I am posting this for two reasons: as an update for anyone who knows my dad, but also as a discussion of some of the therapy modalities that are available for people with dementia and other impairments of memory, etc.
Often we feel sorry for our loved ones and want to “help” them by doing everything for them and thus relieving them of the burden, but what that actually does is accelerate the process of loosing function when we do not allow them the opportunity to think and try to do things for themselves. That accelerates their loss of skills.
We are spending a lot of time reinforcing “orientation” to him. Normally we are oriented x 4: person, place, time and situation. He is oriented x 1: he usually knows who he is. Sometimes he is even confused about that. But… with repeated reinforcement, he does better. He is brightest in the morning when he wakes up, and less bright when he is tired and in the afternoon. He is frankly confused after sunset and especially in the evening when he is tired and getting sleepy. He does not know where he is or the year or why he is where he is… but he knows that he is not at home. When he IS at home, sometimes he does not know he is there. In the morning he knows he has two sons and can sometimes say our names. He does not recognize me. When he is tired and it’s dark, he doesn’t recognize my mom. When he says “Mother”… he means HIS mother. During the morning and early afternoon and evening when he is not too tired, he asks where his wife has gone. At night, he talks about Mama… and uses different word patterns. He remembers his brothers and sisters, but not his children… and often not his wife…. At night he has no idea he has children and confuses his brothers and sisters for his own children. He confuses the idea of father: his being a father with his not really having known his father because his father died when he was very young. During the morning he can tell about how his brothers helped his mother raise him. At night he cannot. He hallucinates and delivers rambling soliloquies. He also develops word-finding difficulties. But on formal recall testing… he had excellent immediate recall… so there is something there to work with to reinforce and develop.
There are two aspects of dealing with dementia and how WE respond is very important. HIS response is “normal” for his situation. If I get upset because my own father doesn’t recognize me, then I am not going to be able to make decisions that benefit HIM. He needs reinforcement to remind him of what the world he lives in NOW looks like.
My dad also has Macular Degeneration, which compounds the issues because he cannot see well. Essentially he sees in splotches and even those splotches are blurry and distorted. He also has formed visual hallucinations and scintillating scotomata (specks of flashing lights). Because of his dementia, he cannot differentiate between what he sees and what he hallucinates. He also has Otosclerosis (hardening of his hearing) and misinterprets sounds… as well as having auditory hallucinations at times.
Now… let me try to explain his World….
“Reality” looks like a Van Gogh or Impressionist painting to him. But the visual hallucinations look perfectly real. “Reality” is filtered via his faulty retinas…. But his visual hallucinations are formed in the parts of his brain that ordinarily interpret vision… because they are not getting used… because of his faulty retinas…. So… they fill up with chemicals… and spill chemicals… that trigger PERFECT pictures…. And… he doesn’t have the memories and reasoning abilities to figure out that the Impressionist art is real and the real is imaginary…. And… then people… some who claim to be people he knows… but who don’t LOOK like the people they claim to be… because they are older… and their features are missing or distorted… try to tell him that they are important people in his life… and that what he sees as real… really isn’t… but they don’t look like who they say they are… or even like humans at all possibly…. Well… no wonder he gets confused. Especially when he is tired and taxed.
The best answer that we can come up with is to try to constantly reinforce where he is, the day and date, and the situation. We can see a flicker of a light. It’s like a spark when you’re trying to build a campfire. This may turn out to be a very positive experience. If nothing else, it’s helped us define a trajectory moving forward into the future.
One more thing…. When a doctor or nurse or therapist asked your loved one with memory issues a question… don’t be too eager to jump in and answer. Don’t correct the answer. Not allowing the examiner to examine… will lead to missing significant findings… and likely impede the care of your loved one…. The answer isn’t all the examiner is looking for: they are looking at the processing as well. Your loved one also needs to exercise their mind as much as possible. Being patient can be frustrating.
God is good.