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Blessings of Alzheimer's & Dementia
The_Sun_Still_Rises
Posted: Tuesday, January 5, 2016 6:51 PM
Joined: 7/24/2015
Posts: 3020


 

I find good things about dementia all the time…people often cannot understand why I think of things as gifts. Here are some of the blessings, I have found, from being diagnosed with dementia…and having dementia.

However, before I go on, I should explain, that how you view (and the experience that follows) Alzheimer’s…is 100% a matter of perspective. And so the same adage applies, if the view sucks, step over to a different window…simple as that. And, really, what window you view things through, is 100% your responsibility. So if you tell me that Alzheimer’s sucks, for you…not only will I believe you, but I will also be infinitely aware that you chose *that* particular window to look through, and thus, chose the experience that followed. And, I say, if you want suffering…by all means, enjoy your suffering (who am I to judge?!). Just don’t fault me because I don’t choose that for myself. For me, I am dying…sooner rather than later…for me, life is way, way too short to waste even one fraction more of a second of it suffering.

Another thing you should understand…is reality is reality…and it is reality independent of whether you like it or not. In fact, reality could care less what you think about it. The sky is blue. I am sure some people could be really offended by that…but it is blue just the same. Simple logic…if I get all upset at the sky being blue – I will be miserable. Do I want to be miserable? No. Indeed, life is infinitely WAY too short (esp if you have this disease) to spend even one more second than you have to being miserable. So, if I don’t want to be miserable, I have to change my point of view. I have to get a grip on the fact that the sky is blue and stop wasting my time forming opinions about it…especially opinions that cause me to suffer.

Some good things about the disease…

I have a support group now. Indeed, I have a few. And I have made some amazing wonderful new friends whom I love to no end.

I have an Association…and I got to go on the walk. Now, that might not seem like much to most people…but when you consider that I suffered for 7 years with a “mystery illness” and nearly lost my ability to walk…it is a big deal to me.

I have a diagnosis…and an explanation for why things are so hard. Again, from the perspective of years of shrugs and I don’t knows…and no reason for why I was getting worse – it is really nice to finally know. Really, really nice to know.

I have a medicine that helps me to function better. OMG, that is thrilling in an of itself. To have something, anything that actually helps…you have no idea. That goes for the physical issues too…went from barely walking to now can run up the stairs, and can walk around the block. I don’t think my heart will ever stop leaping and singing inside from that.

I have a host of wonderful workers who help me do all kinds of things…and yup, I love them too.

And did you know that doctors take you far more seriously when you have a diagnosis? That is pretty cool too. I was dying anyways…only now I know what is to blame. Again, it is all a matter of perspective…if you spent years, literally years, getting worse…knowing you are dying…and having nothing to pin it to…and doctors that don’t take it seriously…well that definitely sucks worse than knowing what it is and having doctors finally trying to help.

After a lifetime of service to others…I have to say, that there is such a beauty and grace and love in witnessing others do for someone (me), as I used to for others…that I never would have known, or been witness to, if not been on the receiving end of it. I *LOVE* seeing others hearts that way…*LOVE*…it might even be the single most beautiful thing I have witnessed in this world.

And, I have to say, I find that there are a lot of spiritual lessons involved in dementia, like that one.

There is so much work to be done, true…but that also means that there is so much opportunity to STILL be of use. And the whole fact that the “normals” leave it entirely up to us…couldn’t be more perfect. Because that means, even in stage 6, I have a chance to be of use…without having one of them rush in to take over. Not that I wouldn’t appreciate their help and support…but I dig the opportunity all the same. And, it has the side effect of evoking neuroplasticity which I am all for.

If all things in my situation were not exactly as they are, I wouldn’t be getting what I am getting.

Not that life is all peaches and cream, mind you…just that there is a lot of good to be had on the way out of this life…and I, for one, am grabbing all I can of it. Again, knowing that it is all a matter of choice of windows from which to view things…to me, life is just way, way, way too short to waste even one second of it being miserable.

If nothing else, this diagnosis should be a huge (loud) wake up call, and kick in the seat…to make the most of what you have left.

As to spouses…people say the long goodbye like it is a bad thing. But imagine if you two fought one day and one of you died suddenly in a car crash. You’d never have the chance to say sorry. You’d never have the chance to say how you really felt…or to make right. Dementia and Alzheimer’s gives you that time and opportunity. What an awesome blessing.

Alzheimer’s gives you time…that in itself is a huge blessing and gift. Time to make what you will of what you have. Time that YOU get to decide how you will use…or squander…or piddle the time you have left. I *LOVE* that it gives me time.

And it is the same exact lesson we each had our whole lives…to make what you will with what you have. Only, during life, we usually don’t feel pressed by time. A dementia diagnosis presses you for time…now the clock is ticking, sink or swim…that is your choice. And it is always, 100% your choice. When you tell me you only ever suffer, I know you wimped out…and gave up…and sank. I will lend a hand, but I will not go down with you. And I reject the offer you make to pull me down, like any drowning person does, with you. I choose to swim.

That said, it is true…we each have our hard season, where we have to come to terms with it…and make peace with it…because it isn’t going away. A dementia diagnosis comes like a wound we have to lick a while. So you lick your wound, you cry, you fuss, curse, and beg…and eventually you come back around again. You see that the sun still rises…that life goes on…and that you really are ok…as ok as you were the weeks leading up to the diagnosis. So you do what you can to set yourself in the best possible position. And live as fully as you can, doing what you are most passionate about.

I also don’t see it as having to be “so-bad” for caregivers…and I know that is a bit anti-the established agreement. But I have been caring for my mom for the last 10 years, and I love it. Indeed, it is the highest act of love I have experienced…and I feel blessed to be a part of it. I wouldn’t have had it any other way.

Peace. <3

 


Peg70
Posted: Wednesday, January 6, 2016 7:58 PM
Joined: 5/14/2012
Posts: 492


You had your say and I am happy for you, happy that you are doing so well in stage 6, happy that you are so articulet. I must be looking out a very different window than you, I wish I could join you at yours, but I am stuck here, watching my husband of over 50 years die a little at a time. An no that doesn't make me happy or feel lucky, it breaks my heart. And yes, I'm tired, too tired to walk in a walk a thon, I'm tired from cleaning, managing the money, paying the bills, buying the groceries, lifting him from the bed to the wheelchair and back, cooking, trying to feed him when he doesn't want to eat, from taking care of the house repairs, mowing the yard, becoming both husband and wife and caretaker, tired of watching him die. I'm too tired to notice if the sky is blue or gray, if it's raining or the sun shining, and more than that I'm too tired to care. I find no joy, nothing good about the fact that I have had to watch him die physically and mentally, to watch a vibrante man turn into a child, then a baby, that doesn't even know or care that he has peed and pooped in his depends, someone that loved and laughed, turn into someone who stares aimlessly out of our bedroom window without talking, knowing or caring. I will except my window, but I will never feel grateful, happy or lucky that I got to experience it. I hate alz and what it does to people, both those that have it and those that are the caregivers. I hated it when my Mother got it and I took care of her, I hated it when my mother-in law got it, and most of all I hate it now when my wonderful husband has it. Sorry if this offends you or anyone else on these boards, but that is how I feel.   Peg
The_Sun_Still_Rises
Posted: Thursday, January 7, 2016 6:23 AM
Joined: 7/24/2015
Posts: 3020


Oh Peg, ((hugs)). 

It doesn't offend me at all.  It is wholly your choice *how* you view your situation.  Like a buffet table of choices...if out of all the choices available to you, and they are endless, *this* is what you choose to put on your plate and drink from...by all means, go for it.  Far be it from me, to take from you your suffering. 

Some people really revel in their suffering, almost seeming to bathe in it...like it is the most glorious thing they do.  I might not understand it, or choose it for myself, but I can certainly accept that others choose it for themselves.  To that I say, have at it...Mazel Tov, Huzzah, and L'Chaim!

IF...and it is a big IF...IF that is your choice.  As not everyone realizes that they could choose otherwise...which is why talk about it. 

Perspective, to me, is an interesting subject.  It is like the thing...dementia...is inside a finely cut diamond, with 100's of windows to look through and see it...each window giving a slightly different version of it.  And, each version, creating a slightly different emotional reaction in the person viewing it. 

Which window you look though is ALWAYS a matter of choice.  Of course, not everyone immediately realizes that it is a choice, but hopefully everyone eventually works around to understanding that which cut of the diamond you look through - is all a matter of you, and what you choose at any given time.  And, that at any given time, you can look through different windows...or more windows than just one.  Indeed, many can look through multiple windows at the same time.  Which, to me, is fascinating. 

However, to look at it through a window that makes you endlessly tired, depressed, and sad...is, well, sad. And I have to acknowledge and honor that doing so might also have a payout for you, like...maybe people feel sorry for you...or maybe there is a spiritual lesson in that for you.  Maybe that payout is good enough or high enough to keep you there.  It is not for me.  For me, that window sucks balls.  For me...through that window my spirit withers, breaks, and dies...for me, my spirit sinks and dies through that window...and I cannot imagine wanting to stay in that one more second than I had to.  No amount of pats on my back or people feeling sorry for me would be enough to keep me there...for any longer than I had to be there.  But I also know, people will stay there just so long as they need to. 

And if you think life is peaches and cream for me, you are mistaken.  That window regularly makes its way to my view as well...I just choose, over and over again - not that.  Do realize, that as sad as you are, watching this...I am living this.  I will not get to go and sit on a beach after this is through...or, have a life beyond these moments, as you will.  For me, this is all there is.  And I could let myself sink in to the yukky, sticky like tar, agreement of endless grief and sadness and end my life on that note.  Or...I can choose to end my life on a better note than that.  I choose to walk out of this life, appreciating all I had...and appreciating what I can still do...with love, completeness, and joy...yes, joy.  So I do the work it takes to get there.  And yes, it is "work" to get there.

I too suffer.  I just don't choose to stay or live in my suffering.  I too have joy.  I just choose to stay and live in that joy.  I have cared for my mom through debilitating physical illness, I could easily have lived in the suffering of that...instead I chose to live in the joy that day after day, come hell or high water, I was able to find a way up those stairs...I chose to live in my mom's need, and the joy it is to be of service to her.  I truly love caring for my mom.  I feel 1,000 different ways about caring for her...but out of all those ways I feel, the one I select to live in is my love for her...and my joy at doing this for her. 

Everyone eventually discovers the path out of suffering...when they are ready. 

So suffer all you want...stay there just as long as you need to, get all that there is to be gotten there.  And then, stay even longer.  Indeed, stay so long that you become so very, very sick and tired of it...and then stay even longer.  Stay until it is so uncomfortable there that you'd give anything to be elsewhere...stay until if that space ever dares present itself to you again, you will reject it on sight. 

Much Love, and Peace <3 


llee08032
Posted: Thursday, January 7, 2016 7:15 AM
Joined: 5/20/2014
Posts: 4406


Peg,

It's not appropriate to come to the persons with dementia board in anger and   resentment at Sun, a young woman in her 40's for expressing her gratitude about how she views her life as a person living with dementia. You say you have been married 50 years so I'm assuming your husband is somewhere in his 70's and that prior to his diagnosis there were many good years for the both of you. I am truly sorry that your life is so difficult right now. However, it is our right to express our joy as well as, our woes and struggles on this board w/o being made to feel that we are wrong for feeling the way we do. 

How you respond

the way you react

is always up to you


No one makes you

or forces you 

to get involved    

Kate Swaffer 


Peg70
Posted: Thursday, January 7, 2016 9:52 AM
Joined: 5/14/2012
Posts: 492


I read your board as many of you read our boards and comment on them. I am not condemming you or others like you, but when you start to condem me and those others who are trying so hard to take care of you, it gets to me. As I recall, whinning caretakers was the phrase used. I do not whine about my husband, I love him, I take the best care of him that is possible, I keep him at home, not in some memory care unit or NH and I will till he passes. And I am happy for those of you that can live and do so many things, it is just the other side of the coin for me and for many others, our spouces can't walk, not at all, let alone do a walk a thon. They have no control over bladder and colin, they don't speak, have trouble eating, get angry at us for things which we have no control over, have no friends that come to visit, or go places, their minds have gone to a place that can't be reach. But still we love and take care of them. And yes if I am lucky and God deems it so, I will outlive him, so as you suggested I will be free to do all the things you think I will be doing, go to the beach, by myself because the other half of me is gone, my life will go on, but without my other half, the half that gave me joy and happiness, I will be alone. And for your information, I am not depressed, not on meds for anxiety or being depressed, I am simply tired, mostly tired of watching him die, not his body as much as his brain. He was a brilliant man, much smarter than me, I am just a simple person, but he brought the sun into my life, the joy, the happiness, he made life interesting for both of us, and now that part of him is gone, I have only his body left, but and make no mistake about it I still love him. He is still my life, and if I find it hard to live without him, that will be my problem, if I still feel like looking out my same window that again is my problem. 

Yes you only have limited time to live and I am glad that you are doing all you can to make it the best life you can, I admire that, I am happy for you, all of you that are still functioning and able to do things, glad that your minds allow you to see and know what is going on, and can enjoy whatever it is that you can do. But I too only have a limited amount of time left to live, and no more than you can I tell you how long that will be, that is in God's hands. But I don't have the freedom to do anything other than take care of my husband, not because it is some kind of law or requirement, but because I choose that window, and God willing I will continue at that window. When we got married I took my vows very seriously, for better or worse, in sickness and health, till death do us part. So condem me if you must, get angry at me that I am still alive, hate me for the occational rant or vent, but know that if it wasn't for me setting here, taking care of him, he would be much worse off in a home somewhere where he was taken care of but not loved, not the way I love him. And if I hate the alz which has taken his mind and now is taking his body, and can find no joy in that, I feel sorry for you, I wouldn't trade my window on this world for all of the other windows out there. 

But since you feel I have no place in your world, your boards, I won't come on them again, though you will always be wecomed to come over to our board and listen to us whine, give each other helpful information, the occasional pat on the back, ask questions and try to do the best we can for our loved ones. You can read from the caretakers that have lost that loved one and how they are doing. As for me hopefully I will still be at my window, trying to make sure he is happy as I can make him, until one of us passes. And this time I'm not sorry if I have upset any of you, I didn't do it out of spite, temper, anger or any other emotion that you have attributed to me, I did it so you might understand what the other hand is going through, you aren't the only ones living with alz. the caretakers are living through it also. May God Bless you All      Peg


BillBRNC
Posted: Thursday, January 7, 2016 11:15 AM
Joined: 12/2/2015
Posts: 1018


Life is way too short for this kind of back and forth. We're all dying, some just faster than others. There's plenty of pain and suffering to go around, plus hopefully a little joy and peace too. Just saying.
mrranch2
Posted: Thursday, January 7, 2016 12:29 PM
Joined: 6/26/2015
Posts: 5


I totally agree with BillBRNC--we are all dying, just some of us faster than others, and life is too short for this type of bickering.

I admire your strength and outlook, Sun.  I spent much of my life working with and advocating for persons with mental retardation and/or mental health problems.  The philosophy you so eloquently expound is exactly that which I espoused for so many years.  Now, with the shoe on the other foot, I more fully appreciate what my clients experienced and went through and how incorrectly the word "suffering" is applied.

Peg70, you have nothing to be ashamed of, offended by or regret.  I hear you saying the same things I see my wife doing.  What my wife doesn't see is the guilt and remorse I feel because I can no longer care for her, provide for her or do for her as I used to, that I am no longer the man she married, nor will I ever be again.  There are times I am able to express it verbally, and rare times I am truly able to show her that I still love her very deeply, am still very devoted to her, and absolutely could not go on without her.  Indeed, as I look back on all we have done together (and it sometimes amazes me how much I do remember), and all we have accomplished together, we are achieving one basic goal we set so many years ago--we are growing old together.

I am thankful I am able to see, understand and appreciate both sides of the situation.  I just wish I could do more about it, especially for my wife.

A very wise man recently said:  "As patients we try hard to keep our feelings in check.  As caregivers you try hard to not look at the loss.  Both of us are kidding each other."

There is life after diagnosis.  Build memories.  Enjoy every moment of every day. Each is a gift from God, that all too soon will go away.

 


Iris L.
Posted: Thursday, January 7, 2016 1:00 PM
Joined: 12/15/2011
Posts: 16415


This is a conflict that is indwelt in the patient/care partner dynamic.  What we feel as patients may be the complete opposite of what the care partner feels, and vice versa.  It's just a fact. 


 It is not good to sweep it under the rug, but to acknowledge it and express it.  Nevertheless, expressing this conflict can be painful to both of us.  


But, we are adults.  We have to hold each other (figuratively) in our pain.  That is the only way we can deal with the pain.  


Iris L.



The_Sun_Still_Rises
Posted: Thursday, January 7, 2016 3:37 PM
Joined: 7/24/2015
Posts: 3020


((Hugs)) everyone. 

Peg, indeed, it really wasn't about any real person, but rather being addressed to a metaphorical mythical amalgumation of persons.  And I truly get where you are coming from and what you are saying, I do...and I do appreciate you saying it and being open to talking. 

It is my hope to find ways to bridge these two worlds...so we both all work together better, and are more on the same pages than not.  But, what I cannot do anymore...is take care of other's emotions.  I can only put words to what I am experiencing.  No one has to like that I experience what I do, no one is obligated to agree with my experiences.   

Sometimes, I think it happens to people, inadvertently...without their awareness...because that is what is handed to people in groups like these.  Everyone talks about how "hard" it is, how "sad" it is, and about their "grief" and "anger"...so when a new person comes in, when they are trying to figure out how to feel about the whole thing...what slips into their default folder is "hard, sad, grief, anger" and thus they become. 

Turn the tables...if you lost your legs in a car accident, and all your loved ones could do is cry and be sad over the loss of your legs and never again could see you, but only ever saw the lost legs...about how long would you stand for that...exactly?  At what point would you want to get on with your life? 

What is missing in dementia care, I feel, is role models, instruction, guidance, and support in moving towards "acceptance"...that is where, I feel, people get stuck.  Again, no judgment. If you cannot accept that the sky is blue, you are going to be stuck in being miserable about the damn sky...and thinking it should be other that it is....like some other color than sky-color.   

The other missing piece...just like Alzheimer's isn't all just memory...a dementia diagnosis isn't all hard, sad, grief, and anger.  There is so much more.  There is the warmth of a hug...the wonderful lights on a xmas tree...a small child's smile...or the making of a teen's day. 

And yes, oh yes, those things do so easily get lost.  Like when parents spend their time on the internet instead of with their kids...why would we let ANYTHING take us away from for tiny small moments of wonder?  Because, aren't those really what life is about?  And we will not get those moments back.

And although it can be hard to see just how much caregiver emotions (no matter how cleverly hidden) affect the person with the disease...it is imparative to find some way to get on top of it, in my humble opinion...if not for your own sake, for theirs. 

And before you go judging me for saying this, realize that I had my dx delayed over 4 years because my providers found it too sad to tell me.  I love them dearly and I have great amounts of compassion for them...but I also cannot help but think what I could have done if I only had Aricept 4 years ago...or if I could have done my Advanced Directive when I actually had more brain than I do now.  So when (metaphorical) YOU don't think that (metaphorical) YOUR sadness affects me...please think again. 

People with these diagnoses need emotional support to cope with and deal with their diagnosis...and then, they need support to live the rest of their lives as fully as they are able.  Some do this, but also for some it isn't even on their radar...and we are lost to caregiver grief, feeling like pieces of shit because we can't be what we were...and (metaphorical) you keep holding our noses in it because (metaphorical) you can't see or accept us as we are now.  It is a bad cycle.  Broken, unworkable...hurtful cycle.    

I see this diagnosis, not unlike Nick Vujicic, the guy with no arms and no legs...who needs help with literally every task.  Yet, he has upbeat and wonderful workers helping him...and has managed to do something great with his life.

I see this diagnosis, not unlike if both my legs got cut off.  Cry a bit, heal, give me rehab and let me see what I can still do.  I can be just as happy in a wheelchair as I can walking.  That is, IF I choose to be happy.  That is, if I choose not to make my happiness dependent on my legs. 

But, again...it takes work.  Personal work, and a willingness to look inside and readjust ones self...and change. 

But IF I could tell you, that you had exactly one year to live...what would you do with that time you had left?  Would you waste it feeling sorry for yourself and crying?  Or, would you take a short bit to cry, and go do all the things you wanted to do...say all the things you wanted to say...and tell all the people you love, that you love them?  See, because I have about a year...that is what I have.  And I have to ask myself the VERY hard question every minute of every day, of...how do I (the very real me) want to spend my last year on earth? 

Because if I could help Peg (or anyone), reconnect with her happiness...even if just for a split second...or reconnect with nature, with the warmth of the sun on her face...have a moment with her husband filled with love and joy...or just simply remind her to look for those small things...that'd be pretty cool way to spend my time. My heart to yours. 

And it is not just those with the diagnosis...not one person here is promised another day, not one more day.  That you get another day...ah, what a gift and a blessing...because it is not a given that you will wake up tomorrow.  Tomorrow is not owed to anyone.  And each and every one of you without the disease runs the very real risk that you will soon be diagnosed with this too.  If having dementia can give us anything, it would be the strong message of make the most of what you do have...while you still have it.  Each one of you, really.  Love you.  <3 


llee08032
Posted: Saturday, January 9, 2016 9:20 AM
Joined: 5/20/2014
Posts: 4406


Peg,

Is there anywhere you can turn for some type of in home care and help with your husband? If you have not already please do call the 24/7 Helpline 800 272. 3900. They may be able to link you to some services in your area in addition to, providing you with some support and ideas to benefit both you and your husband. I'm concerned that you are on overload with the responsibilities of care giving/care partnering for your husband. From a patient perspective I can tell you this is not what we want to see happen to our loved one's and this is not what your husband wants for you. Please understand that I say this out of respect and concern for you.


Amor Fati
Posted: Saturday, January 9, 2016 9:04 PM
Joined: 1/9/2016
Posts: 85


Dear Sun, I want to thank you for your many positive posts and threads. I love the way you look at dementia and find blessings along the way. I love your thread about Zen and the Art of Alzheimer. Yes, it truly is an art.

I am walking this path of dementia alongside my beloved, hand in hand. It is a humbling journey, but there are many blessings along the way. Our love grows stronger every day. Yes, it is a privilege to be present for my beloved, to assist him in any way I can. I do not consider it a hardship.

 Our world is slowly shrinking. My husband no longer derives much joy from going places or being with longtime friends. He is most comfortable at home now. So I transformed our home into a sanctuary. He loves to sit in his comfortable recliner, looking out of the window and watching birds at the feeder or the view into the forest. He loves to listen to soft music, having me close by. He enjoys the soft light of candles and watches to flames flicker. So we have beeswax candles all throughout the living rooms. They cast a warm light in the evening while we sit together on the sofa, hand in hand, treasuring our time together. No need for TV. Our company is enough. Our meals are simple, not much eating out any more. But we eat together, sit across from each other, thankful for being together.

Some may remember me. I posted a while back as Forget-me-not. I posted about how I consider dementia to be a sacred journey. I still feel that way. Thank you, Sun, for your heartfelt and beautiful posts. I treasure them all.

All thank you all who are posting on this forum. Iris, Alz+, llee, Bill, Myriam when she drops by occasionally, and all the others I am forgetting to mention now. Thank you for showing us caregivers the way.

 

 


Mimi S.
Posted: Sunday, January 10, 2016 8:24 AM
Joined: 11/29/2011
Posts: 7035


Yes, We must all be respectful of each other's feelings.
Try to remember that we, patients with dementia, who are posting here, are in early to mid stage. The caregivers who are posting here, are most likely to be caring for someone who is in the later part of mid stage to end stage. 

 

We are talking about two different sets of folks.

 

Yes, in my opinion, there have been benefits to being diagnosed very early. I was able to make plans for my own future, including the type of care I wish to receive. I found out about and follow Best Practices. I have been able to be an Advocate for those with the disease and their caregivers. I have had time, which many caregivers do not, to read a lot about the disease.
I have adjusted to my diagnosis, keep very busy and live one day  at a time.
Some of this reading and watching videos has involved better non-medical ways of managing those with the disease.  When someone of us with the disease says that such is possible, some caregivers, rightfully so, become upset. 
My brother-in-law, who recently died of a stroke, had been caring for his AD wife for years. He told my son that taking care of his wife took 23/24 hours.  Perhaps he exaggerated, but when would he have had time to read the Validation Method book I keep pushing? 
We are all here with one purpose; to make the best life possible for both caregiver and PWD.

 


Iris L.
Posted: Sunday, January 10, 2016 12:45 PM
Joined: 12/15/2011
Posts: 16415


Amen, Mimi.  You are the best advocate for us.  I have learned so much from you.

Iris L.


lhoagjr
Posted: Monday, January 11, 2016 8:22 PM
Joined: 1/24/2015
Posts: 6


Hi, 

My name is Lehman Hoag.  I am 80 and have had MCI for about a year.  I am still able to drive, clean our condo, cook, do the dishes etc.  I am living with the love of my life (wife) for a bit over 50 years. 

I am trying to get into a blind drug test for the third time (tested too smart twice) and believe that I might help others find a cure.  I think that this time I might get selected because the drug company is letting in people like me who have tested too smart before.

I recently read a book A DEEPER PERSPECTIVE ON ALZ. AND OTHER DEMENTIAS by Megan Carnarius which is very good!!!!  It was published in 2015 by Findhorn Press in Scotland.  In this book the author discusses the spiritual aspects of those inflicted with Alz.

Love to all,

Lehman

 


Iris L.
Posted: Monday, January 11, 2016 9:10 PM
Joined: 12/15/2011
Posts: 16415


Welcome to our online support group, Lehman.  Thank you for sharing that book recommendation.  I will try to look for it.  I am glad you are doing so well and able to take care of yourself.  Can you tell us your treatment protocol?

Iris L.


The_Sun_Still_Rises
Posted: Tuesday, January 12, 2016 7:53 AM
Joined: 7/24/2015
Posts: 3020


Greetings, and welcome to the forum...I will look into that book, thanks.  And I look forward to getting to know you.  <3

------------------------

As to where people are...let us not be too quick to judge.  I am early stage 6...and many on this forum are caring for people staged 4,5,6...as well as 7.  Alz+ is easily stage 5+.  So just because SOME of us are in early stages, let us not be too quick to make the same mistake many caregivers make of assuming that because some of us can write and talk that we are not as bad off as we are, or as progressed as we are.  It is well known that feelings, thoughts, and emotions stay long into the disease...and it does not effect everyone exactly the same.  A much loved man named Barry, recently died...and he was posting fairly regularly on FB, deep into stage 6...and posted just two days before his death.  I hope to have the same ability...to post right up to the end. 

And I say that, not to argue, but simply to raise awareness...because it is really very harmful to us when people mistake because we can talk we must not be that bad.  It delays much needed help...and it can prolong diagnosis (and thus meds)...and generally is used to invalidate us, which is all too much a part of the continuing stigma...and sort of goes counter to trying to live well with the disease raging in one's brain. 

Much Love, Sun


hvhartman
Posted: Tuesday, January 12, 2016 11:14 PM
Joined: 11/23/2015
Posts: 106


I have many mixed feelings as I read through this thread.  I am so inspired by the positive but can still relate to the negative.  I find both as I care for my spouse.  Glad to be alive, glad to have time with her, sad for her in her lonely time, now unable to relate to former friends or be the creative homemaker and healing RN she once was.  Sad for myself, giving up plans for an active retirement to change adult diapers, scrub feces off the carpet and listen to pointless babble from a former life partner.

I welcome the many wonderful posting from so many people, Sun and Iris in particular.  Love you all - really deeply love you in your humanity and creativity.  I also welcome and have great appreciation for those that express their anger.  I love you as well - you are staring down the devil and are noble, generous people.

Life and death, sorrow, sadness and nobility.  Themes from the epics of Homer to the lyrics of Emily Dickenson.   May God bless you all.  If you cannot find Him, may you find peace in your own way.


Mimi S.
Posted: Tuesday, January 12, 2016 11:17 PM
Joined: 11/29/2011
Posts: 7035


Welcome to our world ihoagir,

We're so sorry  you didn't get into the trial. Keep trying.

Of course, in a way I'm glad you didn't get in. it means you are still very early. And if MCI, you know there is a good chance you may never progress further.

 Do get involved in Best Practices. Do contact your local Aliz. Assoc. to see how else you might be able to help.

 And do stay with us.


The_Sun_Still_Rises
Posted: Wednesday, January 13, 2016 2:55 AM
Joined: 7/24/2015
Posts: 3020


Hi HVHartman,

I so agree...all in its own place.  The message that I hope to leave people with...it is not that we do not all have ALL these differing feelings, I think we all do...it is that we can CHOOSE which of them to live into...and emphasize. 

In a paraphrase of a Carlos Castaneda quote..."We can be happy or miserable, the amount of work is the same."  And in a Werner Erhard quote: "Chocolate or vanilla, choose?"  As the choice really doesn't matter...it is all the same to the universe, and there are lessons in all of it.  What it does make a difference to...is your experience of things.  

Anyways, my message is one that it is a choice...of all the feelings that present themselves at the buffet table of life - YOU, and you alone CHOOSE which you will drink of. 

As stewards of each other, as stewards of our bodies, and most especially as stewards of our own and each other's souls...it helps to make it a practice (something you make a thing you do), to be mindful of that which you drink...and not haphazardly or carelessly consume. 

That doesn't make it, as a practice, be easy...in fact, it is a difficult practice...which is why they call it a practice.  It is a choice, and the follow through of a choice. 

Said another way...it is a choice to drink only that which brings me closer to G-d, and to reject everything that seeks to detract me or takes me further from G-d.  I choose this...and then when presented the buffet table of choices of how I could see my situation...I choose the choice that brings me closer to G-d...and that is what I fill myself with. 

And it is not perfect...every time a struggle.  But it has taken years of discipline of not giving into what is easy.  One force wants to sink us...back down to him, the other him.  The other force waits for us to reach for Him, to pull ourselves back up to Him.  The choice is always, always ours.  The easiest path is always downhill. It is hard to keep climbing up the hill. 

I choose always to look up.  If you believe in G-d, then G-d did this to me...He had a plan, that I in my stupid human brain could never hope to know or even fathom...the question he asks me, is do I trust Him?  Can I have faith in His plan for me?  The work I have to do is let go...and trust...to have faith.  My life was a gift, far be it from me to be ungrateful for it.  And I find the time I am given a gift as well...for many do not have that.  I do not take that lightly.  I show my gratitude by making the most of the time I have. 

Choice...we always have a choice.


Michael Ellenbogen
Posted: Wednesday, January 13, 2016 7:44 AM
Joined: 11/30/2011
Posts: 3058


I see both sides and total understand it. I have all the anger and more. I chose to keep in locked up in my briefcase. I sometimes drop it and it opens up.  I believe Sun things a bit differently but like me. Well plane on living our lives to the fullest for as long as that is possible. But we also have exit plans so we don’t need to go down the horrible path. You have no idea how good that feels and how one has a better view on things because of that. We are all in different situations in life and we all will have different views on where may be at this point and time. I would not change a thing if I could and it would have had a different outcome in my life. Life has been good to me. Yes even now based on what I have been able to accomplished. While I may not be happy with it. I have done things most could have only hoped and dreamed off. I have the wrong personality for this disease.    


hvhartman
Posted: Wednesday, January 13, 2016 9:58 AM
Joined: 11/23/2015
Posts: 106


I believe in the message that we have choices and life is what we make of it.  I also believe that life has many dimensions, a blend of flavors and colors.  Or a Tapestry, courtesy of Carole King and others. 
Our emotions, positive and negative, are our reaction to the world.  Anger, fear, guilt and sorrow are not separable from life but, at least in my view, are some of the flavors and colors that make life what it is.

So I respect those whose emotional reaction to dementia, or any disease, includes such feelings and I respect them for expressing how they feel, with the hope that they can also accept your beautiful and positive message of looking thru the brightest window you can find. 

Life is woven of many different fabrics.  I hope to wrap myself in all of it till the end and then accept what lies on the other side.


Amor Fati
Posted: Wednesday, January 13, 2016 11:26 AM
Joined: 1/9/2016
Posts: 85


I look at the title of this thread, "Blessings of Alzheimer's". It is easy to get bogged down by the daily demands of caregiving, and it is easy to forget about the blessings along the way. So when a thread with this title comes along, my heart sings.

Dostoevski said, "There is only on thing that I dread: not to be worthy of my sufferings." Victor Frankl wrote a beautiful essay "To Be Worthy of Our Suffering". Here is one of my favorite quotes by Victor Frankl: "Everything can be taken from a man but one thing: the last of human freedoms--to choose one's attitude in any given circumstances, to choose one's own way."

I cling to quotes like this. When the going gets tough, I remind myself of the reason why I am doing this. Everyone on these boards is a beautiful human being, doing the best he/she can do. Blessings to all of us.


The_Sun_Still_Rises
Posted: Wednesday, January 13, 2016 7:26 PM
Joined: 7/24/2015
Posts: 3020


((Hugs)) to you all. 
Gracejenal
Posted: Thursday, January 14, 2016 6:10 AM
Joined: 11/19/2015
Posts: 29


Good for you.  That is what this forum is for.  Get it off your chest and we will listen. Poor you. And poor us.  The caregivers.

Grace


Mimi S.
Posted: Thursday, January 14, 2016 8:28 AM
Joined: 11/29/2011
Posts: 7035


Grace, a question after reading your profile. 

Please, from your library, get a copy of Doraiswamy and Gwyther, The Alzheimer's Action Plan.


Was his diagnosis process similar to what is in the book? If not, I'd suggest you look for a major University or Teachig Hospital with a Dementia Department and go for a consult. the appointment may take about 3 months, but in the long run, that's OK.
 
Meanwhile, do investigate Best Practices.
1. Take meds as directed.

 2. Strenuous physical exercise.

3. Varied and strenuous cognitive exercise.

 4. Mediterranean diet. I also take Omega3 and antioxidants. No smoking.

5. Maintain or increase social interactions.

 

 


The_Sun_Still_Rises
Posted: Friday, January 15, 2016 5:14 AM
Joined: 7/24/2015
Posts: 3020


Another Blessing of Dementia...(adding to the list)

Dementia gives you numerous opportunities daily to laugh at yourself.  As most know, it is an important quality to be able to laugh at one's self...to not take life too seriously.  Dementia provides you many opportunities to do this...like when you get lost in your own bathroom.

Yet another Blessing of Dementia...

A dementia diagnosis (whether your own, or a loved one's) gives you one of the most supreme opportunities to come to a place of Acceptance.  As most know, it is part of personal and spiritual growth to be able to learn to accept what is.  There is little in the world that is harder to accept than a diagnosis of dementia...but also, no where is it more important for everyone's well being that one come to that place of acceptance with things, than with dementia.

Still another Blessing of Dementia...

At least for those on a higher spiritual path.  Dementia offers you a unique ability to purify yourself.  It destroys the ego...and all the made up parts of one's personality (all the fake and pretend things).  Until you become just you, the you you came into this world as...pure, whole, and complete.  A shedding of sorts, an unencumbering...in preparation for heaven.  

Much Love,

Sun


Amor Fati
Posted: Friday, January 15, 2016 4:16 PM
Joined: 1/9/2016
Posts: 85


The_Sun_Still_Rises wrote:

Still another Blessing of Dementia...

At least for those on a higher spiritual path.  Dementia offers you a unique ability to purify yourself.  It destroys the ego...and all the made up parts of one's personality (all the fake and pretend things).  Until you become just you, the you you came into this world as...pure, whole, and complete.  A shedding of sorts, an unencumbering...in preparation for heaven.  

Much Love,

Sun


Dear Sun, so beautifully put! So many opportunities to grow personally and spiritually on this journey. My favorite dementia book is, "Deeper into the Soul". Maybe you want to take a look. Sun, continue to shine your light brightly. You have much to offer. You are a wise old soul.
The_Sun_Still_Rises
Posted: Saturday, January 16, 2016 7:23 AM
Joined: 7/24/2015
Posts: 3020


Ahhh...I looked it up, it looks amazing.  I know someone with the disease who comes at this from a point of curiosity and openness...and I am likely more of an acceptance type of slant.  I am looking forward to reading it.  Many thanks. 
Amor Fati
Posted: Saturday, January 16, 2016 6:26 PM
Joined: 1/9/2016
Posts: 85


The_Sun_Still_Rises wrote:
  I know someone with the disease who comes at this from a point of curiosity and openness... 
Ah, to know such a person... you are very blessed, Sun. To find the courage to transcend the illness in such a manner, it is only given to a blessed few. I bow to your friend.

The_Sun_Still_Rises
Posted: Tuesday, October 4, 2016 5:13 AM
Joined: 7/24/2015
Posts: 3020


I have often said, one of the greatest gifts that dementia gives us is TIME...we get time (provided we are diagnosed early enough) say our loved ones what we need say, time get our affairs in order (as opposed those who have heart attacks or get hit by cars), we have time let go of the ancillary and really LIVE fully and deeply with far less regrets than those not terminal. 

Another great gift, as our memory starts going, is that we get re-discover things we love and enjoy.  Like this autumn...it is like the first time I am seeing autumn...and I get the delight and joy, as my heart skips in joy...seeing it again for the first time. 

Although it often doesn't occur as a blessing...I get see who my true friends are, verses those who give lip service and merely want believe themselves nice people.  We all get this...although we tend focus on the hurt of illusions lost of friendships we thought we had. 

Us younger folk get the opportunity be the face those we encounter what Young Onset really looks like...we get break the mold...and inspire...and astound. 

For the Buddhist in us...we get the opportunity redirect people from their sadness (who ever started the belief this disease sad?!)...towards the joy we can have in life. 

For the Jew in us...we get really live L'Chaim.

For the Christian in us...we get give away all our things.  We get, perhaps, no greater opportunity forgive others. 

But it a long arduous journey from diagnosis ---> peace with our diagnosis.  But one well worth taking.  Not like we have much choice anyways.

<3