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For O'brien and those of you know depression. Gratitude to have made it through yesterday and facing today
Canada111
Posted: Monday, April 3, 2017 1:01 PM
Joined: 8/22/2016
Posts: 263


O'brien and everybody, I feel for you O'brien and know what you are going through.

 Anyone who suffers from depression - depression in Alzheimer's especially, not simple primary depression- knows that this demon will not be slayed. Depression in Alzheimer's is a torment that is not eased by anything. Depression was the symptom followed by furious anxiety, that presented in me 20 months ago, when the disease was unmasked. I have previously been on every SSRI and SNRI known to psychiatrists, and they were always too stimulating, and I was prescribed benzos at night for short periods, which mediates the stimulating effect of the SSRI's. It's even likely  that antidepressants and benzo's contributed to the disease in me.

 There are different forms of Alzheimer's presentations obviously. I had no idea I was prodromal in Alzheimer's because I had a mood disease. Surprise, surprise. Memory was not a huge concern. Forgetting something was a "senior moment. Maybe I was just stupid and did not understand the implications. Previous psychiatrist's never suggested Alzheimer's disease, always said I have depression with anxiety, or possibly bipolar 2-until one of them did last summer after the detox from Klonopin and Neurontin and my behaviors were off the charts, with extreme agitation, apathy in the am, depression, rage, all mixed together. He (a very smart Harvard grad) was the only one who saw something that indicated Alzheimer's or dementia. That is why I made appointments with neurologists. Problem is there is nothing the neurologists can do in early AD, except for the very modestly helpful central acetylcholinesterase inhibitor drugs.

I've been fortunate to receive your kind support. There is no where else to turn for me now but here. You are virtual friends. I would so wish to meet some of you, to sit in a room with you and talk. Everyone except my husband has disappeared. My husband is still here, barely, but clearly is resentful of me, and wishes I would disappear. He feels trapped by me. Yesterday he said, he felt "caged" by me.

I've been reading about types of Alzheimer's disease. Some of you do not suffer with neuro-psychiatric disease as a result of what is happening to your brain. I do. My moods have been so fiercely altered by this disease, that I can not go through a day without plummeting into the darkest pit. Then it goes away and agitation/anxiety replaces it. The swings are not bipolar I was told by the neurologist who said that pattern is not seen in the scan. They are the result of Alzheimer's pathology I believe. Now I am weak, where I was strong. I am insane with grief, where I was optimistic with hope before.  And yet here is another day and it's spring and I am able to write and be here to share. For that I am grateful.


julielarson
Posted: Monday, April 3, 2017 1:13 PM
Joined: 9/30/2015
Posts: 1155


I am grateful you are here Canada! I understand your mood switches, I have had anxiety in the past but it is nothing like what I have been going through of late.. This is all day long anxiety that nothing seems to take care of.. I have no depression just the anxiety.. I wish it would abate but it does not seem to for now.
BlueSkies
Posted: Monday, April 3, 2017 1:34 PM
Joined: 2/24/2016
Posts: 1096


Canada, I have suffered severe depression in the past and know it can be a living hell.  It is important to breath deeply and slowly.  It helps to try not to think too much about things. I know, easier said than done, but it's important to try.  Find some distractions, hopefully something you can enjoy, but when you are hurting this bad any distraction will be helpful.  Take one day at a time which it sounds like you are doing.  Take only a moment at a time if you have to.  Hang in there.  Keep posting.  We are here for you.  Sending you lots of love and a big hug.
grandmalynda
Posted: Monday, April 3, 2017 4:40 PM
Joined: 12/3/2016
Posts: 374


In the past I experienced severe depressive episodes.  The new neuro is saying that's what she thinks is happening now.  I remember those times all too well and that isn't it.  I am having neuropsych testing done next week which will hopefully sort this out.

Be patient and kind to yourself now more than ever.

--Lynda


obrien4j
Posted: Monday, April 3, 2017 7:25 PM
Joined: 11/18/2016
Posts: 451


Canada, O'Brien here, thank you for your heart-felt post. There's nothing better than the validation we get from one another, something not easily given to us from our families.  I have never been happier than during the last 5 years, and I didn't want the diagnosis of dementia to send me into a deep depression. I know that deep,dark pit only too well and do not want to fall into it, since it will be very difficult to climb out again. The sooner I am able to embrace this new journey, the more living I can do. There's no sense in fighting it- it's not going anywhere, it wasn't a mistake- it is what it is. 

You are so right Canada, to be grateful for spring and sunshine and to do what we are still able to do. 


Iris L.
Posted: Monday, April 3, 2017 9:13 PM
Joined: 12/15/2011
Posts: 18342


Canada, I think it is too soon after detox from benzodiazepines and antidepressants to say what your cognitive level will become.  Give yourself more time.  I have been on medication for eight years.  I fell into a deep depression after having a prior history of depression/anxiety with a lot of antidepressants and anxiolytics.  We don't know how long these medications can be (for lack of a better word) embedded into our brain biochemistry. 


 Work on detoxing your body as much as possible.  Think about pesticides and other chemicals that you might ingest.  Work on stress-relief and any other therapeutic modalities that you think might help you.  That's what I did and I am pleased with my progress.  I am not cured, but I am better than I was eight years ago.  Actually, it has been ten years since I told my internist that my life had come to a standstill.  It took me two years to find a neurologist who took me seriously and provided some treatment.


Iris L.


MaryW
Posted: Monday, April 3, 2017 9:57 PM
Joined: 3/3/2017
Posts: 174


I have to agree with Iris, the wrong medications can really mess you up.  What you are describing sounds like you are on the wrong medication.  If you were just recently diagnosed, then mood swings are to be expected during the grieving process.  If you don't mind my asking, have you ever heard of the behavioral variant FTD?  Because not everyone with dementia has Alzheimer's.  Here's a link to something about FTD behavioral and mood issues:  http://brain.northwestern.edu/pdfs/ftdppaconference/ApproachesToBehaviors.pdf

Mary


llee08032
Posted: Tuesday, April 4, 2017 8:28 AM
Joined: 5/20/2014
Posts: 4408


Canada,

I'm sensing a glimmer of hope...enjoy the beautiful weather. Treat yourself to some sunshine today. Do as you wish. Nothing if that is what you want to do. You did get through yesterday and you are here today. Your among those who know the dark side and those who found the light. The courage to push forward is there ...source your strength and push through. We will count on you being here tomorrow.

It's going to be 75 here. I will think of you all as I let the sun caress my face. Send you love. We could all do with some vitamin D. 

obrien4j
Posted: Tuesday, April 4, 2017 9:49 AM
Joined: 11/18/2016
Posts: 451


I like that llee- you got through yesterday and you're here today. That speaks volumes. I've never lived the motto,"one day at a time"- but right now, it's sometimes, one hour at a time. I have 5 meetings today- the thought of it overwhelms me as more and more work will be pushed onto me. But I have to breathe deep and stay focused,  I know that soon enough I will be on disability and I then I can pack up my things. I have to take care of me, before I can take care of anyone else.
Canada111
Posted: Tuesday, April 4, 2017 7:28 PM
Joined: 8/22/2016
Posts: 263


Thank you all for your kind support and caring. I just had to stop myself as I was writing a long litany of woe and symptoms.

I am afraid. I've lost a good deal of functioning and independence.

I do not have FTD behavioral variant, Mary.

 The FDG PET CT imaging showed early Alzheimer's, and it appears that my frontal lobes are now affected beyond the temporal and parietal lobes.

My fear is that I am declining rapidly and will have shorter survival because I have so many neuropsychiatric symptoms, including depression, anxiety and apathy. This article alarms me.

https://www.hindawi.com/journals/bmri/2014/927804/

Apologies for my lack of emotional stability. With me there is a great deal of fear.


Iris L.
Posted: Tuesday, April 4, 2017 7:46 PM
Joined: 12/15/2011
Posts: 18342


Canada, you are scaring yourself!  This report was written in 2014. What was written in this professional journal is the same that is written on the pages of these message boards every day.  Some PWDs exhibit neuropsychiatric symptoms.  The members here use various modalities to deal with the neuropsychiatric symptoms, including drugs and non-drug methods.


Not all PWDs experience the neuropsychiatric symptoms.  The article goes into some detail about each type of symptom.   This type of report is what I used to read voraciously in my career.  No longer.  I'm not going to stress myself over it.


I used to have a great deal of anxiety, enough to severely limit my functioning.  I had a history of depression including a deep depression.  I found little help from professionals, except for one LCSW.  What help I found came from my online reading and the other members of this board.   Emotional lability is a feature of dementia and we have to figure out what we need to do to control it.  We are on our own.


Iris L.



llee08032
Posted: Wednesday, April 5, 2017 7:56 AM
Joined: 5/20/2014
Posts: 4408


Canada,

It's okay to write about and share your "woes and symptoms." Where else can we do that but here when others don't understand? When others don't get it? We share our symptoms and woes here and it helps us. We get each other, we understand each other and support one another. We're here for each for the best and worst of times. 


We have to learn to manage fear and keep it at bay as best we can. Fear = anxiety which = exacerbation of symptoms which = a %50 decrease in cognitive functioning! 

FEAR = False Events Appearing Real or Face Everything And Recover. For me or us that can mean recovering or reclaiming our lives to the best of our ability.

 What are our abilities and strengths? What are your abilities? What can you still do?

When we project into where the future will take us with the disease it's pretty much guaranteed and a sealed deal that we will will feel fearful. We all go there from time to time. There is a learning curve that dips steeply. Nevertheless, we can learn to manage and work with fear and not let it overcome us. 

The evidence of what fear does to US is significant! 

Managing fear is one of the first changes that we must make in our thinking  upon being diagnosed or during the diagnostic process. 


llee08032
Posted: Wednesday, April 5, 2017 8:02 AM
Joined: 5/20/2014
Posts: 4408



Canada111
Posted: Wednesday, April 5, 2017 10:17 PM
Joined: 8/22/2016
Posts: 263


Ilee, You know the "dude" (Ralph Waldo Emerson) had dementia?

From the web- "Oliver Sacks, MD, a professor at Columbia who writes lyrical books about people with neurological disorders, recounted how Ralph Waldo Emerson was cheerful in his sixties when he began sinking into “soft oblivion.”  When a friend asked how he was, Emerson is reported to have said, “Quite well.  I have lost my mental faculties but am perfectly well.”  He could not remember his own work but continued to give lectures by reading his notes, joking that he was “a lecturer who has no idea what he’s lecturing about.”

There are some who sink into "soft oblivion". The luckier ones apparently.


llee08032
Posted: Saturday, April 8, 2017 9:26 AM
Joined: 5/20/2014
Posts: 4408


Canada,

I did not know that Emerson had dementia. I imagine he had a huge cognitive reserve to tap into. There is a term something like happily demented or something similarly related to "soft oblivion" but I'm drawing a blank? 

At times Emerson liked to make a joke of his incapacities: when unable to summon the word "umbrella" he said, "I can't tell its name, but I can tell its history. Strangers take it away." But he was gregarious by nature, and his "perpetual forgetfulness of the right word for the name of a book or fact or person" was an increasing frustration and inhibition: "I have grown silent to my own household under this vexation, & cannot afflict dear friends with my tied tongue." He was also buoyant and uncomplaining by nature, but Charles Eliot Norton recalled that one of Emerson's last remarks to him had a hint of Lear-wonder: "Strange that the kind Heavens should keep us on earth after they have destroyed our connection with things." The other famous story of Emerson forgetting Longfellow's name while eulogizing him at his funeral is apocryphal, though he did say to Ellen as they stood by the coffin, "Where are we? What house? And who is this sleeper?"

Iris L.
Posted: Saturday, April 8, 2017 12:50 PM
Joined: 12/15/2011
Posts: 18342


Ilee, are you thinking of the term "contented dementia"?  


Iris L.


llee08032
Posted: Sunday, April 9, 2017 9:18 AM
Joined: 5/20/2014
Posts: 4408


Yes, that's it. Thank you Iris. Wish there was a pill for that.
alz+
Posted: Thursday, April 13, 2017 5:51 PM
Joined: 9/12/2013
Posts: 3608


what a moving discussion.

so many of us were told we were bi-polar and started on the psych drugs - me too. Looking back it was anxiety and frustration as part of ALZ.

Like Iris and some others, I am doing better now than years ago.

This helps - and I  posted it on its own too.

http://explore.org/live-cams/player/long-eared-owl-cam

the page has lots of other live cams. I was one of the worriers last year over the baby eaglets. The owls are more tucked in so not worrying about them. I also like the live space shots on youtube. Like lava lamps.

In no way dismissing the power of the depression, fatigue, and stiffness that comes. At times I thought I had fallen out of a boat into rapids and was fighting to keep head above water.

love the support going on here.


Iris L.
Posted: Thursday, April 13, 2017 6:49 PM
Joined: 12/15/2011
Posts: 18342


We have fallen out of a boat into the rapids.  The problem is getting into a new boat (our new reality) and navigating the rapids.  We can do it, but we don't know how and no one knows how to tell us how.  We have to learn on our own.  Most of us learn to paddle by ourselves.  Some of us may have some help.  


I truly believe that this message board is the best place to learn how to paddle.  No one else seems to have any answers.


Iris L.


obrien4j
Posted: Friday, April 14, 2017 12:25 AM
Joined: 11/18/2016
Posts: 451


So true Iris, we gotta do what works for us!
Michael Ellenbogen
Posted: Friday, April 14, 2017 7:08 AM
Joined: 11/30/2011
Posts: 4384


 I really like that analogy. I may just use it if I can remember it.


BlueSkies
Posted: Friday, April 14, 2017 12:19 PM
Joined: 2/24/2016
Posts: 1096


I like the analogy too.  Great visual to hit the point home.
Iris L.
Posted: Friday, April 14, 2017 12:26 PM
Joined: 12/15/2011
Posts: 18342


I like it too.  We do fight to keep our heads above water.  I think that  this online support group is the new boat that we can climb into to navigate the rapids.  And they are true rapids, because there is danger all around us.


Iris L.


obrien4j
Posted: Friday, April 14, 2017 8:13 PM
Joined: 11/18/2016
Posts: 451


I oftentimes find myself drowning and coming to terms with whether or not I want to be saved or if I should  just let go. How could I be so over the moon happy in love, blessed beyond belief, and excited about living and yet utter those words?
llee08032
Posted: Saturday, April 15, 2017 9:26 AM
Joined: 5/20/2014
Posts: 4408


There are rocks throughout the rapids. We have to be very careful not to get banged up against them...not to get pounded against the same masses of stone over and over again. We must learn to navigate the rough waters around the rocks and at other times we must hold on to the rocks digging our nails in with all our might and power.




Michael Ellenbogen
Posted: Saturday, April 15, 2017 9:30 AM
Joined: 11/30/2011
Posts: 4384


That must explain it I think I hit some of those rocks head on. 


llee08032
Posted: Saturday, April 15, 2017 9:30 AM
Joined: 5/20/2014
Posts: 4408



MaryW
Posted: Saturday, April 15, 2017 10:11 AM
Joined: 3/3/2017
Posts: 174


How did we go from navigating rapids in a boat to danger and getting caught hitting rocks?  I liked Iris' original metaphor, it was pleasant and uplifting.  However, then things seemed to take a sudden downturn.  Did something happen on here that I am not aware of?

What you consume often explains how you experience things.  Some have mentioned using marijuana and drinking, both of these are depressants.  They will cause you to feel like things are worse than they are, and to feel worse about yourselves than you otherwise would.  Have you considered the connection?

Depression isn't something that is an issue for me.  It could have been, but I noticed a big difference when I removed certain foods from my diet.  Not only did I feel better physically, but I also felt better mentally. 

Mary


alz+
Posted: Saturday, April 15, 2017 10:43 AM
Joined: 9/12/2013
Posts: 3608


"learning to paddle a boat through the rapids"

brilliant. Need for lifejackets, and there is a safer way to go over rapids as I recall: on your back, feet first.

MaryW - I don't see what went dark, did you mean about the hidden rocks we sometimes hit while learning to navigate rapids? I am always interested in your take on things. I  forgot if you were recently diagnosed.

*****

regarding cannabis as a depressant: yes, we should all avoid the things that cause us to feel worse, and we are all entitled to use what we feel helps us. 

It is an ancient medicine, one that was in our grandparents' doctor's bag but if you have found it not good for you, in fact a depressant, that is important for others to consider if they decide to try it or continue enjoying it.

*****

The post started with how the boards support help each other through horrible episodes we call "depression". The intensity of the experience compared to our previous bouts with depression might be worthy of a new name.

love you all


llee08032
Posted: Saturday, April 15, 2017 10:47 AM
Joined: 5/20/2014
Posts: 4408


Just playing and having fun with the metaphor of the rapids. I enjoy the playful moods and don't mind admitting that I've fallen off the boat a few times and hit my head .




julielarson
Posted: Saturday, April 15, 2017 10:51 AM
Joined: 9/30/2015
Posts: 1155


I have to say that I recently hit the rapids and the rocks, but things are looking up now.. I am doing so much better.. It seems that when I notice a loss of ability I go though the rapids and hit the rocks but as I get used to the way things are I do better mentally, and emotionally.
llee08032
Posted: Saturday, April 15, 2017 11:33 AM
Joined: 5/20/2014
Posts: 4408


Holding onto the rock and digging your nails is a positive metaphor for me taught to me by my son when he was two...

We went to visit a friend who had just moved and helped her with some grocery shopping. Beyond the back of her house was a big field of grass that ran up a big hill. We had the patio doors open and were putting away groceries while my son played outside. I took a peek to check on my son and he was gone! I flew into a panic and ran up the hill. Before I make it to the top of the hill my son comes over the hill soaking, wringing wet. Little did I or my friend know that there was a creek at the bottom side over the hill or that my son had fallen into the creek as I was running up the hill. 

I was both aghast and relieved that he was okay at the same time. I asked my baby boy how he got out of the creek? Very emphatically he said, "mom I dug my nails into a rock" as he held up his little hands to show me how hard he held onto that rock. 

I cannot count the times I've pictured him holding on and digging his nails into that rock with his little hands. How through darkness and despair throughout my life that I've told my self to dig in with my nails and hold on. 

I know now that the rock was placed there. Meant to be there to save my son and most surely do I know He who put there.


BlueSkies
Posted: Saturday, April 15, 2017 3:52 PM
Joined: 2/24/2016
Posts: 1096


Wow llee, I got emotional reading what happened to your son.  I can only imagine how upsetting that must have been for you.  The visual of your little boy digging into the rock to save himself was heartbreaking, but what a little fighter you have.  I too believe that rock was there for him.  It was not his time.  I too would always think of that incident in hard times if I were you.  In fact, just from reading the story here I think I will be remembering it during difficult times myself.  Thanks so much for sharing it.
BlueSkies
Posted: Saturday, April 15, 2017 3:55 PM
Joined: 2/24/2016
Posts: 1096


Michael, I believe we have all banged our heads on a few rocks.  It seems to be a part of life, with or without dementia.
MaryW
Posted: Saturday, April 15, 2017 4:29 PM
Joined: 3/3/2017
Posts: 174


Alz, I did not mean to imply that you weren't free to use it and wasn't intending to get into an argument about it.  It is not my place to judge. 

However it is just a connection that I have observed among my friends who drink and use marijuana.  They claim it helps them get through the day and while they are using they feel better.  However, when the effect wears off they are complaining about their lives being miserable and over time, they feel that their situation is increasingly miserable.  Maybe I only notice this because I don't use, not because I don't want to, but because I'm allergic to it.  I break out in horrible itchy rash that spreads over my whole body.  In the years that I haven't been able to use it, and my friends kept right on using it, I began to see this connection.  It boosts you up at the time, but it sinks you down farther than you were to begin with. 

In connection with that, I notice improvements in my own attitude when I changed what I ate.  When I stopped assaulting my body with foods that weren't good for me, my body quite making me miserable.  When I quite feeling miserable physically, I felt better emotionally.  All things are connected.  For some reason I feel like I am sounding preachy.  That wasn't my intention.  My hope was to share some tools sorry if it didn't come off that way.

Mary

 

 These two experiences seem connected.  When one is depressed to the point of needing quotes to pull them through (and we have all had our down times) and they are also using, it might be time to look at whether the use is aggravating the depression.