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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, May - July 2006 (5 stories)

Story 1. Received: May 3, 2006

My father died last week at the age of 74. He had been having memory issues for the past 5 years or so, but progressively was getting worse, having hallucinations, changes in behavior, and difficulty doing things. He became totally dependent on my mother. He was diagnosed as having Alzheimer's disease, but he had some days when he had very few symptoms, and then the next day he would have totally changed.

He was on Aricept and anti-hallucinatory drugs for the past 6 months. He got progressively worse and was in an assisted living home in February of this year. He was only there 2 months, was getting very bad, would not eat, etc. He was sent to the hospital and was taken off all the drugs. He was not able to take care of himself and lapsed into a semi-coma from time to time. We put him in a constant care facility a week before he died. Only then did we learn from the doctor there that he had Lewy body dementia.

Had we known about this disease earlier, he may have had more time with us.

Thanks for the site. This is a horrendous disease.


Story 2. Received: May 23, 2006

For the past 6 months after I found your web site, I have been following the progression of your mother's LBD. My mother was diagnosed with Alzheimer's until her cognitive tests declined so rapidly that her neurologist has since changed her diagnosis to LBD. It seems so strange because our family and yours are almost at the exact same point of progression. Our mother was at a nursing facility for about 8 months until our family made the decision to bring her to the house she has lived in for 55 years. We also have a full time caregiver, and for families going through this it may take a few caretakers before you find the one you feel most comfortable with. Our family was lucky it only took us one time to have to replace the caretaker and now we have a lovely caring person, who would do anything for our mother.

Our father passed away 4 1/2 years ago and doesn't have to endure the hurt and pain that your father does. I pray for him daily. My brother has moved into my mother's house and someone from our family is there at all times except for shopping and small errand runs. I and my 2 other sisters come Friday and stay until Sunday evening, to give my brother some down time. I think that is one of the most important things we can do for him. Only families that are going through this can understand how important it is to separate yourself from the situation, even though it is almost impossible to do.

After our father passed away, our mother did the most important thing that anyone could do. She had all her legal situations completed from her last will to her living will. It is almost like she knew something was wrong for some time and felt the need to take any hard to impossible decisions that would have to be made away from her children. She had executors picked out that will help us when any decisions have to be made.

She also is bedridden and all food and liquids have to be pureed and thickened in order for her not to choke or the food not to be forced into her lungs. She seems to have adapted to this very well and we have had no reason or need for suctioning and for that I am so grateful.

We have a wheelchair that is one of the best I have ever seen. The back goes above her head to remove the pressure from her neck, and my brother makes sure she is in it for at least 3 hours a day. It also came with shoulder belts that can be put on slightly, so she does not slip out as she is also rigid. It helps a lot with bedsores and just gets her out of the room that has become her life.

I am sorry if I seem to be rambling, but it feels good to put my feelings and our family's trials and tribulations on paper. As you said, it is hard if not next to impossible to find a support group just for LBD. Friends and other family members just don't seem to understand 100% of what any of us are going through.

Thank you so much for listening and for your web site. It is my lifeline at times. My best to your family and may God bless our parents.


Story 3. Received: June 16, 2006

Thank you for taking the time to share your experiences and I am sorry for your loss. Your mother sounded like a wonderful woman. I am in the UK, it is late at night and I am searching the net — yet again — for help and advice on Lewy body. My father who is 75 was diagnosed in February of this year, but having just read your journal from start to finish his illness has been far more rapid.

The first I knew of him being ill was my mother telling me he was saying odd things. My relationship with him has never been good so I hadn't noticed. I visited and he talked to me about his chickens (they have never kept any), about the boys with keys around their necks, but most worrying about the man that came in the house every night. We tried to get him to visit a doctor but ended up having to trick him by talking to the doctor first and getting him to ring Dad about a regular check he needed. The doctor immediately said there was a problem but thought that this was because of an infection he had in a cut on his elbow. Unknown to us he was also covered in bruises. Antibiotics were prescribed and we were told he would be better in a week.

A few days later my mum phoned. Dad was violent and she was scared. When I got there he calmed down but was very confused and scared me too. He was convinced my mum was having an affair and was inviting a man into the house every night, and he had tried to attack my mum. Because of the aggression we had to get urgent help and he was admitted to a Mental Health Unit the next day. Its been a roller coaster of a ride since then, but I have my dad back. He was never a very cuddly dad, I can't remember ever kissing him, I have not cuddled him since I was a child. Now suddenly he hugs me, kisses me, and tells me he loves me. How cruel is this illness. He is in a Secure Nursing Home as he is sometimes aggressive still but 90% of the time he is the nicest dad I have ever had. For the first time in my life, I love my dad!

He has had several bouts of pneumonia and has just had to have a blood transfusion, he can barely stand unaided, has to be cared for completely, and his speech is barely understandable, but he smiles and holds my hand. My whole world has been changed, barriers I have had up for decades have fallen down, my teenage daughters have now got a proper grand-dad that kisses and cuddles them, and he is so weak that I know I have to make every day count.

Thanks again for being there!

KH (Daughter of GH)

Story 4. Received: July 11, 2006

My dad died when I was 11. I'm now 43. My mother is now 72. My mother has been with a man for the last 30 years, although never married, so after 30 years, I refer to him as step-father. And I've never thought highly of him during those entire 30 years.

For the last several years, I've noticed things in her, but assumed HE would mention something to me if he were alarmed, which he never did. She started getting into more car accidents because of deer. She was averaging 3 deer every winter. He wasn't taking her on snowmobile trips like he used to, and she would call me often and tell me some story she read in the newspaper, and when I read the same story, my only thought was, "WHERE DID SHE GET THAT FROM?" Her reading comprehension was obviously going down the drain.

June 2004. She made the critical mistake of walking the 100 lb shepherd puppy with a leash that she had WRAPPED around her wrist. The puppy chased a cat, and my mother ended up with a face full of gravel. Neither HE nor she told me about this accident. 4 days after the accident, she calls me wondering why her arm is black (black as night!). I rushed her to the emergency room... her upper arm is broken in 2 places, with a dislocated elbow, and a blood clot. To this day she insists, it never hurt!!! I was foaming in fury that HE never saw a reason to call me or get her medical attention. They did all the standard medical tests on her brain, thinking head injury, potential blood clots, etc... nothing found. During the next several months I was constantly getting bizarre phone calls from her. How do I turn on the vacuum cleaner, the computer? How do you cook a hamburger? What's garlic? I knew she had HIM & her sister listed as POA [power of attorney], but she was still her own authority at that time. So when I approached them both about my concerns, they got hostile at me, for what I was implying.

March 2005. That same German shepherd jumped on her while she's standing on a concrete floor, and this time HE DID call the ambulance. She broke her hip badly. At least I got that phone call. The 3rd day Medicare requires she move to a nursing home for hip rehab. And that's when the daily & nightly phone calls began for me. Her 1st night there, 2 a.m., they find her WALKING THE HALLS, no cane, no walker, just her and her 2 legs (1 that just had major surgery). I gave them permission to restrain her and the doctor prescribed meds to keep her "reasonable". By the end of the week, the severe hallucinations began. 30-50 little invisible wooden people. They tried to rape her, kill her & me, throw her in jail/prison, set things on fire, set me on fire, etc. Nursing home doctors determined she has Alzheimer's/Parkinson's, yet meds were making her worse, not better. Medicare finally stopped paying for the hip rehab, so HE & her sister brought her back home and allowed her to continue to be her own authority. They decided the nursing home was deliberately doing that to her for financial gain. She left the nursing home.

May 2005. They threw the meds away (probably the only smart thing they did).

July 2005. I got the magic phone call from HIM! "As long as she's crazy, I don't want nothing to do with her!" In that 5 minute phone call I had to quit my job and move her in with me. I'm an only child. I have no brothers or sisters to help me. I have 4 sons, and 3 were living out of area at that time. My youngest is still in high school and now lives with Dad 'cause of this situation. I immediately contacted her lawyer, and they allowed all POA rights to me. 1st thing I did was fire all her doctors, and hired a new round of doctors. She saw her new doctors in August, and by October had been diagnosed LBD. I had to hide all the phones 'cause she wanted to call 911 on the little people and on me for letting her NOT talk to her daughter (I am her daughter!). These little people hallucinations were 24/7 VIOLENT, therefore life was constant massive agitation. She would hold her cane like a baseball bat and try to smash the china cabinets, windows, fish aquariums, 'cause "they" were in there doing damage. She almost killed my cat 'cause a little person was riding on its back. I was petrified to sleep. They finally got the hallucinations 100% gone by end of November 2005.

December 2005. Her physical abilities slid downhill so fast, we were losing her before our very eyes. Didn't figure she'd make it to February. It was a struggle to get her to swallow her pills and food.

January 2006. They did a last ditch drastic med change, and within 4 weeks, she was mentally and physically SHINING!!!

It's now July 2006. This is the best she's been a few years now. But she's not good enough for me to leave her alone. HE & her sister don't have time to visit her anymore. And if she used to have friends, well, they all abandoned her as well. I now "private pay" hire people to come into the house 2x/week. Gives me a break, and gives her a social life. I call her pill box "the library". Doctors are concerned about her med list — it's extensive. It's possible her med list/dosages could kill her before the disease does.

I guess I'll have to wait and see what next month brings.

Thank you for letting me tell my story.

Story 5. Received: July 17, 2006

I found your web site just after my mother's autopsy results revealed not Alzheimer's as we had thought, but Lewy body disease (2-05). I had kept all her medical records as well as observations when I realized she was beginning to change, and was able to provide all of that to the OU medical center that did the autopsy. Onset appeared to be visible by summer of 1994. She was 80 yrs. old 7-10-2004 and died very quietly and peacefully in the early night of 7-31-04 as I stood at her bedside in her room in the nursing home where she had resided since 10-03. Because both her mother and maternal grandmother died with noted dementia, in their 80's, it was important to my brothers and I that we confirm just what genetic factors we needed to be aware of. While mother had many dementia characteristics of Alzheimer's, she was not a classic case, so we needed the medical confirmation of just what was present. One of the final concluding comments on the autopsy report was "recommended family genetic counseling".

Until these last years of her life, Mother was very healthy. She had all her own teeth, heard better than some of us, and took very little medication. Her death certificate lists congestive heart failure. She was never on high dosages of any medication, because she never responded as they had hoped she would. To ease much of her mental and emotional distress as the last 5-6 years of her life passed, she was on small combinations of several medications, which did help. In mid-July, her doctor told us swallowing was now becoming an issue and all food needed to be pureed. He also cautioned that when this stage was diagnosed, usually a patient had about 6 months to live. I visited with the nursing home people, and asked that they let me know as soon as they thought hospice would be appropriate. They told me we were some ways from that time. Within the next two weeks, my mother died. For all those years of such horrid suffering, she was spared living those final 6 mos. and any hospice care. Her funeral was 8-6-04, but truly it was finished on the night of 7-31-04.

My family is absent of the abundance of memories your family has. My father was an alcoholic, and while he provided well for us in material things, most of our memories of good times and nurturing come from times we spent with our mother at her parents 3 weeks out of every summer, without my father. My father died 4-7-1992. We consider Mother's passing without living out those final 6 months as a very special blessing, and yet remain thankful. I was her caregiver as she had lived close to me since she divorced my father in 1981. My brothers were always very supportive of all things, and helped with managing her finances. We were always able to pay all her bills, and in these last several years, even her medical and prescriptions. Having never been sick and always taking care of her own business, she had minimal health insurance, and nothing to cover prescriptions.

As this is the month of remembrance of both my mother's birth and death, I also remembered your family, and wondered the status of your mother, so returned today to your web site, and have learned of her recent death. Through reading daughter's eulogy, I gained a very vivid visualization of the person your mother must have been in contrast to the lady you cared for in the last few years. Just a reinforcement and confirmation of what this disease does, and the current tragedy that there is nothing medical science can do about it. (I have a masters degree in special education and work with children with emotional/behavior problems as well as learning disabilities. She must have had a very special calling in her life.)

I am greatly comforted in the final memory I have of seeing my mother close her eyes and just stop breathing as I touched her cheek and held her hand for the last time! I cannot tell you of my thankfulness to my Father in Heaven for exempting both her and me from those last 6 months. And in this thankfulness, I felt lift many of the sorrows and images that were in my mind from caring for my mother these last years. And again, I continue to be so thankful for such grace and mercy that would lift such a burden as I had, and often wondered how I would live the rest of my life with all I had been through with my mother, and now, preparing for my 60th birthday, I find most memories that remain with me are pleasant, and have a warmth and aura of love around them. She has entered her eternity, and the next time I see her, she will be absent all imperfections, as will I. And that is something to rejoice about.

My ongoing prayer is that with her departed the last generation of that disease to affect our family. I pray it is also with yours.

If sons and daughters haven't done so, you might consider getting advance care insurance. We have done so as a gift for our children. Our prayer is that we are granted grace and mercy to die in close time proximity, and without pre-death issues of great health problems or disease — we pray we are paying premiums on something we will never use.

I hope you find some solace of comfort in reading this brief on my confrontation with Lewy body disease. Thank you for setting up this web site. Until the return of my mother's autopsy, I had never heard of the disease. I still return to web sites to check on updates. Next time I do checks, I will revisit your web site for any new information.

Sincerely and respectfully yours,


Stories, August 2006 - January 2007
Stories, December 2005 - March 2006
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