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Zen & The Art Of Alzheimer's
The_Sun_Still_Rises
Posted: Wednesday, November 18, 2015 6:17 AM
Joined: 7/24/2015
Posts: 3020


Day 22

Daily Zen - Nature

https://www.youtube.com/watch?v=LQkpQevLfws  

There is nothing quite like nature to restore one to their soul. When the journey is long and hard and one gets weary, it is nice to take some time in nature...maybe go for a walk amongst the trees.

There was a mountain road in California, highway 9 I believe it was, a you travel through the town of Saratoga in Silicon Valley and venture up the mountain.  This highway (whichever name it has) travels along the top of the ridge.  Motorcyclists like to ride this highway for long stretches.  Anyways, there is a section just south of Saratoga, where the redwood pine trees hang down over the road.  The bottoms of their branches cover the road, and although they are too high to do this, you feel like if you reached up you'd touch them. 

I have always felt redwoods had more of a presence than other trees...you just *feel* them.  I am fairly sure anyone who has been around them knows this.  But here, where they almost brush your car for a stretch of time...passing under them, it feels like they wipe away every non-soul thing from you.  Every worry, every bad feeling, every everything...until you are left, as you come out of them, restored to just your pure soul. 

When I lived there, I made use of this stretch for its healing and restorative powers.  I can't take you there, but maybe one day you will find it on your own...it is just past the walking trail known as Castle Rock. 

And while we cannot be there, maybe now...we can still enjoy nature.  I am not sure if it is my eyes (as cataracts develop) or my brain (a the dementia ravages), but for some reason the light from the sun this season seems to have an extra yellow quality to it, like it gets in summer just after sunrises and as the sun prepares to go down.  That yellow tinge, that for some reason I find so beautiful.  It gives the appearance, to my brain, of still being summer even though it is cold now. 

The way this light reflects off the trees.  The way at night, after the sun has set and the sky is a dark blue, but there remains a yellow line of light around the horizon, and the moon pops with extra vividness.  The beauty has been spectacular lately.

One of the gifts of dementia is, it *feels* like the most beautiful scenes I have ever been blessed to witness.  I am fairly sure that I have seen other, more beautiful things, but I still enjoy that it *feels* that way.

Today's practice, is to take some time for nature, that it may heal.

Namaste


The_Sun_Still_Rises
Posted: Thursday, November 19, 2015 10:00 AM
Joined: 7/24/2015
Posts: 3020


Day 23

Daily Zen - You Own Your Reactions

The inspiration for today's practice is this wonderful graphic that says, "you can't change how people treat you or what they say about you.  All you can do is change how you react to it."

You could change that to be anything...you can't change that you have this disease, or that it is ravaging your brain, but you can change how you see it and deal with it.  You can't change much of what happens in the world, but you can change how you react to and deal with it.

Just because others around you, or even the whole consensual agreement, is a certain way...doesn't mean that you have to buy into it.

----

This will be a long post, as my words just wont gather themselves up today to say what I mean...so instead I have to describe and hope you can gather what I mean from it.  You might want a cup of tea. 

----

When I was diagnosed with dementia, and then Alzheimer's, I asked what that meant for my future.  Unlike Kate Swaffer's Prescribed Disengagement, my questions were met with compassionate solemn looks...but no answers.  Like everything else in my life, it was left up to me to figure it out...and to figure out what to do with it.  Although, it makes things a bit harder to not be given guidance, I find as I get some distance, that I really prefer things that way because it allows me complete freedom to form my own view of it. 

I didn't relish being put in the situation of having to confront my beloved medical providers with the hard and uncomfortable question of, "just be honest with me, does this mean I am going to die?" Or to have to make them utter the words, it was clear they wished I hadn't asked them to say, "yes, it is likely you will die."  To this day I struggle for words to tell them its ok, and to not feel sad...to this day, my best words still make them feel worse. 

When I found out that the disease is both progressive and fatal, that was a bit of a shock and took a bit of time to process through and come to terms with...but I did.  I began to look at my situation as sort of a project to take on, and asked myself how I cared to confront the situation.  Since I am a bit of a head on kind of person anyways, it was no surprise that I rolled up my sleeves and dug my heels in and doubled my efforts.  Although, with diagnosis, I know I will lose in the end...that hasn't damaged my spirit of doing all I can.  This disease will take me, but not without me doing everything I possibly can to slow it down. 

In isolation, in my thoughts to myself, it seemed nothing special...just the natural and logical expression of who I have always been...business as usual...to deal with it this way.

But to the people in my daily life, who knew about my diagnosis...upon seeing how I was meeting this in the same way I met the issue with the weakness in my legs that nearly took my ability to walk, each took me aside to tell me how inspiring it was to them.  They hadn't said that when I took on trying to stay walking.  Maybe they thought it then too. 

Part of me felt lifted by their words (probably my ego), at first...and then it became increasing uncomfortable.  Like they were setting us up for disappointment, because ultimately...even with all my best efforts, I will in the end fail. 

Then I came online, and I discovered the consensual agreement about this disease.  That I am, by virtue of my diagnosis, no longer considered human...much less anything resembling the human I was before.  I was to be feared, and watched...like I had suddenly become an alien.  Like I was suddenly now dangerous.  I was seen as stupid, and not able to know either what I wanted or what was good to me.  My thoughts and opinions didn't matter anymore.  And, worse, I had become a burden...a destroyer of lives, and the cause of everyone's misery.  And I was to be grieved and mourned even though I was still very much here. Like I was already was gone, and only remained as ghost version of myself that no one could see or hear.   

So foreign was this view to me, and so hurtful, that it hit me like a brick wall.  I was shocked and horrified...and had to rack my brain to try to wrap my head around this. And I wept, and I cried, and I looked to G-d and wondered, how had I become this?  I couldn't understand why it hurt so much to be stripped of my identity and self-view like that...but it was threatening to sink me...and indeed, I was sinking. 

I have to say, being diagnosed with a terminal disease and knowing I was going to get worse and die...was so much easier, for me, to deal with than this new agreement about me was. 

So pervasive is the agreement, that it threatens to engulf you...and for many, it does.  I observe it all the time in my colleagues who change their self view and bend and mold themselves to the consensual agreement about who they have become...and bend and mold their words to fit how others think they should sound.  To make themselves more palatable to the agreement.  Even if you manage to stay outside of it, it takes constant attention and effort to not be sucked into it.   

You cannot, I found out, just say, "Stop," and have it be listened to or considered for what it means to you...as an expression of it being too much to take, or you needing it to back off a bit and give you time to process it.

Nor can you say anything about how much it hurts you...and be understood.

Nor can I take on this view of myself without breaking...without it crushing and killing the very spirit in me.

I find that it is certainly difficult to deal with not being able to figure out where I am, or how to go about figuring out where I am when I am out and alone and disoriented.  But it is not near as difficult a part of this disease as what this disease makes me mean to others.  Becoming disoriented, and having it take a really long time to figure out what to do...I know why that happens. And it makes sense why that happens. I do not know why, or understand, the consensual agreement about the disease...and it remains the most hurtful aspect of this disease, for me.    

----

So how do I choose to react to this agreement about what my disease makes me that, for reasons I don't quite understand, require me daily to expend energy and effort not to succumb  to it? 

Stopping and realizing that I have choices about it is my practice for today.       

To everything in life, we have choices about how to react.

Namaste


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TaniaP01
Posted: Saturday, November 28, 2015 11:40 PM
Joined: 11/24/2015
Posts: 17


I have just stumbled upon this thread, visiting from the Caregiver's forum and just wanted to say thank you for sharing your extraordinary journey. Being on my own spiritual path, it is even more meaningful. I am so sorry you are having to face this, it is hard but reading your writing made me think that not only is your sun rising, it's shining. Thank you for being so honest and for sharing your insights.
w/e
Posted: Sunday, November 29, 2015 11:07 AM
Joined: 3/7/2012
Posts: 1747


Sun... where are you? how are you?

We miss your serenades...


The_Sun_Still_Rises
Posted: Thursday, December 17, 2015 11:13 AM
Joined: 7/24/2015
Posts: 3020


Sorry I haven't been writing in a while, had a spinal tap and that sort of knocked me out of things and it took a while to get back in the swing of things.  Wrote this yesterday. 

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Day 24

Daily Zen - My 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?!”

 


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The_Sun_Still_Rises
Posted: Tuesday, December 22, 2015 10:07 AM
Joined: 7/24/2015
Posts: 3020


Day 25

Daily Zen - Rumi's, "We Are All Just Walking Each Other Home"

This week has been an interesting one, and I am not sure what sparked it...but am glad for it all the same.

I finally have a good care team in place (after like a 4-5 year struggle to get this set up and find the right workers), and all of them are willing to stay with me through the end...which is certainly very helpful. For most of this year, it is been a struggle for me to get my workers to really understand just how much I am struggling and just what I need from them. Over the course of the year, I have also lost the ability to tell them what I need them to do. Although I can still describe the situations that take place and where I might need their help, I have to completely rely on them to figure out how to step in and be helpful. For most of the year, they have looked to me for direction...and all year I have struggled to get through to them that I just cannot provide them direction anymore, because if I knew what to do, I wouldn't need them. Well something in the universe shifted and changed for us, and now suddenly all my workers seem to finally "get it" and have started picking up the ball.

That is what this Daily Zen is about...how we connect, and how the people in our lives are carrying us home. Unable to write it the way I want to, these are examples of how we are all just walking each other home. Of how the dance plays out between people. In dementia care, the dance between the person with the disease and the people around them.

My physical therapist has been with me for many years now, and has seen me through the worst of my physical struggles and while I nearly lost my ability to walk. He'd often say how he did not have anyone more motivated than me. Part of our dance together is that I was very motivated. He watched as I declined, and witnessed my struggles...and he helped me to help myself. As is the nature of progressive illnesses, during our times working together there were often set backs...which, for some reason, would either get to him or get to me. What was great about my PT guy was that when this happened, the other one always would make light of it, or point out something else good, or crack a joke. Although I have told him many times how much that meant, I do not think he really knows the impact he had. Without him, without the dance we did together...I would have sunk deep into depression as my situation back then was just so hopeless. My physical therapy with him, is really a journey we have been taking together.

He knew of my increasing brain dysfunction, but did not say anything...but my love and appreciation for him and all he has done and meant for me through the years is why I could never be mad or frustrated about it.

My primary doctor is another one of those amazing people in my care team. To understand my doctor can really be summed up in this. My primary doctor before her wasn't very good for me...or very helpful. But, because of my increasing brain dysfunction over the years, I did not understand this. I kept thinking that if I could just explain things right she'd finally understand and help me. Then one day, out of the blue she dumped me with one week of my thyroid medicine...and despite my requests for her to please just give me two months worth, she was refusing. I was beside myself with grief in my sheer helplessness of the situation. Even in the best circumstances, it would be two months to get into a new doctor...and, I'd be dead by then. And because my brain didn't work, I could not figure out how to eeek out the pills I had left. I took 20 pills a day...so I knew there had to be a way to make them last, I just couldn't figure out how. I asked all my workers for help figuring out a plan to make them last as long as possible and to help me find a new doctor, but they did little more than shrug. Then, late on that Friday, my current doctor's nurses call to tell me she had asked them to call so I wouldn't worry over the weekend, saying that she'd filled my prescription and would be my doctor. I hadn't asked...she just saw the need and filled it. There are no words...but that is my doctor.

My current doctor has not been with me but a year, but in that time I have two diagnoses...and I have a medication for the physical one that took me from largely bedridden to almost 100% and a new lease on life. What a difference a good doctor makes. I don't always know how to BE with that I have such a good doctor. She finds my dementia diagnosis hard to wrap her heart around and keeps trying to find something that will save me. It touches me deeply and I am honored to be a part of that dance, even if just a witness to someone caring so deeply for another person. Today I shared how I saw the diagnosis, and prognosis, spiritually...and she was so moved and touched (real awww moment) that she hugged me. Truly, we are walking each other home. And I had to ask her, because although we have talked about it before, and I have written about it many times, I needed to be really absolutely sure...whether she really supported me in my decision to, when the time is right, stop my medications which will essentially end my life...and she reached out to me, and said yes, she truly is. I don't have words for that exchange...from my heart to hers, and hers to mine...but I am deeply, deeply grateful.

My therapist (because I felt it was important to have support to process all that was happening) also supports my decision to, when the time is right, stop my medications. She is the most amazing, wonderful lady and I greatly enjoy my time with her. She also had an awww moment and hugged me this week.

The other workers on my team, some who come to my home and work with me and others I go see, are all just as wonderful and special in their own rights. They too, just suddenly picked up the ball and started digging in to help. I am not sure what is behind this big shift in how things had been, to how things are now for me...and I find myself seriously wondering if I have just gotten bad enough that it is now very evident to those around me how much I am struggling. Perhaps I have hit a threshold, in the things that are failing for me, of being just vulnerable enough for them to all be so "awww" towards me. Or maybe it was the recent ugliness of my sisters. I am not really sure what sparked the shift. But I finally feel like I have arrived at where I have been trying to get to for years.

What I do know, at least for me, is having grown up in a less than supportive family, and having years of physical illness further isolating me...that something about how I have kept walking, and kept working towards, and still keep trying to do everything I can...has earned me the kindness and love of strangers, who have become, and are, more family to me (such as it is) than my own family. And in, what amounts to entering my final chapter, knowing that I am finally surrounded by a circle of dedicated and caring people who really seem to love me and want to help me have the end of life care support I had wanted...means more to me than words could ever hope to express if I had them.

The thing I want my workers to know, is really just how deeply they touched me...how they carried me through these times...and that their kindness is not at all lost on me. I can only hope, and intend, that being with me through this last stretch of my life is as meaningful for them as me...to essentially leave them more for having shared this time with me.

Today's Daily Zen, is ____ for the people walking us home.

Namaste

 


The_Sun_Still_Rises
Posted: Wednesday, December 23, 2015 8:26 AM
Joined: 7/24/2015
Posts: 3020


Day 26

Daily Zen - Perseverance

People meet me now, and they see that I am in a pretty good place.  But few people realize what it took to get here, or that it was a long, and extremely difficult trek to where I am now.  I feel much like when you set out to climb a small mountain, and it takes all day, and you get many bumps, scrapes, and bruises...and are tired, exhausted, and eventually by the end of the day, you reach the top. 

I always want to tell people, but I am no longer sure how...about how if you could know now, exactly how this was going to turn out...how much easier now would be. 

It took me 6 years of bad doctors, and bad doctor treatment, to get to my good doctor.  And many times along that way, I wanted to give up.  My heart, she can only weather so much.  It was hard to bear witness to a doctor treating someone in need so poorly, and harder still to make that ok enough...that I could still smile and say, "thank you." 

But while I can know it happens in the world, it hurts much more up close...and to be powerless to change it...especially when I had been so good at it before.  I needed my brain back.  I needed my brain and my abilities if I was ever going to hope to get a doctor to help me so I wouldn't keep getting worse.  I needed my words, that I used to have, so that they could know, really know that I needed them to fix this.  It took me a long time to come to a place where I could forgive myself for not being able to change things...for not being able to save my life. 

I traveled through many dark places in my heart and mind, sinking...helpless and losing hope.  I did not have supportive people around me, encouraging me or helping me.  My workers were next to useless.  When I was losing my ability to walk, when I spent a year or more not being able to walk in the morning and having to roll out of bed, falling to the floor and crawling to the toilet, in order to be able to pull myself upright.  I asked everyone who worked with me, all my providers, what happens on the day I cannot walk.  It took a year, but finally one said, "well you call 911," which made no sense to me.  And because my brain did not work right, and because I didn't know why my brain didn't work right, I could not even see how wrong this all was. 

But I kept trying.  I did all I could see to do.  It might have taken me months, or even years to see that my workers were bad workers enough to fire them...but if that was all I could do, I did what I could do. 

Eventually, however, I started to land on people who were better...and as I moved forward in that direction, it gave way to even better people.  And, as I kept moving in that direction, even better people appeared.  Until now.  Now I am surrounded by a really great team of people.  If I had known back then, that I would one day be here, and that it would take this long...back then would have been much easier to bear. 

Today's Daily Zen, is to keep walking forward...move forward, even if all you can do is crawl...because eventually, eventually you will get there too.  Perseverance.

Namaste


The_Sun_Still_Rises
Posted: Thursday, December 24, 2015 5:24 AM
Joined: 7/24/2015
Posts: 3020


Day 27

Daily Zen - There Are Some Things That You Cannot Know Unless You've Been There

Today's Zen is inspired by a line in the Ani Difranco song, Polite Daughter found here:  https://www.youtube.com/watch?v=hB7FNtnL6m8

"There are some things you can't know, unless you've been there,

but I wonder how far we could go, if we started to share?"

This is a sentiment I often hear lamented from caregivers, but many with dementia also express, a bit differently, a similar desire - to be understood.  Indeed, it is the lack of being understood that often leads to feelings of isolation and loneliness, that if left unchecked can even lead to withdrawal and depression.  But rarely do I hear people working it around to  the idea that in order for anyone to understand what you are going through, you first have to share  and describe it. 

It is not necessarily a popular stand, but I feel that the onus is on people who have dementia to describe their experiences (as best they can), and continue describing their experiences...if we hope to be truly understood.  Because how can anyone without the disease truly know when they cannot walk where we walk. 

It is difficult to be among the first however many sharers, because the stories are like seeds on unplowed fields.  And the fields resist being dug into, and resist the seeds.  But eventually, 100th Monkey style, a threshold of stories being shared is reached, and the ground opens up and welcomes the seeds.  When this happens, the seeds will take root and grow...and understanding will become what is.  We may not live to see the day when the seeds begin to grow, develop, or thrive...and so this is where faith comes in.  To have faith that if you scatter enough seeds, something will grow from it. 

At first few will hear, but if you keep sharing long enough...eventually ears and then hearts will open, like flowers.  It can be hard to not concern yourself with the mouths, but pay attention to the ears.  Rest your faith in the future, keep your eyes on the prize so to say, and keep walking ever forward towards that day...because it will come.  It just might not be today. 

Today's Daily Zen is to be willing to be willing to share...

Namaste <3 


The_Sun_Still_Rises
Posted: Friday, December 25, 2015 7:13 PM
Joined: 7/24/2015
Posts: 3020


Day 28

Daily Zen - The Very Best Day

Today's Zen is inspired by a quote from Ralph Waldo Emerson, "Write it in your heart that every day is the best day in the year."

One of the many blessings, saving graces, and indeed, gifts of dementia...is that thanks to forgetfulness, each beauty, each blessing, each day can be its own personal best. 

Hope you had a beautiful day.

Namaste


The_Sun_Still_Rises
Posted: Sunday, December 27, 2015 8:51 AM
Joined: 7/24/2015
Posts: 3020


Day 29

Daily Zen - Emptiness

It has long been a spiritual pursuit to practice meditation in order to stop internal dialog and achieve a state of emptiness or non-being...or just-being, as it were. 

One of the great gifts of dementia, is it allows for this...and one can sit for hours just staring out the window without much, if any, thought...just enjoying being. 

Namaste.


w/e
Posted: Sunday, December 27, 2015 11:55 AM
Joined: 3/7/2012
Posts: 1747


Yes, sun... a sense of emptiness and peace. A gift of dementia. And it feels good. My immortal beloved said such words to me, as well.

  I would see him sitting quietly during the day or in the middle of the night. Looking out the patio door. Calm, relaxed, tranquil, serene. I often asked him, "Are you meditating." He would answer, "No... sedateting." He needed badly those moments of "sedatetion."

As for me, presently, I need more "sedatetion" in my life... my internal monologues at times are suffocating! When I think back, at what might have been going on inside his broken brain, it breaks my heart... During his last two years, he lost his ability to write. He lost his ability to express verbally most of his thoughts, clearly. And he was a thinker. A philosopher. A creative writer. An artist. There must have been a lot of noise going on inside of him. I had no idea. His anguish was kept deep inside of him... Always attempting to be serene. Easygoing. Steady. Dignified.... It was too much for his heart. He had a sudden heart attack.

  It will be two years next month since he died suddenly at home, in my arms. I still have the scent of him inside of me. And I still cry for him (and for me) every day. With every breath I take, I think of him.. I come here to this forum. Everyday. To hear his voice through each of you... to hear the sounds of his silence.

 Keep writing. Keep sharing. I believe it is a great contribution. To all of those who come here. To read. And to think.

 Hugs.


The_Sun_Still_Rises
Posted: Monday, December 28, 2015 6:16 AM
Joined: 7/24/2015
Posts: 3020


Awww...((hugs)). 

Sometimes there are disorganized thoughts that one tries to make align themselves in an organized fashion.  But mostly there are just many insights.  I find, and others in the dementia groups have expressed, that there are many big fleeting insights...that are well loved, and disappear the moment we try to move them into words.  So, he very well may have been enjoying himself.  I know I am...and Alz+ seems to enjoy her thoughts too.  I just wish we could share them. 

When I do try to share, it seems like what I am actually able to get out into words (whether written or spoken) are just shadows, whispers, and hints of what I was really trying to say...that it is often irrelevant to say it.  And then, the outside world in dementia is so filled with messages of how our words don't matter, and aren't wanted. 

We get to a place where what is left, is the pure person we were always inside...with no more filters, no more learned niceities...just pure us, no holds barred.  That, and swear words.  I have to love the swear words.  They now seem to replace any word that I am searching for.  It is a supreme effort that takes my whole being to keep them inside me and not let them out.  I try to prepare people who work with me that these words are coming...but no one seems to hear. 

There are many gifts in dementia.  I love that we have time.  Time to say goodbye.  Time to truly express the love we have for each other.  Time to tell others what it is like.  Time to support people in the process.  Time to make a difference.  Time to inspire. 

We are truly all just walking each other home.  <3


The_Sun_Still_Rises
Posted: Tuesday, December 29, 2015 10:03 AM
Joined: 7/24/2015
Posts: 3020


Day 30

Daily Zen - Seeds

The life of a seed planter is not an easy one.  It is dirty, back breaking work, that few want to do.  And rarely, are you around to see if the seed takes root, much less grows...much less fruits.  Which is especially true in dementia work. 

And the job, by itself, would not be so bad, because many are called, passionately, to this work.  What makes it hard, in my opinion, is that few want the ground tampered with.  People like things to stay the same, and so blame the seed planters.  Yet still it must be done if change is ever going to take place. 

And change needs to happen, as unsettling as that might seem.  There is such a disconnect between those with the disease and those trying to care for them.  Everyone feels it.  Few can articulate it.  No one wants to talk about it.  Well, a few of us do...and are.  But, if we each can settle to a calm place...I think we all agree...no one truly wants the disconnect to continue. 

Today's Zen is an acknowledgement of the seed planters, of the hard, and often thankless, work they do...and how, in the end, their efforts benefit us all.  Thank you for all you do. 

Namaste <3


The_Sun_Still_Rises
Posted: Tuesday, December 29, 2015 10:14 AM
Joined: 7/24/2015
Posts: 3020


Ok, I can't believe I made it to day 30...and although they were not consecutive days, glad for the exercise and for completing it.  To my credit, much happened along the course of the way...like two weeks of headache from the spinal tap, change in workers, and needing to say goodbye to most of my children...not to mention the holidays, and the fact that I am now entering stage 6.  All made it a bit difficult to stay spiritually focused. 

The goal of this exercise, was to help myself get back to the place (space in mind) I used to live in...where I thrived, that had been lost along the way to physical illness and dying brain.  For years, I used to ask my very busy friend (who never understood how important our talks were to me) to just call a bit more often to have spiritual talks.  A bit of an obstinate person, he'd call...and not talk spiritual things.  I didn't have words back then for, how my spirituality was like rooms I couldn't access anymore...until someone said something to cue it, then I'd have access again.  But I love my friend, and as much as I wanted and *needed* this from him, I couldn't be anything but compassionate. 

But one day, I decided to not stay in the victim space with this...and decided to take matters in my own hands.  If he wouldn't call and talk this stuff with me, I'd do it for myself.  I am, after all, already being my own caregiver...so why not...couldn't hurt. 

What I had hoped, was that it would cue me, like my friend did...that the demand for it would help me again gain access to that part of myself.  And, for the most part, it worked.  The lapses in writing caused me to start again from scratch.  But it is nice to know it is doable.  I hope, going forward, if I can become more regular with it...that I will be able to get and stay in that space...where I thrive...and not in the minutia...where I the opposite of thrive. 

Anyways, for anyone who cares to follow my work beyond this point...can like/follow the page on Facebook. 

Namaste <3

 


The_Sun_Still_Rises
Posted: Tuesday, October 4, 2016 4:58 AM
Joined: 7/24/2015
Posts: 3020


It can be very hard make a point stay in the spiritual when the physical is so demanding of our attention...but it is important we do. 

I try practice yoga...which is needed keep my tissues from tightening up due my autoimmune...but also helps keep my mind here, like a nice side effect. 

I try practice daily meditation...although it gets harder for me do the more I progress...but also helps keep me there. 

I try see the falling leave in autumn and feel like this is like my life...and grief...

The baby is a reminder that life will go on...even after I am gone. 

<3


The_Sun_Still_Rises
Posted: Sunday, October 23, 2016 11:36 PM
Joined: 7/24/2015
Posts: 3020


While I am no longer sure if I practice getting a space of zen daily, since time is a bit abstract me now...and while I am pretty sure I fall out of this space time time, what I am aware of is all the moments I re-discover it. 

The autumn is such a magical time for me...and this one especially.  No only do I have my wonderful little granddaughter taken with leaves and picking them up and carrying them around as treasures...reminding me how life carries on.   I have a friend who's dog is dying and I am reminded at every turn what is going on for them...reminding me that my troubles are so small in comparison.  But I am also uniquely aware that this is the autumn of my life...and like the trees around me...my life, like a chapter closing.  And there is no sadness...but rather a deep seated beauty and grace in it all.

Someone quotes (paraphrased):  "Autumn, when we get see how beautiful letting go is."  That my zen practice this day.

And somewhere deep inside me, it a rallying cry as well...this autumn...for I was never a fan of winters.  And this winter I am having huge trouble remembering what we do in winter...and I am scared again about driving...and again feeling weak and helpless in wishing there was someone here drive for me.  And beyond my small personal troubles of trying wrack my slow brain this information...because after all the household still utterly depends on me function....is my dear sweet little granddaughter who is just beginning her assessments.  We whine about our 4 hour neuropsychs 2x...but my gosh you should see the rigamaroll you toddler go through for autism testing!  And we adults...and infinitely way more able handle it...poor little thing this baby. 

She so kind and giving, she try real hard understand them....do all the things they asking her do.  The very first assessment from the school was traumatizing...and done by people who do no know how be toddlers...and unfortunately made her infinitely aware that there is something different about her.  So now she have overcome all this.  Her soul so so gentle.  She try so hard. 

And we still have swallow that she much more delayed than even we had thought...that they are putting names, hard names, this little girl...like Autism.  I find I am no wired for news that there is something wrong the baby...just no wired that way at all. 

So as hard as this all is...and will be...and it will be a real long haul this winter...this autumn is a rallying cry dig deep from the inner well...for I am the rock my family stands on (even though I dearly need a rock stand on). 

I know by spring we will have a handle on what we doing this baby, we will be knee deep in treatment...and I will be enjoying the side effects of finding things in all that that help me as well.  But for now, it autumn...a closing of things...a closing of a chapter...an ending of a book. 

Be kind everyone you meet...you really have no idea the battle they dealing with their lives.

<3


The_Sun_Still_Rises
Posted: Tuesday, October 25, 2016 11:56 AM
Joined: 7/24/2015
Posts: 3020


Yesterday my grandbaby was officially diagnosed with autism, she is almost 2.   We still have many intense appointments bring her do.  There are so many feelings swirling around, like leaves in wind, inside me...and I suspect, my daughter as well. 

Much of our grieving happened earlier this fall.   We spent most of the beginning of her life thinking her delays and oddities were because of us.  We had spent this time in shame, thinking we just were no do enough her.  And I struggling with my dementia brain figure out ways get her achieve her milestones.  In her second year life, we start realizing that it her...but are clueless how help.  My daughter me put our brains gether try come up ways help her..but we say, every day is 1,000 questions, 1,000 tries, and 1,000 fails.  By 1.5 years, all her doctors are concerned and telling us get help.  No parent wants hear this.  But really, when we enroll her a small waldorf class this fall....and she can not tolerate being around kids, and she is soooo far behind her age-mates...indeed, appearing nothing like them at all.  We knew....we knew she had this and our hearts broke and we grieved.  For a while we denied this ourselves.  But then as all the places we have been told bring her are saying, yes...she have this and this issue...we knew.  So when yesterday, she said although we still have more assessments...we can tell you right now, this looks like a very classic case. 

Last night my daughter and I watching (I have seen before) the Temple Gransin movie....and we are like, yup...this her. 

Our sights have shifted...from trying figure out what wrong, into now trying figure out what we are going do help her now that we know. 

In 1,000 ways...I feel blessed and pleased that we have indeed come a long, long way in terms of these children.  In Temple's time...they institutionalized these kids and gave up on them.  No one helped them learn talk.  Temple's mom (like Sister Kenny, and other notable women her day) would not give up and helped Temple learn talk.  In the same way, just lke we did dementia, we will find a way help give this little one the best of the best in treatment and supports help her develop skills she need be successful in a kind of life she wants have. 

I was telling lady yesterday, who was sad my dx, that it is ok...I feel very good as a grandma that when I am gone...my daughter and granddaughter will go from my loving support into all this wonderful loving support around them. 

The laws have been change recently in special ed...and Autism is treated...and the huge priority has been made catch these kids while real young.  With early treatment, many are able enter normal mainstream school at 5. 

Oddly, I feel comforted know...that it wasn't just us, and it wasn't just something we thought we saw in her...but now we know why things are hard for her...and better...now we know how help her. 

<3