Lewy Body Dementia

Lewy Body Dementia I do not understand this disease called “Lewy Body Dementia” and a qualified Dr. needs to diagnose it. Our family lost a Godly woman to this disease and we thought it would be helpful if we shared some of our experiences with you. Lewy Body Dementia is often miss diagnosed because it starts off looking so much like Alzheimer’s and Parkinson’s. Chances are that you know some one with Parkinson’s and you know that many of them live many years with this disease and there are many medications that help manage this disease. Alzheimer on the other hand is a much different disease that seem to have few medications that really help for long periods of time and the dementia is specific to being the more recent memories. Lewy Body Dementia has some of the symptoms as the other two diseases but the memory loss does not have a set pattern. From what we have been told many primary Doctors have not heard of Lewy Body Dementia and therefor miss diagnose it. Another problem people have with this disease is that the medications that are prescribed are not tolerated well. My mother-in-law has always had health problems since she was a young child starting with arthritis, She has never been able to tolerate medication. While the In-Laws were pastoring in Brunswick she developed a clogged artery and her health began to deteriorate rapidly after that. They soon took a smaller church in Norway and pastored there for 11 years. It was there that the Doctors said she had Parkinson, 2 of her sisters were also diagnosed with Parkinson. While in Norway she was having trouble walking and had to stop going to church and started to become paranoid at times. After Norway they moved into a house that they owned a little further away from any of the children. It was here that the problems really got more pronounced. Paranoia got worse, her mobility got to the point that her husband had to help her get out of the chair. After the winter was over they came down to the trailer near 2 of the daughters for a visit and developed heart problems. While they were staying at the trailer they finally got her to see a neurologist that finally diagnosed her with Lewy Body Dementia. They decided to stay at they trailer so they could be near the 2 girls and have them help out with the daily needs. Before moving into the trailer my father-in-law had kept a lot of information from the family. He had been caring for her every need, lifting her in and out of chairs and bed, cleaning her up, cooking and doing all the house work shielding the family from the effects of the disease. Her symptoms deteriorated to the point that she had trouble with reality as well as knowing who people were. For a number of weeks she thought that her husband was just a care giver and was coming between her and her husband. Systems were developed that helped overcome some of the problems. One idea was that when she did not recognize her husband he would leave the house and then would ether call and say he was on his way home or he would come back in and someone would call him by name. With having confusing reality, we would not argue (correcting her would only make her mad) with her but do our best to calm her and bring her back to reality. We were fortunate that after they moved to the trailer that a support group started to come together and the work load became a little easer. We had someone come in to help with getting her dressed in the morning, bathing her and those who gave us great advice on her care and what we could expect. Our greatest strength came from our faith in God. There were a few things that as we look back on the past few years we can see that we could have handled her disease a little better. The first thing is that all of the care rested on her husband for a long time; this is a common occurrence with the older generation because they do not want to be a burden to the children, also parents think that they can handle anything that comes their way. We could have been able to watch what the medication were doing to her,with this medical staff needed to know all the symptoms and good medical treatment. The sooner that a support team could have been in place it would have helped our state on mind. We have made a 4 part video that does a better explains our struggle with Lewy Body Dementia. You may order your copy by going to http://www.lifeinthesunsetyears.com. Our local hospice group has ask for permission to show this video to others.


About havejesuswillshare

Nazarene Minister, work with senior adults
This entry was posted in Dementia, Lewy Body Dementia, life lesson, Uncategorized and tagged , , , . Bookmark the permalink.

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