how do you know it's the end?

Amy-n-Joe

DH has EOFTD and his doctor had him admitted to the geropsych unit back in March and from there he transferred to an assisted living memory care unit. His decline has been rapid as he was still testing in the MCI range in June of 2019.  Then January 2020 he was at 21 on the test, December he scored a 16, and in March at his last visit he scored a 10.

As recently as June 17, I was able to take him out to lunch, though I had to feed him anything that isn't finger food.  But since then, I hadn't been able to see him as he was sleeping more and more and having him be awake when I was able to come see him just wasn't happening.  I have seen him a couple times because he ended up in the emergency room and I went to be with him.  Both times he was completely out of it while I was there.  Friday night was the last time and then I called and talked with the aides Saturday morning and got a lot of information about what is going on with him. He is sleeping constantly now and he has not been given any meds during the day for awhile as the doctor put a hold on them if he is sleeping or drowsy.  They are giving him a big dose of Trazadone at night as they want to make sure that he does sleep through the night.

The good news was that they told me I was welcome to come and sit with him in his room and could stay as long as I like. So I went that afternoon (now yesterday as I type this in the wee hours of the morning on Sunday)  He was in the same state as I have seen him late in the evening at the hospital.  He was asleep and not easily roused. Only once during the hour I was with him did he open his eyes, and that did not last long.  We took advantage of that time to have the aide help him sit up slightly so he could drink some water.  He couldn't purse his lips enough to use a straw, but was able to drink from the cup with me holding it for him...not well, but he drank almost half a cup.  I plan on going and being there through the lunch hour later today so I can see the process of getting food in him. I had asked about if he is having trouble swallowing and was told that he ate well.  So I will see for myself.

Anyway, I am feeling like it may be time for hospice.  He can't sit up without assistance, he can't walk without assistance, he is incontinent, he tries to talk but mostly just makes grunts or unintelligible noises.  There is no UTI in play.  I have an appointment for a zoom meeting with the doctor on Tuesday and will talk with her about it then. I would just be interested in hearing from anyone else who has been through this.

M1

Amy I think your instincts are right on target. It sounds imminent. Glad you can be with him. I'm so sorry, hard to watch. You can call today, they'll have folks on call despite the holiday.

Cynbar

Yes, I agree, you should contact hospice today. It doesn't need to come from the doctor, hospice will take care of contacting her and getting the necessary orders. You might ask his assisted living which hospice agency they usually deal with, unless you already have one in mind. But it does sound like he is winding down, and you don't want to miss out on the comfort and support that hospice can provide both of you.

Amy-n-Joe

That is a good suggestion to talk to the facility about which hospice they normally work with and give them a call.  The doctor actually had set up the zoom call for Tuesday, and now I am suspecting it may have been to bring up the idea of hospice.  I will talk to them today about hospice as well as do a little research on what is available in the area before I go since there may not be anyone working this weekend that knows that information.

It's just happened so fast it's kind of hard to wrap my head around.  I can't believe that just 2 weeks ago I was able to take him to lunch and now he is in this condition. I took my daughters to see him yesterday.  They had not seen him since he left the house on March 19. My 16yo got really upset and was crying.  My 14yo, who is a spitfire, was so sweet and gentle with him - holding his hand and being very loving.  She hated him over the last couple of years - didn't care that it was a disease process and not our Joe. She hated to see how he treated me and what I was going through. So it was such a surprise to see her tenderness toward him.

Last Dance

 I am kind of surprised that the MC place dint recommend hospice already. I can tell you from my own experience that they can really go downhill that fast. At the end of December 2016 my wife was able to walk, talk, and take her medication, and understand directions, and what I consider to be a fairly stable situation, and I thought she had at least a few more years to live, but it was not to be. In the middle of January she really went downhill fast. She stopped taking her pills could no longer figure out how to swallow them, and starting sleeping more. By mid March she no longer could walk, talk, or eat. However she did drink with a straw. She passed away on June 16, 2017 Compared to what others have gone through to me this very fast.    God's Blessings to you and your family Richard

  

dayn2nite2

I’d ask the aides/nursing staff what hospice they like and call today.  I don’t even know if he’ll last until Tuesday if he’s as you are describing.

jfkoc

I would call and interview several Hospices asap. I would probably chose one not associated with the facility. You want one that is totally independent.

I would also question why your husband was taken to the ER since he is sleeping close to 24/7.

I would research Trazadone side effects and 1/2 life to make certain the sleepiness is not from the drug. The facility should really have no concern if he is awake during the night unless they are understaffed.

When you go time it to get there before the Trazadone is given.

Last....I was told by Hospice not to use a straw because it could lead to choking. I have no idea i that is true but I stopped.

In a perfect world we could rely on others. I have found that at no point was I able to stop monitoring. 

Please keep us in the loop. We care how you and you husband are and are always here for you!

Amy-n-Joe

dayn2nite2 wrote:

I’d ask the aides/nursing staff what hospice they like and call today.  I don’t even know if he’ll last until Tuesday if he’s as you are describing.

Funny enough, that is exactly what the intake nurse from hospice said after getting all my information today.  She asked if I wanted to keep the doctor that has been caring for him or use one of theirs.  I said I thought maybe it would be better to use one of theirs as the doctor that has been treating him does the rounds at all the facilities in the area, so only comes on Tuesdays.  She said she didn't know if he would last until Tuesday so definitely would be better to get one of theirs on board.

Amazingly enough, since I was having to deal with the holiday/weekend issue, they were able to get everything expedited and had hospice on sight by 5:30 this evening. Now off to bed to get some sleep so I can head out early in the morning.

Thanks so much for all the responses.  They were each appreciated.

Oh, I got lucky as far as hospice.  I did zero research on hospices and just went with the one that the staff gave me. (brain in blender - no way I can do research right now) I sent an update email to the leaders of the support group I have been with over the last couple of years and it turns out that it is the one they would have recommend. Another little blessing along the way.

M1

Glad they are there for both of you. Hope it's helpful, wishing you well.

harshedbuzz

jfkoc wrote:

I would call and interview several Hospices asap. I would probably chose one not associated with the facility. You want one that is totally independent.

IME, it is typical of MCFs and SNFs to have a list of preferred hospice organizations. Given that they work with the hospice teams all the time, they have a good idea which ones are reliable, compassionate, dementia-informed and dementia-trained.

anneleigh

Praying for  you Amy!  May you be blessed with companionship and the help you need to get through this.

McCott

If this is the end, you will be lucky.  It could drag on for a long time.

At the end in hspice, my husband was not allowed to drink -- it drove me crazy -- this and that and whatever -- so what if he chokes???? Let him have a drink.  IT WAS HORRIBLE. I had no illusions about him living, but the way he died WAS HORRIBLE.  

Why can there not be a peaceful exit, the kind of thing we do for our so-called "pets"??  People seem to think they are more worthy of gentle care and peaceful exit than our husband, wives, sons or daughters.

IT IS BARBARIC to keep late stage Alzheimer's victims alive.  Period. 

jfkoc

harshedbuzz...you have changed my mind.