What is the dying process of those with dementia?

This is one of the most difficult and personal and painful question to answer. My husband suffered a massive stroke that after months developed into vascular dementia. It was at first a gradual process but seemed to speed up in the last couple of weeks of this life. Toward the end our communication was limited to direct eye contact and my holding both of his hands. Deep down we both felt the connection between us (we were married for 46 years) - yet he had lost the ability to speak. You know when time is running out and I felt so did he. So, I did the talking for both of us. I knew what he wanted to say and said it for him and most important I repeated over and over how much I loved him, not to worry about me, that I would be missing him, but I would be able to take care of myself. With other words, I wanted to assure him it was alright for him to go into a better place, into God's loving embrace. I did not want him to worry, or struggle and fight the inevitable. He relaxed in my arms and I saw in his eyes he understood ... his death was peaceful.

While there is no set pattern to dementia, it is likely that your patient will have gone away in his/her mind long before their body fails. Prior to reaching that state, the patient really doesn't understand the extent of their dementia, so telling them goodbye would only frighten them. I realized I was saying goodbye to my mom - in my mind - every day, when she would slip out of reality and slide into delirium. By the time Mom was totally delirious, I had long since accepted the fact that she was gone, even though her body still lived.

A death from cancer is miles away from a death from dementia. My husband has dementia and my mother and MIL both died from cancer. My mother and MIL both could express their goodbyes orally and in writing and did so. They were able to decide when treatment should be discontinued and just comfort methods started.

My husband on the other hand is barely aware of where he is, time of day and who is in the room, and has difficulty swallowing. He is totally incapacitated mentally and physically, can't walk, talk or write any kind of instructions. He had this talk with me a couple of years into his dementia when he still could make lucid decisions. As his POA and now guardian, I know what his wishes are. He took each of our grown children aside and talked to them, expressing love and apologizing for anything he may have done or omitted. That was about seven years ago. He is in the final stages of FTD. If he stops breathing or his heart stops I know that DNR is the way to go, if he gets pneumonia to not give antibiotics, if he gets another life-threatening disease to just keep him comfortable.

As his wife and primary caregiver, I am keeping his dignity intact by following his wishes as he slowly slips farther and farther away. I am saddened to watch his dementia take him away, but he is in a place now that he doesn't realize what he used to be and he no longer mourns his former life like he once did. This life is the only life he remembers clearly.