I don't know how many people receive a survey from the state and a medical school after they lose a loved one to Alzheimer's disease but I did the other day. I was totally surprised and amazed that they asked me what I thought of the health care that my father had received in regard to his disease.
I consider it an honor to tell on this survey what I felt about my dad's healthcare. I informed them that professional caregivers need to listen to families more. We as the primary caregiver know more about our loved ones than anyone else. If they were put in a home we know how they reacted to things before they were. I don't know about your readers but I know that from my experience the homes think the family knows nothing. I have had homes say that they can handle Alzheimer and then I swear they know less than I do and I learned as the disease progressed. How many of you have had trouble with the home dealing with aggression? If they knew about the disease they would know aggression is part of it. I had to deal with law enforcement twice on my dad's behalf. One home actually threatened us with having him arrested. Excuse me but that wasn't going to happen unless it was over my dead body! I have had the homes not believe me when I knew my dad was internally bleeding and they almost didn't get him to the hospital in time. I commented on this survey that the best care my dad got was in a VA hospital. He had a schedule and dad knew that schedule down to a tee. I was a survey that I hope helps everyone because I was bluntly honest about my experience with the hospitals which called him a difficult patient in front of him and put him in tears down to the home that did nothing except the basics. Dad is now gone but I will continue to fight for a cause near and dear to my heart. I know Alzheimer's can be inherited and I want better care to take of me than my dad ever got.