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remorse regret and fear
Posted: Tuesday, July 25, 2017 9:02 AM
Joined: 9/12/2013
Posts: 3608

This is disturbing so if today is hard on you don't read this.


Have had under rib pain again and worn out from it, had not slept in 2 nights. My heart has been fluttery lately and I cannot walk in the humid heat without having to sit in the road and get my breath. I inherited alz from my dad and heart problems from my mother. I assumed the heart will end my life before the alz.

to help me fall asleep I looked for a video on youtube and decided to watch one on ALZ late stage, a series of caregivers with their loved one lying in contracted postures, discussing them, analyzing how their mouths open for a spoon etc. There was no help to end the suffering, a nursing home not allowed to give morphine to a woman who had rotten painful teeth and muscle contractures.

From beginning to end everyone claims things about their loved one based on the idea we "forget" our grandkids because we can not name them, fast, with 5 people standing around out of the blue who all then agree how sad it is, esp for them.

"He does not communicate" "she doesn't recognize me" "like a zombie" and on and on it went. They all loved their person, they were all exhausted and fed up with years of suffering and no help.

My fortress of determination crumbled. I took a GABA and slept 7 hours straight. woke up in tears.

I know this is meant to help caregivers and patients but it reinforces the idea tat this illness makes us a shell, an empty vessel, that our identity is gone because "all we are is our memories of who we used to be and do".

My mother, for instance, bless her heart - sat at my dad's bedside in a nursing home after he fell and broke his hip at home. I went to see him a few days later and she was sitting next to his bed doing her crossword puzzle. His face was contorted in pain. I asked what was wrong, she said "they all moan like that". I ripped the sheets off his body and found a MRSA infected black hole where his new hip joint was installed. An ambulance came and took him back tot he hospital.

When I walked in that room it was obvious to me he was suffering. what words could he have said more clearly than his face described? because she believed he was dissolving she sat there, the staff told her "they all moan". 

Hospice was called. The hospital left him in his room, door shut with a hand call button on his bed. Hospice said they would manage his pain meds and help him with the no food no water death plan.

As far as I know hospice came once. During the day my brother, sister and some nieces and nephews stood around his bed chatting as if he was gone. When I was done work I came and spent the evening and night with him. 

The moment that door shut on those people and we were alone we talked with our eyes, with his body (flinch or relax), with love.

I learned to suction him because he was choking and the nurse learned he could not push his help button.

I relive his death week over and over, usually with great joy. He had a peaceful death, no asked me about it.


My husband would not be one of the people in the video who keeps me clean and fed for years, alone. The pressure would make him snap.

Beware all information given about your illness. It is all based on Memory Loss and that memories are who you are. The acceptance of these beliefs is, in my opinion, worse than the disease. It contaminates our care because it diminishes our worth.

Proper place to live, where less is more. Less stuff, less stimulation, less chaos. More space, more simplicity, more privacy makes for a good enough life.

I am in despair today. My priest comes in 2 weeks so I am putting in a request for 15 minutes to talk about how I die.

When I was diagnosed and in despair I found Eloquent Solutions blog about her mother online. How she took her mother who was contracted and miserable and dying, brought her home, switched her meds, and gave her room to live. They had fun. She came back to life.

I intend to go that way, not the miserable waste of time way. But I don't know how it will happen or when. I  keep thinking it is sooner because of the heart.

My unfinished house projects are too much to be in charge of.

Today I needed to come here and regain my composure. Be careful when you go looking for information about the illness. If you look at France or Denmark videos it is a different life and illness than what they are pushing here in USA. If you live here and there isn't a pill for your problems what are your options? plenty, but you have to invent them yourself.

How long to forget what I saw in that video? forever.

Having a good cry today. Humility is doing my best to care for those who help me through this and knowing my fate is out of my hands. It is a relief to be sad today. I wish I could speak to people in a way that would broaden their view, help them challenge the view of dementia.

Having a good cleansing cry. 

love you all

Lane Simonian
Posted: Tuesday, July 25, 2017 9:37 AM
Joined: 12/12/2011
Posts: 5161

To think about the past without letting it consume you is something that is very difficult to do.  Return to thinking about the past in a positive manner as much as possible.

I regret too the narrative of Alzheimer's disease that memory defines a person's personality and that without it a person is an empty shell.  If possible, gently remind yourself that the video was likely meant to shock people into a particular response.  The producers were not interested in telling the whole story.  This is not to deny the suffering and emotional pain experienced by caregivers which is all to real, but to try to continue to see a loved one with Alzheimer's disease as a human being.

I cannot absolutely guarantee this, but it is highly likely that marijuana will stop you from dying from Alzheimer's disease and maintain your quality of life.

Posted: Tuesday, July 25, 2017 11:09 AM
Joined: 9/30/2015
Posts: 1155

Love to you sweet Alz, I am sorry that video showed a life that is not a life but a suffering mess of an end.. It really should not be that way.. I know I wish for you and all my friends here a peaceful end a peaceful life to the end and that people would talk to the one on the bed not about them only.. How sad that it was said that they all moan... It does not have to be that way.. Big hugs to you honey, cry and get it out of the way and let determination take its place.. I know you will.. You are strong.. You have the courage of many and you are but one..
Posted: Tuesday, July 25, 2017 12:09 PM
Joined: 12/4/2011
Posts: 21250

Dear alz+....I am so sorry that you watched that. Sad and angry that what you saw was not unusual. Good care, the care everyone deserves, is not readily available. There is little training   out there.

For some time I have wanted to post the idea that now is the time to do all that you can to be certain that you are well cared for. Get to your current caregiver the information they are going to need because there is no guarantee they will even know where to look for these educational tools. Information is the key for both the PWD and CG. Start your team effort now. 

You can also select where you want to go should placement be necessary. Select who you want to come in and help. You can even pick out what Hospice you would choose.

Please be your own advocate right now as much as you can because most of us caregivers know little to nothing until a shoe has dropped. It does not mean that they do not love you. It is just a lack of education.

There are several CG who read and post here who would be so willing to be help put together some info for you to share.

The encouraging note is that we are learning, individually and as a country, about this disease.  The sharing you all do here has an impact!

You are in our hearts.....


Posted: Tuesday, July 25, 2017 12:26 PM
Joined: 3/20/2015
Posts: 96

Dear Alz+,

Talking with your Priest I feel will be beneficial for you. I think if you look at it who among us is in control of various aspects of our lives at any given time. I think I read here most of us with Alzheimer's will pass of something else besides our Dementia. 

A good cry can be very cathartic. So indulge in what works. It won't be long till fall and you can get back to your nature walks and communing with all that nature is. Heat and humidity are draining on many levels. Here in Atlanta it's terrible now. 

We all have our days when the mere thought of our futures seem overwhelming. Having Alzheimer's exacerbates the problem for sure. But you have many things to help you and it occurs to me to tell you that you don't know who may enter your life and be just what and who you needed at the appointed time under Heaven. 

I'm glad you shared. Your such a treasure. Be kind and gentle with yourself.



Posted: Tuesday, July 25, 2017 1:33 PM
Joined: 3/3/2015
Posts: 58

My 66 year old husband has EO. Been 5 years now and he is on hospice care,
living on our small farm in the midwest.  Read a book called Ghost Boy
some years back about a young man with what appeared to be locked-in syndrome. 
Just because a thought can't be articulated does not mean it's not in the mind, unexpressed. 
 Huffington Post had an article on "terminal lucidity", clear thinking after
 no signs of cognition.  We are more then bricks and mortar.  
Your post was beautiful Alz, thank you for allowing us to be part of the sadness.

Posted: Wednesday, July 26, 2017 6:47 AM
Joined: 5/20/2014
Posts: 4408


Hugs, love and prayers to you dear friend!

I think you referred to those moments of clarity just before death in your prior posts? Now thanks to Krc we learn there is a term and even some research on this phenomena!

  1. Terminal Lucidity: Myth, Mystery or Miracle? - Neuroskeptic

    Aug 08, 2014 · Can sick people gain mental clarity just before they die? University of Virginia researchers Michael Nahm and Bruce Greyson explore this issue in a ...

  2. Terminal Lucidity, Clarity Before Dying - Crystalinks

    Terminal Lucidity. Clarity Before Dying. This common phenomenon involves a terminally ill person who suddenly appears to rally, or become conscious, talking to those ...

  3. Do Alzheimer's, Dementia Prove the Soul Doesn't Exist?

    Batthyany closed on a cautionary note. Terminal lucidity research is a very young field, and it would be premature to draw strong conclusions from the little data ...

  4. The Curious Case of Terminal Lucidity - Today I Found Out

    Characterized by a remarkable return of mental faculties and sometimes physical skills to terminalpatients who were thought to have lost such abilities, Terminal ...

Posted: Wednesday, July 26, 2017 11:56 AM
Joined: 2/24/2016
Posts: 1096

Alz+, I so understand how you feel.  I made the mistake of watching the same video on YouTube that you described not too long ago.  I also cried while watching and for hours after.   It made me feel so bad about my future that I decided not to watch anymore videos like that.  Unfortunately sometimes we don't know what videos have such messages until we watch. 

I do not believe for one minute that we are left an empty shell.  I know when I have my bad days, others will think I am not with them, but I am aware and just struggling to communicate and sometimes even understand what is going on, but the me that is always been me is still inside fighting to be heard and seen (is that a word?) well, you know what I am saying.

I don't like when others talk about someone as if they are not there.  It's not right and even nurses at the hospital are told to talk to patients in "comas" as if they are there because they realize now that they just don't know if the person can still hear or not.  So if it's done for persons in comas, why not for the PWD?  We are not in a coma.  We are still awake, so talk to us as if we can hear you and understand.  Touch us as if we can still feel your comforting touch.  Smile at us and be "with" us as you would any sick or dying person.  We are probably aware, but just can not respond to let you know. This is a fear of mine also.  To be where I can not respond to let others know what is wrong.  I have heard this before from others, but it is so true and so real.  How can we not fear this?  Anyone in this position would fear this.  No wonder there is so much anxiety.  My anxiety has increased so much lately and I believe it is from losing abilities and fighting constant confusion that I have to wade through like thick mud when it arrives.  To get clarity back is a relief, but the anxiety comes even more when I think, what if clarity does not come back next time.  That's normal, but not productive.  And not mentally healthy.  So I choose to live in the moment.  It's easier to do and it's reduces so much anxiety. 

I hope that you can live in the moment alz+.  I know you are usually good at that, but sometimes we lose our way.  Videos like the one you watched will do that to us.  Knock us down from living in the moment and throw us into the woes of the future.  There is so much beauty and peace living in the moment.  I believe that is where we, PWD need to be.  In the moment, where we need not think of the future that awaits us and where we need not struggle with remembering the past.  But, just taking each precious moment God gives us and drinking it up like it's the last drink we will ever take...

Love you all, BlueSkies

Posted: Wednesday, July 26, 2017 12:22 PM
Joined: 12/4/2011
Posts: 21250

I wish we could all be together holding one another ever so tightly
Posted: Saturday, July 29, 2017 3:32 AM
Joined: 9/12/2013
Posts: 3608

the Ghost Boy story! I just read about him - he had a condition arise which left him unable to speak or move for years. Then he began to recover and was eventually able to describe all he heard and understood while unconscious.

Terminal lucidity- thanks L lee. I am going to read through those links.


Hugs all around. Awareness, consciousness and brain activity are apparently not erasable. I won't go into this here but even "brain dead" is not. Learned this because of new information on harvesting organs and brain dead people flinching. Always glad to bring the weird and awful to the discussion.


the under rib pain had gotten as bad as in previous years but this time I just worked on it as if it were a blockage in my intestines and over 2 days cleared whatever it was! I used massage, magnesium, electrolytes, yoga postures, and stretching. I think it happens if I am dehydrated and inactive.


A memory: when my dad had ALZ he quit speaking around my mother and did not speak to me with words often but one day during a holiday dinner something happened that made me upset. I don't remember what it was, a usual event in that family. I left the table and went into the living room and sat on a couch and had tears running down my cheeks. My Dad came from the kitchen and sat by me and patted my hands. My Mother came out and said, "Well NOW what's wrong?!"

My Dad said, "Somebody was hurting her on the playground."

My Mother tuned him out and left me alone with my Dad. He comforted me and the way he phrased it was perfect.


Yes, about needing some spiritual guidance. Our bishop is coming this summer and I am first time ever asking for a chance to talk about end of life concerns. His aunt was a member of the church and she died this spring from ALZ. He spoke at her funeral about how it took him a day to figure out what he was experiencing around her as she was dying, he called it "paranormal phenomenon". He said he realized "everyone who loved her was being Love Bombed" by her and she smiled at everyone which made him think she had been aware all those years.

I will share what he says if permitted or useful.

Got my feet under me again. My cousin is coming at noon and I am up fooling around. Came here to check in, so glad I did.

Posted: Sunday, July 30, 2017 7:01 AM
Joined: 5/20/2014
Posts: 4408


Hope you had fun fooling around with your cousin. You need a break from all the work  on the house. I would have a hard time relaxing and clearing my mind until everything comes together. You are a spirit guide here on this board and a very spiritual and spirited person. Glad you got your feet up under you again. Love you much!

Posted: Sunday, July 30, 2017 9:07 AM
Joined: 12/2/2015
Posts: 1018

alz+, I challenge anyone who claims to know what us dementia folks know, understand, think, and feel as we move into the later stages. They don't really know who we remember, only that we can say the right name. Nobody knows any of this, just like they don't know for certain what happens to people after they die. I think I know what happens, but I know for sure that I don't know for sure. This is causes me great anxiety and fear. What will I know, understand, think and feel. Will I know and understand when those around me say how sad it is that poor old Bill doesn't know sh-- and can even take a sh-- without help. Oh, excuse the language, but that is how I feel a lot of the time, shitty. I working hard to not feel that way, and I do it much of the time, but then something happens to push me back, like slap in face. Alz+, just know that we have each other for as long as we have each other, which hopefully be a long time. It is sunny and cool here today, and I bet it is the same in lots of other places, and where it is cloudy and bad weather I know it will get better. Same for us. Take care. Bill.
Posted: Sunday, July 30, 2017 9:48 AM
Joined: 3/20/2015
Posts: 96

Dear Bill,

I totally get you on this. I too have some of the same thoughts.


Posted: Sunday, July 30, 2017 9:21 PM
Joined: 2/24/2016
Posts: 1096

I like that we can discuss our fears and anxieties here.  I know many say we should stay positive and I agree and i do most of the time, but there are days I think we all need to vent whether due to anger, frustration, fear or anxiety.  And this is the place I feel safe and comfortable doing that.  This is the only place that I know I will be truly understood.  Just like CG's have their boards where they can vent and there is no judgement and everyone understands what they are going through.  We need that too and I'm very grateful we all have this place to share and be here for each other.  

Wonderful thread!

Posted: Monday, July 31, 2017 8:57 AM
Joined: 5/20/2014
Posts: 4408

I'm with you Blue! This is no freaking rose garden that many of us are walking through. Maintaining the status quo of a happy, positive attitude all the time can also zap us of energy and cause us to bottle up our feelings. Sometimes we just have to give in to the pain, fear of the future and sense of loss that surfaces within us at any given time and feel free to express ourselves.  
Posted: Wednesday, August 2, 2017 12:06 PM
Joined: 9/12/2013
Posts: 3608

Bill - I love your colorful language. You play a curmudgeon here and we need that. I do think someone should inspire you to court your wife again. It is shocking to me that I did not get to fall down in a lump and not fawned over after the diagnosis. 

In fact, I battled husband, son and daughter, son's wife, my brother, sister and mother, (and that is who I remember) after being diagnosed. I tried to educate them, beg for sympathy, demand it, provide books, links, and blah blah blah. 

The day I understood this was going to  be up to me to get myself through this was an eye opener. When we invent ways to get through life it will benefit everyone in future which is no small comfort, but it is not here and now comfort.

I have tried courting my husband. First I learned to smile at him when he came home, or in morning. I would bring him wildflowers from my walks with the dog. I would change the bedding, bring him a snack, hug him. No one told me I would need to put out energy towards making others comfortable.

I cut off the ones who bit back (mother, sister, brother). I just had a rage show of 14 hours with Keeper. we had to travel to get a license renewed, the car ride hammered my back, there was commotion the morning we left, ... was over tired, grumpy from an ativan, ended up in walk in clinic today with another UTI so that must have added to my grumpiness.

I did wake up last night laughing so hard I almost wet the bed. Had inspiration nickname for Keeper come to me, "Old Yeller" and am still laughing about it. I have not called him that yet as he is out getting me antibiotics and I don't want to fight at all. Besides my humor is not funny to 90% of people I ever met. ha! 


L lee and Blue - when the cheerfulness is outweighed by despair, fear, anxiety we sometimes breakdown. Like a boxing match with the Pleroma. (Youtube topic on the Gnostic view of universe and life forms...insomnia education materials).

Do I carry the shame of having battled husband over every thing he did for 12 hours? Not any more than he seems concerned about fighting back. It happened, again, it is over, again, now the UTI need fixing. Not even the dog was impressed with  car shouting escapade.

even though no one really finds me funny except ex-husband, I have been finding my thoughts very funny again. It feels good.

Posted: Thursday, August 3, 2017 7:09 AM
Joined: 5/20/2014
Posts: 4408

I find you to be funny and witty allthe timeAlz+. Even when your down for the count or not feeling well you still maintain your wit and humor. I thinkhaving a sense of humor is HUGELY important to our survival also...even if somejust don'tget thepunchline. 
Posted: Thursday, August 3, 2017 7:13 AM
Joined: 5/20/2014
Posts: 4408

I guess I stated the obvious given my funny stupid quotes thread. Spirit and humor! I do notthink God wants us tobe boring.
Posted: Thursday, August 3, 2017 8:12 AM
Joined: 9/12/2013
Posts: 3608

Llee - so you are the one who gets my humor?


Iris L.
Posted: Thursday, August 3, 2017 6:34 PM
Joined: 12/15/2011
Posts: 18520

Ilee, I agree--God does not want us to be boring!  Whoo whoo!

Iris L.