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Question about end-stage...
rnacrowell
Posted: Tuesday, May 13, 2014 5:03 PM
Joined: 12/24/2013
Posts: 187


My husband is 67.  He's been under Hospice care for a year-and-a-half and is now in Stage 7e or f, I think.  He's mute, unable to stand and walk, beginning to have trouble swallowing, and just recently lost most (but not all) of his smile.

 

The nurse-practitioner who came today mentioned knowing someone who's family member or friend had been in a facility with end-stage Alzheimers in a fetal position, completely unresponsive, for five years before death! 

 

I was shocked to learn that someone could live that long in such a state, and I'm afraid for my husband.  He's relatively young and had/has no health problems whatsoever.  His heart and lungs continue to be strong.

 

I wish I'd asked the nurse whether or not any feeding tubes were being used to keep that poor soul alive, and I'm hoping that that was the case.  My understanding is that, once someone could no longer eat or drink, death would follow in weeks, not years!  

 

For any of you who have experience in this situation, I'd appreciate the input. 

 


Stellar Daughter-In-Law
Posted: Wednesday, May 14, 2014 1:51 PM
Joined: 12/21/2011
Posts: 280


Sorry that the nurse planted such horrible images in your head.  Though, they are a slice of reality.  My loved one lived in a nursing home with people who were all curled up and unresponsive yet they could open their mouths to eat pureed food or sip on a straw.  The response was automatic.  Almost like when you put a spoon to a baby's mouth and they open up and swallow.

 

My father in law was in his late 60s when he was diagnosed Alzheimers.  He was an incredibly physically fit man.  6'4, lean and strong.  We so feared him living on for years or a decade in this semi-vegetative state you described.  And we often wondered what it would be that would actually be the cause of his death.

 

He suddenly started declining.  Swallowing became a bit more challenging.  Walking became very hard.  Speech rapidly declined.  Then one morning he woke up with something that looked like a stroke but was not, as he could go in and out of it.  His left side drooped and he was non-responsive.  Then he would come out of it for half an hour and look normal.  It was three weeks later that he died. We still don't know what the actual event was that caused this change or that caused his death.

 

 He was on hospice for nine months prior to his death.  We did not do any feeding or hydration.  When he no longer wanted food or drink, we did not push it.  We always offered but did not force.  Though intake tappered down slowly, it took about 6 days with zero food or water until he died.  It was a peaceful death.  And although we miss him so much and he was only 74 when he died, we are extremely grateful that our fears did not come true and he was not in a fetal position today unable to communicate or respond. 

 

I hope this helped some.  Nobody, especially hospice nurses, tells the stories about easier deaths or the people who slip away for reasons undetectable, but it does happen.  To an outsider the experience I wrote above might sound traumatic, but his process of dying was far, far less traumatic than his time alive with Alzheimers and trying to manage the disease. 

 

I'm wishing you all the best as things move forward. 



dj okay
Posted: Wednesday, May 14, 2014 2:29 PM
Joined: 11/29/2011
Posts: 1840


I don't know if there is any hard and fast rule regarding how long someone can stay in any given stage of this disease.  Each individual is unique in their overall health (other than dementia) as well as how this disease affects their own brain.  So some will lose their ability to walk early in their disease while others lose the ability to speak early on.

 

The fact that your husband is already having trouble swallowing may be your biggest clue.  If you have both decided against artificial feeding or hydration methods, his ability to ingest food and liquid will likely bring about his final decline.  But even this process can take months or years.  I think you would have a hard time getting even the hospice personnel, including nurses and doctors, to be more specific in their time estimate.  The fact is, no one really knows for sure.

 

My mother was definitely stage 7 when she passed and she was 85.  She was diagnosed 7 years earlier.  But she was still able to sit nearly upright on her own in a wheelchair and was able to smile.  On a good day, she may be able to get out a 5 or 6 word sentence that was understandable.  Most days, she struggled with yes and no and often her response was not an appropriate answer to the question.  She had been on a mechanically altered diet for several months before she died and her liquids had to be thickened so she didn't choke.  A week before she passed, she developed two serious conditions, one after the other, that made her a hospice patient.  She wasn't able to eat or drink for several days before she died.  Her passing was very peaceful.

 

A younger patient may be able to hang on for longer.  I don't know.  Your best action right now would be to have a detailed discussion of his status with the doctor in charge.  But I wouldn't expect him/her to give you any definitive timeline.  It might make you feel better though.


rnacrowell
Posted: Wednesday, May 14, 2014 3:12 PM
Joined: 12/24/2013
Posts: 187


Thank you Stellar and DJ... 

 

Thank you for responding.  I talked to my husband's regular nurse/case manager today and mentioned what I had heard, and she told me that the other nurse was no doubt speaking of a patient who was either still willing and able to eat, despite being in a fetal position, or being fed with a nasogastric or PEG tube or both.      

 

She reassured me that, when my husband does not want to or is no longer able to eat or drink, he won't linger for months or years. 

 

His quality of life is fairly negligible now, but he does still follow me with his eyes and smile a half-a-smile, and although I couldn't say he actually enjoys whatever I feed him, he doesn't refuse food or liquids yet. 

 

It would just seem so cruel if, when he no longer has even that little quality of life left, his body would keep on living for months and years.  That was my biggest fear for him. 


CyndiR
Posted: Wednesday, May 14, 2014 5:19 PM
Joined: 6/20/2013
Posts: 311


My dad qualified for hospice due to liver failure, but we could see he was heading for the final decline.  when he went into hospice, he was stage 6E.  Within days, he developed a nasty cold.  He was really sick for about a week, and never fully recovered, never walked again, and suffered a stroke that would have normally been considered slight, but it just took the rest of his spunk and spirit with him.  Within 3 weeks he went from soft foods to pureed foods, rallied for one day, then became bed ridden and could no longer take food or liquids.  On his last day, he ate nothing and choked on all fluids.

 

My grandfather, on the other hand, went into stage 7 and stayed there for about 3 months before passing.  My mom went every day to make sure he had dinner, except the night he passed away.  she never forgave herself for that.

 

 It's different for each person.  And just as hard on all family members no matter how it plays out.


Babs Willis
Posted: Wednesday, June 11, 2014 10:19 PM
Joined: 1/21/2012
Posts: 157


My husband was only 69 when he passed in April. He declined from walking and feeding himself to bedridden and being spoon fed within a matter of weeks. We opted for home hospice care and allowed him to choose the course of treatment and nourishment. He chose to not eat when swallowing became difficult and lasted a little more than a week.  Every person is different. Hugs to you.

Barbara


Jim Cox 29
Posted: Monday, June 23, 2014 8:19 AM
Joined: 6/6/2013
Posts: 36


I had my wife on Hospice for nearly a year. She was only 60 but was dianosed with early onset ALZ. When she started having trouble swallowing, our Hospice nurse told me to prepare myself for the end. She was healthy except for the severe dementia. The end came in a matter of weeks. We fed her a liquid diet until she started to inbibe it. (I hope that is the right word) She got sick, very quickly after that. They gave her morhine at the end and she slept for two days, then passed peacefully.

 

Giving up and allowing the nurse to give her the morphine was very hard for me. But I knew Georgia wouldn't have wanted to spend months in a home being tube fed. It was the only other option and I was able to keep her home and take care of her until the end. There was no suffering.

 

Good luck, I will be praying for you.

 

Jim


rnacrowell
Posted: Tuesday, June 24, 2014 9:41 AM
Joined: 12/24/2013
Posts: 187


Thank you all for your replies.

 

My husband died on June 14, a month and a couple of days after my post.

 

During that month, he began to eat and drink less and less, and it was obvious that, even though I switched to supplemented milkshakes;  yogurt; applesauce; and thick, pureed soups, etc., eventually he really didn't even want that.  He would simply bite on the straw in drinks and hold the food in his mouth, sometimes all night. 

 

Finally, he began to develop what sounded like chest congestion and a high fever, and, for the first time, it looked as though he might be in some discomfort when he wasn't sleeping, which, by then, was most of a 24-hour day.  I put in an emergency call to Hospice.  They immediately came and told me that his body was shutting down and showed signs of imminent death, i.e., the high fever, mottling of his skin, congested lungs, etc., and began him on morphine to help with his breathing and any discomfort, Ativan for any anxiety, and something to clear his lungs.  

 

He appeared to be comfortable from there on out and died eight days later.

 

I wanted to post this in case the information might help anyone else who's going through this final stage. 

 

Adrienne


KML
Posted: Tuesday, June 24, 2014 10:38 AM
Joined: 11/30/2011
Posts: 2105


macrowell:

 

I am so sorry for the loss of your husband.  I'm happy that he was comfortable and that he now has peace and no more suffering.  You gave him such loving care, I can tell from your posts.  I wish you peace and comfort.  The journey of grief and adjustment after the loss of a loved ibw can be difficult, but necessary and I hope you have family and friends who care and love you and will support you.

 

All of us here understand and I hope you will come back when you feel the need.  There's always someone here to listen and to offer comfort and support.  Take care of yourself and be gentle with yourself.


ripley614
Posted: Monday, June 30, 2014 7:58 AM
Joined: 6/26/2014
Posts: 3


My dad always told me "Hope for the best but prepare for the worst".
He had been on hospice for 9 months and with his decline, we had THE talk a few times.  2 days before he passed (not alz), we had THE talk one last time.  The conversation started out with him worrying about his kids, whether he was going to Heaven or Hell, was he going to be in pain or just go into a deep sleep...My part of the conversation was this: " Dad, you have lived a good and long life.  When the time comes, you need not worry about us kids, we will get through it.  We will not allow the pain to consume you.  Everything will OK.".  He needed that reassurance.  When he became unresponsive we told him that if he was ready then we were too.  Sometimes, despite how much we want them to hold on, they need to know that it's ok.
That is my end stage, end of life experience.

MLB61
Posted: Thursday, July 3, 2014 6:59 AM
Joined: 12/2/2011
Posts: 726


Dear Adrienne -- I am so sorry to hear of the loss of your husband.  He was very lucky to have you with him for this long journey.  Please be gentle with yourself.  Give yourself time to grieve.  With heartfelt condolences and hugs...
Janabanana
Posted: Sunday, July 6, 2014 9:33 PM
Joined: 11/16/2013
Posts: 37


I SEE THE STAGES AS 6 E AND 6F.  WHERE DO THESE STAGE NUMBERS COME FROM?  I HAD NEVER SEEN THE ALPHA AFTER THE NUMBER.

Janabanana
Posted: Sunday, July 6, 2014 9:45 PM
Joined: 11/16/2013
Posts: 37


YOUR POSTS WERE VERY HELPFUL.  MY HUSBAND IS 84; ON HIS BIRTHDAY IN MAY, WE HAD A CAKE AND COMPANY AND PICTURES.
IN THE LAST 4-6 WEEKS, HE HAS DECLINED GREATLY.  HE IS SHUFFLING HIS STEPS, STOOPING AND SHOWING SIGNS OF EVIDENT DECLINE.
HE IS HILLUCINATING AND SEES IMAGES NOT THERE AND PEOPLE IN THE HOUSE.  HIS BLOOD PRESSURE IS ALWAYS GOOD, HE IS JUST SO CONFUSED AND CAN'T EVEN FIND THE BATHROOM IS OUR HOME, AND WE HAVE LIVED HERE 14 YEARS.
WE GO TO THE DR. FOR A UTI CHECK.  HOPEFULLY SOME OF THIS IS FROM A URINARY TRACT INFECTION.  BUT I FEEL LIKE SINCE HE WAS DIAGNOSED SO LATE IN LIFE, AT 82, (PRIOR HAD WORKED UNTIL 76, AND COULD WORK CIRCLES AROUND ME)
I AM 12 YEARS HIS JUNIOR AND IS GRIEVES ME TO SEE A WONDERFUL, KIND MAN LIKE HIM HAVE TO SUFFER THIS WAY.  AS WE WATCHED THE ASTROS PLAY TODAY, HE WANTED TO GO OUT IN THE YARD AND SEE THE TEAM, AND SAID HE COULD HELP THEM WITH THE TEAM, AND EVEN ASKED OUR SON ON THE TEAM, IF HE WASN'T A GOOD HITTER.  OUR SON WAS SO KIND, AND SAID DAD, YOU WERE THE BEST, I REMEMBER HOW HARD YOU COULD HIT THAT BALL.  HE WAS DELIGHTED HIS SON REMEMBERED....
WHAT A STRANGE, STRANGE DISEASE.  OUR DR. THINKS MEDICINE HAS KEPT THE BODY LIVING LONGER, AND IT OUTLIVES THE MIND IN SOME INSTANCES, PERHAPS SO.
WE ARE IN FOR A LONG RIDE, I AM AFRAID.  AT 3:00 A.M. HE WAS FULLY CLOTHED, "READY TO GO TO WORK".....

WendyD
Posted: Friday, August 15, 2014 12:46 PM
Joined: 10/9/2012
Posts: 20


Hello:

I'm so sad to hear your husband is so relatively young with this. My mother has been in end stage for over three years now. She lost her ability to walk four years ago, and stopped speaking 2 years ago. She is very far gone, but still alive. It is a very difficult stage to go through and the not knowing where it will end. I just keep praying because this is one of those things that I do not understood in God's plans and I can only pray for her suffering to end soon. Peace with you,

Wendy


WendyD
Posted: Friday, August 15, 2014 12:52 PM
Joined: 10/9/2012
Posts: 20


Oh, I am sorry, I didn't read through the end. Thank you so much for sharing with us that your husband did die. I am very sorry for your loss, but hearing the final days for me was comforting, knowledge does seem to give some sense of calm. My best wishes to your healing and may you be at peace knowing he is delivered from his suffering!

Regards,

Wendy


ederoos
Posted: Sunday, May 27, 2018 2:11 AM
Joined: 5/27/2018
Posts: 1


My first post here. My step father is currently late stage 7 AD and got there very quickly after in home hospice care was provided for severe terminal agitation. My mother and I are shocked to now see him reach exactly 10 days without food or any liquids. Death rattle started several days ago and he continues to hang to life. This is incredibly traumatizing as he is in a vegetative state but has opened eyelids several times the last few days when his body is shifted by us for comfort. Can someone reply stating his possible level of awareness, if any at this point. I’ve not read anything online that describes life continuing this long without any liquids or food.
George K
Posted: Sunday, May 27, 2018 5:16 AM
Joined: 12/16/2011
Posts: 2818


ederoos, I can't address the level of awareness.  My wife didn't show any apparent consciousness on her outside, but I don't know what her insides were like.  She lasted nine days after she quit drinking and eating; the hospice nurse said that was about average length for that situation.  It's a horrible, horrible disease and I wish you peace of mind and peace of heart.
dolor
Posted: Sunday, May 27, 2018 12:37 PM
Joined: 11/9/2017
Posts: 306


Ederoos, 

I'm so sorry for what your family is going through. 

The level of awareness may be intertwined with the medications hospice is giving. All I can say is do not underestimate it. 

I would suggest talking to him, telling him he is loved and cared for, stroking his head and back, holding his hand. 

My mother lingered on for a very long time with no food or liquid. The day she passed her eyelids opened a bit and her blood pressure dropped. 

I am wishing you all as much peace as is possible in the midst of turmoil.