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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, May 2004 (5 stories)

Story 1. Received: May 17, 2004

I was very moved by your journal and felt compelled to thank you for sharing your story. My dad just died 10 days ago. He was originally diagnosed with Alzheimer's in December 2001 but there were signs for a couple of years prior to that. Like your mom he took Aricept but in his case it seemed to help or to at least slow down the progression until about 6 months ago. At that point he developed more obvious Parkinson-like symptoms, although in retrospect we realize he had the shuffling gait for the past couple of years. He became incontinent, more delusional, etc. -- everything your mom has gone through only compressed into a matter of months. His doctors were somewhat baffled by the rapidity of his decline and tried many different medications but none seemed to work and, in fact, several seemed to aggravate the situation.

My mom had been taking care of him alone but about a month ago she agreed to having a part time companion come in 2 days a week for 4 hours to give her a break. That worked well but after 2 weeks it became apparent that more skilled care for a greater period of time would be necessary as he was no longer able to shower or brush his teeth on his own and had all but stopped eating. We arranged for an aide to come in for 8 hours a day 3 days a week. That lasted only 1 day. At that point we began making plans, reluctantly, to place him in a nursing home. He was still able to get out of bed and walk short distances on his own but he had fallen a couple of times and had fractured several vertebrae which caused him severe pain.

On May 2 he became so agitated and uncontrollable that he was hospitalized. 2 days later he had deteriorated to the point that with the advice of his doctors we transferred him instead to hospice. He too had executed a health care directive specifically stating that he wished no artificial means used to prolong his life including feeding tubes and artificial hydration which we all supported. We realized that the quality of his life was so poor that prolonging it would be pointless and cruel even though it was painful for us to support a decision that would undoubtedly hurry the time when he would no longer be with us.

When he was transferred to hospice the doctor treating him there, after talking to all of us and reviewing his medical and anecdotal history, advised us that he most probably had Lewy Body disease rather than regular Alzheimer's. We had heard of it through the Alzheimer's Association but didn't know much about it. Now that we've done some research it seems to fit. He died at hospice Friday, May 7 with the entire family at his side. The end came very quickly. I can't praise the hospice staff enough for their love and concern. We are sad, of course, but realize that he is now at peace.

My sympathy is with your family. As you say, no one truly knows what you've been going through unless they have been through it too. I guess, in a way, my dad was among the lucky ones because his worst suffering lasted a very short time. I will keep your family in my prayers. Thank you again for sharing.


Story 2. Received: May 19, 2004

I think your journal site is a good thing. It is however so difficult to read, isn't it? I too cope/deal daily with this worst of all diseases!!!

My husband was diagnosed in April of 2000 with AD. Had suffered with depression and was being treated with Wellbutrin for sometime - as most of you, not really sure just when it all started. We would play golf and B (my husband) would never know just whose ball was whose or where it was. Often playing someone else's ball. On the greens he would putt thinking the hole was one place when it was clearly another. I would wonder about it, but that was a far as it went. Friends would inquire, "what's wrong with B?" but we just thought it was probably the depression or such. Then doctors gave him the dementia test i.e. count back from 100 by 7's, remember some words and then come back to them, etc.

I took him to the University of South Florida for testing and to see if he could enroll in a study (perhaps the one re- anti-inflamatory drugs as to Alz.) Well no go as he was already on Aricept (just in case). Well after three years the Dr. at USF decided he needed to see a Neurologist as he suspected Parkinson's. Sure enough, they decided he had Parkinson's also!!! Now another year later, the decision is Lewy Body Dementia - "Of course all the signs are there we just seemed to miss them!"

He now sleeps most of the day and night - talking now and then to his visions - he reaches out to space, picking up things, twirling strings, pulling on my arm,twisting it as if he has no idea what it is. Now and then some aggression (which I deal with by standing off as not anxious to use the seroquel much - only 12.5 mg at night). A xanax now and then for his nervousness. He really can no longer stand or walk easily, even with help - so my dilemma is can I do it? and for how long? I have him at home, I have help come in to help with baths and some respite care three days a week. If he were anywhere else he would be falling constantly and then be sent to the ER - probably dealing with a broken hip, etc.,etc. This way I can keep a close eye on everything while still getting out. The need to sit by his side and just hold his hand is very important to me, and I hope to him - somehow it must get through!!! For the longest time he fluctuated with the alertness and ability to get around, talk more etc.,etc. But now the good times are few and far between. He just seems so very tired - wants to say something but then just quits and closes his eyes. He eats only finger foods by himself, I feed him anything needing utensils. He always greets the kids when they come with a "hello L," or "hello M," or "hello J, sweetie," and he gets them all right. Thirty seconds later he is asleep. Now and then he won't eat or even open his mouth, and lo and behold I find he is holding a huge amount of saliva and won't swallow it but won't spit it out either!! Really just doesn't know what to do with it. The days are getting harder as it becomes more and more difficult to get him steady enough to stand for a Depends change. (He has been incontinent for about six months). Our family doctor has called in Hospice, which was a surprise to me, but has been a very good help with what is needed right now. Somehow, the info on this disease is so varied and sparse (including the nurses with hospice) that we never know what to expect. Do we have years of this level or what?

I know all of you out there are dealing with many of these same things and oh boy isn't it tough? My children come over as often as possible and stay now and then, but really unless you deal with this 24/7 no one could possibly understand the heartache. My husband will be 75 years young and I turn 71 this Sept. This has been a good thing for me to just write all this down - hope some of it will be a help to others.

Story 3. Received: May 20, 2004

hi there,

your journal is written from the heart, i can feel your pain and sorrow and share those same feelings with you.

my 70 year old father has gone through many diagnoses over the past few years, including post alcoholism syndrome. after a parkinson type episode and 10 days in hospital, his doctor's weekend partner said he felt daddy had lewy's body disease. daddy has had unexplained falls for almost 4 years now. he has had distorted vision. i have seen him go from having a yard to be proud of, to a slow shuffle like walk. it is so sad to see him deteriorating like he is. to fall for no reason, to be unable to even mow his prized lawn. it hurts to see these changes in him, and the dr jekyll and mr hyde routine as well. the memory lapses, the severe shaking, the desperate look in his eyes because he knows something is wrong but he is unable to fix it. his friends have all disappeared and my husband and i have moved from tennessee to be here with him. one of his "friends " told me yesterday, i have lost a friend with your dad's dementia and it saddens me. i almost cried when i told him that daddy asks why this friend doesn't visit anymore. it hurts to see some people be so concerned about their own feelings that the feelings of the "sick" person are totally forgotten. :o(

my husband and i are very fortunate to have developed a circle of friends in the past year that are very supportive to us. frequently just coming to visit dad for an hour or so giving my husband and i some time just for the two of us. a much needed break for us to enjoy each other's company then to come back home refreshed and ready to deal with all again.

i have found some help with the council of aging. we are also going to take the caregiver course given by them, that will also give us a support group of other caregivers who can share their knowledge with us. locally we have a talk tv channel and the local hospice has several shows that give sound advice as well. and one particular one i would like to pass on is this: there are always people who come and visit and have all the good intentions in the world or so they say, but their presence or advice is very disruptive to the routine that you have worked so hard to make right. think of these people as seagulls, seagulls come in and make a lot of noise, eat your food, and make a royal mess, and then leave it for you to clean up. thinking of them as seagulls may make it easier for you to deal with them, and let their intentions just slide out to deep water and sink and go on with what was working best for you.

thank you for sharing your story, and please feel free to write any time you would like to.


Story 4. Received: May 22, 2004

As I read everyone's sad story I realize now how right Mom's doctor was when he said that this is a "dastardly disease."

It is 3:00 in the morning and, as usual, I am worried about what to do next. Mom was diagnosed this year with Lewy Body Disease and it's been an uphill battle just to get the damn diagnosis!!

In 1994 when my Mom was 59 she was diagnosed with Parkinson's Disease. For seven years the Parkinson's Disease was a minor nuisance in her life. She continued to work and take care of her adoring grandchildren. About three years ago we all noticed that she would frequently lose her train of thought and would occasionally be unable to find the words for certain things. She was great at compensating and if, for instance, she was unable to come up with the words "ski boot" would say "those shoes you wear in the snow." Then, my parents downsized and moved to a condo in the same town. Mom was extremely confused and, as she said herself, very "discombobulated." It's been a steady decline of memory ever since. She's had psychological testing - and the results subsequently lost. She's been to numerous neurologists trying to determine the problem as her Parkinsonian symptoms have never progressed while her memory has steadily declined. I suppose you could say we're lucky in that right now we're only dealing with memory issues. She's still the sweet, happy, non-combative Mom I've always had. But, how frustrating this all is. It's frustrating dealing with the doctors who seem to know absolutely nothing about this disease. It's frustrating not knowing the right questions to ask in the doctor's office. It's frustrating doing research to find out more about the disease. It's frustrating to see this woman who adores her seven grandchildren forget their names. And, it breaks my heart when she says to me, "I might not remember your name, but I know that I love you."

We have a very close family (two brothers and a sister in late 30's to early 40's) and we all help to take care of both my Mom and Dad. I seem to do more because I am single and don't have a family to care for (the focus is now on my parents rather than meeting Mr. Right). But it's getting harder. I've been laid off twice in the past year and now have a new job and can't take much time off. My sister is 9 months pregnant (and it's so sad to see my Mom so flat - not as excited as she would have been). My sister and I are the primary caretakers since we both live within a couple of miles of Mom and Dad and my brothers, though they live in the same town are about 45 minutes away. But it is quite clear that my Dad needs a break and won't admit that he can't do it any more. It's so hard for him. My Mom did EVERYTHING for Dad and it's so sad to see him making the bed and doing laundry. I know he misses having conversations with her about their kids and grandchildren. To make matters even worse Dad has been diagnosed with Stage IV Leukemia. He doesn't want to give up his independence but is clearly stressed and depressed - but would NEVER admit it.

You'd think my parents were old - but Mom just turned 70 and my Dad is 73. My parents are quite fortunate in that they are financially secure and quite capable of getting the best care - including live in help or moving to an assisted living facility, but my Dad refuses to even discuss it. I honestly think that he is waiting for a miracle. I don't think it's occurred to him that Mom is not going to get better and will only get worse. Mom is on Sinemet and Nemenda. My Dad firmly believes that the Nemenda has made her worse - he doesn't understand that time has made her worse. Mom has moments of lucidity and when I call their home every day and speak with her it's amazing how she sounds like my Mom. But I know we're losing her - maybe not physically right now, but mentally and I miss her.

I apologize for rambling but what a wonderful forum this is to just vent in the middle of the night. Thanks so much for the opportunity to share my family's story.

Story 5. Received: May 26, 2004

Dear Journal Writers:

Thank you so much for this journal on Lewy Body Disease Dementia.

It all started for us in 1993 when my father suddenly died leaving my mother in a state of confusion at age 73. Then, since we live in the San Fernando Valley in California, we had an awful earthquake in 1994 which further added to her stress. Also, in 1994, my husband walked out of my life, and mom felt even more abandoned as I went into a fog for a couple of years. In 1995, mom had colon cancer, but did not need therapy. After recovering from that, she was okay for a couple of years until I started noticing her great difficulty at getting out of a chair and becoming confused about simple things she used to do with ease. Then in 1999, it became very apparent that mom could not take care of her checkbook, etc., like she used to or drive anymore, so I moved in with her.

Since then, mom has been struggling with the disease for about 4 years now. She was first diagnosed with Parkinsons and put on Carbidopa/Levodopa, then Aricept, along with her regular medicines. However, she was having such memory problems, falling, and unable to remember what was on the stove, that it soon became impossible for me to continue to work and keep her home. She would forget to eat, or think she had eaten when she hadn't, and forget to take her meds, and became quite dizzy. I am divorced now and have to work, and last October I became so exhausted that I finally called the local, very close Sunrise Assisted Living here, and asked if they could take her for a respite for 3 weeks. They took her, she reluctantly went, and I slept for hours and hours in a mountain cabin. When I came home, I knew I couldn't handle the stress of taking care of her by myself anymore, so she has moved in. My only sister lives a 7-hr drive from us, so she is unable to help, and my two grown, married children live down the coast, so they are unable to help either. I'm not complaining, but like you, because of her inconsistent symptoms, I thought at various times I was the one that was crazy or doing something in some way to hasten her spiral downward. Your journal is like reading a story about my life with my mom too. It helps me to see things in a new light and to feel free of the guilt for her health problems and not being able to "make it better."

She has been taking Carbidopa/Levodopa, Aricept 5mg, Triamteren, Tricor, Levoxyl, Mobic, 2 Detrol LA, Docusate (medicated cream for her whole body rash), Premarin, and Aspirin Chew 81mg. Because of her hallucinations, (she thought a man was coming into her room and wanting sex from her, but he would disappear somehow when the phone rang - we looked into it, but there was never anyone there) and the fact that 10mg of Aricept made her very nauseated, her neurologist had her try another medicine called Memantine HCL 10mg which has really helped! She can now find her words, where before she would call an apple a banana, etc., and she is less confused during the daytime. However, I can identify with you as she gets worse in the later afternoon and the confusion gets really bad at night (She tells others I'm her mother also). To keep her in Sunrise with extended care, plus the extra expense for them to give her more than 8 meds a day, and pay for all the medicine ($800 per mo), we are paying out approximately $6,000 per month. I am going to look for a list of board-and-care homes in the area to see if there is an opening and if they'll take her. There is only about enough money to care for her for 18 months now, then the condo I'm living in will have to be sold and I (62) will have to live with my daughter and son-in-law since I don't make enough to pay for an apartment in California by myself ($1,300 per mo). Somehow, there must be a better way - ha, ha!!!

Anyway, I could go on, but you all summed it up as if my mom is your mom. Thanks for letting me spout steam tonight. God bless you for being here. Did you try the Memantine -- if so, how long did it make a difference? Did you ever look for a board-and-care home?

Since I understand how your life and concerns are now, I will pray daily for you and your mom -- as I do for me and my mom. L

Stories, July - September 2004
Stories, February - April 2004
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