HE:  My father did.  He had a nervous breakdown and his immune system went south, and that was it. Otherwise, a very healthy man all his life, but he smoked two packs a day; but back then everybody did.  He came from that generation.  He reached out for help in the late stages when he started deteriorating physically to a point where he just couldn’t do it anymore.

GB:  What would you suggest to family members now, when their loved ones are diagnosed with Alzheimer’s, or they suspect Alzheimer’s?

HE:  First of all, there’s a possibility, or more than a possibility of being diagnosed. We really didn’t get a real diagnosis.  No one said this is what you have and this is what is going to happen; and it’s a collective effort.  You have to make these efforts as a family; try not to lose patience with Mom.  She’s going to ask the same question within five minutes. She may start losing her memory entirely.  She may become incontinent.  The list goes on and on.  No one said that to us. So, that’s why I feel so strongly about it.

GB:  I know you lived close to your parents at some point during this.  Did your dad accept your help at all?

HE:  He accepted mine.  He accepted help from the family, reluctantly.  At one time, I even took my mother away.  I was working and I said “Dad, I want to take her with me.”  It was a situation where I would have someone look after her.  I made that arrangement.  That didn’t last and I said, “Okay Dad, you go away, take a break of two weeks. Two weeks is good; that’s it, don’t worry about it.  I can handle this.”  I was much younger, you know; I had the strength and resiliency to do that.  It didn’t go very well.  He returned after a few days, maybe four or five days; that’s it, he was back, couldn’t take it.  It was his responsibility and he was going to put a shoulder to the wheel; meanwhile, he was falling apart.

GB:  What would you like to see for families in this same situation that you found yours in?

HE: Early diagnosis, more information; for example, there’s a wonderful website that they can dial up easy: www.caringforalz.com.  That’s an example of information, a conduit to all sorts of information, help, resources, institutions, and so on; and even practical information for a caregiver, what to do under these circumstances.

GB:  As you go around and people are learning about your family’s story, are caregivers sharing their stories with you? 

HE:  Oh yes, oh yes; it’s a tsunami of information.  It’s a tsunami of sharing.  They can hardly wait.  Yes, of course. We were at a forum in San Francisco talking, the heads were nodding; they all had direct experiences with that.  It’s a terrible thing.  But it doesn’t have to be today.  That’s the wonderful thing.  If my father had been around today, it would have been a different story.