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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, July - November 2005 (3 stories)

Story 1. Received: July 4, 2005

Dear Journal:

My 96-year-old mother has increasingly exhibited many of the mental symptoms of LBD. Paranoia, delusions, depression and, in her case, an unaccustomed degree of "meanness." A month ago we were privileged to be able to take her to a neurologist who specializes in geriatric cases at the Sun Health Research Institute in Sun City, AZ, west of Phoenix.

After a private consultation with us regarding her behavior and a thorough examination of her, he wrote his diagnosis on a slip of paper and said, "This is what it looks like to me. Go to these websites (he gave us two), look around and see if what you find matches your mother's behavior." He scheduled her for a head MRI the next day.

I wanted to pass this along as it is the only concern you expressed in your journal on which I thought I might have some information. There were many questions I neglected to ask on our first two visits but heritability of LBD was not one of them. His response was that so far they have not been able to define a genetic component for this disease. Second, that at 96, Mom has outlived all the known inherited forms of dementia. Small comfort for her but somewhat more for us kids and I hope for you as well.

Mother had 3 children, a daughter now 72 years old, a son now 69 years old and another son, me, now 57 years old. So far, no symptoms anyone is willing to own up to. She and my dad retired to Phoenix in 1972 after 15 years building a business in Ohio from scratch. She managed her own investments up to about four years ago. She reluctantly quit after she began having great difficulty balancing the checkbook. Looking back, that was probably the earliest symptom we might have recognized.

Three years ago she fell and broke her right hip and wrist. During her recovery the Darvocet and Percocet painkillers caused extreme waking hallucinations, some of which she was aware were halucinations, she said. While I stood at the foot of her bed in the convalescent center, she described a man crouched below the sink in an alcove behind me. She also described a seven foot tall nurse standing beside me a few moments later. She said she could see both of them vividly, even though she knew they weren't there. After she stopped the painkillers, the hallucinations diminished but never went away entirely. She believes to this day that the quarters she occupied then, a modern hospital room in a seven story glass and steel building in downtown Phoenix, was originally an old tavern and that she saw men at night painting over the dirt and smoke on the walls and ceiling. Probably the second symptom we might have recognized. The doctor confirmed this effect of these painkillers on LBD patients.

The doctor prescribed a new-on-the-market drug, Geodon, whose effects were immediate and dramatic. The day after the first dose she was actually cheerful, something we hadn't seen for some years. That lasted for about two weeks and she has begun slipping back down to depression but so far not nearly as deep and not as frequently.

A month later on the second appointment, he took her off the Benadryl tablet at bedtime that was helping her sleep. Benadryl is an antihistamine which also makes one drowsy. In addition it is an anticholinergic which evidently means it decreases acetylcholine, a neurotransmitter that is already deficient in older folks. He also started her on Aricept and we will watch her closely for negative changes, thanks in no small part to your excellent journal. The head MRI showed a normal brain for a 96 year old and otherwise she seems to be very healthy for her age.

Like your mom, ours has a living will and we have power-of-attorney. Presently she is living in a top quality group home only a few miles away. Her daughter is managing her finances and my wife and I are tending to her routine needs. Another question I didn't ask the doctor was "What lies down the road for her?" I've done a lot of looking and so far, in my estimation, your website is the world's definitive resource on that. We look to the future with no small degree of trepidation but armed now with far more information than before. Thank you so much for taking the time and effort to put it together and put it out there. Our hearts go out to you for all that your mom, your dad and you have been through.

Sincerely, G and S T

Story 2. Received: August 28, 2005

I have recently come across your website while looking for information on LBD.

From what you have said in your most recent posting, it sounds like your mother is in about the same stage as my father is now.

When I came across your site I was looking for answers, or hoping for them, on what to expect next. We live in a small area and nobody seems to know much about it. Dad was just diagnosed in January of 2004, but we had known something was going on for about 2 years before that. We had actually thought he was having strokes, but we were wrong. He is now in a long-term care facility, and the people there are wonderful with him. He was living with one of my sisters but became very ill with an infection. He had to be admitted to hospital and never really recovered to the stage he was at. His illness seems to be progressing very quickly since that time.

Before he went into the hospital, he was walking and could carry on a conversation most of the time. That was less than two months ago, and he is now bedridden, sleeps most of the time, and rarely can talk. We didn't realize that things could move so quickly with him and it is hard to comprehend.

I have four sisters, and all of us are dealing with it differently. Unfortunately, I am not dealing with it well. I spend time with him every evening and as you all know, it is so hard to see him going through what he is.

I know there really aren't any real answers out there, and that every case is different.

Thank you so much for your website. It has helped more than anything that I have come across. God bless you and your family.


Story 3. Received: November 3, 2005

Our saga began in December 2001. My dad (71 years old) had a nightmare and tackled his dresser in the middle of the night. We spent the night at the emergency room. Two weeks and two surgeries later (with misdiagnosis in between) he was recovering from spinal stenosis surgery and surgery for a subdural hematoma. January of 2002 he was released from the rehabilitation hospital. I would say he was 70% okay. He discontinued many activities he had once enjoyed. Snow skiing and biking were replaced with walking for exercise. One year after his recovery was considered complete, Dad became obsessed with his will and his estate. We met with a lawyer and he made sure everything was set up, including his living will. Over the next year and a half, I noticed his memory was beginning to falter and he no longer wanted to travel. He had trouble balancing his checkbook and I took over his financial affairs. In September of 2003, Dad misjudged an oncoming car (it was a block and a half away). He thought it was bearing down on him and he ran to get out of the way. He tripped and hit his head on the curb. His symptoms were similar to his first injury in 2001, but there was no bleeding on the brain. We went to several specialists and tried to find a cause for his lethargy and confusion, but there was no medical reason for his problems. He was wandering at night, convinced his finances were compromised, and was gullible (this from a man who used to trust no one). His sister came in September and tried to help him get out of his "depression" and his girlfriend came in October to help him get back on his feet. His girlfriend convinced us that he wasn't going to be safe living at home by himself. She was afraid he would wander out of the house at night.

My sister came in November and we moved Dad into a small assisted living facility close to my home. Dad adjusted well at first. I would pick him up and take him to my kids' sporting events. We took long drives together and I visited with him once or twice a day. By the time my sister and brother, A and K, came the first weekend of December, Dad was having periods of major confusion. He would go in and out of being lucid. We took him to the doctor and he straightened up and seemed normal. The doctor said she could tell he wasn't and ordered blood tests. We all went to the psychologist to talk to him about Dad's "depression" and sleeping disorder. Dad got mad at the doctor for smiling at him and when Dad leaned forward, the TV remote fell out of his pocket. The TV remote was what "they" were after and "they" had wired his walls and the assisted living facility to track the remote back to him. The psychologist said that Dad had dementia. Even with medicine to help him sleep, Dad still had a rough time at night. He was awake most of the night and when he slept, he would sleep right on the edge of the bed as if it took too much effort to move in a safe distance. He was afraid that he wouldn't make it to the bathroom in time and always made sure he went to the bathroom before leaving his room. He still wanted to drive. I finally had a doctor tell Dad he had to take a driving test before he could drive again because of the medication he was on. They gave Dad a series of tests and he did poorly on all of them.

In December, when I came in the morning to take his blood sugar and blood pressure, he would either have all of his clothes on the coffee table (he was packing to leave) or he would be accusing someone of being mean to him. He wanted me to go to the bank and get him $1,000 to have in his wallet, just in case he needed it. He also would get very upset if there was a movie on TV that had an emergency. He felt like it was real and he was worried about the survivors. During this time he "escaped" at 4 am and was headed for Kansas. (Later when he was lucid I asked if he had any connection to Kansas and he said he'd never been there, why did I ask?) Also during this time a physical therapist worked with Dad to help with his balance, shuffling gait, and flexibility. She said Dad wasn't capable enough to remember to exercise or use the information she gave him.

Finally, I bulldozed my way into a neurologist's office for an emergency appointment. He asked Dad who was president, what year it was, and what Dad's occupation was. Dad got all three wrong. He had been answering these same questions correctly for the last two years. Dad was mad at me for taking him to the neurologist, he felt like I was overreacting. The neurologist ordered tests, but felt like Dad had Parkinson's. He prescribed Parkinson's medicine. This made Dad even more paranoid and delusional. On Christmas Eve 2003, Dad could no longer walk and wasn't able to talk. On the advice of the doctors and the assisted living staff, Dad was checked into a behavioral hospital. The hospital said they would take Dad off of all of his medicine and once he was "clean," they would introduce one medicine at a time until they had the perfect combination for Dad. This is where we first heard of the mini-mental test, which he wasn't able to complete. The doctor in charge of Dad said my sister, brother, and I should consider "comfort measures only." He felt Dad would not last beyond 6 months and would be surprised if Dad would make it one year. A and K and I decided we weren't ready for comfort measures only.

They put Dad in an adult walker, he hated it and weaseled out of it every chance he had. He lost continence and never regained it. He felt he had to go to the bathroom every 5-10 minutes. He had hallucinations and tried to leave. Whenever I came he wanted me to take him away. One time when I called to talk to him, he told me he was going to die in one minute and that I needed to get there fast. Dad was discharged from the behavioral hospital after he stayed the maximum amount of time. They weren't able to find a great combination of drugs to help him. He was still in and out of lucid moments.

A and K both came to visit Dad once a month or whenever I would call for help or if I thought they should. They both dropped everything and came when I said I didn't know if he would recognize them again if they didn't come right away. Dad's 84-year-old sister and his two nieces came in February. We weren't sure if he recognized them or not. It seemed like Dad could come up with the appropriate response if it was a rote question, but open-ended questions puzzled him.

Dad moved again to a facility closer to my home that was set up to handle his mobility issues. The young women that worked there were very sweet to Dad and he was very sweet on them. He always was a flirt, but this really brought out the rascal in him. They said he always wanted kisses and hugs. He was able to communicate 30-40% of the time, but thought it was 1944 or that we were in a car instead of the living room. One time he parked the car for me -- while he was sitting in his reclining chair. Another time he'd had a bad day and I went by three different times to sit or lay down with him. The last time I asked how he was doing and he said, "Not very good. M said she was coming by today and she never did." I'm M and I had been by 3 times!!! A and K would call and he would try to talk, but wasn't always successful. I think they spent a lot of air time yelling to get Dad's attention for Dad to hang up while Dad was watching whatever was happening in the living room or kitchen. He always wanted to talk on the phone, but would lose his focus and just hold the phone on his chest. I took him for walks around the block in his wheelchair and he would say "You sit, I push now."

In March his foot swelled up and I took him to the emergency room. It was another all night event. He had blood clots all the way up his left leg. We went to two different hospitals. This was the first time I had ever heard a doctor mention Lewy Body. I came home and looked it up on the Internet and realized this was the only illness that really fit his symptoms. He was confused most of the time now. I came by to see him in the hospital and he had his last lucid moment. We had a 30-minute conversation. I explained what was happening, how K, A, and I were handling it. I told him how much we loved him, how we knew that he loved us, and all the wonderful things he had done for us as a father. I told him that he wouldn't get well and that we were doing all we could to make him comfortable. I cried buckets and he was so sweet and sad. He couldn't talk to me, but when I said do you understand, he said OK. Then, it was just like an infant, he had overload and went to sleep. When he woke up, he was gone again. Sometimes after that I would think that he understood what someone was saying, but he couldn't respond. It seemed like if I asked him to lean to the left, he would push to the right. The connections in his brain were crossed.

In April we went back for a check-up on his foot, and they put him back in the hospital again, they said it was infected. He stayed in the hospital another week. He was confused the entire time. From this time on, he never did get out more than one word here or there, mostly it was gibberish. After this visit, the doctors and nurses talked to me again about comfort measures. I talked to A and K. I was more comfortable with it than they were. I felt like Dad was not only uncomfortable and in pain (he had bedsores on his tailbone and feet that wouldn't get well, in addition to his blood clots). He was mad, scared, confused, hallucinating, unable to communicate, his vision was messed up, and he choked most of the time he ate. When Dad and I had talked about the living will, he said if there was a terminal illness and he was like a vegetable, he didn't want to live that way.

K, A, and I talked to hospice. The last doctor had told me that Dad had weeks to live, not months. He weighed less than 90 pounds and was the most fragile patient at the home we had him in. Every week he had a different complication. We decided to go with hospice. They said they would let nature take its course, they wouldn't treat any illness Dad had aggressively, just keep him comfortable.

On Mother's Day in May, I spent most of the day with Dad. He choked on his food and seemed angry. The next day, I came to feed him breakfast and he couldn't swallow it. We tried oatmeal and he couldn't swallow it, nothing would go down. The hospice nurse came and said to see if he got better through the day. He didn't. I called K and A.

Dad slept a little that night, but the next day he was worse. Hospice said he had aspiration pneumonia and if we took him to the hospital they would hook him up to machines and keep him alive with a feeding tube. They said he probably wouldn't get well, but if he did, he would choke again the next week or so and go through this again until the hospital couldn't get him well. He was always so scared and confused in the hospital and his progression had been so fast. The doctors said they hadn't seen a dementia case go this fast. At one point they thought Dad had Creutzfeldt-Jakob disease (mad cow disease). From September to May he lost a major ability each month. We kept thinking we would find a specialist who would be able to recommend that one brand-new or unheard of drug to bring back Dad. By May, we knew that wasn't going to happen and that Dad's fight was over. K and A flew in. On Friday, Dad came out of his coma and looked long and hard at each one of us. It was an awesome, tender moment, we each told him how much we loved him. We stayed with Dad around the clock until he died Monday May 17th at 1:00 pm. He had been breathing regularly the whole week. A and I went home to take a shower and K called to say his breathing had changed. In the 15 minutes it took us to get back, Dad was gone. He was 74 years old. A's birthday was the next day.

I looked all over trying to find more about Lewy Body to see if anyone had a rapid case like Dad's and haven't seen it so far. I think, and the doctors agree, that Dad's head injury in 2001 accelerated his disease. I know he knew things weren't right and that's why he made sure his affairs were in order. He taught me how to be brave, how to persevere, how to love, and how to let go. My faith in God has guided me through the maze of hospitals, doctors, insurance, selling his home, and dealing with the loss of my Daddy. K and A have been the most loving, supportive siblings anyone could ever ask for.

Thank you for your website. It was amazing to see the similarities between your mother's case and my dad's. I pray that your mom, your dad, and you children will have peace and joy in the memory of your once-vibrant, amazing mother. I know I have those memories of my dad. You are welcome to call if you ever need a shoulder to cry on or another opinion from someone who's gone through the same valley.


Stories, December 2005 - March 2006
Stories, March - May 2005
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