Tag Archives: Who I Am Yesterday

Who I Am Yesterday finds Barnes & Noble, and a lot of new friends

Over the past month, I have been working towards a book signing arranged for me by Greta King, a magical marketing agent. My debut run at this activity was at Barnes and Noble on Black Lake Blvd in Western Olympia, Washington. Since my book is about caregiving and the things one must learn to live with a loved one with dementia, I chose to expand my influence.

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I spent some time in the offices of Council on Aging in both Aberdeen and Olympia, and collected a substantial amount of literature about support groups, resources, and organizations. That collection followed me to the signing, and will become a permanent part of any signing or speaking engagement I secure in the future.

In addition, I put together a short resource guide that included several book titles, and links to sources of clothing, medical equipment, and care supplies. That guide is available here. My list of reading material includes the literature provided by the Council on Aging, along with links to acquire additional information. Even if SW Washington is not where you live, the list is broad enough it will provide a starting point to locate support closer to home.

My local newspaper also published a brief article about the event and something about my book.

For this event, Barnes and Noble used my resource list to locate titles within their store that might be of help. These became part of my display. The store management was very gracious and mentioned several times how happy they were to be a part of my mission to inform, to comfort, and to share.

Then, of course, the event. Yes, I sold a few books. The store will continue to stock my book, at least for a while. I also had a chance to talk with people who needed and wanted what I had to offer. One group of ladies had traveled to hear me speak and when they realized I was not speaking, asked for contact information so that they could invite me to speak to their group. They left well supplied with materials, a signed copy of my book, and a few answers I could offer based on my own experience.

Another lady stopped in mid-stride as she came through the door and announced she had just decided she needed a cup of coffee and had no idea why; until she saw my table. Again, after having a cup of coffee and reading through a few things, she left well supplied with information, and a signed copy of my book.

John McBride, from the office of the Lewis-Mason-Thurston Council on Aging, stopped by with his wife to get my autograph on the copy I had left with his office. From what I hear, both his office and Aberdeen may be contacting me about acquiring more copies for their people and to share. There are also hints of a speaking thing or two in the future.

I would say, all in all, the event was a success. I know I thoroughly enjoyed meeting the people that stopped to say hi and talk (or grab a bit of candy). I think I will be a welcome guest at the store in the future, and I have made contacts that may well expand my reach and my ability to share. Not a bad start; not bad at all.

Choose to Dance – find the way that clearly defines your needs as a caregiver, and the needs of the person being cared for – and dance to your own tune.

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Reflections ~ When Letting Go Gives a Firmer Grip

Epiphany. A word misspelled, misused and, sometimes, misunderstood. Its roots lie deep in Latin and relate to a moment of divine manifestation. There is even a feast named Epiphany on January 6. It also means (according to the Oxford Dictionary) a moment of sudden revelation or insight. In my opinion such moments are often life changing. I have experienced both joy and suffering at such times – today it was joy. Today I had an epiphany.

The last few weeks have been rather difficult in our household. My husband has been experiencing a number of deteriorating symptoms as he and I travel in this alternate universe called dementia. It became necessary to put him on a prescription that is meant to calm him. A move I was reluctant to make. But it did become a matter of necessity. Happily it appears to be helping.

He is slower. His communication skills have dropped precipitously. He is quickly losing control over his bodily functions. We have had much learning and adjusting to accomplish. Today he was becoming quite (actually royally) peeved with me because I would not take him to some imagined meeting he could not miss. This went on for a couple of hours and I suddenly realized that I was not upset. I was not tearing my hair out wondering what I was doing wrong. I was not yelling at the top of my lungs that I was doing the best I could. In fact, I started to giggle.

Standing in our kitchen looking at my beloved spouse, now so far from me, I realized that I was doing the best I could. Simple, right? Not really. Any caregiver can tell you that no matter how hard we try, somewhere deep inside we feel inadequate. We are not creating a perfect world for that one person we care so much about. We are not fixing it. And, sadly, we won’t. You know what else? It’s not our fault.

I could not do what he wanted and needed so badly for me to do right that very minute; and I did not feel a single ounce of guilt. Not one drop. At one point I was able to let him talk on the phone with our caregiver (we were setting up times for tomorrow) and he was promised she would be here and they would talk – and it worked. It wasn’t a desperate cry for help, it was a practical solution.

Can I keep this feeling? Cling to it for the release and freedom it gives me? Probably no more so than anyone leaving the Sunday-night revival and heading to work on Monday morning. But now I have a secret. I know what it feels like. And I can get back there. And from that place I will gain strength and I will do the best I can. I did not do this to him. It is not my fault.

Warning: The following clip does contain “South-Boston” language.  It is a scene from Good Will Hunting when Matt Damon and Robin Williams are discussing – it’s not your fault.

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Reflections ~ The Promises You Keep

One of the things about this sort of therapy is that when you have life-changing events they tend to find their expression in this very private/public way. I have shared the moments of my life with my husband in part to give me voice, and in part to light up the dark cave of this disease with my own tiny flashlight. This past weekend we have, I suppose, passed another milestone.

I think (though I’ll never be certain) it all started when I chose to save a bit of time and stop at a grocery store where, he has decided, the people don’t like him. Things were okay for a short while after we got home and then everything went south. He couldn’t understand after all he had done for me, and knowing how much he cared, that I could have done such a terrible thing. He was leaving. Now.

After an hour of following him back and forth in the street, apologizing to a neighbor after he knocked on the door (twice), and not being able to get him in the car (in hopes of getting him to the clinic) I called 911.

Two patrol cars and a fire truck later things were much calmer. All vitals checked, even though his pulse rate and blood pressure were elevated. He assured the officers, multiple times, that he had not hit me, that he did want to stay, that he didn’t want to lose me. Of course 10 minutes after they were gone he was asking where I had gone.

Sunday was rather calm and I actually got a number of things taken care of. Bits of domestic this and that I rarely have time to do. Then came today, Monday.

He was quite cheery early in the day but he decided that we must have lunch at 9:30. Not wanting to get him stirred up again I complied. Sometime during lunch he decided he had to go. I had already messaged the doctor about an appointment to discuss meds, but with this new outburst it looked like we were on Plan B. I told him I wasn’t feeling well and I needed him with me at the doctor’s. Well, that was Okay if I promised to drop him off on the way back.

I wasn’t going to risk not being able to get him in the car again, so off to the clinic we went a good 2 hours before the appointment. He was extremely nervous anytime I had to leave him alone. When we did get in, he was more communicative with his doctor than he has ever been. Sum total? He didn’t want to lose me. So we did what I swore I would not do until there was no other choice, we got a prescription. That would be for him, not me.

I guess when you think about it, if one of his strongest emotions is that he does not want to lose me, but every time he “sees” me I’m someone different – well, how many times a day does he “lose” me?

I’ve always tried to be honest about my decisions so that others can benefit in some way. I chose not to use medication until the last possible moment due to side effects and the impact they may have on his other health issues. It is also clear to me that the decisions I make in his care are mine to make as long as I am prepared for the consequences. However, when those choices begin to impact those around us I need to rethink my strategy.

In recent weeks I have acquired a number of supporters that are able and willing to help me find the right path for us. Tonight the owners of the home care company I am currently using came to our door. Why? To go over what had happened and to see if that required any changes in the way we had planned support, and to see if I was Okay.

People in my circumstances need to know that they are not alone. Not all areas have the same support systems that are available to me. Not all people have friends and family ready to step in, to listen, or just be around to talk about what is happening or things completely unrelated to your role as a caregiver. And not all people are involved in a company that notices your absence in the daily give and take on social media and start the process to find you and make sure that things are okay. I can, however, tell you, you don’t have to be alone. Really.

Photo Credit Fotosearch.com

Photo Credit Fotosearch.com

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Reflections ~ Sugared Wine and No More Burritos

Courtesy WANA Commons, Lynn Kelley Author

Courtesy WANA Commons, Lynn Kelley Author

I mentioned a change. An adventure into the unknown. Now, it is known. My conclusion? Sugared Wine and No More Burritos. I shall explain.

 

 

As mentioned several weeks ago I decided to embark on a trial run with a day center. Some place hubby could be engaged for 4 hours while I did, well, stuff. The first visit was a bit rocky but the center’s administrator and I felt that it was the first visit and the problem may have been that we had not taken the time to reinforce the idea that I was really coming back.

Second week. I spent quite a bit of time reinforcing the idea of the nice exercises, the people to talk to, and the courses for teaching. And, yes I would be back to get him. It went, well, better. Meanwhile, I managed to complete a project at home I had been reluctant to start and ate – a burrito.

Several hours after we arrived home, he came to me and asked me what I thought of the place. I told him I thought it would be good for both of us. He agreed. Then came the 4th of July weekend and no visit.

Today, on the way to the center, I again did the reinforcement thing. Made sure that when I walked him into the room that everything was good and reassured him I would be back. Then I scurried back to the house for 4 hours of uninterrupted focus on my day job. Oh, on the way I picked up what I was beginning to think of as my Friday Burrito.

One load of wash, a burrito, and 30 minutes of actual work later; there’s a knock on the door. Standing in my carport was the lovely lady that I had arranged to see for “caregiving counselling.” When did I start forgetting appointments? No, no, come in, let me just clock out and we’ll have a chat while he’s not here.

It really was a nice chat. I am finding resources that don’t always know the answer right away, but they are willing to find out. So, we chatted about what I would like to accomplish in this world of caregiving. Just about the time we were winding up (she knew my job was tugging me), the phone rang.

Evidently hubby was getting quite agitated and wanted to know where in the dickens I had gotten off to. Unknown to me, he was agitated enough to raise his voice. Say bye to nice lady and ask her to check on in-home resources, flip laundry, hop in car, hit every traffic light in red mode and arrive at center.

The moment he sees me he becomes Mr. Jovial, laughing, teasing and flirting. Well, it’s not exactly the point that I go with him, now is it? Deep sigh. Request for other resources if they know of any. Drive home with Mr. Happy Face.

After an afternoon of trying to catch up on poor neglected Day Job I finally decide to soak and fix something for dinner. As is usual, my wine is waiting on the dining room table, this time in a cup. Whatever, it still tastes the same – or does it? On the off chance I am poisoning myself with copious amounts of something-related-to-sugar I stick my finger in the bottom of the cup. Umm, no. One does not need half a cup of sugar with white wine of any vintage. *Sigh.* I think I’ll go prepare chicken with his favorite maple syrup sauce and find the wine bottle.

Courtesy WANA Commons, Jenn Smitherman

Courtesy WANA Commons, Jenn Smitherman

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Reflections ~ Spring is in the air, move over dust bunnies

Photo Courtesy of Elizabeth Mueller, illustrator, photographer PDMI Publishing, LLC

Photo Courtesy of Elizabeth Mueller, illustrator, photographer PDMI Publishing, LLC

Spring Cleaning. It sounds like clean sheets, dried in the yard with spring breezes. Sparkling glassware and light covers, dusted out corners, the annual eviction of spiders and bugs back into the yard where they belong. What a lovely euphemism for a process that sometimes requires back-breaking hard work, sentimental and heartbreaking journeys. “Why did we keep this?” “How can I ever let this go?” “Honestly, how much weight do I think I can lose before this becomes moth-dust?”

This year my spring cleaning takes on a different cast. A bit darker, and certainly a bit more stressful. For months my husband has been moving “stuff” from “his” room to the spare bedroom. Clothes he does not believe belong to him. Books and magazines he brought upstairs from the library below and now does not want. Small and medium boxes of the collected mementos of a long and somewhat colorful life.

When it was all said and done, we managed to haul off half a dozen bags of clothes, shoes barely worn, belts and ties, a couple of boxes of the previous dish set, a portable heater, the infamous exercise bike mentioned in my book, and other assorted tid bits to the lineup at Goodwill. Always refreshing when it’s all done but a bit of a chore in the process.

Spring also speaks to thoughts of migrations. The great seasonal movements of beasties that fly, crawl, hop, skip and even drive from one climate to another. Foraging, seeking mates, resting weary bones. It is a season that speaks of future things. Some bright, some sad beginnings of another stage in life.

I, too, am beginning a migration. It is one that I expected but that sneaked up behind me at a vulnerable moment and knocked me off my trolley. When it comes to the vagaries of dementia, recognition of family members seems to disappear early in the process. It did for us. That is, of course, the inspiration for the title to my book, Who I Am Yesterday. Now days he will sit by my side as I work and look at my Facebook page pointing to the photo of “Victoria Adams” and tell me, “If we could find her, boy, does she know what she is doing.” Then I guess I better get busy and find that woman.

Along with lack of recognition you know, deep down in your heart, there will come a day when you are no longer welcome in your own bedroom. So far, I’ve been lucky. In fact some nights it seems as though he cannot sleep until I am there. But, it has begun. There came a night when I was not welcome and, consequently, ended up on the couch. The next night when I was not recognized during my first attempt to retire, I was informed he was saving the spot for someone else. Fifteen minutes later he was in my office wondering why I hadn’t come to bed.

Our couch is not all that conducive to a good night’s sleep; especially with the disadvantage of arthritic bones. So, part of my spring cleaning adventure was to exchange the exercise bike for a standby, roll up bed. I’ve taken a liking to late-night Yoga anyway. It could not be something that would get him worried about extra visitors; but something that would give me a landing place should the need arise. Next stop – my office.

So another spring to clean out the corners, rearrange life and prepare for the next migration.

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My career as an author

Well, things are moving along quite well in the world of writing.  My first book Who I Am Yesterday, is beginning to get quite a bit of exposure.  A number of reviews have been added to the Amazon listing, and I have been invited to speak to a local group not far from my home.  Some of this great exposure is coming with the help of a person I hired to help my husband.  With his experience in the field he felt it should be marketed more aggressively.  So, between my growing network of friends on social media and through this blog and the devoted efforts of a personal marketer, my little book is starting to make an impact.  Here is the latest review by Kathy Ree.

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The File Cabinet Caper – Part I

Photo courtesy of DaniJace of WANA Commons

Photo courtesy of DaniJace of WANA Commons

Well, at least some of my friends know that this week has been one harrowing experience.  The storm began to brew on April 23 when I finally broke down and hired a locksmith to come fix the lock on one of my husband’s 4-drawer lateral file cabinets. No, this is not the fire safe cabinet introduced in my book; this is a completely different tale.

I had, actually, made an effort to remove the lock so that I could deliver it to our local locksmith and have a key made.  I did not get very far in this project before I realized this was not a simple task.  Thus, the call to the kind of locksmith that travels around in a vehicle full of lock stuff.

Very nice young man shows up and looks at the lock.  After-market – old, super security lock – can’t make a key – must replace lock.  Sigh.  So, he extracts the lock and leaves to search for a replacement lock.  Evidently such a thing does not exist.  Said nice young man has researched suppliers from Canada to California and who knows where else.  Is this something that you can explain to a person suffering from dementia?  Sure; about 50 times a day.

Meanwhile; I discover that he (my husband) has an issue with the two file cabinets and are perfectly fine, have keys and lock rather nicely.  The drawers only work certain times of day.  “See, I can’t open this one.” “Sweetheart, you already have a drawer open.  You can only open one drawer at a time so it doesn’t fall down on top of you.” “Oh. But they only work certain times of the day.”  This conversation went downhill in a hurry.  I think I’ll leave out the various names I heard “that woman” called the next morning.

Back downstairs we go.  “Does this one work?”  Note to reader, this 4-drawer lateral file cabinet is of the sort that the front panels rotate up above the drawer and you can see what is inside.  You can still only have one drawer at a time pulled out, but you can see what is in the drawer.  And it locks and we have a key. “Yes, this one is fine.”  Okay, next step.

Knowing that there is no way on earth he could comprehend what he was looking at by viewing a picture on the computer screen, we went on a shopping trip today.  For reasons beyond me neither office supply store had a storage cabinet in the display area.  So, after a try at a department store kind of place, we arrived at a big box hardware store (no ads in my blogs unless you are an author).

In aisle thirty-something we locate what I was looking for, a locking storage cabinet.  This appears to be acceptable, but it is too tall.  Why, because it is bolted to the display counter and the feet are barely at eye level.  Yes it would be Okay, but do we have a ladder?  Sigh.  “So, if I could find one that is about so (5 ½ feet) would that be Okay?”  “Yes, I think that would work.”  (Shudder, “think it would work” always gets me in trouble).  I proceed to carefully explain my plan to go home so I can shop price and order the thing on line.

Almost out the door, “Where are we going?”  “Home.” “Aren’t we going to get it?”  Now, the cabinet that we are looking at is 30” X 18” X 72.9” – we are getting three of them.  I drive a Saturn Vue.  I will grant we have a rack on top, but I don’t see me loading these steel creatures on top of our car, driving home, and then packing them down our stairs.  This is a concept that will be mentioned later.

Finally, we manage to get home and I start looking for alternatives.  Poor lady at online office supply store, two of the cabinets I ask about are out of stock.  So, I settle for something wider (do you think he will notice)?  Delivery planned for Wednesday.  Duly marked on calendar.  Next step.

“Will you go with me?”  “Go where?” “I tried to tell her (the woman that took him – that would be me) that we could talk to the lady up front and get the one we wanted.”  “Sweetheart, I can’t move cabinets that big.  I need help.  And there are things in the room we need to get out first.”  “But I know where we can get it.”  I think I managed with pictures and calendar markings to explain that the cabinets were on the way.  Nice strong men would move them for us, and I wouldn’t have to try to haul them home.  I also had to explain that these were not the kind of things we put together at home.  In the past I have purchased a number of bookcases, hauled them home, moved them in piece by piece and then assembled them.  Won’t work here.  Somehow we managed to move on.

The filing room downstairs contains 4 4-drawer lateral file cabinets plus 4 4-drawer vertical file cabinets.  Something has to move or the new cabinets aren’t going anywhere but the hall.  That means that the things in those cabinets must be moved.  “Where.”  “Please put them here.”  “Why?” “Because we need to use the back door.”  “Oh.”

You have to realize that all this paperwork only represents about 70-80% of his research files – the rest is still in boxes.  He spends a great deal of time moving this stuff around.  Sometimes because people tell him he can’t have a certain spot (so I put his name on the door) or because someone complained about how he did it (I probably made a suggestion).  But, for the most part, over the past month or so he has been trying to take files off the book shelves and put them in the filing room.  This is a good thing.  But now we have to undo that process in order to try to resolve the problem of the file cabinets that “don’t work.”

“Victoria,” you may ask, “why are you replacing perfectly good file cabinets in an effort to fix this problem that exists only in his mind?”  Probably because I like to carry on conversations, complete my work for my clients, and even write a blog or two.  He has been camped out in my office many times in the last week discussing and re-discussing various aspects of this problem.

Do I really maintain this rather oblique sense of humor during these episodes?  No.  And I really don’t know where this one is going.  I’ll have to share part two after Wednesday when, hopefully, the new cabinets are here.  I am also hoping I manage to find a home for the old file cabinets which will be under a tarp on the back porch because there is nowhere else for them to go.

If you don’t hear from me, I’ll be in the corner of my office staring at the ceiling and mumbling campfire songs.  Forgive me if I’m drooling.

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Reflections ~ When Did I Learn Not to Cry?

newpath2Yes, I know it has been a bit since I posted and, well, there really isn’t any excuse.  I did write a guest blog for my friend Stacey Brewer.  It appeared here on her site as part of Blogging from A to Z.  It was a fun post and generated feedback for both of us.  Other than that, life just got in the way a bit.  That, of course, brings me to this post.  One that it appears I must write or my head will not move on to other subjects.

As of this month it will have been two years since my husband and I visited Vancouver Island.  For those of you who have read my book, Who I Am Yesterday, you will know that this was my “moment of awakening.”  It was during our trip to the beautiful Canadian coast I was forced to realize that my husband would never be the same again; his dementia had become a full-blown reality.

Who I Am Yesterday is about my journey during the first year, more or less.  I describe some of the things I have learned that work for us, for me.  It also draws out some of the feelings I had while I learned to deal with this changed lifestyle; and how I conquered fear, sadness, frustration and a myriad of other emotions.

Those of you who visit my Alcove may have also read a blog or two or a poem or two which describe my continuing journey.   It has not been easy and there are many times I wondered why I thought I could handle the many aspects of caring for someone whose world no longer resembled the reality most of us live in every day.  It is difficult learning and internalizing that a person with dementia lives in a reality which changes with every passing minute.  It is, however, reality to them.  This, then, is what we will call an anniversary piece.

When last I wrote on the subject I explained what I had learned about how the mind affected by dementia “sees.”  In that piece, “Do you see what I see, do I see what you see, is it really there?” I explained some small part of how the brain works.  Although I have had access to a great deal of the information for some time, this was a moment when it really sunk in.  I somehow knew how he saw the things he did, even if I couldn’t.   At the time I mentioned that I wasn’t sure if it would give me answers for him or solve the problem, but that it did help me develop a bit more patience.

As it turns out it really was an epiphany.  This moment of insight lead to a point when so much of my frustration, anger and pain, well, released.  I know this is true because I have learned not to cry.  I still get emotional, my eyes will well up, I take deep breaths; but I don’t weep.  There were, after all this time, still some conversations (confrontations) that would turn me into a total basket case.  And now, well, they are just part of the day to day happenings that one must deal with.   Here is the story.

There appears to be a high probability that my husband dealt with some form of schizophrenia most of his life.  There were people that lived in his mind and nowhere else (or somewhere other than the present).  However, now he no longer has the faculties to keep these mentally constructed worlds separate.  As mentioned in my book, the walls in his mind are breaking down and he can no longer successfully tie a person to an event with any regular accuracy.  Most notably me.   When I began to internalize how he perceived the world and the people in it, I became far more tolerant of all these “extras” in our lives.

This is meaningful because now when he asks me where “he” or “she” or “they” went I come back with “You and I are the only ones here. I took you to the store, I cooked dinner, and I have been in the office all day…that was me.”  He is confused, and I must repeat, but there is a difference. He appears far calmer than he was when I would get gradually more frustrated and finally declare that I didn’t care who they were.  They didn’t belong here and I really didn’t care where they were now.

When you think about it, calmly explaining that things are as they should be and reassuring the individual that things are under control is far better than flying in a rage and screaming you have no idea who these people are, where they are or why they were here.  Now, however many times it takes, I carefully explain who is here, was here and did what.  Eventually he will quietly say, “I see.”   3…2…1 – “but where did he go?”  And so we start again.

The next lesson was harder.  Even more so because it was a lesson I had to learn earlier in life and seem destined, somehow, to repeat.  It’s not my fault.  There is a scene in Good Will Hunting when Sean Maguire (Robin Williams) tells Will Hunting (Matt Damon) a number of times, “It’s not your fault.”  At the time Maguire is looking through Hunting’s case file which shows the abuse he received from an alcoholic father.  “It’s not your fault.”  I cried when I saw it; I too had to learn, “It’s not my fault.”  Here I am again, learning the same lesson.

On occasion, when things would get intense between us and the agitation would build, he would declare he didn’t belong here, he would have to find somewhere to go.  This conversation might have started for any number of reasons but it often escalated because I didn’t have the time, or sometimes wouldn’t take the time, to focus on whatever his issue of the moment might be.  After repeating myself for a number of times I would run out of patience.  Things would end with me walking out of the room announcing that he could let me know when he found someplace to stay.  This is basically a kick in the teeth to someone who controls little or nothing in their own lives.

From his point of view, if things weren’t working he’d best move on.  Logically I knew he did not have any way of locating a place or of getting there.  There were even conversations with his eldest son about whether or not there was room for Dad in their home.  Gently, it was explained, no there wasn’t.  I usually tried to prepare my stepson for these conversations whenever I could.  His unbelievable patience was always there reassuring, but firmly saying no.  He helped keep things reasonably calm on a number of occasions.

I believe that another aspect of “this place” is his firm belief that there are all sorts of people that come and go.  One night he had me in tears from giggling because he was turning the bedroom upside down looking for pillows for me.  The ones on the bed were used by that other lady and he did not want me to be without.  He had even arranged the pillows on the bed to leave room for me next to him.  I found some pillows in a closet and let him know that if I got to bed and needed some, I knew where to find them.  He was finally able to settle down and go to sleep.  It was all I could do not to laugh out loud but I thought it was terribly sweet that he was concerned that all of his ladies had pillows. More importantly, if I saw that many people coming and going as they pleased, I guess I would want to move, too.

That, of course, was part of the key.  It wasn’t me he was running from.  In fact, there were times when he made it clear he wanted me to come with him.  He wanted to leave the ghosts in his mind behind.  He wanted to find a place where he had more control.  No, it was not my fault:  and suddenly the sad tears went away.

There are still times when I have to get very firm and a bit agitated to get him to break off from a subject.  Especially if there is absolutely nothing I can do at the moment or I am on the phone or trying to meet a deadline.  There are times when I get the definite impression that I am not me; so I quietly separate myself and let him work through it.  He is always glad to see me when I come “back.”  I do not expect things to suddenly seem just fine.  I do know that things are a lot less wearing on me and that does count in the dance of care giving.  It does, however, hurt far less because it is no longer personal.  It is part of who he is now.  I still have the moments when, near to tears himself, he tells me he loves me and doesn’t want to lose me.  To the best of my ability I intend to make sure he doesn’t.

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Reflections ~ Do You See What I See; Do I see What You See, Is It Really There?

This week I am going to share an epiphany. It didn’t help me completely solve the problem of the moment, but it did give me a clearer picture of what it would mean to be inside my husband’s head. It kept a situation from turning into another cycle of stress and emotional upheaval. I’m not sure how long this euphoric moment will last, but it is an insight worth sharing.

As with all insights, this one did not spring fully formed into my head; it was the result of accumulated information and experience that finally fell into some useful bit of realization. Ever since I have acknowledged my husband’s dementia (about two years now) I have been reading, searching, learning, watching and digging up every piece of relevant information I could find. This, of course, is part of the reason I wrote the book, Who I Am Yesterday. This week I took another step in understanding that incredible organ snuggled in our cranium called the brain.

The adult human brain weighs approximately 3 pounds, only 2% or less of our body weight. It consumes 25% of our intake of oxygen, 70% of the glucose we consume and 25% of any nutrients we consume. It contains some 100 billion neurons and somewhere around 100,000 miles of vessels, capillaries and other transport systems. Those vessels pump 1.5 pints of blood through the brain each minute. All those little neurons are connected through 1 quadrillion connections. Some 83% of the neurons are in the cerebral cortex which consists of 6 layers. The cerebral cortex is all bunched up on the surface of the brain so it will fit inside our craniums. Total surface area would stretch out to something like 16” X 22”. And that’s just the cognitive part.

Neuroscience has discovered much about how the brain operates, and we’ve only, well, scratched the surface. We are, however, learning how memories are formed, and how the brain can “rewrite” its own memory, change relationships between memories, burn some deeper than others, or forget everything all together. Memory, in fact, helps us build our perception of our future.  We are also learning something about what makes some of us geniuses, and what causes the truly brilliant mind to dance so closely to madness; or to fall completely under its spell.

I say all of this because how the brain works utterly fascinates me. Both because, at heart, I am a philosopher and because it shows me much of what my husband has been and what he is now. It gives me a perspective I would not otherwise enjoy. So, what, then, was my epiphany? How my husband “sees.”

Our brains do an incredible job of interpreting the world around us using our five senses. Everything we know, after all, starts with seeing, hearing, tasting, feeling and smelling. Although that input seems seamless to us it really isn’t. In order to save “storage space” and to process things quickly, our brains pick up pieces of what we see and convert that to a whole picture. And, while it seems instantaneous it actually does take a measurable amount of time between sensory input and mental interpretation. It also creates a “story” to inform you what the thing you see/hear/feel/taste/smell means and what you should do about it. There is only one problem with this marvelous creation – our brains lie. Yes really.

There are a number of ways this can happen. Let’s have just a bit of fun looking at ways this happens that you probably already know about but haven’t really thought of in this context. There are two specific areas I really want to address in this blog. One is how we see the plethora of colors, shapes, distances, and movements around us and form some idea of what it all means. The second is that when we “see” something, it is often only relevant when seen in a certain order. In other words, we can’t make sense of something that occurs when our attention is elsewhere or when our comprehension of the order of events is not correct.

Let us start with something simple and familiar, optical illusions. How we interpret pictures or objects is dependent on how our mind interprets the information. Here are two simple examples.

parallel lines

In this simple test you look at the graphic and determine if you see straight or curved lines. Does your brain bend the lines because it is fooled by the diagonals in the background? This is a familiar optical illusion, but effective in illustrating my point. Now, something a bit different.

lightbulb

Stare at the black light bulb for the count of 30 (not much more or the effect will last longer that you care for). When you look away you will see a “negative” of the image, a glowing light bulb.

Here is a different type of illusion, camouflage.   Can you find the owl in these pictures?

owls

You will find these photos and similar challenges on Google here.

Here’s one more “test.” This is one that has been all over the web, Facebook included, so you may be familiar with it already. Problem is, if you know the trick you miss the message. So, here is a video to watch. I’ll wait.

Selective Attention Test

Now you know. When our attention is directed at a specific activity, we can completely miss critical pieces of information. This is one of the reasons why eye witnesses can be so unreliable. What you remember is based on your experience, what is important to you and how important the event is to you. Doesn’t that give “distracted driver” a whole new meaning! The story behind this test can be found here:

Bet you Didn’t Notice the Invisible Gorilla

These quick exercises are meant to show the reader that “seeing” is an interpretive act, even when we firmly believe we are in possession of all our faculties. Now imagine what happens when those faculties start to slip. What happens if we have a difficult time managing our visual input normally, when the brain begins to fail, our memory data banks are corrupted, or time becomes rather “mushy.” That, you see, is the other major element.

When you can no longer keep track of what comes before what or what causes what then what you see can be what your mind remembers from some other time or place. Here is the event that led me down this path this week. In our home we have a large window that looks out over our car port. The roof line allows a clear view of our car. My husband came to me in my office terribly concerned because he saw people in our car. A man and a woman. There was, of course, no one there. After I convinced him that nothing would happen to me, I put a coat on and went outside. I opened all the doors, crawled inside the car, closed the doors and locked them, then went around the car checking the locks. On the second trip I walked around the house while he watched me from the windows. Eventually the incident subsided. As I thought about it I realized that in his mind he could be seeing us. He could have been seeing me behind the wheel and him in the passenger seat just as we are several times a week. He had no way of sorting the sequence in his mind so any bit of motion would trigger his mind to “remember” something in a different way than what I saw to be clearly in error.

This gave me insight and a whole lot more patience than in previous situations that were similar. I suddenly realized that the people he sees and hears (even me in my many, many personas) are real in his brain. We are hardwired to trust that brain, it is supposed to keep us safe. What must it feel like when someone is trying to tell you that what you see and hear does not exist? What abyss yawns before you if you can’t trust your own senses?

This then, was my epiphany. I may not be able to come up with a satisfactory answer as to “where they went,” “why they are there,” or a thousand other questions that come up in our lives together. I will, however, get a lot further along in helping him through those moments if I don’t cast constant doubt on his interpretation of things. He will not change, he cannot understand the problem, and there is no reason to badger him about what he does or does not understand.

I think that there is a similar problem when dealing with schizophrenia. Dr. David Eagleman of the Baylor College of Medicine feels that many mental illnesses have to do with the inability of the brain to properly handle time. In other words, the individual loses the ability to correctly identify cause and effect. I feel that this is true, but that much of the problem also lies in the way the brain interprets input. What gets past our five senses is, to our brains, reality. Whether or not anyone else sees what we see, to us it is very, very real. I have learned that my husband’s innate ability to see patterns, to build mathematical representations of how we think in order to teach computers how to think is now betraying him. He sees patterns where they do not exist and, once they take up residence in his brain, they are real. His reality is teaching me patience with mine.

In the movie “A Beautiful Mind,” there is a scene where Dr. Nash is approached by a gentleman after one of his classes. He turns to one of his students and asks if the man is real. Once existence is established he jokes and indicates that it’s always safer to check. The more I learn about my husband the more I realize that he somehow managed to navigate a world that was constantly shifting and didn’t always have the same elements, occurrences, people or places that existed for those around him. I don’t know if that leaves you incredibly lonely or never at a loss for someone to talk to. I know that understanding something of his world makes mine a whole lot easier to live with.

As you may know, I’ve written a little book about our journey during the first year after his diagnosis of vascular dementia. It contains the story of how I came to acknowledge his condition and how I learned to cope with that and the realization that his world had always been a shade off center reality. I’m told there are many useful bits, a bit of sad, a bit of funny, and a lot of encouragement. Even those who are not presently dealing with dementia in the family or as a caregiver tell me they find things of value within its pages. It’s available on Amazon.com: Who I Am Yesterday: A Path to Coping with a Loved One’s Dementia.

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Filed under Caregiving Backstage, Natural Sciences from the Observation Deck, Personal Journeys

Reflections ~ an Afterword to Who I Am Yesterday

I am working on a few bits and pieces to add to a re-release of my book:  Who I Am Yesterday.    These, of course, are more interpretive and give you insight to my thoughts, my day to day amazement and sadness.

I ponder, at times
Just how you’d feel
If you knew the person,
The you that is now.

I know there’d be anger,
Frustration, rebellion
Is there then wisdom
In the theft of your mind?

I know that you’re lost,
Unsure, confused.
Thus I shudder to think
What you’d do if you knew.

Locked in your mind,
Fighting to learn
Each simple task
Just to show you still can.

Wanting to go
Somewhere to work
To contribute or die
Yet still locked in your mind.

You reach so hard
For the things you’ve lost
The appointment forgotten
The trip you won’t take

Yet you remain focused
Many hours each day
On your books, your papers
Your unfinished works

I’m never quite sure
How the anger you’ve known
Stays locked beneath
This man you’ve become

And yet your love for me
Still finds some way
To whomever I am
Each hour each day

In the dead of the night
I lie awake
Craving what was
Yet grasping the now

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Filed under Authored Works, Caregiving Backstage, Personal Journeys