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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Introducing Dementia – A Glimpse from the Eyes of the Afflicted: Part the Second

I posted the first segment of this series on June 9.  The title was Launching my Speaking Career: Part the First and it provided first segment of a talk that I give.  This is the second part of that talk, a piece that I hope will give my readers some understanding of how the mind suffering from dementia handles the concept of time.  So here we talk about Time, the biggest abstract of all.

Time is such an elusive concept that even philosophers, neurologists, physicists, cosmologists and mathematicians have difficulty trying to describe exactly what time is.   It drives us, eludes us, and holds us captive.  Unless, of course, our mind no longer understands just what it is that this thing “time” demands.  Some very good resources that describe what we do and do not know about time are Fabric of the Cosmos by Brian Greene (in Book and DVD form) and an episode entitled “Does Time Really Exist” from Through the Wormhole with Morgan Freeman(among others). And yet, with all of the complexity we are discovering about time or space-time, those of us with basic cognitive abilities manage to work within its constraints.  Even tribes in the deep of Amazon jungles which have no terms for “time” do have a concept of which season follows which and what activities one does during each of those seasons.

Time as a concept in any form fails almost entirely within the mind affected by dementia.  When that happens, an amazing number of anchor points in our lives no longer exist.  You might think of a ship at sea suffering from a sudden loss of navigation systems when it’s too cloudy to see the stars.

Losing the “navigation” system of our lives causes a number of issues.  For instance, one of the things time does is provide a sequence of events.  It provides a logical framework for cause and effect in the activities going on around us.  I have included some photographs in this article to better illustrate my point.

 

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The first one in the series is a sequence of a person climbing on a rock.  Looking at the picture, can you tell if the sequence shows the person climbing up or down the rock?  Can you be certain of where the sequence begins?

The second photograph shows a sequence of a girl in a swing.  Is it evident when the camera first started to record the action?  Did the action in the shoot start at the top of her swing to the right, the left?  Was she at the bottom of her swing?

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The last photo is easier.  You can tell what the appropriate sequence is once you look closely enough.  However, was it immediately apparent?  Did your eye automatically travel from left to right before you stopped and looked closely enough to see the direction the skateboarder was really traveling?

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(All photos are examples used by Photoshop to illustrate sequence photography and the use of the program).

For an individual that still retains their cognitive abilities exercises such as these are merely quirks of perception.  However, they illustrate a very real problem when discussing the perception of a person with dementia.  The inability to correctly identify the order of a sequence of events can have far reaching impacts.

I find that my husband goes from understanding that an event will not take place until later today, tomorrow, or next week, to having no concept of “wait.”  Whatever it is must happen right now this minute.  Or, knowing that we are going somewhere at 1:00, he’ll be ready to go a 10:00 and will get frustrated at me for waiting so long to leave.  Often he decides he is not going at all.  This happens with doctor’s appointments where I don’t have a lot of time flexibility.  So, I try to schedule as early in the morning as I can. This kind of planning reduces stress on both the care giver and their charge.

Time warping (if you will) also impacts sleep patterns.  So far my husband and I have managed well most of the time.  I will not get up before 4:00.  If he presses the issue I will start his shower and go back to bed.  Sometimes he is very apologetic, sometimes we just work through the situation.  If you live in an area where the seasons cause a large variation in the daylight hours, it can be even more difficult.  I know that sometimes in the far north I will wake up thinking I have overslept and yet it is still “night.”  Think of how that works out in a mind no longer able to track time.  Occasionally I have a very difficult time convincing him it is still the middle of the night with or without light.  I have learned that to some extent I have to let him be up and around.  I no longer take it personally if he gets upset because I remain in bed.  He will, eventually, get over it.

I mention in my book that I feel that time displacement could be a factor in Sundowning.  This is a condition experienced by many folks with dementia which causes them to sleep during the day and be up and wandering around most of the night.  I don’t think that is the problem that I currently face.  I do feel, however that this, and other types of time disorientation can be mitigated by using routine.  Depending on the severity of the situation, routine can conquer a number of issues.

To the best of my ability we do the same or similar things every day, week day or not and we do them at close to the same times and in the same order.  I realize that can’t always happen; life doesn’t come in neat packages.  However, to the best of your ability, keeping a regular schedule, every day and in a similar order helps a person with dementia develop a set of simple expectations.  I notice that when I put things out of order my husband gets terribly confused and works to bring things back to normal.  An illustration might help in this instance.

Not so long ago I found it necessary to replace my husband’s file cabinets with something easier for him to operate.  He no longer understood that you can only open one drawer at a time. To him, they were broken.  After trying a number of solutions to the problem I finally gave up and ordered some storage cabinets with doors.  Through the whole process, emptying old cabinets, moving old cabinets, waiting for new cabinets, reloading new cabinets, he was almost constantly agitated.  He was so upset over the whole affair that he completely lost his appetite and ended up taking naps a few days.

The real problem came the first day the cabinets were expected.  I received a brief, automated message that said my cabinets were late and would be delivered on the 15th.  That was the day they were supposed to be delivered.  All day on the phone and I never received a firm answer as to whether or not the cabinets would arrive that day.  I even fixed dinner before we went to the store so we wouldn’t keep him up too terribly late and so I could still wait to the last possible moment a UPS truck might arrive.  They never did.  In the meantime the routine had been broken.  When we returned from the store, as late as it was, he began setting the table for dinner.  It was far easier to fix a bedtime snack than to try to explain that our “routine” had been disturbed and we had already eaten.  Habits are life savers and you should try your best to create and maintain them.

Another tool I find useful is calendar counting.  Whenever it is obvious that something is important to him I mark it on the calendar and we count each day as it goes by.  This method doesn’t solve all issues (such as “no one told me we were going to the dentist then”).  It is a way of imposing structure where there is none.   As a side note you need to remember that “reminding” a person with dementia that you have told them certain things and have done so a thousand times is counter-productive.  It will infuse the situation with emotionally charged reactions that accomplish nothing.  I have learned to respond with something like, “Well, someone was supposed to, I will try to find out what happened.”

We talked a bit about sequences of events.  There is another aspect to drawing correct conclusions from what you see or think you see and in what order your brain interprets them. I recently watched a program which presented the work of an Associate Professor of Psychology.  Donna Rose Addis works at the University of Auckland and her research involves using MRI scans to see how our hippocampus contributes to our ability to construct future events.  The hippocampus, you may know, is the seat of our memory.  This is the storage room for all the things we know and can recall.  What her research has shown is that when we are asked to build a possible scenario about a future event, we rely quite heavily on our past experience.

This all seems reasonable when you think about it.  We learn by analogy.  We compare new things to the things we know and draw conclusions based on similarities.  What happens, though, when the storage room no longer functions adequately?  How do you envision a future event if you can no longer track the sequence of events that might lead up to it?  Going on a trip to visit your children or relatives in another state doesn’t mean much if the mind can no longer draw reasonably successful comparisons based on previous trips.  It’s that time thing again.  Losing the grasp of the sequence of life, of what actions cause what outcomes, sets the individual adrift on a cloudy sea without a navigation system.  Consider this when your patience wears thin.

I am being asked to publish and expanded version of Who I Am Yesterday.  The project will include a re-write of related articles from my blog, some poems, and photos from our week on Vancouver Island; the point it all suddenly changed.   Projected release is sometime late this fall.  In the meantime, the original can be found on Amazon.com or at the link provided on the page dedicated to the work on this blog.  Do you have an experience you would like to share?

This series has one more post in it:  the shifting sea of who we are and all those extra people.

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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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