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During the dying process, if the patient is able to communicate to the caregiver, what comments have been said as to how they feel? What is it like to die?

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I lost my mom to Dementia on June 30th, about 3 weeks ago. She had it for the last 9 yrs and I was her sole caregiver and Power of Attorney. In the last 3 weeks of her life, she became disoriented, but other times very alert and looked right at me. She was bed-ridden, Hospice services assisted me with monitoring her etc. but I did not want her pumped up with meds and prescriptions.... she had not eaten since June 14th and after 2 weeks we were just glad to get her to drink water and liquid Ensure. She definitely heard me try to explain how important it was for her survival to drink water and stay hydrated. At 83 yrs old she had never had a UTI before, and somehow she got one .... This caused her to be agitated -- almost delirious -- even more heightened than her normal Dementia related Sundowner's Syndrome which she had since 2009 as well.

As she became more dehydrated, I could see that her weakness overtook her ability to move, or even turn over to sleep comfortably. I could see in her eyes that she hated not being able to get up--- hated that she was being bathed, and fussed over.... she could not understand why she was so weak, yet would not drink or swallow during the last week.

Prior to that she actually was talking a bit.., as I tried to feed her some Ensure through a straw, she said "why don' t you ask him if he wants some too".. "Ask who?", I said "That guy next to you" she said. Now we were in my home, in her bedroom and she kept looing to the right of me as if someone were actually there....Then she said " Oh ,and look at the others.... over there, and there..." She was pointing now around the room. She said their outfits were sure nice but that it appeared they were leaving to do something.... get things ready they 'told' her. Well, I'm noto one one question whether she saw and heard Angels or not .... but those were the last times she actually spoke words. I would find a small tear dripping down from her eye every now and then. I know they hear us....even if they are too weak to speak. I always spoke to her positively, always with the prayers for complete healing and restoration. I put the Dodger game on for her in the evenings and let her listen to Elvis and other favorite CD's of hers even up to the very night before she passed. I left the night light on the brightest setting too, so that her room was softly illuminated... never lonely and dark. I wanted her to see her things, her familiar surroundings... even if her sight was clouded over.

I believe they feel the 'pull' of death dragging them down, the breathing gets labored, and the look on their faces change.... but the ears many times still hear.
Speak love, courage, and safety --softly---- and the dying process will not be scary, it will be peaceful.

I hope this helps in some way.
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As a nurse, I have had many patients with terminal illnesses. I have asked my husband what it is like since he has dementia. He says he is angry with himself for forgetting, cannot do things he normally did right, and makes statements frequently indicating, "Well, it won't be long" to "I don't care, I won't be here". Every day we die. Every day we get closer to the end of life, we just don't know when. Saying goodbye to the one you love is the hardest part for me as I think about all the good and bad times we have had together in our almost 30 years, and I must carry on without him. He mostly is watching to see how I handle events, my responses, and feeling I am capable of existing without him. His thoughts are for me to survive, and he has told me he will be watching...I know my life has been greatly enriched by having had him in it, and I am a much stronger person because be has guided me so expertly. Now, in his time of need, I will keep him safe, and forgive this disease that robs one of their memories. God has a plan, we just don't know what that is...
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My Dad and Mom passed away at ages 87 and almost 93. They never went into assisted living and were only intermittently sick, in and out of hospitals for adjustment to their medication. They both read a lot and their minds were good til the end. My Dad became kinder, my Mom seemed afraid and could get nasty, but I think that was just her fear... in the end she was also kind and generous, mostly.

My Dad had had small strokes in the mornings, when my Mom couldn't wake him. It really worried her. We called 911 a couple of times and he was hospitalized, then he eventually told us to promise never to call 911 again. He became kinder and gentler in his last few years of life and the last evening we had dinner together... he said to me, look how well everything turned out. I told him I love him and he didn't wake up the next morning.

Years later, my Mom had congestive heart failure. For years she was frightened. She would rally for handsome doctors and for her son who visited her once or twice a year for a few days each time, and she would get cranky and scared with me. I knew she was frightened, but it was still hard to be abused by her after she had been a good mom to me when I was young.

I hung in there and was there for her every day. Someone here advised me to tell her I love her every day and hug her if I can.... which I did and I will always be thankful for that advice.

I went to her house to be with her before hurricane Sandy and a few days later after we lost electricity, heat and the ability to cook warm food for her, she asked to be brought back to my town and my house. She wanted pizza the last night and had two big pieces. I brought a banana, an apple and water to her bedside and put her to bed with her kindle, so she could read in the dark, and tucked her in warm blankets. She was at first concerned about what she was sleeping in, but I showed her with the flash light that the blankets and sheets were by Ralph Loren, so she pulled up the blankets and laid down with a smile.

The next morning I got up and went out for coffee. There was no noise from her room. When I came back she was gone... the banana and apple were half eaten and she had taken some of her morning medication. We/they tried to ressusitate her, but I knew she was gone. They said she died 45 minutes earlier.

The last few days we had made pasta together with sautéed onions and garlic, my sweetheart made her steak, which she ate all the way to picking up the bone, and I changed her nail polish color because she said she didn't like the color she had.

After the hurricane, all the trees had fallen around her house and I felt like we were on an adventure looking for ways to find heat and food for her. After she died, I felt her hand and it was warm... so I knew she was comfortable even though there was no heat in the house.

Having seen both my Mom and Dad after they died, I felt like their spirits had left their bodies and could see their bodies are the thing that carries life, but life wasn't there anymore. I felt them then and now in my heart and in my thoughts.... always.

I am thankful for all the time I had with them to learn from them and feel their love. I hope I am able to do the same for my children and that we can all live a long and kind life until we pass on... healthy until we sleep.
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I experienced the deaths of both of my parents having been their caregivers. One died at middle age (very difficult to accept). They want to "finish" their lives when they are middle aged. One died at 93 yrs old, which was easier for both of us to accept having lived a good, mostly healthy and long life.

The last few months before the actual death, they each faced reversals in their conditions (cancer and old age respectfully). They lost mobility, the ability to stand etc. This was very upsetting for each of them. Each continued to eat as best they could, talked, listened to music and television. Concentration required to enjoy reading left my elderly parent the last few weeks, up to that point he enjoyed reading his daily papers--I read highlights to him after that point so he could feel he was continuing in some way to keep up with the world around him.

The elderly parent enjoyed speaking of his parents who he admired greatly, and his life experiences during the Great Depression and WWII. By 93 yrs many of his siblings had passed but he liked to talk to his remaining brother (9 yrs younger). He had been a widower for 38 yrs so he did not have a spouse to care for him but indicated to me that he wanted "what Bess got" which meant he wanted to have the same funeral, funeral mass and resting spot as my mother, late his wife.

The final days of their lives were very normal, no great pain and peaceful.

We have a society which rushes into delivery rooms (the times of joy) but shuns the deathbed moments, they are on a continuum. One marks a life's entering our lives and families, one existing our lives and families--thus the loss to us who remain. While we can enjoy are lives (both of my parents did) they were not angry at dying, my elderly father used to try to prepare me for losing him. He would announce to me "You know this can't go on forever, I never thought I would live this long, I think the big guy forgot about me etc." He had a sense of humor about it. However, his mother used to wish people a "Happy Death".
My father asked his mother as a child, " How can death be happy?" To which she said a death is happy when is it peaceful, painless and you don't realize the time has come. Though grandmom was but a simple immigrant who worked hard all her life, I think two generations later she has it just about right.
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The day he died, I visited my father at the hospice. I thought he would last another month. The nurse later told me she thought he would last a week. That day, he told me I needed to take him out to buy a new pair of shoes. I guess he was planning to walk through the Pearly Gates! If he got there, I'm sure he gave God a piece of his mind. It always upset him that the innocent suffer in this world.

The nurse went into his room, and they had a spat about something. It was always easy to have a spat with my father. They made peace, and when she returned to his room 45 minutes later, he was gone.

I was so relieved to know that he was safely away, free of pain, and free of the indignity of dirty diapers. It's hard to feel as if I've lost him when his wise cracks and wisdom echo in my head every day.
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This is a question that I asked myself so many times and I still do. I lost my younger sister to cancer a year and a half ago now and I remember as she was in the later stage I would she her very distant in thought. Sometimes I would ask her what she was thinking about, as she looked so sad to me and I'm sure she was as she was leaving her life, her children every thing that meant something to her. She was barely 51 years old, but was always positive. My heart ached for her as I tried to imagine where she would go in her silent times of thought, her personal space. At times I would see tears well up in her eyes but didn't dare try to ask her what she was thinking as I could only imagine. She would talk openly about death and again would stay very positive. We talked about my grandmother as she missed her dearly and I would tell her not to worry that gramma would be the one to come and guide her. I told her to leave a space for me right beside her and she would smile and say that she would. As we got closer to the end them distant thoughts seemed to be more frequent and I would see her raise her hand as if to be reaching for another's hand, I would ask her "do you see gramma, is she here" and she would say yes. Even at the end this continued as she would raise her hand and I would ask her is "is gramma closer" and she would moan as if to say yes. Having experienced that with her I am more positive than ever that there is definitely life beyond this world and it is peaceful. But I still to this day ask myself, What was she thinking?
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Lost my father in January when he was almost 96. Very similar to 1clhaves experience. When a person no longer can swallow and take liquids it is only a matter of time. He was unconscious with family around him as he passed away- it was harder on the family but everyone knows he is in a better place. He was in a SNF for almost three years with no mobility and increasing dementia/alz which was very difficult for himself and everyone around him to see. God has a plan for all of us- we just don't always know what it is.
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My grandma was never one to discuss feelings of any kind. You just didn't talk about that stuff as far as she was concerned so I can't tell you what was going through her mind. But, I would say that even if they seem like they are not hearing you and are unresponsive, they are probably more aware than it seems. When she was in the process of passing away in the hospital, she seemed unresponsive and would not communicate with us at all for the last two weeks. She could hear and understand everything going on around her, though. The night before she passed away, the nurse told us that when she tried to turn Grandma over, Grandma growled at her. We said, "Seriously? She literally growled at you?" and the nurse said yes. I guess Grandma just wanted to be left alone. Anyway I looked over and Grandma was looking me right in the eyes and giving me a deadly glare. She never was a very kind and loving person anyway. Mom and I stayed at the hospital for two days straight with Dad, waiting for her to pass, trying to be comforting and supportive. Finally Mom and I had to leave for a few hours to go home, shower, etc. Grandma picked that time to pass away. We believe she stubbornly held on because she wanted her sons (Dad and my uncle) all to herself when she passed. It seemed to be a very slow process and she had to be miserable because her lungs filled up with fluid and she was rattling, gasping for air for about a week. We could not believe how long she held on. She just refused to go until she had her sons alone with her.
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Dear 1clhayes your story of love for your precious mom made me well-up inside. I'm so sorry for your loss, but I know that if as a stranger I can feel the strength and intensity of the love you have for your mom just from your choice of words in your writing, I know your precious mom felt showered and fully clothed in your love for her, which clearly runs as deep and as wide as the largest ocean. Very pure and very real!

I lost my sweet precious grandmother to Alz. last year. She certainly was our heart. May you feel the comfort and embrace of the Lord's love through this next part of your healing journey. BIG, BIG HUGS !!! :)
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If you contact any hospice care facility, they have a book that outlines the process of the stages a person who is dying goes through in death. It is free, and I'm sure that they would give you one.
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