In Prep For A Meeting With Our City Counsel & Police Chief

A great many are focused on race, and I think that is extremely important….however not the only problem.  Along with race, we also have the autism issue…kids and adults that are not going to behave as expected.  But, all that is only a symptom of the REAL problem at hand…which is, that for the last 10 years plus….police have been creating policies that increasingly violate the laws and our constitutional rights.

I am sure I am not the only one who reads the comments on the police shooting videos…but our biggest threat, beyond these illegal policies, is our own neighbors who seemingly have forgotten the laws of this land. America isn’t great because you can rape a child, impregnate her, force her to have your kid, and force her to marry you, and rape her some more. American isn’t great because you can throw sick, disabled babies out in the streets to starve and die. American isn’t great because you can shoot a black man and get away with it. American isn’t great because sadists in blue can slaughter innocent people…slaughter “innocent” American citizens (and I use the word “innocent” with great care).

America is great because our founding documents, that grant us a very specific and exacting freedom….that NO person may be deprived of ANY of their liberties (detained, lost rights, loss of life) without what is known as Due Process.  Due Process is a day in court, a trial by the jury of ones peers and a chance to have ones side heard.

In THIS country, ALL people are INNOCENT until a jury of their peers finds them guilty and deserving of a loss of their liberties.  Many have forgotten that THIS, and this alone, is what makes THIS country great…and is what sets us apart from all other countries where people are guilty until proven innocent.

Currently, however, we have police who stand, move, talk, and act in provocative ways that FORCE people (all people) to react…and then use that reaction as justification to murder INNOCENT citizens (because remember, EVERY person is innocent until a jury trial finds them guilty). Again, this is the same if we strike a man between the legs…he’s going to move his hands to protect his groin, he cannot help it…his human hard wiring makes him move to protect himself and he is powerless to control that.  The police, however, as we see time and time again in the videos, will strike first, and justify the foreseeable reaction we ALL know will happen as grounds to sadistically murder innocent people (and again, all people that the police deal with are innocent…until a jury finds them not). The public forgets this.

This is not a war on blacks, although we certainly all feel the genocide in our community, this is a war upon America…and it’s been upon us for over 10 years, when the policy changed from reasonable force to shoot to kill and sort it out later.  It was predictable then, that a shoot to kill policy would lead to increased police violence (we should all be aware of Stanley Milgrim, the Stanford prison experiments, as well as what happened at Abu Grahib).  And, it gets worse…for those who still do not quite see it…soon after the election, many members of the new administration self identified as active kkk members. On the Fourth of July, this administration and their followers openly made fun of the Declaration of Independence. The administration has openly stated that they will be tearing up the Constitution of the United States. They have already signed away our national parks, they have removed our endangered species list, they have made it legal to kill all the protected animals that we have worked for decades to get the populations back up…including going so far as to make legal the killing of hibernating bears, et al. They have taken away the land, air and water protections.

And then we have the kkk’s decades old plan to “cleanse” murica of blacks, Jews, now also Muslims, immigrants, sick, disabled, elderly, women…and, of course, all those who oppose… and literally EVERY single action taken by this new administration has been to do just that…cleanse and destroy America. This includes the police, as acting agents of this administration.

So really, this isn’t a simple black or brown issue…or an autism issue…this is a We The People issue.  At all times, our eyes have to be locked and loaded on that the police MUST comply with the laws, and especially with the Constitution of the United States (as no state or city may EVER enact ANY laws that violate the Constitution or its Amendments).

This means, simply put, no officer may deprive ANY person of their liberties…period.

Police are ONLY evidence collectors for the court…that is their ONLY role in this legal side of our government. There are finite, exacting, and specific rules that define evidence collection. They MUST comply with these rules…or everything they collect is not admissible in court.

Their dogs are no longer adequately trained or controlled and now constitute violent animals that under our laws should be euthanized.

The police are now nothing more than living breathing examples of the famous quote, “power corrupts, and absolute power corrupts absolutely.

Police are no longer allowing people their day in court.  They act as judge, jury, and executioner. Where they do not slaughter innocent American citizens, they are merely gathering up and filling corporate run prisons to create a for-profit forced free labor in what is now modern day slavery.

Many despise criminal defense attorneys, but this is only because they do not understand the legal branch of our government or its vital importance. Criminal defense attorneys do not defend the criminals at their side (nor is it relevant if they are guilty)….what they defend, vehemently, as their ethics demand, is YOUR rights as American Citizens (as I have outlined here). They are, our checks and balances…they make sure police followed the laws, they make sure all elements of the law were met…before we take away ANY human’s liberties. And folks, this is what separates us from animals.

I am not sure, at this point, what chit chatting about it can do to change the course of events that I suspect are coming.

Meanwhile, in the kkk’s war on the United States of America, the NRA has been quietly passing the permitless carry and stand your ground laws in every state. This has come before our state. While the idea behind the creation of these laws (as founded in the south) is to allow white racists to shoot and kill black citizens and be protected under the law for doing so…however…it is important to know that this law cuts both ways (again, I am sure I am not the only one reading comments after police shootings)…the American people are angry…very, very angry at the open genocide of blacks in our communities.  The passing of these laws (because they cut both ways) will make it legal for citizens, including bystanders, to take up arms and shoot and kill police officers. I have been saying for a long time now, police need to start apologizing profusely after these shootings and start doing some serious PR…but they have yet to do so, or even take the issue seriously.  Understandably, our communities are growing increasingly outraged and incensed and the people are beginning to band together.  Our communities are beginning to band together to form a united front against unlawful police policies and practices. Again, I am unsure at this point, with the president’s inciting of further police violence and brutality, if chit chatting about it will have much of an effect. The window of opportunity for idle talk to change the course of what is coming, I feel, is closing.

Consistently, courts are upholding the people’s right to defend themselves against police brutality and unlawfulness. I don’t believe this is going to go well.

So again, I think this is much, much more than a mere black and brown issue…and I believe it transcends mere chit chatting…I believe if we, the people, do not succeed in getting our police force turned around, what’s coming is a potential blood bath…which the new administration (and the kkk) wants to have happen because then they can evoke a police state and martial law (and if you don’t already see the comparisons to the nazi takeover of Germany yet, then god help you.

I believe we have to consider two options…a We The People class action lawsuit against police; or disbanding the current police force before any further damage is done…and begin again, at the drawing board, as our forefathers did…and decide together, as a people, how we want our communities run.

Dreams Really DO Come True…As Long As You Keep Working Towards Them

Those who know me or have been reading and following my adventures with Alzheimer’s know that I am not the kind of person to let Alzheimer’s get the best of me…at least not without a seriously hard fight.  I employ ALL I know regarding how the brain works, and neuroplasticity, I actively re-wire my brain…and mostly, I just stay actively demanding my brain perform.  Partly, this is because I really have no option, but to keep going full blast.  I call this THRIVING despite.

Anyways, so I am co-raising my amazing autistic granddaughter which is an adventure in itself. Part of raising her is making sure we design therapy programs to best meet her needs, also another adventure in and of itself.  Well, part of that program has been regular pony back riding, which really helps her a lot.  You see, I am a horse person.  My older kids and I owned a horse and spent many years working at a rental riding ranch.  It was great, they offered unguided trail rides so on the weekends, when it was busy, they would post us along the trail to help riders out.  I was stationed on the beach, so I went out in the morning with the first rider opening the gate and came back with the last rider in the evening and shut the gate.  All day on the back of a horse, on the beach, on the west coast…it was HEAVEN.

My daughter, my granddaughter’s mom, was just a tiny tot then…about my granddaughter’s age…so she did not get much horse experience.  This needed to change.  It is important to me to pass on my horse knowledge to these two.  Plus, my grandbaby has a natural seat as though she was BORN to ride horses.  So we entered the market to buy ourselves a little pony…and instead, got a big, beautiful, amazing arab/paint gelding, that will make a great horse for everyone in the family.

No only did I think autism would completely short fuse my sparking brain just trying to make sense of this and figuring out what to do for her…but horse ownership in a state that I haven’t owned horses…woo-wee.  That said, my brain and body just keep rising up to the demands being placed on it.  And…THIS…THIS is the reward for all my hard work.  I couldn’t be more happy.

00001 Johnny

Overcoming Aphasia…For The Most Part

In December 2015, at part of the progression of whatever is going on in my brain, I developed Aphasia.  Aphasia is where your thoughts that you want to express and your mouth no longer connect.  It affects both my speech and my writing.  Stress can make it much, much worse, to the point that I cannot get my mouth to form any more than the first sound of the first word.  It was frightening and disheartening.  But, you know me, I just can’t accept my limitations that easily…so I stay fighting and combatting it with all I have in me.  Aphasia, ain’t nobody got time for that!  So part of my recovery is simply my I will not give up attitude.

I went to speech therapy and learned some interesting tricks to get some words I had lost back.  I worked super hard at this.

I took a long time off from talking to pretty much anyone.

I got away from focusing on dementia and Alzheimer’s.

I spent time in nature.

Inch by inch I started re-wiring my brain to find new ways to get my mouth and fingers to move in ways I wanted and needed them to.

Now, under stress and if I have talked a lot, you can tell I have something wrong with my speech…like I will miss some words here and there (although I can usually re-say what I was trying to say.  But mostly, I can carry on a conversation and you’d never have known how bad I once was.

Persistence, persistence, persistence…it pays off.

I had a chance see a video of me when I was fairly affected by Aphasia…and I am amazed at how far I have come.

Counting my blessings this day.

Finally! Social Security Will Be Replacing Medicare Cards With Randomly Generated Numbers

Not sure what took them so long to figure out that they needed to do this, but I am glad that they are FINALLY doing this.

Historically, Medicare Cards used a person’s Social Security Number on them.  This means, every service you get…every time you show your insurance cards, you are handing over your Social Security Number.  It also means that it is put on countless forms that you fill out, and is copied and sent to countless people that you send your medical records to.  All this adds up to a clear and present danger in terms of Identity Theft.

Many disabled people, however, have chosen to simply not show their Medicare Cards at various appointments.  I know after the first few times, I didn’t show mine either.  However, now we can look forward to increased safety.

My Last, Best, Spiritual Journey

Last Best Spiritual Journey

The holidays are upon us, and many in the dementia community (mostly carers and loved ones without dementia) are thinking, posting, and writing only about their suffering. Few will ever reflect on it long enough to realize that all suffering is a direct result of a chosen point of view. Or that at any time, or for any reason (or even for no reason at all), one can simply change their point of view and completely change their experience. This is something I used to teach in life, when I was a spiritual teacher and guide and gave talks and wrote. Now I talk, write, and I guess teach, about dementia.

As I watch people and read their posts, questioning their G-d, of oh why did you do this to us? I think, the G-d I know has reasons well beyond what we can see…and there is always a reason, even if you may not know it…that you have to trust in it, and have faith in it. After all, that is what faith is, right? People talk about the long goodbye like it is a bad thing, and I think how amazing it is that you are given the opportunity to say all the things you wished to say…that you get to be there, and finally BE the husband/wife/sister/brother/son/daughter you wised to be…and what an amazing opportunity to come close and express what I consider the highest form of love, to lovingly give care when one needs care.

I have been the sole carer for my mom for the last decade, all while experiencing sever health issues…and yet, day after day, I climbed those stairs. And although it was the hardest physical thing I have ever done, it was the easiest emotional thing I have done…because, but of course, I love my mom. I care for her with all the love that is within me, and where I run thin, I dig deep into the well within me and find new depths to my love for her. To me, caring for her, is the highest expression of love I have ever experienced…and I wouldn’t trade a second of it for anything. Indeed, I feel very honored to be able to be a part of such a dance of love.

When I was diagnosed with dementia, I went through many emotions and thoughts…but the one I settled on was a spiritual one. Although I subscribe to no one religion, and practice parts of many, I tend towards a more Buddhist nature in point of view. I have walked this earth, I have seen and experienced a great many things, I have enjoyed my time…but all my life this was done with the feeling that I do not want to come back here again. At four years old, when I saw my first merry-go-round, I became overjoyed at finally having a way to tell my parents…I dragged my father over to it, pointing and exclaiming excitedly, “there, there, it is like that dad – who would want to ride this over and over when there are all these other rides.” The merry-go-round was my first words for just how much I did not want to reincarnate again. As a result, I spent my whole life with this in mind…learning my lessons, seeing the higher, more divine nature, and doing what I need to so when the time came I could go.

What came to me as the metaphor of what my dementia diagnosis meant to me, and why I don’t see it at all as all that bad, is the great sand mandalas. Buddhist monks spend days, weeks, maybe even months creating these very fine, intricate, detailed mandalas out of sand they pour from their hands. In much the same way, I have crafted my brain and mind…and with just as much love and pride. If one thing could bind me to reincarnating, it would be my love for my mind and all the wonderful thinks it can think. In the end, however, after crafting these beautiful designs…the monk takes their hand and with one fell swoop, wipes it all away…gone forever. I see dementia as ultimately doing that to my mind.

Buddhists believe that our journey continues in the afterlife. The Tibetan Buddhist believe that we face tests, or bardos, in the afterlife…and depending on how we pass them, determines what happens to them. As a somewhat Christian, I always felt that heaven was never a given…and that there was an onus on us to do something to be able to get in. What is it that they say, “narrow is the path and few who will find it.” I had intended to be one of those people who found it. The message that we had to DO something spoke to me, and still does, and it is not something that I take lightly.

The first bardo, or spiritual test, in Tibetan Buddhism, is to let go of all notion of self and merge back in with everything. To lose self. Only if you did this, would you escape the Wheel of Time and the birth/death cycle. Failing this, you would have to reincarnate, and depending on how you faired with the next tests or bardos, would determine how you reincarnate. I always felt, for me, it would be hard to let go of all I had learned…all I had become…in particular, my mind…oh how I loved my mind, and I dearly wanted to take it with me. For years I have wondered how to let it go. Then came dementia, which will wipe it all away, and like a divine answer to my one true desire (to not have to return), free me to go…taking from me the one thing that would cause me to fail my goal.

So, you see, I can’t be all mad or sad about this diagnosis. To me, it fits right in to the scheme of my life. Indeed, I couldn’t have written a better outcome to my life, if I had been writing my story. My response to my diagnosis, when I had wrapped my head around it, and when I could see this…was to laugh and say, “but of course…how could it have been otherwise?!”

Copyright December 16, 2015, all rights reserved.

Accept Where You Are

AcceptWhereYouAre

Zen & The Art of Alzheimer’s

Daily Zen – Accept Where You Are

I am a real believer of living powerfully in reality.  But, to do that, one must accept reality as it is.  And, to do that, one must not make it mean anything.

Example: the sky is just blue.  It is not blue to offend you.  It is not blue to make you happy.  Blue doesn’t inherently mean anything, it is just blue. And it is not orange, or green, or red.

This goes for your dementia, and this goes for your spiritual path.  Accepting where you are in things, and not needing to make it more or less than what it is, and not needing to make it mean anything…but just letting it be where you are at the moment, and being ok with that…is key to your happiness.

It is also the key to living powerfully with the disease….and with the real reality of the disease, not necessarily with the “believed” reality of the disease.

I don’t know about you, but I don’t mind the disease so much or what it has done to my life, near as much as what people “believe” about the disease in me…which I find I don’t like much at all.  Which is a real conundrum for my spiritual practice, because how do I accept that I have become *that* to you…when I am not *that*? How do I live in the I am *that* to you…when I am not *that*?  And, perhaps more importantly, how do I protect myself from slipping into your view, and inadvertently become *that* if I allow you to see me as *that* which I am not? And, with the disease raging havoc in my brain, *how* do I keep those things sorted out?

The first reaction of being confronted with another’s false view of me, because of the diagnosis, is usually one of hey wait a minute, I am not that.  It never fails to cause me to feel removed from the situation.  Others think they are interacting with *that*, but really I am *this* – so it is not me that they are interacting with.  And I feel alone.

When I can get some distance, I can take a deep breath and reflect a little, and realize that there is no way to change this – but to change it by sharing the *this* that is really me.  The reality of me contradicts the illusion of what people think someone with the disease should be like.  But I am not the disease, I never was…I was always me, and I just happen to also have the disease.  It is a companion to my life, not unlike my beloved dog is.  It is something I have to learn to live with, and to become at peace with, and overcome the difficulties it presents me.

The next reaction I have is to form a plan of action, of how I am going to meet this, yet another difficulty – other’s perceptions of what they believe the disease does. But in this forming of a plan of action, I am confronted again with the ravages of this disease and I struggle to make my brain work  – and I need it to work better, and faster…because I know I know this stuff, and I know I used to be able to do this stuff…and yet, here I am struggling.

Again, I take a deep breath and with some distance, reflect.  And I meander the pathways in my brain, sometimes for days…until I return to the place I used to reside at…and accept.  To just simply accept that this struggle is where I am at.  It is not more or less than what it is.  It doesn’t mean anything about me.  It doesn’t necessarily fit others beliefs, but it IS just what is.

And in accepting that this struggle is just where I am at right now, I come to a space of deep compassion for my brain…and compassion for my dying body, and a deep love and appreciation for all it is still doing.  This experience of acceptance, compassion, and the resulting peace transcends other’s beliefs…leaving them distant muffled noises that are hard to make out.  And I am again centered where I thrive.

Until I venture out into the world again, and again I am confronted with another’s belief about what the disease should be in me…and this starts all over again.

Such is my path.

Namaste

Copyright November 8, 2015, all rights reserved.

Impermanence

Impermanence

There is a wonderful Buddhist practice, that I never thought much of. That is, until I was diagnosed with dementia, a fatal progression of brain failure. That is the spiritual practice known as Sand Mandalas.   The teacher and student monks spend days, painstakingly, pouring sand into these wonderful, huge, beautifully intricate, mandalas. When they are finally done, the teacher monk surveys his masterpiece, and in the single swipe of his hand, wipes across it, destroying it. The lesson is one of “impermanence.

When I think of the destruction going on in my brain, that is the image that comes to mind…the hand of my soul, wiping it all away…as if to say, “there now, you are free to go.

Copyright October 18, 2015, all rights reserved.

Tips & Tricks For Living With Alzheimer’s/Dementia – Environment/Sensory Overload

Please note: as of this writing, I am pretty squarely into Stage 5, so some of this may not be as relevant to earlier stages. However, there will likely come a day when these words will take on a new meaning for you. As always, use what works for you. ❤

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As dementia progresses, sensory input can begin to overload one, particularly in the evenings. It is as if everything in your environment requires a piece of your brain, and you already don’t have enough pieces to go around. The result from too much sensory load and input, is agitation. Agitation in dementia, is less about emotional agitation, and more like how washing machines agitate clothes. It is movement and energy. It causes pacing.

There is a line from a song from the old break dancing days, by Grand Master Flash, that goes: “New York, New York, big city of dreams, but everything in New York ain’t always what it seems. You might get fooled if you come from out of town, but I’m down by law and I know my way around. Too much, too many people, too much. Too much, too many people, too much, Raaah!” That sort of sums up agitation from one’s environment in dementia.

Anyways, you can significantly reduce agitation and sundowning by making the environment at home more dementia friendly. How far you have to take it depends on the person needing the soothing environment.

In considering how to accomplish this, think reduce sensory input.

Energy

The energy around a person with dementia or Alzheimer’s should be calm, slow, low-key, peaceful, and soothing. Children, even calm ones, often have higher energy than the person with dementia. Even positive emotions, like excitement, can be too much. Negative emotions should be avoided altogether.

Movement

You should reduce moving objects as much as possible. Something are harder to avoid or eliminate altogether, like children, dogs, and activity, but reducing exposure of the person with dementia or Alzheimer’s to this things will go a long way in reducing agitation. Other things are easier to eliminate, like mobiles and turning off the TV.

Decorations

The less decorations the better. Think Zen minimalism here. Avoiding patterns and bold, bright colors.

Sound

Keep sound to a minimum. Even soothing music and nature sounds, while wonderful and relaxing to you, are often too much input for people with dementia. Turn off the TV, unless they are watching it. Talk less, maybe even only when necessary, in quiet, comforting voices. Shut windows, if there is a lot of noise coming in.

Light

Light is hard to balance for people with dementia.

Some have issues sorting out shadows. They may either interpret them as something else, or not be able to interpret them at all. Those who have issues with shadows will need constant light in a way as to reduce shadows…and reduce shadows that move.

For everyone else, softer lighting is best. The brighter the light, the louder it screams. But also enough light to see by.

Physical Environment

Reduce clutter. The more objects one sees, the more the brain has to sort out, and the more taxing on one’s limited resources. In the same way, grocery or other shopping, can become visually overwhelming.

Make the floors safe to traverse. As it becomes more difficult to sort out moving, reducing things that a person with dementia or Alzheimer’s has to navigate in their environment is important.

Physical Discomfort

Sensory input can come from one’s body as well. As dementia or Alzheimer’s progresses, it can be harder for a person to identify what they are feeling and why. Because of this, discomfort translates into a generalized feeling that produces agitation. So take a quick check over. Is one hot or cold, is one in pain, is one tired, did you miss a dose of meds, are one’s clothes bothering them, do you need to go the bathroom, are you hungry?

Emotions

People who have dementia or Alzheimer’s become hyper-sensitive to the emotions that people give off. If you are experiencing fears, doubts, sadness, grief, frustration, or anger when you come at us, we will react negatively in return. Part of this is no longer being able to find the right words, part is that we rely on you to know what to do (so if you are angry, then we should be angry too)…we instinctively become like a zebra and fit right in with you, so lions will not eat us, and part of it is we can no longer hold multiple thoughts in our brains at the same time…we see your anger, and there is only that and not all we know about people and their anger.

As well, people with dementia and Alzheimer’s are grieving the loss of their own lives and function. We have just as much capacity to feel, but less ability to process through how we feel. Because of this, it is much easier for us to get down. When the world also treats us as useless, it is harder to feel like one matters. In a sense, we depend on others to help us right our own emotional state as well.

This is why it is imperative that the people around us are in positive moods.

In the end, reducing as much sensory input is key to controlling agitation.

Agitation is generally worse in the evening, so preemptively keeping evenings low-key and quiet will go a long way to reduce issues.

It can be very hard to get away from noise. The evenings in my house can be very challenging for me. My mother listens to the evening news, very loudly. My daughter and granddaughter often have the TV on and are playing in an effort to keep the baby awake until bedtime. When I go outside, the evening traffic of people coming home from work, and planes going overhead every 30 seconds, and trains. Even the sound of the wind in the leaves hurts. I dream of a plain white, sound-proof, room that I can sit and sleep in for hours for peace from sensory input.

When I am not agitated, I can handle more input. Mornings being the best.

Copyright August 21, 2015, all rights reserved.

Tips & Tricks For Living With Alzheimer’s/Dementia – Your Budget

I have dementia (stage 5), physical health issues, and care for my mother, my daughter, and granddaughter. Many ask me how I do it. My answer is that I do it with heaps of supports and adaptations in place, that’s how. These are things that I created myself, and will one day publish into a book, and I have come to think of them affectionately, as ways in which I am my own caregiver.

Tips & Tricks For Living With Alzheimer’s/Dementia – Budget

Of the many ways I support myself in my continued functioning has to do with having created a Master Budget, but it is not just a budget. What it is essentially, is step-by-step instructions that walk me through the process of paying my bills each month.

Step 1 In Preparing A Master Budget Plan

We looked at all the bills for the year prior to the transfer. Most bills are fairly fixed, but for the ones that fluctuate through the seasons, we calculated using the highest range…so that, if the bill was high, I would have enough to cover it. If it was lower, then I would have extra money left over (which is always nice). We added them all together.

Next, we subtracted the bills from my monthly income. Because I am on disability, I have a fixed monthly income. Although all the bills total nearly my whole income, I felt good (safe) knowing that I at least have enough to cover all the bills, with a tiny remainder for food and necessities. It is a very tight budget, and no room for error.

Step 2 Creating The Plan

Next, I needed literal, step-by-step instructions of what to do and when to do it, or I would get lost in the process. I needed help to break this down into what I do first, and when; what I do next, and when; and so forth. My ILS worker helped me to do that.

My plan looks like this:

* The first step in the plan, is to call the bank and make sure that I got paid the amount that I should get paid.

* Next, transfer money to savings for all non-monthly bills (the monthly savings amounts are pre-calculated).

* The next steps are to use my phone to pay all the bills I can that way.

* Next, I must wait for the two re-occurring auto-payments.

* Finally, on the 10th or so, I call the bank again to make sure all the bills went through, and that I am still in the positive.

The plan has all the dates/amounts/etc. details in it, and walks me (literally) step-by-step through each task.

There are some bills, like property taxes, that are not paid monthly. When these come due, I have to add it to the bills I pay by phone.

So far, this works perfectly for all the regular bills. This would not work for anything unexpected.

Step 3 How It Works

It works because I don’t have to actually balance anything. Although, I still do try to do the math, I don’t have to. The magic in that is that we used the highest amounts the bills would ever be, so I will always have enough…unless something strange or unexpected happened.

It also works because it is the same thing each month. The regularity helps a great deal in that it is now a pattern (like a cow path, the more I traverse it, the deeper it becomes, and so the harder to traverse any other path than this one).

It can be very confusing and strange for me to know that I need to call and pay the bills, but I trust my budget plan and that it says on these dates I do these things, and I always feel the vital need of these tasks. So, I don’t need to understand the bills, or the amounts, I just need to follow what I told myself to do…and I will be ok.

So far, it works great…for me.

Copyright August 14, 2015, all rights reserved.

Tips & Tricks For Living With Alzheimer’s/Dementia – AM / PM Notebooks

Out of all the tips, tricks, and techniques I use to help compensate for the dementia, notebooks have to be my favorite of all.

I have notebooks for seemingly everything. They carry everything I need to know to carry out many of my tasks…everything that my brain used to hold onto about these tasks is safely in my notebooks.

The glory of this design, for me, is that the words I put down (when I was more able) support and carry me through my mornings and into my day. At the end of the day, they support and carry me through the close of the day, and walk me to bed. In this way, I am my own caregiver.

It All Starts With A Sign

I have a sign by my bed that instructs me to “SMILE” when I wake up. The act of moving our muscles into a smile releases chemicals that alter how we greet the day. It is also part of my spiritual practice to choose the energy with which I enter my days. The smile brings me peace, and with it the recognition of my appreciation for my life and a remembrance of who I am. It is also something that I did naturally, before I became so sick.

The sign then instructs me to go the bathroom, get a cup of tea, and get my morning notebook.

Morning Notebook

My morning notebook contains everything I need to know to start my day off properly.

In the first part of the notebook I have a gentle letter to myself, explaining again that I have dementia and telling me why this notebook, and what I am to do when this notebook no longer works.

Next is a set of questions designed to test my recall and to re-cement information that I consider vital. The questions ask me my full name, my age, my date of birth, and my address. It asks how many children I have, and what are their names, ages, and dates of birth. It asks me the day, the month, and the year as well as the date. Each time I go over this information, it re-coats the neurons, re-activates the neural networks, and generally re-affirms and re-secures this information in my active memory. On the back of the page are the same questions along with the answers. I read through those too, because they code the information in a slightly different way.

On the following page is a set of unlabeled pictures of important people in my life. My daughter and granddaughter, my mom, and my other children. It has pictures of my doctor/s, my ILS worker, and the various other people who work with me. On the backs of those pages are the same pictures with their names labeled.

By the time I have finished the exercise in re-cementing this information, I generally have finished my tea.

The next section walks me step by step through my morning routine. Which starts with making my bed, gathering my phone and plugging it in, laying out my pills and taking my first dose, washing out my tea cup, going through my morning exercise/yoga routine, sitting for a bit of meditation, getting dressed (including where to find my clothes), combing hair, and brushing teeth, checking the calendar and seeing when and where my appointments, making sure I have everything I need for those appointments already laid out, and to sit down and calculate the times I will need to attend to my mom, and the times I will need to leave in order to get to these appointments. Then it instructs me to go get my phone and put the notebook back on the shelf. At the end, there is an inspirational saying that I read to myself.

Signs, Signs, And More Signs

I have numerous signs throughout my house that instruct me in various tasks I might have to do. How to use the washer and dryer, how to wash and fix my hair, what to do if I get lost (in the house), where my clothes are, to check my Go-To Notebook for anything I need an answer to.

I have time and event specific signs for if I am agitated, confused, lost, or just wandering around and tells what to do. I have a sign on my door that says if it is night, check to see that the door is locked. I have signs that ask me things like, if I am feeling yukky and it is night, that means I am tired and should go to bed.

My Go-To Notebook

My Go-To notebook has the solutions to every problem I could think of to put in there, that would otherwise take me a really long time to sort out. What to do if something happens to the house, the plumbing. What to do if something happens to my mom. What to do if I have pain. What to do if I don’t feel well. When I don’t feel well, it has checklists that I can go through to help me identify what it might be.

For me personally, I feel this is one of my most helpful work-a-rounds, because it saves me from much of the frustration, stress, and agonizing of having this disease. Without it, I would come up with the solutions myself, it would just take a really long time (a week or more). The whole time I am inside me pushing like everything on the gear in my brain to get it to turn. The relief I have from this single notebook is huge.

My Mom Notebook

I also wrote down detailed, step by step instructions for every task I do for my mom, and put these in a notebook. Generally, I still remember what I do for my mom, because it is the same each time and has been for years, but it is nice to know it is there for when I may need it. It is also helpful in case someone else has to care for my mom, if I was unable to.

Worker Notebooks

I also have notebooks for each of the people who work with me. It contains their job descriptions, our contract, contact information, etc. It also contains my treatment plan, which can be helpful to revisit from time to time. It contains information about dementia and working with someone with it. It has pens, pencils, and post-its. But mostly, it contains my lists. Each time they come, I try to make a list of what I want to work on and we check it off as we go. I save the lists because not everything gets done and sometimes I forget that it even needs to get done. Indeed, one of the big problems of having workers when you have dementia, is that pretty much as soon a I assign something to them, it is off my table and I forget all about it. These notebooks are primarily for them.

Evening Notebook

Come evening, I have my evening notebook. It has everything I need to close out my day. It contains the same gentle letter to myself, and memory exercises as my morning notebook. Then it goes on to instruct me in the evening tasks. It instructs me to check my calendar, if I have appointments to get everything I need to take ready and put it by the door, and make sure my alarms are set. It instructs me to brush my teeth, to get dressed for bed, go the bathroom, take my meds, shut out lights, and lock the door. It also has a little inspirational saying that I read to myself.
On my bed is another inspirational saying that I say aloud to myself. I leave it on top of my bed so I will have to handle it in order to go to bed. Otherwise, you know, the mind likes to skip over these kinds of things. This keeps me from skipping this step.

From the time I get up, throughout the day, and until I tuck myself in at night, I am there a gentle guide, guiding myself through the rhythm of my days. My own caregiver.

Copyright August 12, 2015, all rights reserved.