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I know what you mean Amy. My Mom was very angry about being moved to a memory care unit but after she adjusted she mellowed out. Now she is very mellow so maybe your Mom will get easier to cope with too. My Mom is 93 and doesn't remember much of anything anymore. She recognizes us as family when we visit but that is about it.
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Reading all this makes me so sad. Mom is 100, has had a long healthy life. She is in about state 4-5 of Alzheimers. I don't want to see her go through these last stages which, with her current good health could be many more years until she turns into a vegetable. I know there is nothing we can do about it, all we can do is love her and try to help, but the progression has accelerated, and we have to move her to AL soon, and she will be so angry and upset. She has been depressed and complaining for the past 20 years. I can't imagine what the next few will be. I hate to say it, but a person can live too long when their life has no meaning, they are so unhappy and no longer able to think. The loss of dignity of a formerly normal person is awful.
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thanks for all the responses to my question. Yes, mom got a bad bladder infection and passed away within 4 days. She passed away on June 26th 2014. Now I wait with my ailing dad because he is 88 and showing signs of this awful disease. I hope for him he doesn't suffer as mom did. Right now he is just forgetting and will not admit that he is showing signs of dementia. Prayers to all who are going through this and my heart goes with you all.
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lesley you are right - it will probably not be very long now. I hope you can be strong at this sad time and have people to support you as you try to comfort your dad as well as you can. Hugs...
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I think, from what you wrote, that the doctors believe that he's in the death process. For many, this takes time as organs shut down. Food isn't digested. Liver stops functioning. Gradually the heart or brain shuts down. We will all die eventually so if this is his time, it's okay. Keep him comfortable - with drugs if necessary. Emotional and physical comfort is all you can do but it's a lot.
Thank you for caring so much.
Carol
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my father in law has end of life dementia his not eating or drinking he was admitted a fortnight ago to hosp with a severe uti they put him on a drip for a week and antibiotics sent him back to the care home saying theres nothing else he they can do just to make him comfortable but now he cant even swallow food do you think he has long on this earth
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Does anyone know what happened to Yellowfever's mother? In her last post, she says her mom took a turn for the worse and was on Hospice only a few months after her initial question. That was in 2011. I'm curious as to how her mom progressed. Anyone know?
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My Mom is a lot like these posts too. He memory starting going gradually since 2001. She is 93 and living in a very nice memory care unit for the last year and half. She became too unsteady to walk this past summer but gets around very well walking her feet with the wheelchair. She seems to enjoy it and can move much faster than she did with a walker. She is losing her ability to communicate often using the wrong words to say what she wants to say. She has been incontinent for a long time. She still eats well though even though she is tiny. And always knows her family although sometimes even though she uses the right names she thinks we are siblings instead of her kids. She has had a DNR order in place for a long time well before she became ill. I think her dementia is vascular in nature and she has had several TMI's.
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You're all Saints! Both my parents live with my husband and I. My mom is not near as bad as mosts of these posts and I am exhausted. I am gone 11 hours a day for works and life feels like a high speed merry go round I can't get off. I am overwhelmed.
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Chimom so sorry.. That's why we went to the lawyer before Mom was diagnosed with dementia and she made it clear not to prolong her life...
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Hi, one of the entries here touched me when she said: I put a feeding tube in mom, she had no living will. She is still alive 8 months later. She has no quality of life, has 24 hour care in her own home, recognizes me, she is not happy and wants to die.
This is so where I am right now. My mom has had severe dementia for 4 years, this year being the worst. She has to have total care, and she doesn't speak any more, but will jabber sounds like a baby does. They just put a feeding tube into my mom this week. Yes, she quit eating, and drinking and even her doctor did not want to have a feeding tube put into her. What right do we have to play god? I see my mom sitting in her chair (before this past week) with such a sad frown on her face, shaking her head back and forth in a "no" position and tears showing in her eyes, looking at me and to me saying, "please, no more - let me die!". I am not her caregiver, my 88 year old father is with the care of daily case workers from CCAC. She has not "quality of life", said also by her doctor, so why would it be reasonable to put in a feeding tube? I am so sick with the decision made by my father and sister, that I almost lost my faith and it usually will get me through anything, but I cannot understand the why of it. I believe my father loves my mom, but in all honesty he needs her pension to continue to live in his home, and so he needs her alive, no matter in what conditions. So, please for those out there who are dealing with this issue of, "quality of life" consider your patient, not yourselves in prolonging their life for the good of money, fear of death or for any other reason.
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all i can say is i pray God helps us all through this road in life...just so sad reading everyones stories but how beautiful at the same time for the love you all have within your hearts...God Bless..
i am an only child and watched my dad go through his life journey almost 12 years ago as my heart broke everyday watching him slowly slip away from my mom "which was his care taker" and me... how i cried cried and cried and was strong enough to be there when he was in the hospital holding his hand with my mom by my side as he left us...even though i was married with 4 children at that time and had other family members in the room at the time of my dadi's passing(Thank God)i will never forget the feeling ...the trio we had between my beautiful mom,dad and i had been broken...i felt alone and scared even though i new i wasen't....my beautiful mom did a wonderful job careing for a man that gave us both the most beautiful life anyone could...God truly did bless me with two beautiful souls that i proudly call my parents..
Unfortunatley to my sadness my mom was diagnosed with dementia about 6 years ago and is now on her last stages...my husband has taken on the burden of working two jobs so i could stay home and care for my mom through her journey along with careing for my two youngest children"out of my six" horses, dogs,birds,turtle..24/7 day night night day it's just what i do because she deserves me too and i am blessed to be able too....my life has been revolved around trying to figure out what can i do? what can help her? on top of that my mom always suffered from anxiety but now it has just become uncontrolable" sad to say" spending hours n hrs n hrs talking to doctors, er visits, dr's, hospice dr's, ummm on the computer trying to find somethinggggg somethinggg that can fix this!!!! mentally and physically the desperation i feel isen't fixable so i finally break down exhausted and crying and say to God.......i'm sorry but my dad? and now my mom? i soul searched within myself and realized all i was doing is making myself sick and not being able to change anything due to destiny as my mom use to say to me" she believed that the day we are born is the day we have our destiny all written out to how it will be at the end and we need to respect that.This beautiful women is going to leave me due to dementia? and now what? so i have slowley tried telling myself that i can only do what i can do and the rest is in Gods Hands and hope to be able to keep it together and not let it scare me... Life is beautiful and death is inevitable...that's why" as my dad would say to me" life needs to be respected and never taken for granted..live life on the right road and or learn from your mistakes so at the end of your journey you can be proud of what you have accomplished and how u lived and loved....my mom is on her finall days and i do the best i can do keeping it together for her and for my family and myself. i will try to continue my life and live it to make them both proud of the job they have done in their lives.....and i say the same to everyone..May God keep you all strong and remember your not alone....xo
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My brother, with throat cancer, just got off of tube feeding. It was a temporary measure while he was on chemo and radiation treatments. That is a perfect use for that technology. I am not opposed to all tube feeding, but for persons with dementia and persons near the end of their lives there is no evidence that it improves the quality of life. Just the opposite if, as vstefans says, the person must be restrained from trying to pull it out. A feeding tube was twice recommended for my husband in the 10 years he had dementia. He turned it down both times and I supported his decisions.

The first time it was a young speech pathologist who recommended the tube. She explained why it was her recommendation. Hubby and I had discussed this before and were prepared with the answer, No. Only then did she say she respected that decision and she certainly wished that decision had been made for her grandfather.

I'm glad my brother had a feeding tube. I'm glad my husband did not. And having looked up the research on the subject, I think that patients are not given full information about the benefits and risks at the time they are expected to make a decision.
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Tube feeding is actually not helpful for quality or quantity of like overall in this situatin, though individual scenarios can vary. If there is a specific problem with swallowing, as from a brain stem stroke, it may make perfect sense; if a person with generalized loss of all functions will be more confined to bed or be agitated and pull a tube out if not restrained, that absolutely tips it over to be something to avoid, and is becomes best to just feed by hand as tolerated and desired - appetite may be very, very low - instead. I think it is terribly important to respect a persons wishes and focus on comfort and quality of life in a setting of advanced dementia.
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All of the posts have been very informative and helpful. My dad has Lewy Body Dementia, and total body atrophy. He is 83. Mom is 82 and also has dementia. These choices are hard to think about. I had to ok a tube insertion for dad through the nose into his stomach because he was having a hard time swallowing in the hospital. He was then fed pureed food in the NH. He is home and is now capable of eating (with help) and swallowing ok. The possibility of having to go the tubal feeding route again is hard to deal with, but the reality is that it might be a necessity that can help as it did for dad. However if the total ability to be cognitive of anything around them has ceased, I would decline that. We went through this with my father in law and he was angry that the family did not accept his choice to let go. He kept saying it was what he wanted, he was tired and ready, we kept trying to encourage him to eat etc, but have since realized that when they are ready, they know and want the family to let them go rather than prolong their discomfort. Is it selfish to encourage someone to hang on for our sake, or is it unselfish to allow them to go in peace knowing they have the love and suppport of family. We chose the latter for father in law and have peace with that choice. Now that my sister and I are faced with this inevitibility with mom and dad, as hard as it will be, we will respect their choice to "go home to the Lord".
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I feel your pain. I am having trouble dealing with similar issues myself. My almost 92 year old mother was living in a retirement home with my Dad until a few weeks ago. I could tell her dementia problems were increasing and did want Dad to seek some respite care for her. At the end of April he had a really bad week with her and checked her into the memory care facility next door for 48 hours but then proceeded to spend almost all of his time there with her. After the time was up he decided to bring her back home. 2 weeks went by but he had a bad cold and she was becoming increasingly disoriented was and thinking strangers had been in her room at night. So he took her back and was seriously thinking of making it permanent. Then I guess Mom decided for him as she had a mild Stroke on the third day. She now cannot walk although she regained use of her left arm and she has some movement in left leg but not enough for walking. Her speech never was affected, in fact the day of the stroke she seemed more aware than she did most of the time. Now I just feel bad. The place is nice and homey feeling and the caregivers are loving and good to everyone. It's just that the residents seem to just sit around and sleep all day. Some are constant wanders but no one talks more than a word or two. They do seem to perk up at meal times but show little interest in the other acivities offered. Mom has always been pretty social. Even now she is, but can't really carry on much of a conversation because her short term memorey is non-existent and has been for quite some time. The care givers are there if she needs anything but no one really seems to try and elicit much from any of the residents if they are not asking .

There is no way Dad could handle her anymore. Besides all the other things going on she no longer can move from place to place without a strong person assisting. She is becoming even more incontinent although that has been an issue to one degree or another for several years.
He has been visiting 3x a day but said he was going to cut back to 2x. He stays about an hour. She does know us and is happy to see us but has little to say. Sometimes she is adamant she wants to go home but other times not. I know this has to be but it is so hard for her. She was happier when she was living with my Dad. He has been her rock.
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I know that my wife will recall things from the past but will forget a few seconds ago,It is hard to tell which way they are going. I wish with all my heart that our children's would be a little like you. God bless and take care
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I notice Mom distinguishing between talking about her house and going home. When she talks about her house, she says it is where the family is. When she talks about going home, it's to be with her parents and Dad (all deceased). Causes me to wonderif it is part of her way of saying she is preparing to leave us.
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All I can say is so sorry for you both .I know that this is part of our life we did not expect. Please let us know how you are doing. Really big (hugs) remember you are not along in this heart break part of life .God Bless you and your family.
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My mum was diagnosed with vascular dementia in January 11, we knew something was wrong but mum refused to see a doctor. From being diagnosed mum's dementia accelerated, mum is now in an assessment centre for the last three months. She has not eaten for the last few months, drinking very little fluid e.g. 350mls a day and sleeps in her chair most of the day. Mum has developed a bed sore and staff have advised bed rest in a profiling bed, mum also suffers with vascular ulcers. Mum is no longer able to sit up, walk or stand independently and unable to open her eyes. Cannot put two words together. Staff are insistent that she is taken out of bed and put in a chair for at least 2hours a day, but all she does is sleep. My mum was a very intelligent lady with a tremendous sense of humor, we miss her so much. We feel so helpless not knowing if we should be doing something to rescure her from this living hell. Everyday are hearts break to see mum suffering so much.
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@Johnnycares - You will have to leave a will with a statement of DNR. I don't have children and it doesn't look like its going to happen. My family is distant and nonresponsive. So, I plan to do a will and just let it be.
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Dear Yellowfever,
You are describing what my mom went through and she died almost a year ago on May 26. By this time she was full time in the bed and of course had a hard time swallowing. She couldn't speak but when we looked into each others eyes we communicated just fine.

Please don't let anyone talk you into a feeding tube. It's traumatic and painful and like others have said, to what end?

I went out and got the Junior's Baby foods and would heat a little of that up and if it took an hour to get her to take some then that's what it took. Mom was not on any pain medication and was not in pain. She was as peaceful as one can be in the situation.

I did what Carol talks about in that I told her all the time how much I loved her and i would sit with her and hold her hand. I told her over and over that she was the bravest person I had ever met because she dealt with her Dementia with all of the grace and dignity a person can when they are taken apart by this disease.

The morning of the day she died I knew something was different but there was never ANY question in my mind that she would be DNR. I panicked for a moment and for the first time called Hospice. The two women who showed up were true angels and calmed me so that I could get up on the bed with my mom and hold her. When she died in my arms I stayed on the bed (she was in her pretty room at home) with her. The hospice nurses made no move to resusitate her because they have seen this many times and knew better than to prolong someone's agony.
I did not want to resusitate her because she was free at last.
She died peacefully and I have absolutely no guilt at being the one to make sure that she was released from this terrible disease.

When the mind and the body are finished here on earth it hurts those of us who are left behind, but you tell your mom that you will see her again in the blink of an eye...

Release yourself from this terrible disease also. You are a good and caring person. DNR.

lovbob
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Dementia forgets names.....my mom always knows who I am.
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for yellowfever, I think your mum is not quite in the last stages yet, she has come to the point where she needs help feeding and holding her drink, but if you give her a straw even for her tea she will manage ok, but make sure it isn't too hot as with a straw it goes to the roof of the mouth and would burn her...My mother went through a finger feeding stage then went back to eating with a fork, give her a spoon instead of a knife so if she struggles to use a fork she can use the spoon.
I think you have to watch when she swallows to make sure she does swallow once or twice when eating or drinking, try it yourself, when we have a drink we swallow the main drink then what is left in our mouth we swallow again, so watch out for that, if she doesn't then it will go to her lungs then I think is the time when you are going to need help and also make sure she is upright when eating and drinking.
You also have to look after yourself, because I had depression and Bells Palsy when looking after my mother before she went in the home. So be careful you still have your life, You can put her in a home without feeling guilty because you have done your best for her. I used to cry with the way my mother was it was as if she knew she was going down hill so would torment the life out of me, I would be crying to my friend on the phone and the social services till in the end they said enough is enough she must go in a home now or 'we' will have two people on our hands to look after.
I have my life back but no friends because she manipulated me before she had dementia I had to report to her every day or she would rant... always has been bad tempered. My computer is my best friend... Just be careful yours doesn't end up being your best friend. Live your life now, you can't live your life for your mother she has had her time and you have done your best... have a life while you are able to... Take Care
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Hi, My mother is now well. It seems she just had swallowed food and it had gone down the wrong way, but couldn't cough it up. The doctors risked her going into aspiration again to give her one last chance to be able to eat properly, and she did and hasn't stopped since. So I think this must have been going on for a long time when she was being treated for chest infections for the past two years. I have refused for her to go back to the home she was in, so she is in hospital till it is decided what kind of care she needs.
I would love to have her home but know I couldn't manage especially changing her as she is now incontinent both ways and if the hospital have a struggle keeping her clean then I know I wouldn't be able to. They are wonderful with her in the hospital I wish she could stay there. But they will need her bed eventually for someone who was in the same condition as her when she was admitted. And away from all the other people en-masse in the room in the home she is more concious of visitors or the staff and sometimes mutters words to herself but can't get what she is saying, she says thankyou for a drink or when fed she thanks the staff.
Mother isn't totally well but not dying now... they thought she was when admitted. She has to have her food pureed and her drinks thickened but on the whole she is fine.
Thankyou for all your comments and boosts for me..
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I myself think about how we all will wind up. I say this because like that old saying” We reap what we sow” If our children will not even call to see how we are doing or feeling at lease sometime once in a while.What about when our time come around? Who will have the answer as to DNR
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This decline is so hard to watch in our parents. I'd say that unless the doctor has another reason (medications that may be changed or something) that it sounds as though your mom is entering last stages (swallowing is one thing that goes). Keep telling her you love her and give her attention even if she doesn't seem to respond. On some level she knows you are you and loving her. You'll never regret this, even if she truly doesn't respond.
Take care of yourself, too.
Carol
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I use SF and Low Fat ice creams for Mom - diabetes and cholesterol issues go together. We use regular cranberry juice because the low sugar is too watered down,but I "spike" it with unflavored pedialyte. When we used just cranberry juice it did not help. The pedialyte has helped a lot to keep her hydrated.

Swallowing is an interesting issue - sometimes it seems it is difficult and other times she devours everything in sight. She will eat toast with something on it - so I have been blending up vegetables or mixtures of fruits with cream cheese, etc to put on the toast to get "better" food choices for her.

When I started caring for Mom 3 years ago she could not walk...I started getting her exercising and walking - started by her pushing the transport wheelchair so we had it in case she got tired. And had her walking a mile a day - we still walk but modified.

Mom seems to know deceasd family are deceased - she does not ask about where they are but talks about talking to them. Talking about my brother is recent. She rarely mentioned him at all until the last few months.
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P.S. I want to thank all that replied and I hope you stay strong and to let God help you get through the hard times.
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Hello, A month ago when I asked this question I was unsure about how fast this last stage of Dementia would drag along. WOW, to say that a month later, mom no longer walks and barely bears weight when I try to move her. She has been in the hospital with Sepsis due to another bad UTI. She no longer ever speaks more than a few words. She won't eat hardly anything. As of last week, mom is now on Hospice. If you could have seen her 2 weeks ago and then compare to what is going on now, its beyond day and nite in how fast the progression took hold. She can't really hold her head up and I am constantly straightening her up in her chair. She is starting to get tremors in her right foot and hand. She is retaining fluid, but on a good note her lungs are clear at present. If mom don't start to level out I honestly feel she won't make it 6 months to a year. Reality is really hitting me hard. Mom didn't have a living will so, with me being POA hospice of course asks the hard question rescuitate or not. It was hard for me to say DNR was my decision. I know mom wouldn't want to live on machines. Let God take her to a better place where she no longer suffers.
Pineapple and Boston I feel for the both of you and you are in my thoughts.
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