60 karma · joined October 2, 2011
Equally important is being sensitive and getting ready for what is to come, i don't think you can be optimistic so instead we focused on appreciating the time together, i started having more personal conversations with my father in law, we got closer and somehow that bond remains. We learned to be very patient because he went through a long period of aphasia, if he got stuck on certain phrases, we just gave him a bit of push completing the words he was missing. We also took long walks on nature. Being surrounded by a peaceful environment is important. As the disease advanced, he started to feel very confused, he couldn't recognize us sometimes and that made him angry, there was usually small hints before the outburst triggered, again being patient and trying to calm him down was important. Because he was relative young he was physically strong what was challenging but it is manageable, i think he needed to feel safe so focusing on that was a good strategy. Now he is not longer able to communicate, occasionally he says a few words and sometimes it can be even funny, it is fascinating how the brain still responds to humor even with dementia. When I sense he is nervous, I gently touch his back, and I can feel how much it reassures him. Support groups to share these experiences are important, take all the help you can get. When the disease reaches its final stages, seek the help of professionals. Their support can help the family maintain a sense of normalcy and be functional.
By the way, I just realized that I said it’s hard to be optimistic, but one thing I can truly say is that I value life so much more now. Every day that I wake up and feel present is a gift.
After that, he went through a violent period and within a few months he could no longer speak or eat on his own. He now wears diapers and we had to hire a professional caregiver to help with his daily routines. Our family impact has been dramatic, we are not a large family so we had to spend a significant amount of resources to help his wife who is his main care giver. We have since received some assistance from the public healthcare system, but it took time, and the support did not keep pace with the rapid progression of his symptoms.
I have seen relatives pass away from other causes but this is by far one of the cruelest ways to die. After a few years of dealing with this disease, i cannot fathom any justification - good or bad - for the massive deception orchestrated, apparently for the sake of Masliag and others' careers. I hope they are held accountable and brought to trial soon for the damage they have caused to society and science.
Now i am starting “Infinite Jest” by David Foster Wallace.
Covid19 created a real short-term incentive for remote work, that generated some momentum around it, there are some companies which saw the real productive value behind remote work but most others didn't see it and they are taking these mid-road of "hybrid" work.
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Please let me know if i can i help you further.