Hi, I am new to this site and I sit here reading everything and crying. I have had my mother going through this for over eight years now. I am one of six children but the others just sit back and let me do all the work, visiting at least twice a week, making sure she is eating, not in any pain, clean and well taken care of. I have one brother that tries but cannot handle it. She is in a wheel chair, babbles words that make no sence, is in diapers and cannot hold her head up too well anymore. She does eat good, but is constantly wanting food, mainly candy. You have to watch because she eats the wrapper too. I have her in a small home for demencia only, it has only at the most 20 patients. They are great and she is well taken care of. Right now the doctor took her off Zoloft and after two months of being off it she started crying all the time. I had them put her back on some of it, now she only cries when she sees me!! She is now saying my name once in a while, like she knows who I am, which she has not known me in over a year. When I try to pick up on what she said to include my name or some other remberence, she won't answer or does not remember what she said. She used to remember songs all the time now she cannot sing them. She sits and makes a humming sound and claps her hands but it has no rythem to it. Is this part of the end, starting to remember a little bit? This is so-o-o-o hard. Is she in p ain, can she see, can she hear, can she feel, does she sleep, does she remember???? Does she know??? She will soon be 88 and it has been a long hard road. I am really depressed, cry everyday as I am doing right now. She has her own teeth, what happenes if she gets an absess? Taking her to emergency is horrendous, they do not understand that she does not understand and is scared!!
Boy am I blabbing on and on.
Thank you for this website, it helps to read about all of you, that I am not the only one, which I knew I wasn't but you feel like you are.
Someone said to me at the alz. home. With caregivers you loose your loved one twice. The first time when they forget who you are and the second time when they pass away.
Happy Mothers Day

mball, i have just learned about the forums and chat rooms and have just seen your Mother's Day message. it made me cry because what you are going through is all of my worst fears. i hope you are finding strength and support. i weep for all of us and pray they will find a cure before we all reach that age. if you see this, let me know how you and your mom are doing. i see lots of viewing, but no replies. God bless you!

I've heard about Alheimer's. But now, it's happening to my Dad with my Stepmom and I am all he has to depend on. I don't know what to do or where to start. Diagnosis is Severe to Moderate Stage. HELLLLLLPPPPPPPPPPP!

dj & Theresa,
Plz re-post these in the caregiver's forum. You will receive SO MUCH more help there!

bb girl

My mom was bitten by a posion snake over two years ago, at which time she was in the hospital. While in the hospital she dislayed certain forms of behavior of which I have never seen from her befor. The nurses ask if she had alzheimers, we of coarse said no, but what they told us, is if a person with early signs of alzheimers is hospitalized for any time of trauma it will bring out the alzheimers faster. Which this is excatly what happened. My dad was very sick at the same time. Mom was bitten in July of 2005 and we lost my father in October of 2005. So she had a double trauma in a short period of time. She is 77 years old now, and she stays between one of my brothers home, my home and a sisters home. But this has just come about in the last six months. Before that she stayed most of time with me. When my father was dying he made me promise to take care of her. And I have been doing my very best to keep that promise. But it has been so hard and the road has been so rocky. She is on Aircept and nemend for the alzheimers, but they told us the most we could hope for was to stablize her memory. She remembers past things it is just the current things she cannot remember. My youngest brother, who has lived next door to her, and on the same property his whole life is the one she could not remember. To this day, she knows he is her son,( she calls him her brother as she does my other two brothers) But she cannot tell you their names.
The changes she is going through right now are starting to really scare me, I am starting to think she might be getting worse, she forgets to go to the bathroom and other things. I would like to know what the stages are and how I will know when she reaches these stages. I worked in nursing home for a couple of years so I am very aware of the things they do and how to care for them, but when it is your own parent it is extremly hard to do. I would love to be home and take care of her myself, but I do have bills and cannot afford to stay home with her. When she is at my house she says she feels safe.
I just needed to let a little off my chest. I am new to this site, so bear with me.

Hi,

I am new to the site too. How are you doing? How is your Mom? I can't give you too much help, I am in the same position as you but your mother is ahead of mine in stages, sorry! I mean my mother can still talk a little, phrases, and still knows me most of the time. I am like you, I read about the final stages, but no details are given.

I hope you have had some help from your family. I am a ear to listen, if you need it.

My dad has had Alzheimers for 7 years--he now is 80 years old and in a NH and cannot speak, walk, has no memory and responds to nothing. He can go for days and not eat, and then suddenly, when you try and feed him, he cleans his plate. He needs a lift to move him and is in diapers. I wish I could tell you it gets easier, but it doesn't. Just remember that when they don't know you, try not to take it personally--in their heart, they know who you are. When they get mad at you, it's not them getting mad--it's the disease. Lean on friends when they offer support. If you have siblings, comfort them and let them comfort you. And if you have to, go to a park or a quiet place and just get angry for a while. I'm only 38 years old, I have a little girl--my dad should not be like this. But I know he can't help it, and know your loved ones can't either. Hugs and prayers to you.

Hi Lisa,
I feel for you. My mother is 85 years old and has had been diagnosed 2 years ago. In 2002, my sister was in denial, I noticed my mother behaving strangely. She lived alone since my dad died in 1997. I had taken her to doctors and they kept saying nothing was wrong and I kept saying I think she has a form of dementia. Well my son age 17 was killed in a car accident in Oct. 2002 and needless to say I was too out of it to take my mother to any more doctors and follow through. My sister never bothered. It was at my son's funeral someone said to me, your mother didn't know who the funeral was for and I said yes she does, she went up to my son and cried and kissed him. But it was at the burial she got confused. Obviously I never noticed. Now 5 years later she is on Namenda since last July 06. SHe's much more agitated and she hallucinates again, (she has been hallucinating since dad died)...THis is a horrible disease. My mother is not at the stage your father is. She can still dress, and eat and go to the bathroom, walk around and get her hair done. She lives in Assisted Living. I agree with one poster you do lose them twice...it's very sad. Many times she's said to me, I don't know why God took your son, he should've taken me I'm older. It's hard for me because I grieve so much for my son, sometimes I think maybe she's right but she's here and alive so we have to make sure she's safe and being treated with dignity. It's not an easy disease. All the doctors want to do is give them more medication after medication. Sometimes I'm not sure about some of those meds, so she's only Namenda for the time being.

Sandi

Sandi,
I'm so sorry to hear of the loss of your son. It is hard to grieve and care for someone at the same time--my father-in-law passed away 5 days before we put my father in the nursing home. What a week--especially for our daughter. I just checked in on him and he hasn't eaten again all day and didn't even want my mother to touch him today, he kept pushing her away. Keep me informed and know I am thinking of you.
Lisa

Well, my oldest brother from out of state was home for a week, this is the first time in over a year he has seen mother. I think, he did not believe us when we told him how bad she had gotten. She still talks and walks and all that, but she has forgotten how to do a bath, which is very hard. And how do you tell your mother she has a body odor and needs to bathe. She wants to be with me all the time. She feels safe and secure at my home. And I would like nothing better than to stay home and care for her. But I need to work in order to pay the bills. When my dad died he made me promise to take care of her and I have done my best. She stayed with me for over a year and a half. Now she ask me if she can come home with me. She calls me mom, and my house she refers to as being home. I pray to God all the time to help me figure out a way I can be home with her and take care of her. Today has really been a tough day, I have to go to work in the morning, I leave about 5a.m. and she came to me with tears in her eyes and ask me if I get sent home early if she can come and stay at my house. Which I told her yes, and if I get sent home early one day or three days I will go and pick her up and she can stay with me. My heart just aches. She misses dad so much, and she knows he ask me to take care of her. I was with her when he died. She has started peeing and messing on herself now. And she has always been such a clean person, and what really bothers me is when she does this she tries to hide it from me and my sister. Well, that is about it for now, I just needed to sound off a bit. Thanks for listening.
Shelia

All of you should go to the CAREGIVERS FORUM on this site for incredible support and guidance.

can relate to all the situations above. mom is in moderate to severe alzheimers. although she still dresses herself, still uses the bathroom facility on her own, she will refuse to sometimes take her medications unless i stand there and personally watch her take them. she is usually pretty calm during the day, although i do have a problem with bathing, we finally get thru it as every morning she says or thinks that she has already washed herself. it is almost a battle with her every morning. afternon and evenings seem to be getting worse because of sundowning and she begins talking of wanting to go home. my sister and i share three months at a time with taking care of her, i am the only one that is with her 24/7. my sister works and her husband is at the house to watch her so she does get some relief. some days are so hard and i know it is not by any choice that she get very stubborn and wants to fight us on everything. don't know how long i can take care of my mom - i am 61 years old. there are 6 siblings and my two brothers and one other sister will take turns picking mom up on fridays and bringing her back on sunday evenings to give my sister and I a break. she is on some medication (seroquel - but don't really see that it's doing very much good. there doesn't seem to be much change that i can see. she sometimes gets defiant and we try and give her a xanax and sometimes it helps to calm her. thanks for listening i know that it will get worse rather than better, so for now we are trying to prepare ourselves because we know that she may soon need a nursing home environment. good luck to you all.

I don't know how this all works, so I'm just going to reply to some of these responses written some time ago I think. I could not stop crying. I have been going through so many of the exact same things/ feelings I've read on here and honestly, I dont know how I'm going to get through this. Is there a chat room where I can actually talk to live people? I guess I need a friend right now who really understands and from what I've been reading, all you folks know what's going on. My mom lives in Canada and I am in Florida right now, but she is with me, for a vacation. Little did I know that she is progressing so rapidly and I am alone, NONE of our family is here, I have Fibromyalgia, I just had my knees worked on and I need both knees replaced, I have severe depression, I was just recently divorced this past month, I am fighting disability, and I am still on chemo treatments for breast cancer. It's funny how NOBODY from our family can help. NO ONE. Everyone is so concerned about my mom, yet they don't ask how I am holding up. My father walked out on my mom 35 yrs ago and doesn't even bother to call to see how I am handling this. I feel like I'm going to crack and that's what scares me.
I now have to pack my things and move up to Canada to live wih her because no one else has time for her. Not even my only brother. He never calls to see how our mother is doing, and he's got 2 children that my mother just adores, she's already forgetting all about them even though I have pictures of them by her bed. I am devastated and hurt. Mostly my heart breaks every single day as I sit across from the table from her, watching her as she struggles with one hand, to eat, while the other one just lays on her lap. I don't know how much more I can take...but I won't put her in a home like my brother says to do. I can't do that, she will die sooner. How do you all cope? How?

Kelly,
To tell you the truth a laid in bed and cried today. Just sobbed as loud and hard as I wanted. My eyes are swollen like softballs now, but I feel better. Sometimes ya just gotta let it out.

The website here is great. Personally I also attend support group meetings in person. Here is the web address for your local alz assoc.

www.alz-tbc.org/

If you copy and paste that into your browser you'll go straight to them.

Come on over to the forum titled "Caregivers". You will find so many wonderful people there.

Hi. My name is Debbie. My mom is 77 years old. I am not sure what to call what my mom has. All I know is that she is going through something. She hears voices and talks with them. She honestly feels that these voices are real. You can not convince her otherwise. Two weeks ago me and my mom's best friend went to go visit her because we were really worried. My dad was under the impression that all was well with her but we had to let him know that she isn't fine. That she really sees and hears people. Just reading your story made me cry. I feel like the same person. My sisters are clueless. I mean I tell them what is going on because I am the one who gets all the info and its like hello do you really care. My mother's friend called me last night who lives in the retirement community and told me what has been happening recently and I thought I would just die. She has had an MRI and an EEG. But she is waiting for the results. I really don't know what to think. What do you think.

I know exactly what you are going through, my father is 92, and is going through the same symptoms. Sees and talks to his mother, whom has been gone for many years, and also to my mother (passed 2 years ago). I am new to this, my father just came to live with me in October, after living with one of my brothers, and a sister previously (we have been taking turns). The confusion he is going through is now becoming frequent, everyday, and sometimes he does not respond to my talking to him.

Well things only get worse, and I really do believe this. A week ago this past Saturday, mom was with me here at my house, she was helping me get super on the table, she had just put a dish of food on the table and turned around and headed back to the kitchen when I heard an awful sound like dishes rattling. She fell halfway between the kitchen and dinning room. My husband and I managed to get her up and in a chair, I could see blood all over her legs, I was trying to find out where it was coming from, she had cut her finger on something. The only thing we could figure out she tripped on her own feet, and went down, she complained of hurting in the rib area and her shoulder. Took her to the doctor, and thank god there was no broken bones.
But guess what that Thursday morning, it has gotten down to freezing that wednesday night. The next morning there was frost on the steps at my sister in laws, this is where she stays during the week while my sister and I work. She went down the steps to go out and down she went again. This time her whole rear end is dark purple. It was swelled up really bad, and she banged up her elbow and tored the skin off in places on the elbow. The worst part is she does not remember falling. She says it don't even hurt. I really don't think she can feel much pain at all anymore. I stay worried about her all the time. And I am so afraid she is going to break her hip or something else. I told her doctor I had been reading up on the different stages of this and that I believe her to be in stage seven and she looked at me and said yes she is progressing. They have her on two different types of memory pills now. Namendan 10 milgram tablets twice a day. And aricept 10 milgram tablets once a day. So she is getting a total of 30 milgrams a day. And it don't seem to be helping. Her memory is so bad at times. She will ask the same question at least 50 times a day. Now she is getting a little stubborn and irratable more often. She gets upset over some the simplist things. I have caught her washing her hands in the tolit stool, and gotten on to her about it. Trying to tell her it is nasty and not to do that. She shuts the bathroom door all the time, so you never know if anyone is in there or not. I really do hate to see her like this, it is so upsetting, This is not her, There are a lot of funny stories I could share to, but that will be another time. She says things now she would never have dreamed of saying before. Well, will sign off for tonight. Take care and god be with you all. I will pray for you
Shelia

hi mball,

i know how you feel. i cry all the time too. i feel lost and i feel frozen in time. how do i move on knowing that she is scared, or in pain and wont tell someone. i feel helpless and lost. she was the best mom you could ask for. she went to church 2x aweek believes in god. were is he now, why is she suffering so much. if there is god why does he make her suffer so. i want to believe so i can get through this , but its so hard. i feel really confused and lost.
mb

Hi - first time on this message board. My mother is 87, diagnosed for 10 year with alzheimer's, and lives with me. She is on hospice, final stage 7 (bedridden; can't talk; on pureed foods, very 'stiff' - head stays dropped, no/rare eye contact, no smiling (that was one of the saddest things, when she basically became 'flat affect' with no expression. She also is starting to get int the 'fetal position - very stiff in limbs, so can't stretch her arms /legs out any longer. Her food intake is probably down to 30% from what it used to be, and we just now started her on 'thicket', to help her swallow the pureed foods. After that (admittedly depressing) paragraph of info - MY QUESTION! We've discontinued many of her meds, but she's still on Allopurinol and Celebrex for gout in hands - when we've taken her off one or the other, she USED to have immediate flare ups with gout/painful hands.. The hospice is suggesting we discontue Celebrex now.. feels it just tears up stomach, and no point to it.. but I am thinking the combo has been working, so why change it? Any comments?

my mom is in the 7th stage and under hospice care. when mom entered the nursing home last fall, we said no meds as mom had never been on meds. we battled the NH re: meds, they were not adhering to our request of no meds. that was mom's request years ago. so, we moved her to another home. i checked her records and low and behold, they too put her on meds (9) against our wishes. they were not giving them regularily as she wouldn't let them and the side effects from these drugs stated they would be worse than the symptons they were treating for. well, since hospice took over, they took her off all meds and use a cream for the anxiety/aggression and a pain patch for her hip. she is so surene now and happy and not having to fight against the meds. hospice is there to let your family member go comfortably. not to continue to prolong life. they have listened to us and truly care for the patient. now mom's body is doing what mother nature intended. i cannot give you any suggestions, that is for the experts. i can only give you our experience.

Thanks, Linda B - I did get a chance to talk to the hospice nurse again, and now understand that due to her diet changes, and decrease in food intake, it is highly probable that there will be no repurcussions with taking her off the Celebrex - but if she does have a gout flareup, they'll put her back on immediately so she'll not be in ANY pain. She basically said the same thing you said - her body is shutting down, and the Celebrex might even be a detriment, causing her stomach upset. Anyway, I just want her to be comfortable, so we'll take it day at a time I guess. Thanks for the response! Bridget (aka BAMM)

bamm, you are welcome. all we want is for our loved ones to not be in pain, yet not have life prolonged with this terrible disease. that was our moms wishes 15 years ago, and she wrote it down on paper specifically. we think she had an idea back then yet she wasn't officially diagnosed till last fall. we had an idea 5 years ago. we have learned so much living with this disease. i found this website only a short time ago. so many things mentioned here are exactly what we have experienced yet so much of it isn't in the books to help prepare us for the daily living experiences and the idiosyncrisies(sp?)

I know exactly how you are feeling . . . EXACTLY as I sit here typing (and like you, crying the whole time). That last paragraph really started these tears a rolling, as I just told my husband Saturday, I have already lost my Moma. I knew the disease was progressing, but I had no clue she (MORE THEN ONCE) had not recognized Daddy. He is bad to keep things from me. I know he things he's protecting me, but he is NOT. My hubby told him too. This is a fine example of that. I won't go into details, but I find out that on Saturday Moma had no clue who that nice man in her house was. She tells me this as we are driving (yep I am behind the wheel) down the highway on our way to get pedicures for Easter. I totally lost it and had to pull over on the side of the road and try to get a grip. I live right next door, and am over there constantly and call constantly, but I am an only child, and they have never lived very far. We have not only been daughter, Father and Mother, we have always been bestess frends. (just the last 2 years they have been next door and that was kinda rough at times). I am a Daddy's girl for sure, and he's pretty controlling, ha! Drives husband nuts. He is 81, a retired Highway Patrolman, and Daddy's mind is sharp as everything, and physically he is in really good shape. My Moma is 76 and so pretty, you'd never know her age, no wrinkles everyone says, I will have to send you a pic of her. Everyone was fine until about 1 1/2 years ago, when I noticed a change in her. She could not get the words out, Gosh it must be so horrible for her too, knowing what she is trying to say and can't remember what it's called. Like the website said at first I just prayed and tried to live in denial, but although Doctor never said you have the disease, he put her on Aricept which at first she would not take, because that would mean she had it. My husband had a talk with her (she is crazy bout him) and she started taking em. I believe they recently changed her to Namenda. I catch myself saying the meds don't do anygood, but who know whqt kind of shape she'd be in if she'd never taken anything you know it? I am sorry to write so much; will quit now and try to sleep. I have horrible dreams, wake up and am up and down all night lately. I just miss my Moma. Hubby (Ray) gets mad and impatient with me telling me to suck it up and deal with it and stop being a child,but I am sorry there are gonna be days when I cannot, when I have a melt-down and when it should be all about me. This is one of those days. Sorry to ramble, but like you, I am just helpless, so sad and even mad. I want my Moma back. More later, ShaAnne