Anyone else dealing with total loss of conscious thought?

Crushed

DW can walk and swallow food if you put it in her mouth.  That's it.  

She does not respond to voice commands or instructions.

 She will walk around an obstruction that she actually sees

She is compliant with ADLS (dressing shower toilet but has no interaction)

She is 69 and otherwise in good health

Anyone else at this stage?

Quilting brings calm

Crushed- no I do not have a loved one at this stage. Although it’s possible my last  memory of  my grandmother would  have been at this stage. She’s been gone for over 20 years, and I remember spoon feeding her at the nursing home. My aunt was her primary caregiver though as she lived next door.  

  I just have a question. When you say compliant with ADLs, do you means  passively allows someone to do it for her?  You do not mean that she actually does them herself, correct?  Do the professionals give you any guidance as to future timeframes or are you just left to wonder? 

Beachfan

DH can walk and kinda’ sorta’ self -feed  (plate guard, plate secure from slipping, spork, food constantly rearranged, last bits fed to him, finger foods placed in hand).  He will respond to voice commands or instructions if paired with physical prompts - - stand up, come with me, sit down.  He bumps into things, has walked into walls, but can pick up tiny objects on the ground.  Seems to be compliant with ADL’s (MCF put him in Depends within 2 days of admission - - I could maintain his continence at home with hawk eye surveillance).  Otherwise, very physically healthy at 78.   A new occurrence, since MCF admittance, is “falling out of bed.”  I think he tries to get up to use the bathroom and gets tangled in the sheets or gets confused and sits down on the floor.  Not a crash bang fall, no injuries, just discovered sitting on the floor during hourly checks several times.   (PT has been ordered- - not sure what they hope to accomplish. Eval was yesterday.)

I am trying to let go of my worry that someone is not hovering over him at all times.  He is clean, well fed, and well cared for.  It’s hard at only 2 1/2 weeks in.  

Doityourselfer

My husband can still walk from one room to another but I have to lead him otherwise he will walk into a wall.  I have to lead him to the couch and his bed.

I now feed him all his meals.  He can hold an apple but loses his grip when he's halfway done.  He has eaten the apple core a couple times.  He cannot pick up anything.

When it comes time to change his depends in a standing position, he can still lift his legs but I have to repeatedly tell him what to do.  Not always an easy task.

His speech is mostly gibberish.  He's 63 and has no other health issues.

abc123

Crushed, I'm sorry for you and her.

Marta

Our loved ones may well have conscious thought; however, we may be unable to see manifestation of such thoughts, as the connection between mind and body has been lost. 

I hope I am wrong about that. I cannot imagine the mental suffering that would come with such a syndrome of being “locked in.”

DrinaJGB

My DH was comatose for weeks and on life support from the encephalitis. When they started weaning him off the ventilator I was sitting next to his bed with a pad and pencil. I told him where he was and that he was safe. I gave him the pad and pencil and said he could write if he wanted to.

  He wrote one word---help.

I will never forget that as long as I live.

Marie58

DH is 65. Other than dementia, he's in good health. He's not walking as of 19 days ago.  We tried a Hoyer lift twice and it really, really scared him, so was that a conscious thought?? We decided not to use it again so he's most likely bedbound for the rest of his life. Sometimes I can put something in his hand and he'll eat it, but it can't be too much or he'll stuff it all in rather than taking a bite. He is spoon fed and drinks with a straw. Sometimes he'll hold the cup himself. He hasn't spoken for over a year. He lets the caregivers change him, give him bed baths etc. He doesn't roll over on his own so they physically roll him to change him. He gets repositioned every hour to prevent bed sores.

Beachfan, I felt exactly like you do after placement. I watched over my DH 24/7 when he was home. He also fell out of bed as you described when he first moved in to MC.

June45

Oh Marie, I am so sorry. This must be torture watching your husband go through this.

sandwichone123

My grandmother was about there. She stopped being able to recognize us, then stopped being able to recognize that there was something (my dad and me) there at all, even moving fingers in front of her face.

We consider the best caregiver she had in all her time with Alz was the one that told us we could make an order for "no antibiotics." That way the next time she got pneumonia, her body could go, and she could be at peace. "She" had been gone for years.

Crushed

She is compliant with ADLS (dressing shower toilet but has no interaction)

 She in no way fights or complains or or is oppositional She has no obvious awareness of what she is doing. Sitting on the toilet sometimes she goes sometimes not.

  

extex

I think my wife and yours are roughly about in the same general progression of the disease.  My wife can pick up a spoon or fork and place food in her mouth.  It must be cut up or arranged in a fashion that is easy to pick up.  There is always food scattered all around when she finishes.

My helper puts her in the shower three times a week and my wife does most of the showering from a sitting position.  She can brush her teeth but everything must be prepared for her.  She cannot select clothing or dress herself.

My wife also sits on the stool many times each day.  Sometimes results, sometimes not.

She is not loosing any weight and is able to walk in a shuffle.  Those seem to be the two things that the medical people use to gauge those nearing the end.

This disease sucks!

Crushed

FWIW people in comas and similar do not necessarily have any irreversible brain damage of the type typical in advanced Alzheimer's

Persistent but reversible coma in encephalitis

Neurocrit Care 2005  

 

 

  

elainechem

I honestly don't think that my husband reached this point until just a couple of days before his death last year. Prior to that, he was clearly confused and hallucinating, but there was still some consciousness apparent.

Crushed

Army_Vet60 wrote:

Crushed wrote:

DW can walk and swallow food if you put it in her mouth.  That's it.  

She does not respond to voice commands or instructions.

 She will walk around an obstruction that she actually sees

She is compliant with ADLS (dressing shower toilet but has no interaction)

She is 69 and otherwise in good health

Anyone else at this stage?

Have you spoken to her Neurologist?

She may have conscious thoughts but has lost the ability to react or respond. If she is dressing and using the toilet, there is a conscious thought process letting her know those actions are needed.

I think your question should be directed to her Neurologist for an informed explanation of what is happening to your wife.

If she has to be fed because she doesn't know to use a utensil or even her hands, that's a different concern because she has lost a motor skill. If the disease has spread to the motor center, that is stage 7. If she's being fed solid food, she needs to be monitored for any difficulties in swallowing that appear. 

 

Let me be clearer
she does nothing of her own volition except walk
She does not object to being dressed , it's like dressing a doll

I have the good fortune to have access to top medical care. She does not see a neurologist since they said candidly they could do nothing .  The tell me that the idea of  "functioning brain " with poor communication is a myth.   Alzheimer's destroys the entire brain starting with cognitive function but finally getting stopping even involuntary action

From NIH center on aging  
 https://www.nia.nih.gov/health/what-happens-brain-alzheimers-disease

How Does Alzheimer’s Disease Affect the Brain?

The brain typically shrinks to some degree in healthy aging but, surprisingly, does not lose neurons in large numbers. In Alzheimer’s disease, however, damage is widespread, as many neurons stop functioning, lose connections with other neurons, and die. Alzheimer’s disrupts processes vital to neurons and their networks, including communication, metabolism, and repair.

At first, Alzheimer’s disease typically destroys neurons and their connections in parts of the brain involved in memory, including the entorhinal cortex and hippocampus. It later affects areas in the cerebral cortex responsible for language, reasoning, and social behavior. Eventually, many other areas of the brain are damaged. Over time, a person with Alzheimer’s gradually loses his or her ability to live and function independently. Ultimately, the disease is fatal.

Loss of Neuronal Connections and Cell Death

In Alzheimer’s disease, as neurons are injured and die throughout the brain, connections between networks of neurons may break down, and many brain regions begin to shrink. By the final stages of Alzheimer’s, this process—called brain atrophy—is widespread, causing significant loss of brain volume.

  
  

Laurention

Crushed...My wife (EOAD) was at that stage 15 -18 months before she passed. In my experinece stage 7 EOAD is the worst, and the longest . 

My heart goes out you man ..Yesterday marked our baby daughter's 46 th birthday. I went out to DW's  grave, and standing in the cold  cried like a baby.

I firmly believe that right up until the last few hours..My wife knew my voice.

Cherish your time together .

Mike

DrinaJGB

Crushed---

 Regarding the coma of my DH--

 it was a result of multiple organ failure from a delay in proper diagnosis of an invasive and rapidly fulminating and necrotizing virus that decimated my DH's brain to the point of near death.

  He was not only comatose, but on LIFE SUPPORT, and the MRI showed significant brain damage mostly in bilateral temporal, partial frontal and limbic system structures.

  Now the MRI shows significant encephalomalacia scarring.

Now he has been diagnosed with mixed dementia---12 years after the viral attack that was misdiagnosed during the most optimum window for anti viral administration.

You don't know what you don't know until you know it.

Rennbird

When I think of the cross on Good Friday, I think of Alzheimer’s Disease.

Seasons In The Sun

yes Crushed I  too am dealing with similar situation. Dw is 73 ,has been in a wheel chair for almost four years.no adl's for the past five years. Cant talk or feed herself . Mumbles sometimes . Has been on Hospice care for three years now. In mc for two plus years. Incontinent for 3 1/2 years. Stares at the ceiling a lot. I to feel your pain as well as my own. Married for 53 years and this is what it comes to. People ask how is she doing ? I just say  she is alive but not living. some how some way we will get through this. It just sucks.

Best to you and all here on this rotten journey.

Rescue mom

This (crushed LO) sounds very much like my mother in her final years. Swallow and walk, that’s it. Except mom could say 3-4 words at random, not making any sense, except an occasional hello for a time. But not  even that the last 2-3 years.

 She did not know who she or anyone was, did not know where she was,  remembered no one, no place, etc. could not dress, not toilet, not respond to questions or comments. None of that, but did not fight assistance.

She could chew a little, and swallow if fed. And she also could use a walker, up and down halls. Doctors said her “physical” health was amazing, they wished younger patients were so “healthy.” 

She lived over 100, about five years of no conscious thought, knowing nothing. People said how great your mom is 100. All I could think was, what’s so great? She has no conscious thought, cannot do anything, not remember or talk….I would not call that a good way to live.