer’s caregivers’ concerns and needs.

During this meeting, I learned that Joe has been exploring and discovering the highways and byways of helping Alzheimer’s patients – and caregivers – for years. He – and the rest of the members – are a wonderful resource of knowledge and experience.

You will hear real world stories and suggestions about care options, financial issues, legal needs – and about the often neglected issue: taking care of the caregiver.

The group is open and warm. The meetings are a comfortable opportunity to learn and share information. And a forum where you can learn and feel that you are not alone.

At the meeting, Joe gave me a small book – “Coach Broyles’ Playbook for Alzheimer’s Caregivers – A Practical Tips Guide“. Joe said that the book was published by Frank Broyles, and Frank has given them free to anyone who needs them. It’s a 90-page, sturdy (heavy, coated stock), double loop wire bound book, with print that is large enough to read easily.

Joe described the “Coach Broyles’ Playbook” as more compact and accessible than “36-Hours”.

The “Playbook” is organized by the stages of AD progression – early stage, middle stage, and late stage. It explains, in a quickly accessible format, what could happen, tips for handling various situations, and survival tips for the caregiver. It is a lot of help, in a compact, easy to use package.

At the same time, Joe says that “36-Hours” is still the best book available. (”The 36-Hour Day – currently 4th Edition – by Nancy L. Mace, M.A. and Peter V. Rabins, M.D., M.P.H.)

Further Alzheimer’s Disease information is available from the Alzheimer’s Association, Delaware Valley Chapter, in Newport DE – 302-633-4420 or 1-800-272-3900 – or online at www.alz.org.

Hi there! I’m back.

There’s a row of Poplar trees behind our house. In winter, the branches are bare, and I can see through the trees to the scrub beyond.

Today it’s spring, and the Poplars’ foliage is filling in – once again.

As leafy life returns to the trees outside my window, I am returning to my blogging.

Returning from where?

In December of 2007, I started three blogs: Star Stuff Writer, Star Stuff Life, and Dementia: The Path Beyond the Tears. My most recent post was to my Star Stuff Life blog on March 21, 2008. Today is Cinco de Mayo, so it’s now been 6 weeks since my last post.

What, you might ask, have I been doing?

Where my writing is concerned, I’ve been trying to figure out how to make a more effective process.

I’ve started two writing courses by Angela Booth – an Australian Writer. One of the courses I started is her “Write More” course – which is largely about process.

For the past few years, I’ve been doing a lot of reading. More than once, in that time, I read a book that enabled me to seriously improve some activity which was slow and difficult for me. It enabled me to take something that was intuitive and unsure – and make it a better, clearer, more effective process for me.

I may not follow the book’s suggestions exactly – and my process may evolve. But by any measure, I’m far ahead of where I started.

In a very similar way, lesson 1 of Angela Booth’s “Write More” class taught me an idea that she calls “writing organically” – which enabled me to seriously rethink my writing process. In my notes for the lesson, I wrote, “this concept alone could be worth the cost of the course.”

And of course, I’m looking forward to additional improvements, to my process and to my understanding, from Angela’s “Write More” class.

Where am I going?

My initial objective is to write more – which means writing more smoothly and more quickly – in other words, more effectively.

Beyond that, I need to earn a living from my writing.

All of this is easier said than done. Ask any writer. Or ask anyone who has tried to make significant changes to personal patterns.

Leo Babauta wrote a post to his Zen Habits blog titled “13 Things to Avoid When Changing Habits.” Among his 13 points, he suggested: take on one habit at a time – commit to a plan on paper – and have some form of accountability.

With Leo’s post as my guide, I intend to make a plan – and I intend to make a commitment. I intend to post my plan – and my commitment – on my Star Stuff Writer blog later this week.

And so …

I imagine that this ending doesn’t stand up strongly against a film serial cliffhanger.

But I hope to post the next episode within a day or two. But on one blog only – rather than on all three.

To be continued . . .    (My Plan – My Goal: To Write More)

The neurologist characterized Carl’s “progress,” along his rocky Alzheimer’s road, as “medium”.

Thinking about it later, I wondered what “medium” means – really. I must ask when I can.

I’m wondering whether Carl could be on the not-so-good side of “medium”. Or maybe even a bit beyond that.

One person who wrote to me mentioned that her mother had concealed her progress from the daughter. It’s an idea that hadn’t occurred to me. But thinking about it, that could explain some things I see.

Carl makes these horrible jokes. He says something that doesn’t make sense, and I start to explain how it really is – or at least, I start to explain how I see it. Carl responds by saying he was only joking.

For some unfathomable reason, I never find myself chuckling at that point. I don’t know. Perhaps Alzheimer’s has a radiant, debilitating and withering affect on any sense of humor in the vicinity.

Maybe he did make a joke. I certainly can’t say for sure.

But maybe he said something that he quickly realized didn’t quite make sense, and then he jumped in to try to transform it from a flub into a joke.

He does sometimes make jokes where he laughs as he says them. So maybe those others actually were jokes – or at least some of them. Again – I just can’t say for sure.

Looking back at this analysis of humor – at my reasoning – what does it tell me? Does it perhaps say more about me than about Carl? I don’t know.

It seems that Carl needs more prompting today than he did not so long ago – and more repeated prompting and assisting.

I thank the stars that we two are gay men – with a long-term closeness. It makes a few things easier for us – than they would be for say a mother-daughter pair.

If he gets confused, and then distressed by my prompting, I can touch his face – I can hold him close – I can gently kiss his lips – and I can tell him that I’m just trying to help. So far, at least, his distress and resistance have melted away. So far.

As I said, our closeness – and our relationship – make some things easier.

But at some point, I realize that I’m pleased – almost made giddy – by the smallest things.

If Carl is making his coffee, and he remembers, on his own, to use the Brita filtered water, rather than tap water, then I find this tiny, invisible huzzah bubbling up inside me.

If he points to the fifth lid, in the 7-day pill organizer, and says “Thursday,” I feel a quiet little hallelujah. Then sometimes, he says “Tuesday,” and my heart plummets through my heels, and doesn’t stop there.

Sometimes, after our shower, he’s not sure what to do next. I have to lead him to the room that has his dresser and talk him into putting his t-shirt on. Too often I have to lead him back again, because he didn’t put socks on. And then some days, I point him to “the front room,” and he returns appropriately under-attired.

If I pause a moment to consider it, I realize that as time progresses, I will be grabbing at smaller and fewer straws.

It’s the little things today. And it will be the little things tomorrow.

As I was getting Carl settled this morning, on the couch in the livingroom, with his breakfast Cheereos, coffee, and newspaper, I thought about the several times, in our 33 years together, when he would playfully suggest that I make his coffee – or that I get him some fresh coffee – or whatever other amusing idea popped into his head.

I always declined. Completely apart from the fact that the suggestion was playful, I was wary of getting into that sort of pattern – with coffee – or with any other routine need.

The bitter sweet, ironic agony is that’s exactly what I’m doing today.