Intro And Comment (warning-LONG) - Alzheimer's Disease & Dementia Message Board

chelseacat · 09-01-2005, 09:26 PM

Hello, I have just recently registered, tho have visited this forum for several months now.
My 82 year old mother is now in a nursing home with Alzheimer's Disease/Dementia. The past year and a half have been a living hell with her.
She became quite angry and frustrated and took it out on anyone near her. She refused to leave her home or seek medical help. I fianlly ended up calling Adult Protective Services. It broke my heart to do that, but where I live the climate is so politically correct that this was the only alternative. I spent 18 months trying to get help for her only to be told that she is an adult, and must agree to any treatment even with out a sound mind. After contacting several attorneys I was advised to go with APS through the county she lives in. I live over one hundred miles away. This made it all the more difficult.She was welcome to move in with me, however she refused.
It went from bad to worse. She hallucinated constantly-seeing her long departed parents and brothers, and others who were long gone. Her life revolved around these "visits" from her departed family who eventually moved in with her. (in her mind, of course)
She became very angry when I tried to "ground her in reality". As you all know, it is useless beyond a specific stage of this awful disease.
She could no longer care for herself, confused night and day; up all night, sleep all day, and finally quit eating even though food was readily available.
She threw away the few family heirlooms that were supposed to be passed on to me and then to her three granddaughters, and even threw away my father's ashes from when he passed from this earth.
It took ten months for APS to remove her from her home. I was then treated
like a criminal and given no information on even where she had been taken.
I called the one and only social worker who was kind and understood the situation, and she did give me all the needed information.
The county appointed an attorney to Mom's case the night before her hearing. She now has a Public Guardian. Due to her debt and mismanagement of all her finances, it would have required work beyond what I am capable of to straighten the mess up.
I could not help my mother in any way. Attorney's would not take her case.
She was at the mercy of Los Angeles County.
She was taken to a nearby hospital. They would give me no information on her because of the "HIPPA Act" preventing anyone from accessing medical records without court permission. Being her daughter made no difference to the hospital staff. I was lied to, over and over again. At one point, before she was taken by the county I called 911, and was told they could not remove her from her home without her consent. ??? She was living in 1930, as a little girl in her mind, totally unable to care for herself. I could not remove her from her home without a court order. She needed an attorney for the court order to be legal..she didn't have the capabilities to find and hire an attorney.It was an insane cycle of no help at all. I called the police in her area for a welfare check. She told the police her "Mama and Daddy" were asleep in the other room and to please be quiet. I asked if they understood that this was all dementia. They said, "She's fine, don't worry about her. have a good day" and hung up on me.
The county sent several ss workers out to evaluate her and try and set up in home care. They asked her if she wanted in home care-she said "no" so that was the end of it. They knew she was very ill and unable to care for herself.
I wanted to take her out of her house, kicking and screaming if need be -and was told not to under penalty of kidnapping by APS.
I wanted to hire an atorney, however, I was assured that I would lose and the county would get all of Mom's assets. I would be left with a rather large
fee to pay, and cannot afford to go into debt this late in my life.
Legal Aid?? Not for this type of situation. No Pro Bono available either.
Mom did get the help she needed, she is in a very good nursing home. She is still too far away to visit as often as I would like. I am not in good health, and this has not helped. My mother is incredibly healthy physically, other then AD.
The reason I wrote all of this is to give a prospective as to what else can happen when the parent or loved one is totally uncooperative.
Mom hasn't recognized me for over a year. It hurts, but at least she doesn't "miss" me. That is a comfort as I would feel very badly knowing she was lonely for me and her grand children. She has no idea that she was ever married, or has children or grand and great grand children.
She is medicated out of neccesity. I know only too well what she is like without meds.
It is very sad, and I wish I could understand what turns a kind hearted mother and grandma into such a disagreable and unkind person.
She is not easy to deal with as a patient, and my heart goes out to the workers who care for her.
I am sorry that this is so long. having read the other thread by shay's mom about how she wanted to be treated if she ever gets AD-- that was lovely, and very sweet, but it just doesn't always work out that way.
I fear getting this disease, too, and I do hope that my children would treat me
in such a kind manner also. However, I have an Advance Health Directive
and instructions with a DPOA for my children to get me out and into a safe place if and when needed.
There is so much more, more then I have time to write.
My heart goes out to all of you, my prayers are with you.
Take care,
Linda In CA

angel_bear · 09-01-2005, 09:41 PM

Welcome to our little sanity spot Linda .. you are amongst understanding friends.

It's a frustrating time for us and our love ones, although they're not always aware of it. They don't realise we are simply trying to help, not hinder .. and their stubborness is their undoing ..

And it happens time and time and time again.

I can't speak for the American Health System, but I do know the Australian Health system is probably in a similar mess when it comes to the privacy act and peoples rights. It's all been done to death ... and nobody wins.

But welcome, feel free to vent, share your experiences. Between us all, we learn and teach others.

Cheers
Sally

WannaBeFreeToRoam · 09-01-2005, 11:10 PM

Hi Linda,

It sounds like you have been to "HECK" and back with your mother! It is a wonder you are still of sound mind. I probably would have freaked out if that had happened to me. I think that my dads doctors, would sign the papers saying he needed to be put in a NH, if he was acting like that. And we have our sneaky ways (my mother and I), about pulling things out of the garbage when he is not looking!

Still another sign, eh ladies - that my sister and I need the parents to get those DPOAs and Living Wills DONE!!!!! I will print this in the morning and give to SIS. We do not want to go thru what you went thru Linda. Thanks for talking - it may help me and my family.

Come back and talk and vent some more. Wannabe

Beginning · 09-02-2005, 03:44 AM

What a nightmare! I can't understand why you were given so much wrong information. Someone along the way should have explained that you could petition the Court to be appointed her legal Guardian/Conservator. It does cost money, but Legal Aid or a local law school's clinic may have been able to help. The local Alzheimers Assn often has info on doing this too, or the names of lawyers who can assist. I doubt you would have lost that petition as long as her Doctors agreed that her dementia was advanced and no one wanted to help, but by then there could have been liens and probably any money spent for her care by the county would have had to be repaid.

I think the HIPPA laws are a huge barrier that interfere with family members being able to care for each other. My husband was diagnosed soon enough that I could get his power of attorney, but I can't imagine trying to get info from doctors otherwise. My son needed his immunization record from the pediatrician, and they wouldn't let me have it since he turned 18...yup, HIPPA again. Grrrrr.

Martha H · 09-02-2005, 04:59 AM

Dear Linda,

I am so sorry to hear about your ordeal. What a system! It is scary.

I am also thinking of the AD patients in New Orleans ..I saw one group sleeping on a highway overpass ..the reporters announced that these were Alzheimer's patients from a flooded nursing home ..asked a couple of them, "are you all right?" and one lady answered with a grin, "Oh I am just fine, just fine." with a cute southern accent (Ah am just FAAHN!) Just fine, sleeping on a concrete road with neither food nor shelter nor water ...

The reporters left. I don't even think they gave the people a bottle of water - they just got their story (am I being too harsh?)

You did what you had to do and you got your Mom into a safe place, so you are the hero in this story .. it is a horrible disease no matter where the patient lives: with you, in a nursing home, with relatives, alone ..nothing is easy, nothing works out without a hitch. God bless you and may you be spared the disease .. I am optimistic that a cure will be found before long ...

Love,

Martha