PROBLEM: I realize that while Dad is already depressed and dealing with his imminent demise, he has been forced to stare death in the face while watching one of his best friends die. I am trying to understand Mom and Dad’s mix of complex emotions at this difficult time.
SOLUTION: Just ask. Instead of wondering and tiptoeing around the topic, I simply created a warm, safe environment in which my dad could say anything and then invited him to share his deepest thoughts. Importantly, the rules of this disclosure process are that there are no wrong answers and anything goes – total freedom for my dad to share without consequence.
SOLUTION: Five Wishes. This universal palliative care list of five questions helped my dad contemplate and decide how he wanted the end of his life to go, plus it gave him and my mother an opportunity to make decisions together and forge a bond that would become our family’s guiding force as the stages of Alzheimer’s progressed. Behind closed doors with a doctor, they discussed such things as living at home vs. an assisted living community to the very open-ended question of What do you want your loved ones to know. These five questions opened the flood gates of free-flowing communication within our family – a process which has finally given my father some feeling of control, some peace of mind, and has gotten us all on the same page so that when decisions need to be made in the future, we can use Dad’s answers as our reality check. These are his Final Wishes. Our goal is to honor them.
Five Wishes: (click here for sample)
- Who you want to make health care decisions for you when you can’t make them.
- The kind of medical treatment you want or don’t want.
- How comfortable you want to be.
- How you want people to treat you.
- What you want your loved ones to know.
Death is in the Air – VIDEO TRANSCRIPTION
Joleen: So what I wanted to do as an experiment is sort of talk to you guys about what’s going on in the head and the heart about this stage of your life and your diagnosis and, you know, what’s going on for you day to day. And whoever wants to talk, I’ll just kind of follow the action.
Fran: It’s your story. You start.
Frank: It’s my story? Okay. Well, it’s a precarious position that I find myself in. It’s not something that I had uh– I don’t think anyone thinks about the future as far as how they might find their demise, how they may end up. Through some tests that have been run at the University of Michigan on a few different occasions, we’ve been diagnosed with Alzheimer’s, which is a degenerative disease of the brain, and my brain is basically dying. And today I’m feeling pretty good, I’ve been surrounded by family all day, this is cool. But the truth of the matter is I’m not gonna get any better, there’s no cure for this thing. And so I’m at peace with it, I don’t like it at all but I’m at peace with it.
Joleen: And you had a good friend pass away today. What is that doing to you, Daddy? Is that eating you up a little?
Frank: No, I’m relieved. Visiting with him, my brother-in-law Jack, in the hospital several times over the last couple weeks, spending many hours there, I was saddened for him being in that state, and also saddened for the family and all the friends that were there. They all wanted to be, and so did Mom and so did I want to be there with him, but it’s certainly not that we wanted him to be in that position. And so I’m sure that people are gonna have the same attitude, I would hope, for me as well, that they love me dearly and they’re going to miss me, but it’s going to be a tough road because this is a long slow process that we’re going to be going through.
Fran: It was really difficult because Jack was in the hospital for two weeks, and the last week that Jack was laying there, he wasn’t in a coma but he did not know basically what was going on. Very seldom he’d wake up and mumble something. He’d be breathing and then he’d stop for ten seconds. And then he’d start breathing again and then he’d stop. And it’s like, you’re just waiting there like, okay when’s he going to die? And after a week it was a really long drawn out process. And Alzheimer’s will go on a lot longer.
