It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board

  • I am new here and want to talk

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 07-18-2009, 10:51 AM   #1
    yutena
    Newbie
    (female)
     
    yutena's Avatar
     
    Join Date: Jul 2009
    Location: DFW, Texas
    Posts: 7
    yutena HB User
    I am new here and want to talk

    Hello, hope ya'll don't mind my railings, but I need support.. Long story - but then, who doesn't have a long story

    My Mom, 76, has been in decline for about a decade now with dementia.
    It started as simples as forgetting place names and peoples names.

    Aug '05 -Four years ago she was diagnoses with Dementia to complicate her already present diabetes (which she adamantly denied having so she ate poorly and didn't take her mediacation) and heart condition. At that time she lived alone in a 2-story house. She fell in her bedroom and was unable to get up. She stayed there, on the floor helpless, for three days until her neighbor/housekeeper found her. After 3 month hospital stay /rehab, the doctor recommended assisted living and quit driving. She said she was fine.
    Refused to give Power of Attorney, no living will, etc.

    Myself, the youngest of 5 siblings (only child of her 3rd husband - she left the other kids with their fathers, grandmother, etc.) became estranged when I insisted she take care of herself. I have 2 young children, one with special needs (autism) and a husband. Didn't need the drama so I left her alone according to her wishes.

    Two years ago, she almost ran her car into the front window of a 7-11. She had no recollection of where she was or where she was going. After a brief hospital stay she was sent home by herself and had her license revoked.
    Still no Power of Attorney.

    The truly angelic neighbor continued to care for my mom and her duties increased. She began to make sure Mom took her medication, did grocery shopping, took her to dr appoitments and eventually wrote checks for Mom to sign because utilities were being cut off. It is by the grace of God that this woman took care of her and not clean out the bank account while she was at it.

    Fall of 2008 - Mom began to be fecal and urinary incontinent. Starting wearing depends in the spring '09. May '09, Mom started to fall...daily. One of these falls, the neighbor was unable to help Mom up so called ambulance. At this point the neighbor was helping my Mom upwards of 5-6 times a day with medication, meals and bathroom duties. A 3 week stay in hospital resulted in diagnosis of NPH with a CSF shunt being put in. She asked for dead relatives to take her home. She scored around 16 on MMSE. Too late for power of Attorney. I, as next of kin, give medical consent.

    She was released on Medicare rehab. After 4 weeks, medicare stopped because she wasn't making any progress. She quit asking for dead people to take her home, but wanted to go home nonetheless. She denied needing assistance to walk despite being in a wheel chair or going to the bathroom despite having poop in her pants as she said it. Her MMSE score dropped to 12.

    She needed to be sent to a long term care. We had not power, she would not go. We were looking at having to call adult protective services because legally my hands are tied. Guardianship is out becuase of her estate (long story)

    My Aunt, her sister, manage to get Mom to consent to put her on the checking account and we got her to sign her long term care insurance claim form and we drugged her up to go to the new facility.

    She was admitted to an Assisted Living for AZ and Dementia on July 1. Her MMSE is now 7. She adjusted better than anyone expected. Mornings were rough, but in the afternoon she would talk to people, crack jokes, etc.

    However, starting on July 9th she has become beligerant to the staff - using the F bombs at will, baracading herself in her room and smearing feces around. Calls everyone ****** and has hit some staff members.

    By July 17th they upped her Haldol dose to 2mg 2x a day and it is finally having an effect. Psychiatrist took a look yesterday and she was unable to answer ANY of the questions on the MMSE. Psychiatrist, Doctor, Nuerolgist, AL Nurse all agree that the shunt is operating properly. Psych say she is now in stage 7 dementia. She has all the critera for stage 6 as listed on this board. They are going to let the new scrips do their thing (HAB, and Seraquel) for a few weeks and do some more evaluations.

    Wow.

    My Aunt is coming up (she lives 9 hours away) to decide on final stuff. What do with house, belongings, money, etc.


    She has lost a lot of weight - she was on hunger strike at rehab and started eating again with anti-depressants. But she picks at her food.
    The last 2 visits she knew I was someone familiar but no recognition as to who I am - just vague insults, nothing to indicate that she was insulting her daughter. I understand now that was the disease talking so I am handling it...ok. From what little I have read, my mom is textbook dementia.

    How long does it take once you are at this stage, before it is over?
    I pray it goes quick. PLEASE say I don't have YEARS of this to endure. For her and MY sake.

    Thanks for reading.

    --Yutena

    Last edited by yutena; 07-18-2009 at 11:00 AM.

     
    The following user gives a hug of support to yutena:
    luyingjie (01-25-2012)
    The Following User Says Thank You to yutena For This Useful Post:
    luyingjie (01-25-2012)
    Sponsors Lightbulb
       
    Old 07-18-2009, 06:52 PM   #2
    caringsister54
    Senior Veteran
    (female)
     
    caringsister54's Avatar
     
    Join Date: Oct 2008
    Location: NJ, United States
    Posts: 1,471
    caringsister54 HB Usercaringsister54 HB Usercaringsister54 HB Usercaringsister54 HB Usercaringsister54 HB User
    Re: I am new here and want to talk

    no its not going take years. Its more like weeks or months.

    Your mother picking at food is usual. towards the end, they're not hungry and they won't take in enough nutrients to sustain life. Picking at food -- sometimes they'll eat sometimes they won't.

    Meds other than anti-psychotic doesn't work -- aricept and namenda -- forget about it, useless.

    So its a matter of time and at the rate your mother progressed, it shouldn't be that long. but the trip will be horrible. Hospice usually gets called in when the patient has no more than 6 months to live, they'll help administer pain-killers so she won't be in pain.

    When she stops eating and drinking just remember, she won't be experiencing hunger pains that you would feel. Her body won't register hunger or thirst as we do.

    Your mother's estate needs to be administered by a guardian who can be appointed by the courts. Without a power of attorney even your aunt can't do anything. Putting her name on your mother's checking account isn't what allows action with the estate.

    The nursing home will probably take guardianship of the house for the time

    Love
    CaringSister54

     
    The following user gives a hug of support to caringsister54:
    luyingjie (01-25-2012)
    The Following User Says Thank You to caringsister54 For This Useful Post:
    luyingjie (01-25-2012)
    Old 07-18-2009, 06:54 PM   #3
    skimps46
    Senior Veteran
    (female)
     
    skimps46's Avatar
     
    Join Date: Apr 2008
    Location: Denver Co USA
    Posts: 663
    skimps46 HB Userskimps46 HB Userskimps46 HB User
    Re: I am new here and want to talk

    Howdy, Yutenda!

    We are all so glad you are here! Well, actually we all wish NONE of us were here...but since we are, come on along! This board is a WEALTH of knowledge, and the ladies (and occasional gentleman) that are here are fantastic, brilliant, no-holds-barred terrific folks. Pull up a chair, and let's chat.

    A couple of things to know about us: We do not ever let you feel "guilty". NO guilt here. All of us are doing all we can, the best that we can, and we don't need to feel bad about it. Also, there is nothing you cannot say here regarding your loved one. If you go back and re-read some of our posts, you will see that there are times we are all ready to (I actually read this on a post from one of my favorite people here - she had HAD it that day with her mother) hit our loved one in the head with a rock. We talk about it all. Pee and poop, aggression, placement, estates, money, siblings (especially those that don't help out), our own feelings and exhaustion...there is no "off" subject here.

    Let me be the first to answer your question. How long does it last? Here's the definitive answer: It depends. Yep. No time line.

    My dad is in stage 7 also. Pees and poops his Depends, is mostly hand fed by me, and is being care for here in our home. I have a husband who is employed full time and is little help with daddy, a 13 yr old son that is fantastic, and grown son and daughter who live on their own. Daddy is my full time job, as he is unable to do much of anything. He barely bears weight on his feet most of the time. And HIS dose of Haloperidol is 5mg twice a day. He went through an AWFUL period of aggression. Hitting, cursing...terrible.

    I also want him to be free of this disease. He will never get any better, and does not know who I am 99% of the time. He likes me fine, but mostly does not know my name or relationship.

    It's a horrible disease. Daddy can stay like this for a week, or five years. But the disease will eventially take him. When - only God knows.

    Again, welcome. Go back and read some of the posts and you will read our stories. Post often, read constantly, and if you are of a mind to, pray.

    ...lil' deb

    Last edited by skimps46; 07-18-2009 at 06:56 PM.

     
    The following user gives a hug of support to skimps46:
    luyingjie (01-25-2012)
    The Following User Says Thank You to skimps46 For This Useful Post:
    luyingjie (01-25-2012)
    Old 07-20-2009, 02:11 PM   #4
    yutena
    Newbie
    (female)
     
    yutena's Avatar
     
    Join Date: Jul 2009
    Location: DFW, Texas
    Posts: 7
    yutena HB User
    Re: I am new here and want to talk

    Thanks for the kind words.

    I feel so lost. I have spent the weekend scouring the internet for information and I can't find anything conclusive. I am a type of person who likes lists, charts and statistics and a game plan. I find the dirth of specific information infuriating. But that is my problem I guess, haha.

    I called the AL to find out how my mom did this weekend. Still cussing, not eating (won't go to dining room-ignores tray in room), wanders the halls at all hours ( the staff says she can walk with a walker/wheelchair though I have yet to witness this - everytime I see her she is her wheelchair) and doesn't even attempt to use the bathroom. Maybe once a day she'll let the aides close enought to clean her up, otherwise she seems unaware she is filthy. Lovely...

    I want to KNOW if she is stage 6 or stage 7 and a timeline as when to expect another decline.

    Well, my Aunt & I will visit on Wednesday. I'm trying to prep my aunt for what she will see. Mom isn't the same person she saw just 3 weeks ago...

    And about the house, I understand we can't do anything with it except use my mom's money to keep it up. My Aunt stays there when she visits. I was talking about clearing out valuables. I am afraid of vandals when the house is unoccupied for months on end. I live one hour away and really don't have the time to check on my mom and her house,too (especially when I a 6yr and 4 yr who is special needs himself).

    Plus we need to talk about guardianship. I wasn't able to pursue it earlier becuase of my mom's estate. she;s got more money than I do and the bondsman wouldn't insure me - so no point going to court. Need to get a bond = to her estate + annual income. I don't have that much net worth. But... if my aunt can move her money around (1/3 of mom's money is in checking account) then maybe that can tip things in my favor.

    This will helpful in 1) selling house and 2) directing medical care at end of life stage, 3) medicare/medicaid, etc., etc.

    why is life so complicated? haha

    thanks for listening

    --Yutena

    Last edited by yutena; 07-20-2009 at 02:21 PM.

     
    The following user gives a hug of support to yutena:
    luyingjie (01-25-2012)
    The Following User Says Thank You to yutena For This Useful Post:
    luyingjie (01-25-2012)
    Old 07-20-2009, 05:12 PM   #5
    skimps46
    Senior Veteran
    (female)
     
    skimps46's Avatar
     
    Join Date: Apr 2008
    Location: Denver Co USA
    Posts: 663
    skimps46 HB Userskimps46 HB Userskimps46 HB User
    Re: I am new here and want to talk

    yutenda -

    I, too, want to KNOW. I want to know how long, what stage, what to expect, and hon, I hate to break this to you, but there are NO answers. There is not enough research done and every case is so different...there is no way to know.

    My dad decided this afternoon he could walk. He did, too. Five feet. Then he fell. Has a nice little bruise on his forehead to show for it, too. But just 6 weeks ago, he was outside walking in the yard. He took his tiny little pills (2 of them) just fine a week ago, but tonight, I had to crush them to and put them in a bite of pudding.

    The sticky at the front of this forum will give you an idea of whether your mom is stage 6 or 7. Dad is both...rolling into stage 7 with his hair on fire.
    As far as when to expect another decline? No way of knowing - truly. Tonight? November? Next April? No way to know. Dad was stage 6 for literally a year and a half. I did not expect him to be pooping his pants yet - and still, he is.

    This is not a disease that you can predict. If mom had pancreatic cancer, there would be a time line. If she had had a stroke, there would be a clearer idea. But this is Alzheimer's and Dementia. It's a mystery.

    So those of us that want charts are out of luck.

    ...lil' deb

     
    The following user gives a hug of support to skimps46:
    luyingjie (01-25-2012)
    The Following User Says Thank You to skimps46 For This Useful Post:
    luyingjie (01-25-2012)
    Old 07-21-2009, 12:27 PM   #6
    ibake&pray
    Senior Veteran
    (female)
     
    ibake&pray's Avatar
     
    Join Date: Apr 2006
    Location: Oak Hill, VA
    Posts: 3,512
    ibake&pray HB Useribake&pray HB Useribake&pray HB Useribake&pray HB Useribake&pray HB Useribake&pray HB Useribake&pray HB Useribake&pray HB Useribake&pray HB Useribake&pray HB Useribake&pray HB User
    Re: I am new here and want to talk

    Welcome to PLanet Alzheimer!

    If you are looking for charts and lists of timelines, you are looking at the wrong disease-but then we all are. You will have better luck trying to find the next meteour shower than trying to guess when your Mom will hit the next stage.

    I lost my mother a year and a half ago to this disease, and my father died 5 weeks earlier to an aneurism, but he also had vascular dementia. So I had a rough road. My parents lived in Minnesota and I live in VA. My hubby and I spent alot of time flying from here to home in the last couple of years fixing the worng and trying to make things right for Mom and Dad.

    You can wish that your mother will go quickly, but there is no guarantee that she is going anywhere. My guess is that she is going to be with you for awhile now that she is getting round the clock care and meds. The staff is a blessing and a curse. Ablessing because they will take care of her and will make sure that her nutritional needs and medicational needs are met along with making sure that there is someone to watch her and care for her 24/7. Someone who will take care of the spills and the messy depends and who won't be offended by the language and who will monitor her and who will be up with her during the night and day. Someone who can make sure that she does some exercises and sees other people. a curse because of all of the above.

    The best person you will want to make as a friend is your mother's head nurse. That person was #3 on my speed dial on my cell, right behind my hubby. She and I were on a first name basis. I called the desk every day to check on my mother. At different hours on differnt days so that I could get a sense of the staff and check on my mom during the day. A well run locke dunit won't care when you call, and they will gladly tell you how she is doing. Ask how she has eaten, did she get her bath, did you clip her nails, has her hair been done, did she join in the activity hour? You get the idea.

    The fact that your mother doesn't recognize you-I'm so sorry. It's part of the pain of the disease, and the part that is one of the hardest to accept. I spent the last five years hoping every visit that momma would remember who I was, and left very visit in tears knowing that she didn't recognize me as her only child and daughter. I did my best and did everything i could to make sure that she was well cared for and that there was no stone untured in her care and upkeep-her and daddy. You do what you can and you learn to accept that.

    If your Mom doesn't have a good doctor that deals with dementia patients, find one now. You are hindered by your lack of POA and MPOA, but surly you can work aorund this somehow. Another suggestion for you is to contact the local Alzheimer Assocation Chapter where you live. They are a wealth of information and may be able to help you with any quesitons that you have.
    You are welcome here. We have all either lived through this or are going through it and are more than willing to answer your questions or to offer suggestions. Here's your towel, you're going to need it. Hold on tight. One of us always has hold of the other end and won't let go, so you are never alone in this battle. Welcome to the group!


     
    Old 07-21-2009, 09:58 PM   #7
    dorri
    Senior Veteran
    (female)
     
    dorri's Avatar
     
    Join Date: Jan 2003
    Location: Canada
    Posts: 1,129
    dorri HB Userdorri HB Userdorri HB Userdorri HB Userdorri HB User
    Re: I am new here and want to talk

    Yutena, sorry to hear about your mother. Having a mother with dementia I can sincerely tell you that I understand what you are going through.

    When you ask how long will your mom have to go through this, I think it depends on several factors including the type of dementia she has.
    With my mom, there has been phases, some where she was pretty much unresponsive for months and not able to connect to her family or the phone ringing or eating etc, for whatever reason she has come out of that phase and is now in the behavior phase, the paranoid phase where she thinks everyone is stealing her stuff, that she is dying and that they are trying to kill her. Her appetite has been off and on again and problematic over the last couple of years. There are times that she does regain it and eats like a horse but tells everyone that she hasn't eaten anything and that she has lost so much weight and is only 72 pounds, none of that is true.
    My mom's dementia has been very rapid...and it's only been about 10 months since she was fully independant and looking after her own matters, now is mostly dependant on the care of others for her needs. She can still walk and get around and can even sound close to normal on some days, on other days acts very psychotic so we question whether the stranger she's become is actually our mother?
    These phases that they go thru, they frighten me because they come up so suddenly. I keep thinking what is next, what is coming to her next?
    I hope neither your mom or mine or any mom or dad has to suffer with this disease? It is said that they won't remember anything as the disease progresses but that is little comfort for family members who suffer along with them.
    All the best and hugs.

     
    Old 07-22-2009, 04:42 PM   #8
    yutena
    Newbie
    (female)
     
    yutena's Avatar
     
    Join Date: Jul 2009
    Location: DFW, Texas
    Posts: 7
    yutena HB User
    Re: I am new here and want to talk

    Frustrating isn't it? lol

    Thanks for sharing your story ibake&pray. How heartbreaking to lose both parents so quickly. Prayers to you and yours.

    Anyways, my aunt, brother and I went to see Mom today. She was doing SO much better behaviorly. She was cussing, throwing things, etc, last week and over the weekend but when they started her on the new drugs Monday, she was a different person today [Wednesday]! She inadvertantly let a cuss word out and covered her mouth and said 'excuse me'. She didn't do that when she was 'normal' LOL.

    My aunt introduced us when we came in her room so I don't if she remembered or knew us otherwise, but she never referred to any of us by name or asked personal questions, ie, how are the kids, etc. I don't think she knew who I was since she commented about a blanket she was touching and "how [insert my name] would like it". She was talking to me and I was the only one in the room.

    The psychiatrist moved Mom from stage 7 to stage 6. She's eating (we had lunch with her and saw it firsthand) under her own power. Mom still needs help getting from chair to bed thought the staff swears she can walk. [today she needed help for bed - I saw it myself!] She's forgotten what a bathroom is for and doesn't notice when she is wet or soiled. She has trouble with forming a coherent sentence - just lots of phrases, you know, the generic ones that could apply to any conversation ie, "well, of course", "really, you don't say" or just plain stop speaking mid-sentence when the thought escaped her. Needed help putting on her sweater today - classic stage 6.

    When my aunt first arrive (1 hour before brother & I) , Mom started to pack up her stuff saying she was ready to go 'home'. Broke my Aunt's heart. Mom is never coming 'home' at least not the one on earth... But Aunt said when "the doctor fixes your head we'll talk"

    At least she is calm-- polite even! -- and seems okay. We'll see how long this lasts, lol. Enjoy it while we can...

    Last edited by yutena; 07-22-2009 at 05:05 PM.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    MIXED SIGNALS-does he want to be with me or not!? myheartyourhand Relationship Health 7 02-06-2006 06:54 PM
    I don't want to go on... cinting Relationship Health 29 09-21-2005 05:11 PM
    Sister doesn't want help for acne! Cassie4u22 Acne 21 07-17-2005 06:31 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 10:17 AM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!