When Deena was first diagnosed with Alzheimer’s she was still very verbal. She worried that people would think she was making it up because she could still talk so well. In fact, she was verbal until very late in the disease. Yes, sometimes she would get confused and not to able to think of a word or substitute the wrong word for an object, but on a regular basis she was very articulate. This verbal ability actually hid the extent of her deficits and complicated taking care of her.
Lately, I’ve been thinking a lot about how it’s easy to assume that a person with Alzheimer’s who is still verbal is also still able to make competent, sound decisions. And if that assumption proves to be wrong, the person with Alzheimer’s may make financial, healthcare or living arrangement decisions that they truly can’t make.
When the assessment was conducted to determine Deena’s eligibility to start her Long-Term Care insurance, Deena participated in answering the Assessment RN’s questions. Her answers were clear, concise, and completely wrong. Here’s an example:
Assessment RN: “Have you fallen lately?”
Deena: “No, it’s been a long time since my last fall.”
Reality: She had fallen 2 days before.
Assessment RN: “Do you dress independently?”
Deena: “Of course. Sometimes I ask Sue what she thinks I should wear, but I don’t need help to get dressed.”
Reality: I suggest a couple of options of what to wear, steady her while she puts on her pants, sometimes helped with buttons and put on her shoes.
Assessment RN: “Do you shower independently?”
Deena: “Yes. I don’t need any help.”
Reality: I stand by in case she needs help and cue her as to which product she should use to wash her face, hair, body.
So, if the outcome of the assessment had been based solely on Deena’s answers, the Assessment RN would have concluded that she didn’t meet the eligibility criteria and the start of LTC insurance would have been delayed. Without my additional input, there was no way that the Assessment RN would ever have known that Deena’s answers weren’t completely reliable because of her ability to respond was so clear and articulate.
I understand how difficult it is to tell someone they can no longer do something that they’ve always done. It represents a loss of independence and control, and really who wants that? And at the same time, it means that someone else, often the caregiver, has to take over that activity. Someone still has to pay the bills, drive to the grocery store, make rational health care decisions. All of it adds up to more responsibility and stress for the caregiver.
But avoiding the tough decisions doesn’t make life easier. It just kicks the can further down the road, until the issue can’t be ignored any longer. Hopefully the change occurs before the consequences become dire.
I so miss the long, interesting conversations that Deena and I always had. And it was hard to watch her struggle for a word or thought. But those painful struggles helped me to understand that beneath her outward ability to talk, was an impaired brain that didn’t allow for its former rational thought process. I just glad I figured it out when I did.