I am new here and want to talk - Alzheimer's Disease & Dementia Message Board

yutena · 07-18-2009, 11:51 AM

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

caringsister54 · 07-18-2009, 07:52 PM

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

skimps46 · 07-18-2009, 07:54 PM

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

yutena · 07-20-2009, 03:11 PM

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

skimps46 · 07-20-2009, 06:12 PM

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