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    Old 01-12-2009, 01:40 AM   #16
    Happy1240
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    Smile Re: How do I go on?

    Quote:
    Originally Posted by caringsister54 View Post
    Dear Happy

    Please stay that way okay. We are all here for you kiddo so write often and then some.

    My mother came back to live in her own house in NJ full-time upon Dad's death when they lived in Pennsylvania. It was obvious she couldn't be alone then.

    Upon moving back in with her single daughter on her side of the duplex, I would overhear that they'd be at each other's throat. it was Mom's home and she wanted things done her way and Sister was on her own for about 7 years and got use to doing things her way! This wan't immediately in 1995 but more about 2002 or 2003.

    I forced Mom going to our Senior Center. It was a 4 hour a day place because each afternoon they'd go to a mall and mother said she didn't need to shop everyday. Anyway it gave them a break from each other since Sister was home and not working at this point.

    Then in late 2007, they started to tell Sister that she couldn't bring her anymore because Mother was getting harder to control and they're not set up to care for someone. They were just a big room that seniors could sit in and watch TV, sew, talk, play cards, etc. Mother couldn't do any of that.

    So Sister found a medical-run Day Care Center who would only take Mother 3 days a week because of a long waiting list. Mother went. But when it would take Sister 2 hours (with all the medicine and related fighting about it), she gave up taking her. Now we have a Bayaya nurse coming in one day a week for 2 hours so Sister can go to the bank and shop for groceries.

    the one thing I get mad about is that Sister gives choices to mother -- what she would like to wear, what she wants to eat, what she may want to do. If mother doesn't want TV on, Sister doesn't put it on. I try to tell Sister that Mother isn't really aware of what she's answering. So I'm trying in my own way to tell you -- Happy -- don't give FIL a chance to say he doesn't want to do. I agree with everyone. Simply have him ready when the bus comes and put him on it. You will find that the dementia will get worse. If you want to classify it full-blown ALZ so be it. You will find him losing more and more as each month that passes. keep a journal or notes of some kind
    on what he can do today, you'll see the changes soon enough.
    Yes I have noticed you cant give them choices. You cant even ask him if he is hungry cause the usual remark is "Well, no well yes. He also can eat like a horse! lol When I was at work my husband had make up 2 pounds of goulash. Went out of the room for a bit while I was at work and fil came in and ate all of it. He sure likes to eat! He is constantly snacking too. I guess its good he has a appeitite. Its remarkable if you didnt know him you wouldnt think anything was wrong with him. He is charming when he wants to be. He tries to make me out to be the bad guy when we are out and about with relatives. Saying she makes me do this she makes me do that and that is why I call her sarge. He does it to be funny. Everyone gives me credit for doing what I am doing cause they say its hard. One thing I have learned from here is I have to stop trying to "fix" him. That it isnt on purpose. Oh I should tell you a bit about him. He is 84 yrs old. More or less healthy. He fights me in everything I try for him to do to help himself. He has lasted longer I think because of me pushing him or he would just sit. I have him walking a mile in the park. It might take him a hr but he does it and for how long I dont know but I give him credit for even going. I tell him if he doesnt walk he will lose his walking legs. Move it or lose it I tell him. He looks forward to his walks now. Cant wait until the weather clears. He likes to boost to everyone how he walks a mile. He fought me in wearing depends. He would peepee on his pants at a restaurant and we would have to leave right away. I told him about depends and he goes those are embarassing. I finally said to him whats more embarassing wearing depends where no one knows your wearing them and cant tell you peed yourself or having the whole world see you peed your pants? Finally that sunk in and he wears them now without a fight. Now my husband says since he wears them he knows he can just pee in them and not go to the bathroom. But thats not true cause I have a timer on for him to go to the bathroom and he gets up and goes when it goes off. Its like a game to him. He does what I tell him to do. As you can probably can tell Im the main caregiver. Hubby just lets his dad do what he wants. He babys him. He will take his plate and leave it in the sink and when I come home I wash it. But when I am home during the day I make fil take him plates and have him wash it himself. I make him his meals or sometimes he goes and gets himself some cereal. I figure let him do stuff until he is unable. He forgets what year it is. His excuse is he doesnt write checks anymore and doesnt look at a calendar.
    It would kill him if he knew he has alz. His wife had it bad. They lived about 2.5 hrs away. When he put her in a nursing home up there he stayed up there by himself with a dog. Then she passed and we knew he couldnt stay up there himself so we asked him to move in with us since we had the room and the 2 daughters had kids and no room. We dont have kids just animals. So he moved in. We should of put him in a assist living right then. What a mistake. It is kind of hard to do now emotionally. There isnt a problem with my husband and him its with me. I get frustrated. Now that I have you guys I am hoping I can cope better. What a godsend you wonderful people are. God Bless you all. Its like a cloud has lifted off my shoulders.

    After reading some of your stories I have it easy right now. Why am I complaining??? Now I feel bad. Here I am ranting when I have it easy. I am happy I have friends now. Yes the internet is fantastic! You get to meet people all over without driving.

    Take care my new friends!

    Cheryl

     
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    Old 01-12-2009, 10:54 AM   #17
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    Re: How do I go on?

    Cheryl my dear,

    you are an absolute delight. And your father in law is lucky to have you. You should meet little deb. You would like her. I would where she has gone. She has her dad at home and cares for him

    Keep your chin up, keep posting and we'll pull you along. Oopps! We forgot. Here's your towel. Hang on, we have the other end and will pull you up when you need help. IT's an all purpose towel. Holds lots of tears, washes well-only comes in two colors-red and purple-Deb and I chose the colors. It the best support we can give you...and when you are making an *ss of yourself, we will snap you on the butt with it also....welcome to Planet Alzheimer.....

     
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    Old 01-12-2009, 01:52 PM   #18
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    Re: How do I go on?

    Hello Cheryl, I'm coming in late on this thread but wanted to say my Hello and welcome. My Mom has dementia and she is 82. She is in assisted living. You have already met some of the wonderful people that help keep me putting one foot in front of the other in this battle that we will eventually lose. You have come to the right place as you can see.

    I want to tell Petal how sorry I am for her and her Mom. Her post brought tears to my eyes. Her poor little Mother.........this horror of a disease is putting families through a living hell. God help us.

    I took care of my fil when he had cancer. It was only for a few months and it was very hard on me. I was his caregiver for the most part. He didn't want his son to do the things I had to do. Anyway, my hats off to you Cheryl. Its a hard road ahead of you. Glad you're here with us. Its a terrible road if its traved alone. You're not alone anymore. Again welcome.

    Love Chris

     
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    Old 01-12-2009, 05:07 PM   #19
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    Re: How do I go on?

    Wow so many friends here. Amazing. Thank you for letting me into your group. I wish I would of found it sooner. But now we are here. Took fil to the dr for his checkup after his stay at the hospital for his strained neck. He says the same things to these girls. He is a charming man. Very flirty. Talkative. You would never know he had a problem. He knows he forgets things but when everyone talks about his wife when she had alz. he says I hope I dont get that. Yikes. He doesnt know and not going to tell him. It would kill him. So let him be charming. Now that I know for sure he just isnt "acting" doing the things he does I hope this will help me cope.

    Your a amazing group!

    Cheryl

     
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    Old 01-12-2009, 05:27 PM   #20
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    Re: How do I go on?

    My Mom says the same thing. "Bless her (or his) heart they have ALZ or dementia. I'm so glad I don't have that horrible disease". Its amazing isn't it? I guess its how the human being copes. Mom would never want anyone to tell her what is wrong. She told us girls for years never to tell her if she got either one. So we don't. When she asks me "whats wrong with me"? Simple......I tell her its her age and shes on so many different meds that it mixes her up. She accepts that explaination and it makes her feel better. She knows something is wrong. She just wants to live whats left of her life without that "dirty" word. Thats what she calls ALZ "dirty or filthy". I guess thats the worse word she can think of..... DIRTY!!!

    She is something else and a bag of chips!! Thats what my Granddaughter says.

    Love Chris

     
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    Old 01-13-2009, 01:01 AM   #21
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    Re: How do I go on?

    Each stage of the disease has it's own frustration Happy. We also learn as we go. So there is not a point at which it is easy. My grandmother had ALZ and I remember it so well. She had a caregiver that lived with her at home during the week but she stayed with us on the weekend.... until she went into a nursing home. Several of Mom's Aunts and siblings have also had ALZ. Then my Dad was diagnosed with Vascular Dementia and MOm became his caregiver. Now Mom has ALZ.

    She read the reports from the doctor that explained her cognitive impairment in very specific terms. Then she forgot all about it. Nine months later she read the follow up reports. Then she forgot about that too. Just today, she went down to wellness and chewed out the staff. When I called she said... "They don't listen to me. They act like I have dementia or something." How can you not laugh at that. Mom can absolutely be a charmer. A neighbor called her this weekend and then called me. He was amazed at how rational she sounded. When I had him repeat some of the things she had said I just laughed. He did too when I explained the reality of what he thought was so rational.

    You have done well Happy. They do better when you just give them a routine with few decisions to make. It does not good to argue with them. If they don't want to do something just wait a few minutes. They will forget they didn't want to do and go right along with you. It is good that you have him walking and helping as long as he can. He sounds like Dad with the Cereal and the eating. We laugh and say Dad's full button is broken. He eats and eats and eats. When he was at home the only think he could figure out how to fix himself (he never could cook) was a bowl of cereal and we frequently heard him between meals fixing a bowl of cereal.

    Mom gave up anything that has to do with their financials easier than anything else. Perhaps because that inability hit her first. She was a bookkeeper all of her life keeping multiple sets of book for different people. Now, she can not even count. She was trying to tell me how many puzzle pieces were put together and she got confused after 7. Now she just tells anybody that mentions money.... that they have to talk to me. She doesn't have any money because I have it all.

    My only regret with Mom and Dad is that we didn't get them into AL sooner. I think it would have been easier on all of us if we had. But we gave our best effort to keeping them both at home. Then we learned better. They are where they need to be. Despite the fact that Mom swears she hates it, when in fact she hates that she doesn't know what is wrong with her world, they are doing so much better.

    So type often. I have a towel for you as well and I will hang on to the other end. That way we both stay upright!!! You better watch IBake... she's accurate with those towel pops. We are so glad you found us and know you fit right in. I look forward to hearing much more about your dear FIL.

    I have thought of little deb often lately and wonder how she is doing. This internet thing is amazing. It still fascinates me how close you can get to others you have never laid eyes on.... and how you miss them when they are not here. Wish little deb would pop in and give us an update...

    Love, deb

     
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    Old 01-13-2009, 12:51 PM   #22
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    Re: How do I go on?

    I miss little deb too. I wish so much she would check in. I miss her humor. What a funny lady. I wonder how Dads "big fat stupid dog" is doing? No pressure I know but we can hope.

    Love Chris

     
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    Old 01-13-2009, 04:26 PM   #23
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    Re: How do I go on?

    Quote:
    Originally Posted by Drews Gram View Post

    I want to tell Petal how sorry I am for her and her Mom. Her post brought tears to my eyes. Her poor little Mother.........this horror of a disease is putting families through a living hell. God help us.

    Love Chris
    Thank you so much Chris! (my daughter's name also!)

    It grieves me to see so many here starting down this same path...there are just so many different things that lie ahead for all of you with a loved one beginning this disease. Seeing the frustration and sadness I had so long ago makes me hope I can ease the burden just a little...and now I've found myself near the end of this journey with Mom. My attitude and understanding is so different now...I read posts of similiar situations and surely understand the frustration! I can't say "it will get better"....because it won't until our loved one is gone...but in the end, the pace is just so different. Somehow, we seem to know we have to accept what's happening...and simply look back and wonder how we ever made it thru.

    Sending love to all my friends here.......Pam

    Last edited by petal*pusher; 01-13-2009 at 04:27 PM.

     
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    Old 01-13-2009, 11:13 PM   #24
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    Re: How do I go on?

    And I for one appreciate the hind sight of all those that have preceeded those of us who are just starting or in the middle of this frustration journey. You are the ones with the clear prespective that is not clouded by the moment. You are the ones that know the out come before we start. Bless all of you that have stayed..... you are the ones that gives us clarity and strength. You are the ones that let us know that we can make it to the end.

    Love, deb

     
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    Old 01-14-2009, 01:20 AM   #25
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    Re: How do I go on?

    Boy it was a bit bad yesterday. He came back from opc in a "pissy mood" of course he didnt notice but I did. Which of course set me off. It seems he knows when Im going to work when this happens and when I have a busy night. I stepped back from the situation and thought about you guys and what you have told me. Its not him. So I went back up to him and talked to him about things. He probably wont remember what we talked about but maybe he will. Maybe he will get bits and pieces. And after thinking about it also his schedule was a bit mixed up. Hasnt gone to opc for about a week and a half and by him going maybe triggered something. He doesnt do well with changes. I wish I knew what stage he was in. Who knows really how long he has been like this. He moved in with us about 3 yrs ago. Didnt notice anything right away but when I did I had him checked out. That is when we found out he had frontal lobe. Thinking about things now I can see things in the past when he was living by himself that makes more sense now of why he did things. Ok going back to yesterday. Ok he was pissy yesterday and now I expect today he will be in a good mood. He will get up and say in a deep voice "Good MOrning!" like nothing even happened. He almost seems normal.

    After reading all your posts now I think you guys are angels. I dont know if I can do this. I get so mad at myself for acting just like him at times. I should be a better person. I feel horrible at times for treating him like I do. I do alot for him to help him. But feel frustrated. If I knew back then what I know now we should of put him in a al right off the bat. Hard now. He loves our animals and seeing him with them and him not seeing them in the al is hard. Hubby is in la la land with his dad. Babys him. Which of course fil loves cause he is center of attention. He is more childlike now it seems. He goes from charming to childlike. He knows when to put the charm on. He is better with the women than the men. lol Ok Im rambling. I love it here so much I can just talk and talk and it seems you wonderful angels know exactly everything I am saying. But of course you have been there already. But it seems you have handled it ALOT better than I. But now that I know more about this disease I can hopefully handle it better.

    have a good day my wonderful new friends,

    Cheryl

     
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    Old 01-14-2009, 02:50 AM   #26
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    Re: How do I go on?

    Dear Happy
    While it may have been easier to put him in an AL sooner or later you'd have had to make a difficult decision to move him into a NH as he would be unable to care of rhimself down the road anyway.

    So whether the decision is now or later, it would be difficult.

    You are just starting on the road and take it from all of us, you will not be able to handle this in the near future. His losses may occur fast or very slow but he will lose things nonetheless.

    IMO, you need to address your needs to meet his now and align resources. If that's a NH, find one and start the processes with the doctors.

    I see the drain on my sister with my mother. Sister doesn't sedate mom all the time saying it causes her to lose the ability to eat, and also makes Mom have more opportunity for falling, etc. But there's other things going on there that will be for another post.

    For now, our thoughts and prayers are with you but I see what you are dealing with and realize that was my mother 5 years ago.

    take care
    CaringSister54

     
    Old 01-14-2009, 09:41 AM   #27
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    Re: How do I go on?

    Quote:
    Originally Posted by caringsister54 View Post
    Dear Happy
    While it may have been easier to put him in an AL sooner or later you'd have had to make a difficult decision to move him into a NH as he would be unable to care of rhimself down the road anyway.

    So whether the decision is now or later, it would be difficult.

    You are just starting on the road and take it from all of us, you will not be able to handle this in the near future. His losses may occur fast or very slow but he will lose things nonetheless.

    IMO, you need to address your needs to meet his now and align resources. If that's a NH, find one and start the processes with the doctors.

    I see the drain on my sister with my mother. Sister doesn't sedate mom all the time saying it causes her to lose the ability to eat, and also makes Mom have more opportunity for falling, etc. But there's other things going on there that will be for another post.

    For now, our thoughts and prayers are with you but I see what you are dealing with and realize that was my mother 5 years ago.

    take care
    CaringSister54
    Thank you caring. Im going to talk with hubby about everything again since his dad is getting worse. Is there a way to see what stage he is in? I know he is mentally getting worse but dont know what stage. How can I tell?

     
    Old 01-14-2009, 10:13 AM   #28
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    Re: How do I go on?

    If your fil is a veteran maybe he could go to VA home.In a VA home he would pay based on his income.Good luck!!!
    __________________
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    Old 01-14-2009, 10:26 AM   #29
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    Re: How do I go on?

    Cheryl,

    Check the stickies at the top of the board. There is a good list of what stages are and also what activities there are for Alzheimer patients. A good book to read is "The 36 Hour Day". But a quick reference is right at your finger tips at the top of our board....

     
    Old 01-14-2009, 10:58 AM   #30
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    Re: How do I go on?

    this is from another post put out by a wonderful individual named AngelBear. I put it here just for your convenience since you may not understand where the others were trying to have you look. Good luck


    7 Stages of ALZHEIMER'S

    --------------------------------------------------------------------------------

    Stage 1 - NO SYMPTOMS OF ALZHEIMER'S ARE SEEN.

    Stage 2 - FORGETFULNESS: Very mild cognitive decline. For example, problems such as: vagueness of where familiar objects are, complaints about not remembering well, forgetting names once well known. There is however, no loss of abilities in social interactions or in employment situations.

    Stage 3 - CONFUSION EARLY STAGE: Mild cognitive decline. For example, problems such as: getting lost when traveling to a familiar location; noticeably lowered performance level at work; trouble finding words and names; little retention from reading; little or no ability to remember names of new people; loss of valued objects and trouble concentrating.

    Stage 4 - CONFUSION LATE STAGE: Moderate cognitive decline. For example, problems such as: decreased knowledge of current and recent events; loss in memory of personal history; decreased ability to handle travel or finances; and inability to perform complex tasks. Appropriate responsiveness to outside stimulation decreases sharply. Denial of any problem, and withdrawal from challenging situations are common.

    Stage 5 - DEMENTIA EARLY STAGE: Moderate severe decline. For example: the person can no longer survive without some assistance. Patients can't remember names of people or places in their lives. They may be disoriented about time and dates. However, they will require no assistance when using the bathroom or eating, but may need help getting dressed.

    Stage 6 - DEMENTIA MIDDLE STAGE: Severe cognitive decline. For example: the person may forget the name of the spouse and be unaware of events in his or her life. They are entirely dependent on others for survival. They may have trouble sleeping in a regular pattern.

    Stage 7 - DEMENTIA LATE STAGE: Very severe cognitive decline. For example: all verbal abilities are lost and he or she needs help eating and using the bathroom. Eventually they lose ability to walk, the brain appears to no longer be able to tell the body what to do.

    ----------------------------------------------------------------------------------------

    Level 1 NO COGNATIVE DECLINE: No subjective complaints of memory deficit. No memory deficit evident on clinical interview.

    Level 2 VERY MILD COGNATIVE DECLINE (Age Associated Memory Impairment):
    Subjective complaints of memory deficit, most frequently in following areas: (a) forgetting where one has placed familiar objects; (b) forgetting names one formerly knew well. No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern with respect to symptomatology.

    Level 3 MILD COGNATIVE DECLINE (Mild Cognitive Impairment):
    Earliest clear-cut deficits. Manifestations in more than one of the following areas: (a) patient may have gotten lost when traveling to an unfamiliar location; (b) co-workers become aware of patient's relatively poor performance; (c) word and name finding deficit becomes evident to intimates; (d) patient may read a passage or a book and retain relatively little material; (e) patient may demonstrate decreased facility in remembering names upon introduction to new people; (f) patient may have lost or misplaced an object of value; (g) concentration deficit may be evident on clinical testing. Objective evidence of memory deficit obtained only with an intensive interview. Decreased performance in demanding employment and social settings. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms.

    Level 4 MODERATE COGNITIVE DECLINE (Mild Dementia):
    Clear-cut deficit on careful clinical interview. Deficit manifest in following areas: (a) decreased knowledge of current and recent events; (b) may exhibit some deficit in memory of ones personal history; (c) concentration deficit elicited on serial subtractions; (d) decreased ability to travel, handle finances, etc. Frequently no deficit in following areas: (a) orientation to time and place; (b) recognition of familiar persons and faces; (c) ability to travel to familiar locations. Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawal from challenging situations frequently occur.

    Level 5 MODERATELY SEVERE COGNITIVE DECLINE (Moderate Dementia):
    Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouses' and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

    Level 6 - SEVERE COGNITIVE DECLINE (Moderately Severe Dementia):
    May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and, sometimes, forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will be able to travel to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include: (a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror; (b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities; (c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur; (d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.

    Level 7 - VERY SEVERE COGNITIVE DECLINE (Severe Dementia):
    All verbal abilities are lost over the course of this stage. Frequently there is no speech at all -only unintelligible utterances and rare emergence of seemingly forgotten words and phrases. Incontinent of urine, requires assistance toileting and feeding. Basic psychomotor skills, e.g., ability to walk, are lost with the progression of this stage. The brain appears to no longer be able to tell the body what to do. Generalized rigidity and developmental neurologic reflexes are frequently present.

     
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