End stage dementia - what to expect?

I remember how traumatic it was when the doctor said anytime we were ready for Hospice she'd sign off on it. Hugs to you. That is hard to hear, even when you are expecting it, and even more devastating when the decline happens very rapidly.

My husband was on hospice, at home, for 5 weeks before his death. It was extremely helpful for both of us. I wish we'd signed up for it a little earlier, but the time we had it was very worthwhile.

My mother was on hospice care for about 3 months, in a nursing home. The extra care and attention she got because more resources were available (NH staff + Hospice staff and volunteers) were very helpful. In fact she improved so much that they discharged her from hospice. That was a year ago. She is doing well, considering her chronic conditions.

Obviously I don't know your entire situation but from what you've said, it sounds like it would make sense to move Dad into the same care center where Mom is, and to apply for hospice care. Recovery from the septic infection and the trauma of the hospital stay takes a long time in the elderly with dementia. Who knows? He may gradually improve some while on hospice care. To go on hospice means the doctor has predicted that he is in his last 6 months of life. But nobody can make an exact prediction. Maybe he has more life ahead of him, as my mother did/does. Maybe the rapid decline will accelerate and he will die soon. In either case, I see only good coming out of hospice care for him. And it can be comforting to you and to your mother.

My mother has been living with dementia for probably about 5 years. My husband lived with it for 10 years. Runner123, that this has all hit you in the past 3 months must be almost leaving you numb. My heart truly goes out to you. Keep in touch here, and let us know how things progress. Take care of yourself!

A point about hospice, sometimes patients improve while under hospice care and are taken off the hospice system and returned as they decline later on. It is not necessarily a death sentence. Good luck to you on this journey.

I agree with Jeanne and have one word of advise to add. If you have more than one option for hospice in your town be choosy as to whom you select. While they are all governed by Medicare they do have different philosophy's. I was in the same situation with an infection and signed my mother into the hospice organization that was part of the same medical group as my mothers doctors. They took her off nearly all meds and were pushing morphine to keep her comfortable. Fortunately I had caregivers who felt the same way I did that the morphine should be a last resort if she were in pain. She improved in the next few days so I requested some of her meds be re-instated. I was informed she could only receive them if in palliative care not hospice care and when I asked to be switched over to palliative care was told she was not illegible and that the hospice doctor thought she was where she needed to be. I felt trapped and called her case manager with insurance to see what I could do. I learned you can switch hospice organizations at any time and did so that very day. I had no idea there could be differences. The first organization seemed to have the attitude to help her die as quickly as possible while the 2nd seemed to have the attitude we're going to keep her as healthy as possible and give her as much quality of life for whatever time on this earth she has left. Very eye opening experience. Bless your heart this is not an easy time.

Oregongirl.....I think our friends are busy with their own lives. I don't think it's that they don't care but just they are busy doing and going. I used to play golf 2 times a week and had to stop because of caregiving. I was able to go to lunch with some of my old friends a few weeks ago and found out so much of what was going on. One had lost her job, one is taking care of grandkids, one's husband has been going through BAD parkinsons.etc . Some don't care but the majority are just plain trying to figure things out themselves. I totally agree with the website. We are a village of people who are going through a rough time no matter what that rough time is. I found myself today answering the question "how are you?" and when I listened back to what I was saying, no wonder people don't ask anymore! :)) Next time I'm asked I will make it a short, sweet and answer....."hangin in there". Just a thought about friends but just know that I pray each day for all of us on this site and those who haven't found us yet.

My mom has been diagnosed with Alzheimers 4 yrs ago and has been difficult since. She was in/out with it but she also has other medical conditions that seem to 'add' to her discomfort...at about the same time 4 yrs ago my dad suddenly became deathly ill with pneumonia which quickly turned into a 4 month stay in ICU having then had a heart attack and congestive heart failure. The suddeness of this all was quite shocking to me but fortunately having to deal with all of this by myself was numbing, to say the least. Somehow I managed to get thru it all; I've heard it said that God doesn't give you anything you can't handle but wow !!! THAT was almost devastating to me to handle all at the same time...Dad almost died but fortunately he is still alive but now he is wearing down again and I'm not sure he's going to ever bounce back...he had a defibrillator put in, his heart is strong but it is apparent that he is just not going to regain any strength back. He tires very easily. But he has been showing signs of dementia and I think he is noticing it too and is very resistant to it; he's afraid he's going to end up like Mom. Mom was also just diagnosed with an abdominal aneurysm so in addition to her Alzheimers I have no idea how it will affect that...how long does one stay at any certain stage of Alzheimers??? She was probably showing signs of it about 1 yr before diagnosed...she seemed to be a kind of plateau for 2 months but now she seems to be progressing again...this dementia/Alzheimers is terrible. Why don't someone get more help for this or earlier diagnosis for it ??? It's terrible to see someone be robbed of their mind, and their actions. I'm keeping them in their home for as long as possible, and keeping their safety in mind. As long as they remember their surroundings and be safe, that's what my goal is. They've always loved their home and yard. Dementia is the worst evil.

Dementia goes in stages and on a plateau, then drops. Severe Alzheimer's disease (late-stage)

In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases, but communicating pain becomes difficult. As memory and cognitive skills continue to worsen, personality changes may take place and individuals need extensive help with daily activities.

Require full-time assistance with daily personal care
Lose awareness of their surroundings
Experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow (mom stayed on this for 14 days before she died)
Have increasing difficulty communicating ((Mom perked up a month before death, but I was carrying her around within 15 days of that)
source I have used: http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp

My mom has had dementia ever so slowly creeping on since about 2000, or after my dad died. Whenever she has a traumatic injury (broken knee, shoulder) it gets worse, but after some time, does settle down, but still makes the dementia worse.Hospitals who treat people for illness and broken limbs usually can't deal with dementia patients very well, and patients seem to be more restless and delusional there, I think.

Runner123
I opened this email hours after getting a call from my husband's hospice care manager that he had fallen during dinner and had hit his head on the dishwasher door. Slight bump but no lapse into unconsciousness. This was after a noontime call that his left hand is swollen and tender. Do I want an x-ray and if it's broken, do I want the had casted.
He has been in the final stage of Alzheimer's disease since December. He doesn't speak intelligibly, he doesn't recognize me or anyone else, he does feed himself and he walks. He walks all the time which is why he now is gettng weaker and falling. The workers complain if he is medicated and lethargic. They complain if he is agitated and constantly walking, needing someone near him to prevent him from falling.
This is indeed such a sad time and no one knows how long it will continue. He has been out of my home for 4 years now. I would leave your Dad in the Long Term Acute Care facility for several months and only move him if he becomes stable. He will get the most care there. I would bring in hospice as they are such caring people and so helpful and take each day one at a time.

My heart goes out to each of you who will be making the decision about hospice. My mom had care in a nh with hospice. It was a heart wrenched moments.
My experience with hospice was vey helpful. Unfortunately I had to fire the first hospices company and by the time I did my mom had 3 days with the second one. Be there for them till the end. Invite close friends to visit and family. Say what you have to say before they are at the active dying stage. Remember the good times and reminisce and take pictures. Above all take care of yourselves by exercising and eating healthy during this challenging time. I did go an Excersise every chance I got. It helped me to clear my mind and helped with stress.
Hugs to all!

He probably will not notice where he is, but if it gives you peace of mind and your mother, then take him home - nursing home. Septic infections are very bad for brain health, and I suggest hospice be called in. I'm sorry you are having to go through this as dementia takes its toll on everyone.