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She is already later stages. But is she now entering the last stage? I know everyone who suffers with dementia declines at different rates. I have read all about the stages of Dementia. But I would like an opinion, from personal experience.
This is what is currently going on over the past month: Mom is sleeping 12-13 hours at nite and even dozes during the day(3 months ago the woman would only sleep 3-4 hrs/day). Now I have to force her to wake up in the mornings. She used to drop her pants and go to the bathroom anywhere. Now she has no clue that she needs to use the bathroom. I have to force her to sit on toilet. I have noticed that she wants to hold her urine.(she had a severe UTI a few months ago and now her dr tests her every month for an UTI). Mom up until recently was out of control with her anxiety. Now she is very calm and relax almost showing no facial emotion! She really doesn't even want to talk.I have noticed that she is having trouble eating and drinking. Not that she is having trouble swallowing,but is unable to hold her sippy cup right or figure out how to feed herself. She looks at utensils like they are a foreign object, I have tried finger foods (especially sandwiches)and she can't seem to know how to pick them up and eat it. She is also begining not to know her surroundings or who she is. Its not that she is confused, she just doesn't know. Her gait is getting really bad at this rate I don't know how much longer be able to take her out without use of a transport chair.
Mom has hit bumps in the road before and bounced back to a degree. But this time it feels different. If she is moving into the end of Dementia I would like to know what to really start watching for and what to expect? I want her to remain at home for as long as she can. If she is now entering last stage of Dementia, does she have months or years before I need to consider placement outside of her home?

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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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Reply to Carol Bradley Bursack
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I have watched my mom's gradual decline for the last 3 .5 years after having a TIA. I suspect she had beginnings of dementia earlier than that, but she seemed to be functioning fairly well. Is your mom on any medications for Alzheimers, such as Aricept and Namenda or Excelon? One of these or both of these meds can possibly slow down her decline. You should decide if you want to treat her with these meds. If she is unable to eat and know what to do with the food in her mouth, she may not be getting enough calories which could be leading to more sleep, lethargy and speed up her decline. This IS the normal process of later stage dementia. You can choose to supplement her food intake with Ensure plus, Boost Plus (350 calories day), 4 x day if she isn't able to take in solid food. The longer you prolong her nutritional needs, the longer she will survive, but to what end. You have some decisions to make concerning how much you are going to supplement her food intake. Also, please, please think about whether you would insert a feeding tube in her PEG line if she refuses to eat. I was not prepared for this decision when the time came for my mom. I did not accept or recognize that she was at the end of her life, even though she was frail, totally dependent on a caregiver for everything, walked with walker with great assistance. One day she just refused taking anything orally. I was so afraid that by not taking in water, and her medication, she would die. I did not recognize that it was her way, and the disease process of shutting down. 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. So, your mom can stay in her home. She may refuse to walk, and become very heavy to transport or even move to a wheelchair without two people. You cannot predict how long your mom has to live. You have to make decisions as to what interventions You are going to do to prolong her life. This forum can be of help and research for yourself on internet last stages of dying, and get info. God Bless.
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Reply to Helensw
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There comes a time that you have to respect the patient's wishes even thought it may not seem the right one for the caregiver. Alzheimer patients are still human beings even though they can't think for themselves at later stages. But if it gets to the point that the patient does not want to take anything oraly, it is the person and the body telling you, it wants to finish. You can't force anyone to live against their will if their body is giving in and is ready. You even said it yourself, "there is no quality of life". Isn't quality of life more important than quantity? I know there is a fine line between love and greed. There are books out there that will help you understand that when its time to go, let go. I would never take it to the extreme of making mom live against her will. If she is yearning to pass, and I am the one forcing stuff down her throat to keep her alive, I am not being respectful of who they are and what they want. You have to give these people respect. Once an Alzheimer's patient refuses to eat, yes it is very close to the end if not the end. It would be time to take her to a hospice at that point so she can die with no pain.
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Reply to bostonterr05
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This is very hard, and very sad. I can't help but comment that no one who can walk should be required to just sit and no one who does not need diapers should be required to have them. It sounds like a real "cookie-cutter" type of program they had going, and is far from best practice! Some places don't seem to think it matters, and if there is any choice (I know sometimes there isn't) its best to find soemwhere that does things differently, focusing on maxiizing everyone's quality of life and activity level as much as possible.

And...this is even harder...but in most cases, long-term tube feeding is non-recommended for advanced dementia. For acute stroke, for some other swallowing problems, yes, its a great thing, but overall the impact on quality and even quantity of life in most studies for people with dementia has been either nil or negative. This may be because restraints are more often required, and the more time spent restrained or in bed the more risk of sores, pneumonia, and sepsis. Though I also think the doc is right about DNR for someone who is so frail and ill like Lily's mum, but also, it should be a family decision and not implied that they would not respect your wishes if you requested otherwise. God bless...
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Reply to vstefans
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Dear Yellow Fever,
I know what you are going through. It is difficult having the responsibility of your mom's life in your hands. When I told the docs to feed her with a feeding tube, it was out of guilt that all of a sudden I would give up on saving mom. I had worked so hard to keep her safe and in her own home. I couldn't not feed her.
But,looking back, it did nothing to improve her life. I have had many quality moments with my mom these eight months that I would not have had, but, looking back I would not do that again. Still today, I will be in the same situation of deciding to intervene if she gets sick, feeding tube comes out, whatever. I did get a DNR in place now. Somehow you have to talk to your friends and family and feel you are doing the best you can with mom, and prolonging her life just for you to have more quality time, if that, would not be in her best interest. You and I will always feel guilt and question if we are doing the right thing, feeding her artifically, or whatever. In the long run, it is God's decision when he calls for them, and we really have to accept that when it is her time to let her go.
I hope you stay strong and know that many of us are experiencing the same gut wrenching decisions. Take care, Helen
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My mum has been in a home for nearly 3 years, she lost the ablitiy to walk because they are made to sit down all the time. yet she used to wander when she went in, They put her in 'pads' large nappy or diaper to 'keep her dignity' yet she wasn't wetting herself but you could try these on your mother, it is no different to changing a child but you do it with them standing up.
You the carer are telling her what she can and can't do so she is going to turn against you. Been there myself.
My mother is now in the last stages of Vascular Dementia, I don't know how she is hanging on. Last week she was admitted to hospital because she had vomitted and some had gone into her lungs as she couldn't clear her throat, she has been having her food pureed for some time now.
My mum has been put on a sugar and salt drip for the past 5 days and tomorrow they are going to try to put a tube down her nose to her stomach to give her some form of nutrition. As she now cannot swallow properly without liquid going into her lungs. Yesterday I went into the hospital to find she had conjunctivitis in her eyes. Thrush in her mouth and inside her nose is white? from the oxygen she is having all the time. I have to face facts I don't think my mother is going to come out of hospital alive. In fact yesterday after seeing her I came home and cried but today she seems brighter.To me this is the final stage of Vascular dementia when she can't swallow and has to rely on a drip. When she was admitted last week the doctor told me. ''What ever you say I will not change my decision, Should your mother stop breathing we will not resuscitate her as it would mean needles in her neck and groin, heart massage or pumping on her chest and it would only prolong her agony for maybe it to happen again shortly afterwards'' So I agreed my mother is 85 I love her dearly and have been there at the hospital twice a day, There is only my son and myself to visit her so we do have to come home to rest or I would be there all the time.
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Reply to LilyChris
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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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Reply to Lindipan
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Helen and Lilly, I am so sorry to here of your mothers. Placing mom in a home is my worst fear that she will be treated less than human. I don't care what an elder's condition is, No place should treat them as non-exsistent and non-important people. For a brief period in my life I worked in a nursing home. That place was HELL on earth for those patients. I wouldn't put my worst enemy there!! I morally couldn't work in a place like that so I quit within 2 months. I have seen those that could walk forced to sit all day, or giving medication for sediation. ones walking around in soaked diapers and soiled clothes. Its so sad that these places go on to exist!!
I have wore depends on my mom for over a year or so now. Just as precaution, she occasionally had accidents. A while back ago she had the need for adult diapers at nite. But I guess now her sensation of "when" to go is fading away. I don't mind changing her depends. But I feel so bad for her, especially when she realizes why I am changing her. She looks at me so sad. I have given my mother ensure and what not. I am concerned of weight loss. She has always been a petite woman normally weight 90-100lbs. So I know any weight loss can mean trouble. She has been taking Namenda and Aricept for 2 yrs now. I have noticed her decline is more slight than a friend of her's who also has dementia and not taking anything. Which I feel for this woman, her family don't see no sense to give it to her. Isn't that sad??? I have spent the last 2 yrs taking mom to different dr's and trying to get a right combo of meds for her. I finally got a good dr who got mom good meds to help with her anxiety along with the dementia. But I feel that maybe I took to long to find this doctor. Which makes me feel guilty, like I should have tried harder. I just want mom to have the best quality of life till the end. There is many times that I wish mom would decease before the Dementia completely takes over. That she may go in peace with no suffering, without tubes and bed-ridden. She told me a while ago that she told God she was ready, when he was. However, she has no living will and is not able to understand what that means. So, since I am POA when that time comes I know she would want DNR. But, that means I will have her life in my hands, and have to verbally say DNR, I know I will feel some sense of guilt if I did right thing and how am I going to live with that???
I tend to worry about mom on a day to day basis. However, with this new transition phase I need to focus more on whats coming in the future.Whether its months or years that day is going to come and I need to be prepared!!
thanks for your comments!!
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Dementia forgets names.....my mom always knows who I am.
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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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