How long does terminal dementia last

The forums of the German Alzheimer's Society form a meeting point for those affected and interested in sharing experiences.

End stage - what do I have to prepare for

Member since 03/14/2018

Hello everyone, I am completely desperate and would be happy if I can find help here. We had my grandfather at home with his wife until he was 89. Sorry for everything and if with huge efforts :( at the end there were no more nocturnal screams, and no outliers ... it got worse and worse. First the difficulty swallowing started, he kept choking the food, ate so greedily and choked himself over and over again. We then wanted to give him short-term psychiatric care to give Grandma a rest for 3 weeks, but there he deteriorated terribly.

It turned out that she already had pneumonia and was treated for it. Even when he is delirious, he still evaluates himself against the oxygen in his nose. Eigtl against everything. He even tore out the needle and had to be fixed. It was a bad sight because he was degrading more and more. We refused a nasogastric tube, Grandpa would not have wanted that, especially since he also tore out the nasogastric tube after 1! Day.

Only for 3 weeks he has been fixed on his legs, arms and stomach. For me as the oldest grandson, it tears my heart apart when I have to look at it. He can hardly speak any more. Only very confused noises come out. He has his eyes open, sometimes closed, when the sisters freshen him up is a huge roar. So he still has some strength. After surviving pneumonia, the diagnosis today is 2nd pneumonia :(

My grandpa now gets Tavor and morphine injected into the vein to calm down.

He has not had anything to drink or eat for 3 weeks because of difficulty swallowing and coughing. Just drip! How does it go on now? When is my grandpa finally redeemed? We can no longer bear all of this - he never wanted to die like this - tied up, blue and tortured all over by the punctures. Sometimes it twitches all over, like small muscle twitches in the ear, eyes, leg - totally restless. He may also be afraid because he always had to be vacuumed. I'm so sorry for him :(

What's next ? Will he suffer, suffocate?
Please help me answer my questions. My dad has been seeing my grandpa and his dad like that for 3 weeks now. And now the 2nd pneumonia?

I am thankful for every help :(


Member since November 22, 2017

Hello Timo,
You describe what is going to happen or what your grandpa is currently suffering from. Most people with dementia die from infections that are no longer manageable, such as pneumonia. Dementia itself is not fatal.
It is very difficult to give any advice. Nobody here knows the medical aspects. Does it help if someone from the family is there? Maybe then he'll be calmer. Perhaps they could relieve themselves within the family so that not just one person and grandfather have to endure it. Some clinics are better prepared for the treatment of demented patients; they place access points, for example, in places that the patient cannot reach or pull out. Because of the dementia, you can no longer make him understand that what is happening is for his best. Fixations are always the last resort. I would try to be with him often. A hospital is a bad place for a person with dementia. Drinks can be thickened with such a gel powder, sometimes it is possible for the sick to absorb fluids. In my opinion, it is correct that you decided against the PEG. I will do the same for my mother. I wish your grandpa and you and your family all the best!

Member since 03/14/2018

Thank you for your kind words. We tried the one with the thickened drink twice. That was 5 days ago, when he even ate another yogurt and drank the whole thickened one. After that, unfortunately, things went rapidly downhill. There are not many reactions anymore, but he still seems to be aware of us in places and answers every now and then with his last strength, but then he is quickly far away again.
Because of his 2nd pneumonia, he is now receiving antibiotics again, this white food or calories and electrolytes via infusion. Everything all over again :(
It's so sad to see it. My dad drives in every day, me with my siblings every 2-3 days. How long can such a situation last? Can he recover from that again? Unfortunately, I have no hope because, as I said, he doesn't eat or drink any more - for over 4 weeks! Thank you for the help :-(

Member since 03/17/2011

Hello Timo,
is that a palliative care unit where your grandpa is? If not, I would turn on the hospice company as soon as possible, these people have experience in how to make the most seriously ill of the last time in the most bearable way. There should also be a path without fixation and without pain.
I wish you a lot of strength.
LG, Christel

Member since 03/14/2018

Hello and thanks for the many answers.

My grandfather is unfortunately alone on Friday after another pneumonia in the evening
fell asleep.

We were with him at noon.

Now he is finally released from the terrible evil.

Member since 03/17/2011

Hello Timo,
I'm not sure what to say - I'm very sorry or glad it's over. Actually both. Your grandpa now has his peace and no more pain and he is still with you, in your thoughts.
Greetings, Christel

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