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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, March - May 2005 (4 stories)

Story 1. Received: March 31, 2005

My heart and prayers go out to your father, your mother and your family. My mother is very similar to your mother. My father died 13 years ago and the 8 children take care of Mom. She is 78 and was diagnosed with LBD about 5 years ago. She had to have a feeding tube put in 3 years ago because she didn't eat enough to stay alive. Mom always wanted everything done for her. The tube has been wonderful. Her skin is beautiful, she has no bedsores, because she is getting enough protein thru the tube. She also can eat by mouth but it is mainly for pleasure. I give her lots of ice cream. She hasn't been sick until a few weeks ago when she came down with influenza. She came through it and is back in the nursing home. Her life is similar to your mother's but she is not in pain and some days she smiles and recognizes us. She will say a few words on occasion.

I will keep you in our prayers as we face each day together.


Story 2. Received: April 13, 2005

Dear Journal,

I just wanted to thank you for the time you have put into this journal. I have been reading it regularly, and I had read the last entry on March 30, 05, right before I went to visit my father with this disease in the nursing home. He was there for 2 years after we exhausted all other options. That afternoon, as I entered my father's room, he looked at me and asked me not to leave him. We put him to bed for his afternoon nap, and I stayed with him and talked awhile. He then told me he wanted to die. I gave him permission to do so and told him he deserved to rest. He looked into my eyes and said, "Okay, P." Within 2 minutes, his life drifted away. His fight was over and he was granted a very peaceful death.

May God bless everyone who has or will ever have to deal with this horrible disease.


Story 3. Received: May 18, 2005

I continually check my email to see if you (your Mother's children) have updated the journal. I can not thank you enough. I am constantly learning from you so please keep the journal going.

To sum up ... my husband at 62 was diagnosed with LBD. He is now 65 for which I am thankful. The financial end of keeping your loved one with you at home ... you know what it is. My husband is bed bound majority of the day, however, the aide and I can still get him up to come to the table to eat and to go to the commode. He does not know when he urinates or has a bowel movement but we keep taking him so that it will be a habit. At least I look at it as getting him moving a little. He does, like your Mother, have bedsores. Thanks for telling me about the doughnut [Update, May 2005], as I had not thought of it. I just keep trying to take care of him ... will it help? ... I don't know. The only thing that I can say is that he is clean, happy (or so I think), eating (might be with his hands), and is still at home.

One thing that I will mention is that my husband also flinches when approached. I don't think that anyone has abused him ... I just feel that it is a "natural" reaction for patients with LBD, we are violating their space. However, I will mention that my husband would say, "Don't hurt me." He is a retired police officer and believe me, I really don't think that anyone has ever mistreated him. He is still very strong. So ... please don't feel that a caregiver has caused this reaction from your mother. Frankly, I don't know what I would do without the care and loving support of the caregivers I have been blessed to have care for him. But again, I have had some not so good ones. I was just always around. I never leave him with a new one until I have established a good rapport.

Like with your Mother, constipation was an issue but the urologist prescribed Miralax which we mix with juice every morning. I also crush up two Fibercon a day and give them to him in pudding. Maybe this will help your Mom. If you are like me, I will try anything to allow my husband the quality of life he deserves.

I will mention that I am looking into homes which specialize more in dementia patients. Whether I place him in a home, I don't know. The three years I have taken care of him have taken a toll on my body. I just can't handle him.

One last thing I will mention... my husband has stopped talking and like your Mom clenches his fists. He is not in a fetal position. One thing that I started last week was having a young lady come from our local medical center to administer a massage for therapeutic purposes. Whether this will help, I don't know.

Always know that I think of your Mother and especially your Father. My prayers are with your family.

Again, please continue to update the journal. Love, LA

Update received: February 6, 2006

LBJ - I have tried many times to write a note to tell your family that my husband passed away December 5, 2005. The cause of death written on the death certificate was Lewy Body Dementia. He was only 65 years old and in my opinion too young to leave, but after what he and his family had been through, it was easy to let him go.

In short .... I along with family and caregivers took care of him at our home since Spring 2002. However, when the agency that was helping me with his care notified me that they would no longer provide the home care, I just could not go through the "headaches" of trying to find another agency that would or could assist me. I, frankly, was too tired ... my health, mentally and physically, was going downhill. So ... on Sept. 23, 2005 I placed my husband in a health care facility which was 15 minutes from our home. Hospice was there for him in the mornings, bathing, feeding, dressing, etc. and I took the late afternoons and stayed until he went to sleep at night. Two days after I placed him at the facility, he asked where he was. I responded, "You are in a place that can take better care of you than I can." He said, "Okay." He received very good care and of course, I thought that I did better. But, the most important thing that I gave him was getting my health back and giving him that undivided attention and love that he so needed. He may not have known who I was but in my heart I so want to believe that he did. N passed away peacefully on December 5, 2005. I was with him.

If you have any questions you may wish to ask me, please feel free to contact me. I certainly wished that I had had someone that could have told me how it would be near the end, such as symptoms to look for. I had Hospice but .....

My prayers are with your family.

Story 4. Received: May 21, 2005

Dear Journal Family and other families,

Thank you for writing your stories. I don't feel so alone anymore. It's strange, how hearing someone else describe the same things, seems to allay your fears, but it does. We have an 83-year-old father going through this now. Looking back, and it seems hindsight is what we all run on, I can see symptoms even 10 years ago. He has been falling for some time and we wrote it off. He would get flustered easily. He would get lost while driving. We worked to get his license taken away because we feared he would kill someone with his vehicle. We thought the increased confusion was just old age or because he was depressed over losing his driver's license. Now I don't believe so.

He started to call us at all hours of the day and night and would think it was a different time than what it was. We talked him into moving from his apartment to assisted living. After only two weeks in assisted living, we took him to the hospital. We thought he had had a stroke as the confusion had gotten worse. That was on Feb 4, 2005. That day was the last time he walked. They kept him overnight because they thought he might have an infection that was causing his confusion and they would need to treat it. My husband and I left at 2:30 am Saturday morning and when we came back Saturday at 12:30 pm he was delirious. They were trying to admit him to a ward but he would not stay in the room because he thought the man next to him was having his liver stolen for sale on the black market and that they had taken it out while my father was in the room. They gave him a sedative and later started him on drugs to help the delirium but now we know with Lewy Body that that can accelerate the disease. And it did.

Like I said, he has never walked again. He is now in a nursing home and just recently has started staying in bed, refusing to get out. He has taken many trips around the world (all in his head) and I continue to have a different job every time I see him. It is difficult to look at my father, to still see the man he has always been, then he speaks and I know he is nowhere to be found. And still the man looks just like my father.

I would just like to wish upon all the families dealing with this disease a lot of love, a long memory of what their family member was like, and a really good sense of humour. Again, thank you for sharing your stories.

Love from Canada,


Stories, July - November 2005
Stories, February - March 2005
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