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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, October 2004 - January 2005 (5 stories)

Story 1. Received: October 6, 2004

My heart goes out to everyone else who has sent their story to you. It is a terrible journey.

My Dad (86) - with his Lewy Body - marches on - but my Mom (81), whose cognition was fine died 8 days ago unexpectedly. It seems so unfair. Just when we had decided to develop some routines so Dad's disease would not consume us and maybe Mom could have a little more fun it's over. She and I had just found a date to invite the families of the people in Dad's facility for a get-together - the invitation was ready to be sent - "while our loved ones are safe at Harbor House, we are like ships passing in the night." She was going to cook there once a week - as an outlet for her creativity, to maintain purpose in her own life, and to spend time around Dad while doing something normal. We had just developed a schedule and started taking him out several days a week hoping to reach a point where he could spend portions of a day at home but still go back to Harbor House at night. Our goal was to let him know we were not throwing him away but keeping him in a place where all our needs could be met.

Dad has so many hallucinations - some that had included her death that now that it has really happened he says he misses her but quickly loses track of the timelines. The paranoia and delusions had also increased prior to Mom's death - sometimes he believed that she slept there and I picked her up early in the morning. Other days he believed she was one of the other residents. All of that will probably continue. Dad was often cruel to Mom.

When the rest of the family was here due to Mom's death, he begged each of them to take him home. They realized that it was impossible because of the bizarre things he mixed with his statements. We expected him to have really bad days once everyone was gone which is what usually happens. Instead, he has been fairly lucid but unconcerned about Mom's passing.

I know Mom was concerned about my tension. She was always worried about causing too much extra work. I can only hope that she understood that my frustration had very little to do with her and her own medical issues. My tension was trying to balance my paid job; finding the best way to meet Dad's needs; and trying to protect her from the devastation and depression that this cruel form of dementia causes for everyone it touches.

Several of the new stories mention concerns about the primary caretaker. It is critical that the caretaker be taken care of. It is nearly impossible to distinguish our own needs and rights as caretakers vs. the real needs and rights of our loved one with dementia. And yet, if the caretaker is not cared for, they will pay a huge price. I only wish we had been more proactive earlier on so that my Mother could have had a better quality of life.

We all miss her. I miss her.

Story 2. Received: October 11, 2004

My grandfather was diagnosed with Diffuse Lewy Body Disease seven years ago. He has slowly deteriorated and it's sometimes hard to remember who he once was. The man had never been sick a day in his life. He owned his own construction company, and seven years ago he fell off a two story roof and was taken to the ER for his broken hip, back pain and a concussion. He had surgery done for his hip and they put him under some sort of anesthesia. When the surgery was done he was never quite the same. They did a bunch of tests and that's when he was diagnosed and they said that the anesthesia had made the disease progress rapidly. They only gave him two years to survive. It's been seven years, he's bed ridden now, lost almost 100 lbs., and all we can do is try to make him comfortable. My grandmother recently heard about NPH or Normal Pressure Hydrocephalus and in a last attempt has made an appointment to see a neurosurgeon to see if he could have possibly been misdiagnosed or if there is anything else we can do for him. This disease is horrible it has taken all of the life out of a once unstoppable man. He had never had so much as a cold, but has diffuse lewy body disease. My heart and prayers are with anyone who has or knows someone who has had to go through this pain.


Story 3. Received: October 19, 2004

An update regarding my mother.

She pass away 9/25/04 - after suffering 4 years with this disease. During her last months she lost the ability to speak and eat. We opted for hospice and no feeding tube. During the last 10 days she did not eat or drink anything. I had to suction her. She slept most of the time averaging 20 of 24 hours a day. At the end she finally slipped into a coma and then passed on.

My father is totally lost without her. I had made prearrangements 3 weeks prior to the death. I find that opting for no feeding tube helped make this easier for her as there was no quality of life and not the person she was. I hope that for everyone out there there is a cure soon; her brother also died from the same illness.

Knowing she is in a better place has helped me... I lost her years before the actual death as I am sure all of you know.


Story 4. Received: January 6, 2005

The phone call yesterday confirmed the clinical diagnosis which was given to us December 2003. What a horrific year 2003 was for my husband Tom. He passed away December 8, 2004, exactly 4 weeks ago yesterday. He was 64 years old. We had a brain only autopsy and the pathologists said he was loaded with Lewy Bodies. I authorized the private autopsy because I have 2 sons age 30 and maybe something can be done to find a cure for this unrelenting disease.

In September 2003, I made an appointment to see a neurologist at a teaching hospital in SC. My husband had gotten extremely forgetful, didn't want to golf anymore, and leaned solely on me for everything. He just was "out of sorts" and had been for a number of years, but we called it his "Tomism's," so we blew off the warning signals. In November 2003, he had an all day "test" with a doctor, and at the end of that test, the doctors suspected it was Lewy Body disease. We were given aricept, and at this time also he started walking very slowly and his arms remained quite rigid while he walked.

In January 2004, he was seeing things in the house, and couldn't find the bathroom or his room, and was walking around all night, that was the start of the difficulty from then on. After a month or so of just being anxious, claustrophobic, and very strange, he couldn't walk. Then he developed a constant urge to use the bathroom, I would literally carry him on my back to get him to the bathroom, several times a night. In April 2004, the urologist inserted a supra pubic tube and that eased the running to the bathroom all the time, but there were many complications with the catheter, so it seemed every two weeks he was back to the urologist's office.

Everything the rest of the year went on a downspin..... I could never leave him alone, so I would have CNA's in once or twice a week. He was unable to wash, brush his teeth, shave, dress, I was his constant caregiver. I was not working at the time, so I was there 24/7. I was able to get a wheelchair and hospital bed and we had some in-home physical therapy as well. Tom was highly medicated at all times, otherwise I would not have been able to deal with anything.

Before Tom got ill, he weighed 235 lbs, and my doctor told me to put him in a nursing home as I was lifting him from bed to chair, to the shower, to another chair, etc. about 30 times a day. I was literally falling apart. He left the house on November 18, 2004, and I knew in my heart he would never be home. The nursing home was $147 a day, no insurance covered that and Tom was too young to be on medicare.

After being in the nursing home about 5 days, Tom developed swallowing problems, he had aspiration pneumonia. The doctor put him on meds and the pneumonia seemed to clear up, but they still kept him on pureed food. I went to be with him daily. He became extremely agitated at the nurses, aides and me as well. After two and a half weeks of being in the nursing home, I got a call he had been transported to the local medical center, I met him there in the emergency room. Tom's blood pressure had dropped very low and he had developed pneumonia overnight. It was septic and the emergency room doctor told me to call the family. My sons were about 4 hours away, and they arrived by 5 PM. We stayed with Tom all night, and the next day at 2 PM, Tom left this world and was walking on the sands of heaven. At autopsy, he weighed 170 lbs.

This past year I became a full time caregiver and I have learned so much from reading your journals and all the information on Lewy Bodies. Some additional plaque was also found in a part of the brain and his slides are being sent to Duke in NC for further analysis. It has broken my heart to see a once strong, vivacious man become so literally helpless. In the nursing home he would call out for me, "the only woman I ever loved." I hope by finding a cause or cure for this disease we can help any other people who suffer. I was blessed with Tom for 32 years, he was the best husband and father and will live in our hearts forever. b

Story 5. Received: January 17, 2005

I just wanted to thank you for sharing your experiences. My Mom was recently diagnosed with Lewy Body Disease. My Mom is only 67 years old. I am an only child and this has been devastating to me, my Dad, and my Aunt (Mom's sister). We are the only immediate family that Mom has left.

It is so hard to watch someone you love so much, simply fade away - some days more than others. As of right now, Mom knows who Dad is but she has problems remembering me. She is in a nursing facility because betweeen me, my Dad & my Aunt, we were unable to care for her properly at home. The moments of "reality" are few and far between for my mom. Much of her existence revolves around her hallucinations of what is happening in her mind. We have been told to go along with her "stories" because if we attempt to make corrections, this only agitates her more. There are times when it is so hard to go along with her delusions - especially when they involve loved ones who have passed on or when I'm not who she thinks I am.

This is truly a tragedy to any family who experiences it. We continue to visit her daily - never knowing what to expect when we walk in her room. There are times when we laugh amongst ourselves because if we don't, we will surely cry ourselves into a deep depression. I find myself, at times, wondering if I am exhibiting early signs of this disease. It's the simple acts of forgetfulness and a slight tremor (which worsens under stressful situations) that make me wonder about my own future. Some say I should undergo testing now (I'm 41 years old), but I don't want to live my life daily wondering if I'm going to someday be like my mom.

My Mom was initially diagnosed with tremors/Parkinson's - and numerous "possible" diagnoses since 1999. After a bout with pneumonia (2001), she was diagnosed with Guillian-Barre Syndrome. After all the treatments for Guillian-Barre proved to be unsuccessful, inpatient rehabilitation, MRI's, CT scans, lumbar punctures, C-2 taps (for normal pressure hydrocephalus - the first done in December 2003 and again in September 2004), a trip to Mayo Clinic in Minnesota (July 2004), pheresis treatments (September 2004), and numerous medication trials/hospital stays, Lewy Body Disease was diagnosed - through process of elimination of all treatable diseases - in December 2004. The neurologists say they feel quite sure this is what has affected my Mother but they won't be certain until a brain biopsy is performed at the time of her death.

Until then, we will continue to visit her & be part of her "world." We will continue to love her and shower her with affection and respect. She is my Mom and my friend. Please continue to remember our family as we will remember yours. Thank you again for sharing your journey.


Stories, January 2005
Stories, July - September 2004
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