Zanelle

zanelle

zanelle
Location
Alpine, California, United States
Birthday
December 07
Bio
I am here in cyberspace trying to understand the true nature of reality. My artwork can be seen in the blog link below. http://suzannesmith0.wix.com/stucco-by-zanelle#!home/mainPage

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Editor’s Pick
JULY 3, 2012 10:03AM

The Scary Woman in the Mirror

Rate: 35 Flag

 "That woman was there.."  Our sweet lady with Alzheimers Disease had somehow found her way into the bathroom with the mirror at the Day Center.  We have another bathroom without a mirror for people who are disturbed by mirrors.  This lady had just recently become very sensitive to mirrors.  She was shaking and scared.  I helped calm her down and redirect her to other more positive places to be. 

  She and another severely affected lady cling together sometimes.  Holding hands and smiling.  They both have devoted husbands and it is so tragic to see the steady decline.  What stress and pressure this horrible disease imposes on people.   It just is NOT FAIR.

   I knew another Alzheimer patient who would try to see behind mirrors.  He was sure there was a person standing there.  We had to rig up a covering for the mirror in his room.   We also rigged up patterns in front of other patients' rooms so he would not wander in and try to get in their beds or mess with their stuff. 

  I just read that having a RED plate makes an Alzheimer patient eat more.  It is something to be avoided by a person trying to lose weight but a tragic turn of this disease is that they cannot eat.  They want to eat on some level but the logistics of it all escape them.  Eventually they forget how to chew and swallow and that is a common cause of death as they curl into a fetal position.  

  I cared for a lady who was curled into an arched back position.  She is the most tragic person I have ever known.  She was frozen in this position for the six years I worked in the nursing home.  Her mouth was open and when we dropped food in she swallowed.  She was not spared the death of not being able to eat.  Her eyes showed her terror but we included her in all our activities.  Her big hospital bed was right there in the dining room and living room for music and parties.  Eventually she passed away.  It took a long time.

  When you think you are just fine maybe you should take a walk thru a nursing home.  Look in some of the rooms and remember how wonderful this country is to take care of people.  We do not hide people away in closets and pretend they are not human.  We use our taxes to help places stay in business where there is care for some of the most horrible things we can encounter as humans.  

 Next time you look in a mirror imagine what it would be like to see someone you do not know staring back at you.  Who will be there to calm you down and sit by you until you can carry on?  What will the toll be on that person if they have to watch you go into this terminal spiral downwards into chaos?   Alzheimer disease takes your words and garbles them so no one knows what you are saying.  Who will be there to nod their head and make you think they understand even if they don't?  

  Anxiety.  You think you know what it means to worry?  Try worrying if anyone knows where you are.  Imagine not knowing where you are or how you got there.  We give notes to people who ask the same questions over and over and over again. " Your family will pick you up after lunch."

  "Is that today?  How do they know where I am? I have to call them.  Do you have a car you could take me home in?  I need to go outside to see if my car is there.  You won't let me do that?  What kind of place is this?"

 

 

 

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This is one of the most disturbing posts I have read. As you know I have written about my own mother who was lost in her hazy world of indifference. How awful it would be to live curled up in a ball for 6 years. Tell me why, we won't assist those poor dear one to find the window of opportunity so that they can slip through and find peace.
I hope that my family will never allow that to happen to me.

Where is the mercy of sustained suffering, anxiety and pain?
None at all.

Re:The Mirror. I watched Bea,(my Mom) avoid the mirror and pictures of her younger self. She knew what was happening..the woman in the mirror was her nightmare self. The beautiful brunette of her youth had died a long time ago.

"Elsa’s friend Ann never grew old. Elsa says if she didn’t have to look at herself, there is no reason to believe she is old either. She detests the old woman with wild hair and etched face that shows up in the looking glass. She wishes she would get out and go to another room." From the Turning...the story of Elsa Barron.

Zanelle...I so admire your dedication and care to these poor souls.

Love and Blessings to you.
Chilling -- and very real.
I think this disease is one of the cruelest ones possible. What a punch to the gut post, zanelle. ~r
"Eventually they forget how to chew and swallow and that is a common cause of death as they curl into a fetal position..." In hospice over the seven days it took for my father to die, I watched him relax, open up from that rigid ball of skin and bone and lie flat on his back for the first time in years... a by product of the narcotic effect of toxins from kidney failure. He smiled when we fed him ice chips and he waited until my brother and I took a break and went out for dinner before he let go. In his casket he resembled an emaciated mummy more than the robust man he once was... I only managed to read two paragraphs of his eulogy before tears blurred my reading glasses. With Alzheimer's death is a blessed relief.
OMG....heres some soothing music for you to enjoy and reflect on.
http://www.youtube.com/watch?v=xrD14GreZ4k&feature=related
It is tragic. I think my grandmother had it but she remained very sweet. Any of us could develop it or dementia of another sort. Perrhaps in the early stages at least it is a blessing, in that one can still communicatethe advancing experience with others, which can be therapeutic and helpful to others, too.
Your post captured the life my mother has been living for the past 12 years. It's a horrific disease and I am grateful Dad left enough money to pay for Mom's very expensive care.
I'm glad they have people like you around Zanelle. You make a difference.
I am so glad that you are posting about this. On some strange level, I feel that you are preparing me. I have recently had some tough blows in our family and I realize that no matter how horrifying things are in theory, when the shit hits we have no choice but to deal with it. With awareness, we can all prepare for hardship as a society. We will all face some hardship and knowing that we are not alone in this journey helps us to accept that this is what life is about and that we can all help to make it better for those suffering even if it is not our particular burden to bear.
Oh yes, I think that is the reason there is suffering in the world. We all need each other. And in that helping and compassion we grow as spirits. Maybe there is no reason and it is all chaos but somehow I think it works somehow. Humility. We can all use a little of that.
I have seen it in reality and this is as close as it gets..
HUGGGGGGGG
So sad to know that people go through such a terrible illness. Life is so uncertain and we have so little control even when healthy, how terrifying when even your own image is foreign . We all really do need each other to get through life, whether we believe it or not.
Wow. My boyfriend's mother is slowly slipping away; it hurts him deeply. The sad thing is, she wants to go, to be with her husband, but her body keeps ticking along. And my poor guy, when I ask how the weekly visit went answers more frequently, "Not a good day for Ma." Such a vicious, insidious disease!
I'm with Ande on this being one of the most disturbing posts. The woman with the arched back is straight out of one of Poe's worst nightmares. My last conversation with my dad was by phone some weeks before he died. He'd been in a nursing home several months. Didn't know me when i called, and when I told him who I was he pretended he knew me and asked if I was coming to take him home. Every time my mother and sister would visit him there he'd ask them the same thing. Thought he'd been taken there for a checkup. Horrifying. I hope I'll have the wherewithal to kill myself if I reach that point. To me it isn't decent to have to live like that.
Yes, that is always the question. How could I kill myself to avoid this horror? However that is missing the point. When you suffer and someone helps you that is a golden moment. That is where the magic happens and the growth. I do support choice in death tho because there should be some limits to it all.
Seems that there is the same controversy with birth and death...when does life start and end?
Zanelle, you describe the impact of this horrible disease so well. My father-in-law has Alzheimer's and is now living in a memory unit. Thanks for what you do at the Day Center.
Zanelle, I admire you so much for doing the work you are doing in that day care facility. I think Alzheimer's Disease is the most terrifying thing that could happen to me and the people around me. I tend to agree with Matt when he says he'd hope he had the wherewithal to commit suicide before declining to the degrees you describe here. I feel the same way.

Lezlie
Oh, so sad. I am not sure that it is so compassionate to keep everyone dragging through, but we can't really know. I hope if I ever get there and they can't pull the plug, that they drug me into oblivion. I have heard that for many with Alzheimer's or other dementias, that the inner "voice" is the personality that tends to last longest. Those who live in constant fear, anger, hate, judgment have mostly that left at the end.
My grandfather was one of the kindest souls I ever knew, and in his Alzheimer's, he remained kind and gentle and generous and pleasant to the end. I am working on cultivating that now, in me, so that I can enjoy life more no matter what stage I am in.
Dear Zanelle, I wish I could be as strong and compassionate as you are. I guess we all have our gifts, but I admire yours the most.
Zanelle, this is the best, and saddest story I have read since I have been in OS. As you can understand, my mother is in her early 70's, and the fear for this horrible disease is always in me.

""Next time you look in a mirror imagine what it would be like to see someone you do not know staring back at you.""

Your work is to be thanked, and admired!

Thank you for the informations, the questions, the tears. So rated.
What the fuck is wrong with us? Really.

My father died of dementia. My BIGGEST regret is that I didn't murder him.

I lacked the moral courage to put him down, because I was afraid of jail.

If hell were not fictional, I would be doomed to go there.

As a nation, we need to learn a little more about dignity, and a lot more about death.

Why do we allow this to happen, and call "LIFE" sacred when we piss on it so?

I'm not talking about setting these folks on fire, I'm just talking about one last shot and some peace.

Where is our courage?
Time takes everything from us. I used to like to look in the mirror but now the old woman in the mirror is me. You have a sweet and caring nature that shines in your posts about the people you help get through it. Such grace is rare, Z.
Oryoki Yes that inner voice is there at the end. Some are very agitated and afraid and others are peaceful and calm. I want to be calm. Cultivate that.

Doug I agree that just like birth, death should be a choice. It is very confusing. In primitive societies they would just put the suffering person in the group and let them go naturally somehow. I don't know. I know it is very very difficult to die in this crazy medical world. Back to basics? I don't know. I just don't know.
How sacred is life? One little drop of life left is sometimes very precious if you want to make it that way. If you are afraid you will miss it.
We can prolong life, we have techology, meds etc to keep us going far beyond our natural life expectancy. All we gain is quantity through this technology. The quality of life is provided through compassion of human spirit. You are living proof of that loving spirit, Zanelle. Thank you for your humanity, compassion and kindness.
R
Am rating, but cannot read beyond the first sentence, having lived this nightmare now four times,. Grandfather, two grandmothers, and mother. Hope we are done. God bless you for working with these people.
Excellent writing, Zanelle, and I agree, this is just a terrible disease. We have so many stories, some funny, some terrible, of what this disease has wreaked in my extended family....thank goodness for adult care facilities and home nurses and hospices and thank goodness for every caring soul like you out there.
It's time stories like yours are published front and center as we need to acknowledge and address how tough it can be to be elderly and ill, how crucial it is that there are plenty of funds for care of our elderly too.
zanelle,

I used to work in a similar place. This "What kind of place is this?" is something we heard too.

I remember on Christmas day we could never say it was Christmas day or people would become to upset and disoriented, wondering why they were there. So it was always "the christmas season" which was easier on the psyche...

I was inspired, though, by those patients who could somehow keep this amazing sense of themselves despite all of the confusion and the forgetting. I learned that there is still some part of ourselves that remains when everything we think of as identity falls away...memories and psychological defenses.

One man who couldn't remember how to eat watched people painting a bench outside and walked over and picked up a paintbrush and started painting away. Muscle memory lasts..he had been a painter. This excited us so much we let him paint the bench again and again.

One day I was sitting watching him finish painting it again, and I said to some ladies who were also watching, "isn't that a nice color? Doesn't it look better?" And one of them looked straight at me. "Well it should. He's already painted it six times."

Sometimes it's amazing that things get through the curtain. I appreciate every tax dollar that is spent to keep important places like this running in humane ways. Your post is heartening.
"They" know because they are us. We know. Together we fit all the puzzle pieces in when we help each other and just observe our world.
It does make you wonder about human consciousness. Are people with this disease still the same people they were? Where is the part of their brains they that made them them? I think at the end, my father was not there. His soul literally left his body a few weeks before his body died. I had to coax it back to his body from his apartment to the nursing home so he could make the transition, with promises of the peace of death, and the loved ones he would see when he got there. He was sitting in the car beside me. He knew I was mad at him for leaving. It wasn't until I had escorted him back into the nursing home room that he could let go, long after he lost words, and was skinny from non-eating, but not curled up just yet. I'm glad he never got to the curled up state. That may sound crazy, but that's what I really think happened. They are still people, but they are different people. Parts of people. Shadows and remnants of people. It's sad, but not to pity or be angry about. It's the sometimes too long length of time that it lasts that seems unfair to me.
Yes " The too long length of time." We are all dying. I sometimes seem to be killing myself with the choices I make. I don't know what causes Alzheimer Disease but it is terminal and tragic. Sometimes there is no cause and something just finds you and takes you down. It is a slow fall and I hope when I take my final fall no matter what form it takes that my soul will shine thru and be calm and not angry.
Agree with Ande - a most disturbing post and rightly so because it's a most disturbing illness. Probably the most disturbing. AIDS, which not so long ago used to be an automatic death sentence, is now considered a chronic but manageable condition. I don't know if the research and funding for Alzheimers is on the same level as it is for AIDS but it should be. It's by and large a disease of aging and we all have to die some way but not this way. There's something so obscene about Alzheimers; it makes a mockery out of being human.
This was cringe-worthy, zanelle. That's a huge compliment.
THIS POST HAS RECEIVED A READERS’ PICK AWARD
I work at an Adult Home; not a nursing home. Supposedly, people are less ill (mentally and physically) where I work than nursing home residents. The fact is that some of them have dementia almost as severe as what you describe. One poor woman wasted away to almost nothing before she finally got transferred to a nursing home, where the staff were equipped to get some nutrients into her.
My partner's mother essentially starved to death after forgetting how to eat, despite the best efforts of nursing home staff. Fortunately, she had (while still in possession of her full faculties) left instructions that she was not to be fed via tubes, so she was spared that suffering.
I agree with Poppi. If all technology does is buy quantity of life without quality, it's not good for much...
My mother has dementia and has been in a nursing home for seven years. She worked as a Registered Nurse, working in nursing homes for most of her career. She never wanted to end up in one. I'm only grateful that she has little awareness of where she is.

You wrote: "We use our taxes to help places stay in business where there is care for some of the most horrible things we can encounter as humans."

I know for a fact that the great majority of nursing home residents are having their care paid for by Medicaid. It is true all over the country. And yet we still hear uninformed and uncaring people, and politicians, calling for cuts or privatization of these programs.

For-profit nursing homes are a huge industry in America. They have powerful lobbyists that help them get their way in regulatory matters. And yet, where are the voices those lobbyists in our national debate over how we pay for health care?

Not a peep out of them for preserving or even improving Medicaid.
Why?
If there was ever a post that deserved a Reader's Pick award it's this one. What insight and compassion.
You know I hate to toot my own horn but this post really touched me. I know too much and yet not enough. Thank you for all the support.