Very late stage seven -no recognition

Crushed

DW is late stage 7 She can walk and swallow and that is about it.  She does not react to verbal commands.  You  put a spoon on her lips and she opens her mouth.  Take her by the hand and she gets up etc.  She is 69.  She does walk "around" people.  No longer tries to open doors. 
She has no idea who I am   

 
Anyone else in this situation? 

Michael Ellenbogen

This disease is so sad and I am so sorry. Please keep in mind that all because you place a spoon at her mouth and she opens doit does not mean she wants to eat. They are just old reflexes that still work.

Lills

Yes, Crushed.  My DH has no idea who I am.  He does have two Beanie Babies and is 'attached' to them; of course, he likes the softness of the material! Bedbound, non-verbal & still eating, albeit only Gerber-type foods.  

DH is 70 (I'm 69).  One month at a time and one day at a time.  Each time a new month begins, I marvel that he's still here.  

Doityourselfer

My 62 yr old husband knows who I am about 50% of the time,  doesn't remember my name.  He walks very slowly and can feed himself most of the time.  I have to hold his water bottle or cup for him to drink.  Is ready for bed between 3:00pm-4:00pm and stays in bed for many hours.  He doesn't know how to open a door.  He has become homebound, hasn't left our house since March.  

His doctor (GP) comes to our house to check on him and his neurologist talks to me on the phone every 6 months.   His GP thinks he has 1 to 2 years left.

Crushed

Michael Ellenbogen wrote:

This disease is so sad and I am so sorry. Please keep in mind that all because you place a spoon at her mouth and she opens it does not mean she wants to eat. They are just old reflexes that still work.

Yes I'm well aware.  I include that in the definition of "swallowing"   As opposed to feed herself.   She moves towards the spoon to get the food.  she can move it around in her mouth and chew it. (brownie chunks etc.)  half inch cubes

Laurention

Crushed....I'm sorry DW has reached that stage... My DW was in that stage about a year ago . However she was not amblatory , and had lost the ability to stand up.

I  do remember the "spoon to the mouth" thing, you mentioned.... DW struggled with swallowing though with the help of very caring staff she managed to hang on till Christmas .. Her weight loss was dramatic... I took solace in the knowledge that DW was suffering no pain, and didn't have a clue what was happening.

I lost her January 8, this year..  I miss her everyday.

   Mike 

LadyTexan

I am sorry Crushed. 

No, we are not there yet. 

I am seeing declines in DH. For example, DH eats with his fingers almost always, except for soup and oatmeal and ice cream. Lately when I hand him his cup of water to take his meds, he is bringing his lips to the cup, instead of reaching for it with his hand. It seems like the instinct of a baby to a bottle.

I hate this disease. 

Paris20

Crushed—I am so sorry that you’re going through the devastation of this miserable disease. As others have noted, my LO is not yet at that stage but I know what’s ahead. My father died of gastric cancer 25 years ago. It was horrific, but it went on for only four months. At the time, I thought nothing could be worse. I was wrong.

jfkoc

someone just posted this book

  Ambiguous Loss: Learning to Live With Unresolved Grief...

you probably already know about it though

Rennbird

My heart goes out to you.  She could not have a more loving and attentive husband.  When my husband took his final breath, my sense of relief was enormous.  I miss him. I miss the routine of visiting him.  I miss his physical presence but I do not miss watching him suffer.  I am now going through his things.  I am shredding our life together.  He was a career Naval Officer and spent the last three months of his life in a VA approved facility, which will remain nameless.  He started to die the first night he was there.  He fell and no one called me.  I was sickened by the quality of the facility.  He spent his days in a windowless room with CNN on the television.  I was appalled.  It was during those three months that I learned how hollow the words, “Thank you for your service.” really are.  This disease is so horrific that I am not sure our society can meet the needs of the victims.  The only way I could survive was when I realized that I was living out the Stations of the Cross.  Ultimately,  I won as I was with my husband when he died.  I pray that you have that same opportunity.

Crushed

Rennbird wrote:

He was a career Naval Officer and spent the last three months of his life in a VA approved facility, which will remain nameless.

My wife was a a career VA doctor.  By " VA approved facility " I assume you mean some kind of nursing or rehab center.  

Whatever it was let me urge you to complain write your congress person  or the VA inspector general. My parents were both naval officers. The VA medical folks are fantastic. Some of the administrator types are, shall we say,

#$%%%$%%T$##&UU&^^%%^^%     (expletive deleted)

 

John1965

I've not experienced this with DW ... yet. I'm so sorry that you are going though this, all of this, for the past decade.

I grew up watching my dad die after spending his last several years in a VA hospital.  A WWII vet, he was 50 when I was born, the the last of his 8 kids.  He didn't have AD, but some other undiagnosed neurological disorder (potentially lead poisoning from his exposure during the war and throughout his plumbing career) exasperated by a stroke a year after being admitted to the VA facility. Between the ages of 7 and 12, we visited him about every month, as the VA hospital was a three hour drive away. His last six years were spent with his left side completely paralyzed, unable to walk and confined to a chair. He was fed through a tube in his nose. He communicated by squeezing our hands. He weighed about 90 pounds when he finally died from aspirating is own bodily fluids. That was two months before my 13th birthday. Everyone was so happy that his suffering finally ended. I've cried only because I never go to know him on my own, only through family folklore and my siblings' stories. 

So, not as a spouse, but as a young son, I've shared a similar situation. I wonder why I was chosen to see this early in my life with my dad and again now with my DW. 

From Dear Evan Hansen:

Even when the dark comes crashin' through
When you need someone to carry you
When you're broken on the ground
You will be found!
So when the sun comes streaming in
'Cause you'll reach up and you'll rise again
If you only look around
You will be found
You will be found
You will be found

You will be found!

Rennbird

Crushed wrote:

Rennbird wrote:

He was a career Naval Officer and spent the last three months of his life in a VA approved facility, which will remain nameless.

My wife was a a career VA doctor.  By " VA approved facility " I assume you mean some kind of nursing or rehab center.  

Whatever it was let me urge you to complain write your congress person  or the VA inspector general. My parents were both naval officers. The VA medical folks are fantastic. Some of the administrator types are, shall we say,

#$%%%$%%T$##&UU&^^%%^^%     (expletive deleted)

I tried to ask for help from Senator Warner’s office but I believe my case was given to a college intern.  It is a long story.  I received no help.  I suppose I can be grateful that he died three months after arriving at the facility on December 7, 2019, Pearl Harbor Day.  He was buried with full military honors at Arlington just three days before the COVID shutdown.   

Crushed

Rennbird wrote:

I tried to ask for help from Senator Warner’s office but I believe my case was given to a college intern.  It is a long story.  I received no help.  I suppose I can be grateful that he died three months after arriving at the facility on December 7, 2019, Pearl Harbor Day.  He was buried with full military honors at Arlington just three days before the COVID shutdown.   

 

My parents are also buried in Arlington.  At my father's funeral I went up to the Petty officer ,

stood at my best civilian imitation of attention and said "It was Commander Crush's last request that I stand the burial party to a drink"  I stuck out my hand with the money.  Just like in Officer and a Gentleman  he took the money put it in his belt, gave the casket  a magnificent salute and said "I assure you sir,  the Commander's wishes will be carried out" 

Seasons In The Sun

  Yes Crushed , I too am in a similar situation, DW is also late stage 7, Hasn't been able to walk for over three years. In MC for two years now. Lost a lot of weight. On pureed food , cant stand , cant talk, stares into space with occasional eye movement. Nursing staff is amazed she has survived this long in MC.  She is alive but not living. I feed her lunch five days a week. ( take two days a week for me ) She is 73 & we have been married for 53 years. Not how I thought retirement would be. I was her sole care giver 24/7 for 5 1/2 years before MC. Overall its been 12 year struggle. 

   Over all I had it easy. DW never gave me a hard time at all. None of the issues many others have had. She new things weren't right . Hard to see the key board , my eyes are filling up as I type. Enough said. So sorry for all of us on this journey.

Best to all.

Rennbird

Very nice story Crushed.  I hope you have peace.

ElaineD

I never cry.....and I am in tears....for your LOWD, for you the Caretakers, and for the power of your words.

ElaineD