My husband aged 49 was diagnosed with Lewy Body Dementia recently. Not knowing anything about it, I have spend hours researching it, only to find out that not only does the general public not know what it is, bit neither does most of the Healthcare Professionals. This created a very dangerous situation for him (and the rest of family), as his treatment was based on medication that is like poison to a LBD patient. Now knowing that he should not be taking any anti-psychotics, certain cold medications and pain meds, I can better manage his care. His condition increases his risk to fall, which has resulted in two separate emergency room visits. He is tired, he is afraid and anxious, he is forgetting names and places, has trouble finding the correct words to complete a sentence....he is just not himself and he knows it.
Our kids struggle to get the grip of this disease, why doesn't dad take me to the park (daddy has to sleep every afternoon). That has to be explained to a 7 year old.
We are still a long way from winning (not that winning happens with LBD),but trying our best is all we have.
It is everyday at a time, every event handled as it comes.
We have each other, and for now that it is enough.