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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Other Stories Introduction

Stories, July - November 2016 (3 stories)

Story 1. Received: July 4, 2016

Thank you so much. It is easy to feel alone, bewildered, misunderstood and poorly served in the face of this disease. It is so helpful reading your journal and the stories of others. It would be great to think that the common threads shared here might inform improvements in diagnosis, treatment and care.

My mother was a teacher, social worker, activist, gardener and loving and intelligent friend, mother and grandmother.

Like some others here, the first sign of trouble was a psychotic episode following general anaesthetic and hip replacement. She also noticed problems with balance, cognitive decline, depression and social withdrawal in herself 5 years ago and sought diagnosis. She had a full assessment and scan and was assessed as having mild cognitive impairment.

Last year she had repeated hospitalisations with delirium and UTI (urinary tract infection), rapid decline in mobility, and increasing difficulty with cognition and sequencing tasks. At the end of the year she and my father were both seriously ill and simultaneously hospitalised. She has required full-time care since then and has been in a nursing home for the last six months.

Only after she entered nursing home care was she finally tentatively diagnosed with LBD. We were already convinced of this diagnosis and agree with others here that the view that conclusive diagnosis needs to await post-mortem needs rethinking. We found the tool linked to on this page very helpful.

Both prior to and since the tentative diagnosis she has been prescribed medicines that we suspect have worsened her state: Metoclopramide and (only just in the last week) Haloperidol, both prescribed for nausea. Each episode of hospitalisation with delirium last year followed the commencement of an antibiotic that crosses the blood-brain barrier.

One of the kind-and-cruel aspects of the disease is that, at times, she is utterly herself. At these times she is able to see with great clarity the situation she finds herself in. Every few weeks, she surfaces and tells one of us that she wishes to "go".

Two weeks ago, out of the blue, she had the co-ordination and concentration to telephone for one of us to come to be with her in the evening. She was anxious. I went and sat with her for a long while. This is the conversation we had:

"Are you afraid?".

"Its more..." [she struggled to find the words].

I suggested, "Is it about losing control over your life?"

"Yes, yes — I never wanted this, I never wanted to be a burden in this way".

I reassured her that we did not feel that she was a burden, that she had cared for us and her grandchildren so wonderfully all these years and now it was our turn to care for her, and that we cared for her out of love, and saw this time as just part of life.

"I would like to just slip away. I am afraid of continuing to live, not of dying".

And later:

"I am trying so hard not to be trouble".

"We are so impressed by the way you take in your stride the indignities that have become part of your daily life".

"It is not just about the indignities I cope with, it is also about the indignities I see those around me subjected to."

My mother has in place an advance directive that prohibits intervention to prolong her life. She has also requested that she not be spoon fed, and often repeats this as we pass through the common room where those in more advanced state than her have their meals. We know that, in light of this, the hardest parts are still to come. But we are enormously grateful to her for letting us know that this is her line in the sand.

Thank you again for continuing to provide a place where such heartbreak can be shared. Our gratitude and sympathies go out to those who have gone before us.


Story 2. Received: August 29, 2016

Where did my precious mother go? Her daughter wants to know.

I am sitting here on the eve of my 63rd birthday and wonder when special occasions will not bring back the pain of losing my precious mother to LBD. My mother passed away 15 months ago but she left us a long time before she died. My mother was the most gentle, loving and kind person that I have ever met. That was probably her main fault — too nice. She was like an angel — always a peacemaker. She was my biggest fan — I miss that so much.

LBD took over her body and tormented her every minute of her life. The panic attacks, delusions, hallucination and confusion drove her insane for 5 years. Her daily life was like being trapped in a haunted house and never able to find the exit door. And there was nothing we could do to fix her — we felt totally helpless.

My mother was never diagnosed with LBD until the last month of her life. She was always treated for Parkinson's Disease by one of the best neurologists in our area. This particular Dr. travels the state and gives lectures on caring for Parkinson's patients. The Parkinson's meds put her in a tormented state. They kept increasing her dosage and she kept getting worse. She would beg us not to make her take them. They would make her agitated, and unable to stop moving. My father and I argued with the Dr. regarding the meds and told her that my mother fit the diagnosis of LBD that we had found online. She disagreed and told us to keep giving the meds. I ground them up and put them in her favorite chocolate ice cream for the last year. I am haunted by this — my mother deserved better from me. We became so overwhelmed by the 24/7 care that she needed that we did not seek a 2nd opinion. We could not keep her in a wheelchair or bed. She would get up and take a few steps before falling.

She saw at least 50 people in her house in various rooms all waiting to be fed. She started keeping her eyes closed so that she did not have to see them. She wanted to die — she did not want to live tormented any longer. She wanted to walk out the front door and run away to the woods to die. I found an antique pistol with bullets laid out in the guest room. This made her level of mental pain very real.

She ended up in the ER a month before she passed away. They admitted her for an evaluation. The neurologist that was employed by the hospital immediately diagnosed her with LBD and changed her meds. It gave our battle a name and we finally came face to face with the enemy: LBD. Her original neurologist that had treated her for Parkinson's visited her in the hospital the last 2 days of her life. She apologized and cried.

It has been 15 months since she passed away but she left us a long time before that — I just wish I knew when and where. We find pictures of her pre-LBD and it shocks me to see how present she was — the bright shine coming from her eyes and smile. My father just turned 91 and I am his sole caretaker. We console each other but I know I should have fought harder for answers. They were married for 70 years — the kind of love that you could feel when you walked into their room. I had a social worker crying because she said that she had never experienced that before. I am very lucky that I did not lose my father in the middle of taking care of my mother. LBD broke his heart — to see his wife suffer was unbearable for him.

We are putting our lives back together but there is a huge hole in our hearts. I am hoping and praying that time will heal the pain and regrets of not pushing for the correct diagnosis with the right doctor.

Story 3. Received: November 21, 2016

My mother raised five children, was married to our father and later divorced, married our step father, was a widow then married again in 2006 until she passed February 25th 2015 from LBD. Mom was a bond underwriter until she retired in 1999. She was the wisest person I knew, was a wonderful mother, grandma and great grandmother. Mom bowled weekly, loved to go to the coast rock hunting and square dancing.

January 2011 she had surgery for a triple A bypass for an aortic aneurysm and ended up in ICU because of a heart attack at some point and was put in a drug coma for a week. Once she woke she was never the same. It was like she was in a dream that she couldn't wake up from. I did some looking online and got her to an eye Dr because maybe she had a stroke as well. I moved in with mom and her husband because she could not take care of herself. Time and several Dr's later she started vision therapy which really helped her and did that for three years and then she got shingles REALLY, REALLY bad and EVERYTHING changed again. In and out of the hospital a few times and home health care to deal with the open sores.

Mom's mind had changed again to the point she was not able to watch her favorite show, Antiques Roadshow, because she couldn't follow it, that it made no sense. I took her to her primary care Dr, who was wonderful and helpful throughout and told me it was taking a toll on me, that I needed to put mom in a foster care. I got set up with social workers and went to A LOT of different places. I promised my mom from the beginning that I would be there to take care of her until I couldn't anymore. Mom's mind would come and go. When I felt mom having the light in her eyes back, I explained what was happening and she would say she would be good, she just wanted to stay home. I didn't want to tell mom the things that she had been doing like hitting me, throwing her full commode at me. That was at that point in my life the hardest thing I ever had to do in my life, to leave her in a place she didn't want to be.

She was there a month when I got a call saying they needed more money because she needed more care than originally thought. She fell and broke her ribs, she wouldn't let them take her pants off to go to the bathroom and cried until I got there every day. I took her to the hospital when she fell and that's when someone FINALLY said what was wrong with her. Mom also could not take many drugs her whole life because they reacted so badly in her. Nobody wanted to give her anything because she got confused. Finally I go, "SHE IS CONFUSED all the time whether on drugs or not. Please give her something so she can sleep and not be so anxious."

After almost two weeks in the hospital I got to take mom home to her house and hired in-home care part time so I could sleep. The only problem: she would only let me or my daughter care for her. Mom spent the majority of her day arguing why she had to take her pants down to pee and how sick I was to make her do that. Then the other part: she ran around crying, looking for my brothers who were in a burning house that she couldn't rescue. Mom stopped eating, then she would scream loud for hours, so much so that the police were called to make sure she wasn't in danger. They called paramedics to take her to hospital to get checked out.

I met again with social workers and my mom was given pain meds and something for anxiety. I asked if she could be put on hospice because of her weight loss and for more help. So, that's what happened, mom came home by ambulance and in no pain. That was a Wednesday, hospice came Tuesday saying they will see if it will work or not and to play it by ear. They were great. That night I realized mom had not used the bathroom and they came and gave her a catheter and also a new bed.

My mom died five days later. Mom was done so very long ago but could not express it other than that she wanted to go home. I miss my mother every minute of every day. I feel like I let her down. Once we found out that she had LBD it was like everything my mom was doing made sense.

I 100% believe that having the surgery was what ramped it up in her. I am still not sure what could of been done to help her live in that nightmare. I know for me things would of been different as far as knowing what and why she was going thru it. I have her recorded several times on my phone when she was screaming so the Dr could see how she changed on a dime. I just miss her and am so sad her life had to end that way.

Stories, May 2017
Stories, May 2015 - April 2016
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