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How much time to expect
mawvkysc
Posted: Thursday, December 7, 2017 3:05 PM
Joined: 1/3/2013
Posts: 50


 I just asked a poster a question. But upon thinking about it maybe I should start it as a new question. 

 My FIL has VD. Diagnosed 10 yrs now. He had a massive bleeding stroke yesterday. He is on morphine and Ativan. He hasn't eaten or drank for 36 hours. He seems comfortable. Obviously no one knows how long it will be.  But it seems some people last much longer than expected without water. Does anyone have any input or experience? My MIL would like to keep him at the hospital it. But if it will be an extended amount of time she would like to take him home. More for the families comfort than his. He isn't aware of his surroundings. Thanks


kellly
Posted: Thursday, December 7, 2017 3:32 PM
Joined: 6/12/2015
Posts: 415


If it was me, I would contact Hospice care and get them involved. They can help you deal with his illness and have a lot of experience in helping people feel more comfortable in stressful times, both the person with the illness and the loved ones, so they would help him and you.

{{hugs}}


feudman
Posted: Thursday, December 7, 2017 3:47 PM
Joined: 6/5/2014
Posts: 923


I second bringing Hospice on board. And the answer to your question depends on whether you ask Hospice or the medical community (according to Hospice, they can last a week or more without fluids). My wife has stopped eating and drinking twice now. Both times for 3 days.
Goodtogo
Posted: Thursday, December 7, 2017 4:08 PM
Joined: 11/27/2017
Posts: 4


Based on the medicines he is on, sounds like hospices is already involved.  My mom passed about three weeks ago, and had pretty much stopped eating and drinking for about 1 1/2 weeks, only a few sips of water or bites of food.  Everyone's final journey is different.  
Would you MIL be able to provide the 24/7 care needed.  Hospices does provide some support at home. I recommend having the discussion with hospices and consider having extra help for MIL.

Stephanie Z
Posted: Thursday, December 7, 2017 5:18 PM
Joined: 12/15/2011
Posts: 3979


Hi, I'm an RN with a lot of dementia care experience. I just reposted something I wrote a while ago on what happens when your LO is dying. Hopefully it will give you some idea about what is happening with him. Of course no one can predict when another person will die, but there are clues to the fact that death is near. I also gave you information about what you can do to support him during this time.

Your FIL will be in my prayers

Stephanie Z


mawvkysc
Posted: Thursday, December 7, 2017 7:11 PM
Joined: 1/3/2013
Posts: 50


Thank you Stephanie for the repost and all of the other posters as  well My FIL and is not on hospice but is being treated with hospice protocol. The hospital staff have been very nice. He is not on IV and very limited checking of vitals. I know hospice would be nice because they are very good at explaining what to expect and offer other support. But up until now that has not been my MILs preference. If he does go home maybe she will consider it. Maybe that is the only way if morphine is used. I don't know. We can all help and she has two caregivers that she hires. Bathing, changing and turning him are things we have been doing for months and years now. So we could handle that. It has been nice having the hospital staff do those things though. ThNks for the concern.
mawvkysc
Posted: Friday, December 8, 2017 7:29 PM
Joined: 1/3/2013
Posts: 50


Just an update. It has been 64 hrs. We are still at the hospital. We were moved to a room with an extra bed and two recliners. It was very nice of the hospital. They are very kind and he seems as comfortable as can be expected. O2 has dropped and just started oxygen for comfort.
Caring4two
Posted: Saturday, December 9, 2017 5:08 AM
Joined: 7/6/2014
Posts: 330


mawvkysc wrote:

 My FIL has VD. Diagnosed 10 yrs now. He had a massive bleeding stroke yesterday. He is on morphine and Ativan. He hasn't eaten or drank for 36 hours. He seems comfortable. Obviously no one knows how long it will be.  But it seems some people last much longer than expected without water. Does anyone have any input or experience?

I'll share with you my experience. My husband also had a massive bleeding stroke. I elected not to do any kind of surgery to relieve the pressure on his brain. He was given morphine via IV and Keppra for seizures via IV. That was the fastest administration route to keep him comfortable. If I would have taken him home, he would not have been able to receive his meds IV. 

My goal was to keep him as comfortable as possible.  After three days, the hospital wanted to move him to a nursing home. I knew he would never survive the trip and it would be cruel to attempt that. He was placed on inpatient hospice. We also were given a room with and extra bed and recliner so I had a place to sleep. My daughter and I took turns doing bedside vigil. He lasted seven days.

The last 48 hours were the hardest as his breathing was much more labored. We were able to start a continuous morphine drip via pump. The last 12 hours of his life he was at the maximum dose. Again, my goal was to keep him comfortable and seizure free. He was comatose but you could tell when he was having pain. I discontinued the oxygen as it wasn't helping much.

It's been six months since he passed and I will always remember those seven days we had together as I walked him home to heaven. 

I needed the 24 hour support of the nurses and aides. They would bring me coffee at 3am or a warm blanket. I could spend my entire focus on being with him and nothing else. If I would have taken him home it would have been totally different. Just my experience for what it's worth.


MPSunshine
Posted: Saturday, December 9, 2017 5:28 AM
Joined: 5/21/2016
Posts: 1625


Hi, mawvkysc, I said a prayer for you and your FIL this morning. You asked for other person's experiences. My dad was at home with us; he was on hospice for fourteen months and the last few days at home were very difficult for him and for me. My mom lives with us and she was in the next bed when he died quietly in his sleep. During my mom's last hospital stay, she rejected most interventions and I found out they have several hospice suites right there at the hospital. The nurses and doctors and staff at her hospital during my mom's last stay were truly so nice and considerate and kind that I decided right then and there that if it ever came to that for her that we would just camp out in the hospital with all that nice staff around helping us. At home, it was comforting for my dad but just so incredibly stressful for us the last four days or so, and especially for me who was doing most of the caring. I do believe that the medication administration through IV is also more powerful than what can be delivered at home through droppers and rubbing on gums. I do believe my dad is in heaven now and that I gave him a gift, even though it was hard for me, of respecting his wishes of being home; he thanked me and told me he loves me numerous times and he gave me his ultimate trust of putting his life in my hands; this was his gift to me. With my mom, she does not care so much where she is, just that I will be with her when she passes, so I think with her I will accept more help if the Good Lord has this in His plan.
tooserious
Posted: Saturday, December 9, 2017 6:06 AM
Joined: 11/20/2014
Posts: 70


mawvkysc, I hope you saw my response to you on my original post. I will keep you in my prayers and I hope the journey home for your LO is peaceful. My Mom never had to have any oxygen or comfort care besides the morphine and ativan. She never struggled and in the end just stopped breathing. The signs for us that the end was near was her blood pressure dropped significantly two days in a row and in the final hours her heart rate and respirations increased, but again no discomfort or struggling. My family was so blessed. I wish you the very best!
mawvkysc
Posted: Saturday, December 9, 2017 8:35 AM
Joined: 1/3/2013
Posts: 50


Thanks all ! Caring and MPsunshine were the meds from an IV bag or just pushed through an IV line?
mawvkysc
Posted: Saturday, December 9, 2017 8:43 AM
Joined: 1/3/2013
Posts: 50


tooserious I'm haven't seen it. I'm trying to go back and find it. Do you remember the title of your thread. Or can you bump it to the top. Thanks for answering
Caring4two
Posted: Saturday, December 9, 2017 9:25 AM
Joined: 7/6/2014
Posts: 330


 ..........were the meds from an IV bag or just pushed through an IV line?

The morphine was pushed through an IV line. The Keppra (seizure med) was mixed in a small bag of fluid and given through the IV port. They would periodically flush the line to make sure it was open. 

Does you FIL have a Foley catheter? You can see the diminished output and darker urine color over time. That's another clue.



MPSunshine
Posted: Saturday, December 9, 2017 9:35 AM
Joined: 5/21/2016
Posts: 1625


Hi! At home with my dad the hospice team gave liquid ativan and morphine. Near the end, my dad was not swallowing anything so I would inject a small portion in his mouth and rub it gently into his gums. The hospital can administer morphine and any other medication for comfort care through an IV. I don’t know whether it is push in or drip. This may be a good question to ask the hospital staff. Good luck and may you and your family be surrounded by a warm glow of protection, safety and courage during this most important and also difficult time. May peace be with you all and may God save our souls.
mawvkysc
Posted: Saturday, December 9, 2017 9:47 AM
Joined: 1/3/2013
Posts: 50


MP and Caring. Thanks for the reply. I was wondering because an IV bad would cause some hydration. He is just getting it pushed through the line.
beaverdams
Posted: Saturday, December 9, 2017 10:38 AM
Joined: 10/29/2016
Posts: 202


My Wife stopped eating and drinking and passed after about 5-6 days.  Keep a radio near his bed and p-lay his favorite music 24/7 as hearing is the last sense to go.  Somebody should hold his hand and tell him he is loved.  Thank him for being a good Father/husband/friend---whichever is appropriate.  Hugs would be ok and keep talking---read the newspaper or hum along with the music.  Make him feel wanted.  

   If somebody hears his breathing get short, the end is near and hold his hand.


mawvkysc
Posted: Saturday, December 9, 2017 7:06 PM
Joined: 1/3/2013
Posts: 50


Thanks for the advice beaverdams   

Thanks as well Tooserious I never found the other post again but the info on this thread helped a lot. 


mawvkysc
Posted: Sunday, December 17, 2017 9:22 PM
Joined: 1/3/2013
Posts: 50


Update: My FIL lived for 6 1/2 days after the massive bleeding stroke. He was in a coma the whole time but right before his last breath he tucked his hand under his chin. It was the position he usually slept in. He died at the hospital. We never did decide to take him home with hospice as each day death seemed imminent. It is thought that the pressure from the blood did not press down on his brain stem as much as it would in a healthy brain as his brain had shrunk so much. He had no food or IV hydration. 

Thanks all for your replies earlier. 


mabeene
Posted: Monday, December 18, 2017 9:06 AM
Joined: 6/12/2017
Posts: 101


mawvkysc I am so sorry for your loss. I'm glad it seems at the end he position himself as he would normally go to sleep. Like he was settling in for a long peaceful much deserved rest form this dreaded disease.My thoughts and prayers are with you and your family in the weeks ahead. I believe that's when we who are left behind need them the most, after all the services are over and you have to go back to living a life without this person that meant so much to you. God bless you for all the loving care you provided for your FIL.
MPSunshine
Posted: Monday, December 18, 2017 9:44 AM
Joined: 5/21/2016
Posts: 1625


Hi, mawvkysc, Tender detail about your FIL tucking his hand under his chin as he went to sleep. Dear of you to update us. My sympathy extended to you and your family. He is peaceful now.
kellly
Posted: Monday, December 18, 2017 9:53 AM
Joined: 6/12/2015
Posts: 415


mawvkysc, I searched for it and found it for you. I'm going to just copy and paste it here.

 https://www.alzconnected.org/discussion.aspx?g=posts&t=2147512645


 

As a dementia care nurse for many years, I've been with a number of my residents when they were dying. What I can tell you is that it is rare that the death if a person with dementia is not peaceful. Most simply slip away. 

When a person reaches the terminal stage of Alzheimer's disease, they are no longer mobile and eating and drinking very little. This is the time for Hospice care if that is the wish of the family. They can help with many of the needs of the terminally ill, especially pain control and keeping the person as comfortable as possible.  This information is to help you understand what to expect. 

Eventually the person will stop taking anything by mouth at all. This is because the body is shutting down. It used to be common for families to ask for feeding tubes at this point fearing their LO would starve or dehydrate. But a lot of attention has been paid to the dying process in the last 20 years or so and we know that feeding tubes and IVs will not really extend life by much and can cause discomfort and distress. The reason is that the body is no longer able to absorb, metabolize or excrete fluids or nutrition. Forcing liquids or even using IV fluids puts an added strain on the heart, lungs and other organs which can cause breathing difficulties, edema and other problems.

We also know that the dying do not experience thirst or hunger any more.

A person who is in this stage is also at risk for infections, blood clots and pneumonia all of which may hasten the death but they are actually part of the dying process. If families choose to have the person treated for these problems, the person may linger a little longer, but death is still near.

After refusing fluids and food, the person will begin sleeping longer and longer periods and eventually will be in a coma. Soon caregivers may notice that the hands and feet are cold. Actually, the body is shutting down, and circulation is reduced in the limbs, preserving blood and oxygen for the body core and brain. In reality, if a person's temperature is taken at this point, we might find it is very high. For this reason, although care givers may try to put extra blankets on the person, if they are still able, they will throw them off. Better to  simply use a sheet.

At this time, there may be some mottling of the skin, especially on the legs. This is normal and a sign that death is near. Breathing may sound moist as the swallowing mechanism is gone. Sometimes suction is used. This stage may last a few hours or even a day or two. Eventually the person will simply stop breathing and death will occur when the heart stops a few minutes later.

What should family members say or do during this time? I firmly believe that dying dementia patients are aware that LO are there. I always encouraged families to talk to the person, stroke their cheek, use lotion for hand or foot massages, and sing or read to them. On occasion (but not frequently). families will report that their LO had a moment of lucidity just before coma set in. At times they have been able to say I love you or goodbye. This is a special gift, but few of the dying are able to do this. None-the-less, there are indications that they are at least somewhat aware of their surroundings and we should do all we can to make them as comfortable as possible and assure them that they are not alone. 

he Canadian Alzheimer's Society has published a pamphlet, on line, with additional information I thought was helpful. Here is their website:  http://www.alzheimer.ca/~/media/Files/national/Progression-series/progression_endoflife_e.pdf  


Hope this helps,
Stephanie Z

 


just exhibit Love
Posted: Monday, December 18, 2017 11:25 AM
Joined: 12/6/2011
Posts: 323


mawvkysc

you and your family are in my thoughts and it is good you are in the hospital so your father in laws needs and your needs can be met at this time. Know those of us who have gone through this journey of waiting found peace that we each did our best to help our loved one by being there.

Namaste

Love Rosie

 


 
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