I was participating in a CarePartner meeting the other day when the question came up, should I tell my husband that he has Lewy Body Syndrome or not? This brought up so many questions for me, not the least of which was how the CarePartner could know about this diagnosis without their husband knowing? Then I remembered my Dad. In the later stages of his illness, the doctor could have told him anything and he wouldn’t have been able to understand or recall it after the appointment, one more reason why CarePartners must accompany their loved ones to appointments. Is that where this question came from? If so, it wouldn’t matter what they told their husband, it probably wouldn’t be retained.

Lewy Body Syndrome is associated with Parkinson’s psychosis and impacts up to 50% of our loved ones. It usually starts with mild hallucinations and/or delusions and can be accompanied by memory lapses. In the beginning, the Person with Parkinson’s recognizes that it isn’t real. We would let Dad know he was the only one seeing whatever it was and he could let it go. As things progressed however, the delusions often became his reality. He didn’t recognize us or understand where we were. He became trapped in his thoughts and was even violent at times. It would not have done us any good to try to tell him he had a disease at that point, it would have just made him angrier.

My husband is not showing any signs of Lewy Body Syndrome, but we still make sure to blame Parkinson’s itself for any symptoms he does have. It is the disease, not the person that creates the  difficulties we face. It is essential that we both remember this and know that he is always doing his best to overcome anything PD throws his way. Yes, he needs to know that he has a disease as long as we can both accept and understand what that means and the knowledge doesn’t make things worse for the situation.