Not sure if I posed this question correctly but:
I was just given a book to read about dying and the work that hospice does in support of that. The first case I read about had to do with an 83 year old woman dying of cancer and her attempts at saying good bye to her husband. It appears that because she had all of her faculties, she was able to do this. It also described the reaction of her husband to this.
In the case of a person who has dementia, what kind of “closure” is there during the process of dying? What is their process for saying goodbye and what reaction will their caregiver have as they are actively dying? It seems that the cruel disease of dementia also robs them of their dignity even in death. Do any of you have any thoughts you can share in terms of your experience with a dying loved one with dementia?

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I just went through this with my mom about 53 days ago...not that I am counting...
Mom was 96 and lived with me and my family for 6 years. During that time she went form being able to stay alone and function pretty well to me being her more than full time caregiver due mostly to dementia. It is cruel and horrible to watch. It broke my heart to see her look blankly into my face, and yet there were days she would know me and be able to visit. She would see things/people and before she was in the wheelchair she would "want to go home" so I would have to follow her throughout the house to make sure she wasn't getting out on me or do something that would injure her. Anyway, in our case she would not eat for me one day. At first I thought it was a short term thing. But the next day I called her doctor because I was worried that she would get dehydrated. They were not extremely concerned and told to keep trying the things I was but when she still would not eat or drink the third morning I took in to ER. They were going to re-hydrate her and maybe keep her a day til she would bounce back but then within the next 20 minutes they came back into the room and said her numbers were so wacky that they were not sure she would bounce back. I went from being elated she was getting fluids via IV to looking at bringing her home with hospice. She came home on Tuesday afternoon and passed away on Saturday am. She slept most of that time. She would open her eyes when we would turn her and I think she knew us and was at peace, My brother was not able to come and i think she hung on until I finally was able to tell her that he wasn't able to be here but he sent his love and it was ok to go and be with dad in heaven. I struggled with that only because I didn't want her to go even though I think she knew it was time and that is why she quit eating for me. I am sure everyone is a little different but I think with dementia they are at peace and you can still say your goodbyes and talk with them even if they cannot or do not say much. They feel the love, and I know it helped me when someone said I should tell her its ok to go. My friends mom waited until her brother, who didn't want to be there finally came and at least said he loved her. She just needed to know that and passed within hours of him visiting her. After my friend told me that and I got up the nerve to say that to mom about my brother she seamed to also let go and was ok with it. I hope this helps. I miss my mom so so so very much and I am in the process of figuring out the next chapter in my life since she is no longer in need of my care giving. I am looking for a job and trying to move on.
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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.
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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.
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Stout25 My heart goes out to you. It surely does. Sort of the same thing happened to me with my dad and it is so very hard not to feel guilty and, yes, even angry over what might have been. You may not believe in this sort of thing, but for what's it worth, and although I think you actually did say your goodbye the last time you were there with him, I believe that the very second he drew his last breath, he was right there with you - No matter where you were at the time - And - I bet he might have had a bit of a laugh at how you struggled with the thought of not being there (not an unkind laugh, mind you - but a "hey, no big deal, I'm finally out of that body and mind and into this new one, kind of laugh).
The thing is, nothing in life is ever going to be perfect or work out exactly how we want it to work out, and you cannot hold on to some UNDESERVED guilt in spite of the fact that your husband was FREED without you standing right beside the body that he was freed from.
Don't mean to be preachy on ya and please forgive me if I sound that way. You see, in writing this to you I am also writing it to myself. We gotta quit this guilt stuff and move on. Right?
Anyway, you are not alone and what you have felt and what you have experienced has been felt and experienced by countless others and we need to allow ourselves forgiveness from ourselves ... for we are the only ones blaming us. Your hubby doesn't and neither does my Dad.
Helpful Answer (11)

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.
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CarngDtr, I understand why you would want to know what to expect. My husband had dementia for 10 years; he also had atherosclerosis. He and I and his primary care physician all hoped he would die of a heart attack. We hated to think of a long, drawn-out dying process from dementia. Of course hoping doesn't make it so. He experienced considerable decline in his final year but remained lucid throughout. He was on hospice care at home for five weeks. He slept more and more and ate less and less. I offered food but did not push it. He had a nice breakfast the day he died. He went sooner than anybody expected based on his symptoms -- the hospice nurse thought he would have several more weeks. But the time he had was enough so that all of our grandchildren and other loved ones could visit him. He was never in pain. He was sometimes confused but never in a way that frightened him. He did not have hallucinations. He died holding my hand. It was a peaceful, gentle death.

I think that accepting that he was dying was tremendously helpful to me, and probably to him. No one was anxiously trying to "fix" anything, but only to keep him comfortable.
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Thank you all for sharing your experiences in response to my question. Twotonne, I now realize that my Mother's dignity is intact because I too am following her wishes. (Thank you.) She's not able to do much for herself (vascular dementia) but she still responds to love and care. Everyone - your experiences have been helpful to remind me that each day I can tell her how much I love and appreciate her, what a great mother she is and remind her of all the goodness she brought into the world. She may only remember my words for a few seconds but that will be ok. I pray that she will have a peaceful death--hopefully she will just close her eyes and even if I'm not there at that time, it will be ok. Because I will make sure to tell her how I feel while she is still here. Hugs to all of you.
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Stout, this is going to sound weird, but this is how I view things....In my mind, someone who is dying has gone far, far away into their own souls, and there, they wait for freedom. The soul is very far away from the body that you see on the outside, and all it's doing...the soul isn't touched by any of it, and it's fully aware, even though the body can no longer function, of all that goes on around it. This is how I truly believe it is. The place where the soul retreats to is so deep, a good, quiet, peaceful place where you can't reach him, aren't aware of him, can't 'see' him...but he certainly is aware of you, what you say, all that goes on around the body. He heard you. He saw you at the very end, of that there's no doubt whatsoever in my mind anyway.. *hugs* .
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Stout25, pleae don't feel guilty, that goodbye you had just two days before was I'm sure the best your hubby could manage. Lots of people have less in the way of good memories to hold on to than "I like your face." You might not have been of any help when he was in some kind of spasm holding on to the bed like that, and that last bit, well, he might not have known what was going on at all.

I wish I could have been there for my dad's passing like I was for my mom's, but with dad at least I knew we had already said all the important stuff and the people with him loved and cared for him too. They also couldn't quite tell me how bad it was and it sounded so routine earlier in the week...I would not have gotten there anyways if they had told me even as much as 12 hours sooner, that was the reality of it. Once I knew, I got coverage for my weekend at the hospital where I work, but found out about 2-3 hours into a 15 hour drive in the snow that he was gone...
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Little rant here. Society tells us how we have to look, what to wear, and now what kind of death is "good enough!" I have read Helen Kubler-Ross, and thought it sounded great. But some people want to stay in denial right up until the last minute. That's their right.

In my limited experience, a dying person seems to be already gone long before the breathing stops. If you can be there, that's great, but as almostthere says, "Nothing in life is ever going to be perfect or work out exactly how we want it to work out." Let's not put pressure on ourselves or our loved ones to die according to any sort of rules.

End of rant.
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