Tonight's picture was taken on August 22, 2009. Mattie was home for about a week or so, before we returned to the hospital for good. Mattie died on September 8, after many harrowing days of intense pain and an inability to breathe.
You see Mattie holding his tooth fairy box, as he had just lost his front tooth. Mattie and the tooth fairy had quite a relationship. Mattie did not want money, instead, he wanted specific items. He always left the tooth fairy a message and over the years his requests from her were things like a necklace made out of pasta, a hot wheels car, or a Lego piece. We bought this fairy box together on one of our trips to Florida. I thought this box would bring lots of joy and happiness. To this day, this box is still in my nightstand with one of Mattie's teeth in it.
Quote of the day: Apathetic behaviors are generally characterized by a lack of motivation and indifference. To the caregiver, the person with dementia and apathy can appear as showing less or no interest in previously enjoyed activities, lack of motivation to initiate activities (including self-care), lack of ability to persist with activities, withdrawal from social activities, and showing less emotional responses to daily events. ~ Dr. Nathan Herrmann
Last night I got in bed and felt compelled to search for "dementia and lack of interests." I am perplexed by my dad and his behavior and since I live an isolated life, I really felt the need to learn more. I keep asking myself..... is this my dad's personality or the disease!?
What popped up during my searches was the word apathy! In fact, over the last ten years, researchers have investigated the differences between depression and apathy in patients with dementia. Certainly older adults get depression, but apathy in dementia patients is illustrated by a decrease in these three symptoms:
- Goal-directed behaviors (e.g. starting and/or participating in conversations, doing activities of daily living, seeking social activities etc.),
- Cognitive activities (e.g. loss of interest in news, personal, community or family affairs etc.),
- Emotions (e.g. diminished or absent emotional responses to positive or negative events etc.).
As soon as I read these three things above, I said.... that's my dad! My dad indeed has apathy and it has NOTHING to do with what I am doing or not doing. There is NOTHING I have found that interests him. He isn't interested in reading, watching TV, talking to friends, getting on the computer, going grocery shopping (which he used to LOVE!!!!), and the list goes on. The only thing he wants to do is relax and sleep. He prefers quiet and not to hear talking, the TV on, and no loud sounds. I feel like I am living in an insane asylum, except I am the one running the facility.
Sometimes putting a name to a problem, helps provide insight. In this case, it does help me understand that it isn't my dad being difficult. It is a disease that has stripped him of the person he used to be. That said, that doesn't mean that I am going to give up and not try to continue to provide him stimulating days. I will, but I also have to be realistic. There are apparently three types of apathy and my dad has all three.
One of the articles I read through highlighted signs to pay attention to, and they are listed below. Again my dad has ALL of them. It makes it truly difficult to engage with him and if you were to sit at a table with him while eating, his focus is ONLY eating. He tunes you out and forget about conversation. You would be sitting in silence. In many cases it is like caring for a body all day, but the body is missing a brain in many cases. It is terribly sad but I honestly don't have much time to process this feeling, because my mom has her own host of problems which keep me very busy.
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