| HN Mirror

Professional advice and care are the best options but i think i can share some of our personal experience for what they are worth. I would say having a certain level of pragmatism is important without being insensitive with the person with this disease, for example one thing i wish we would have done earlier was to declare my father in law as "legally incapacitated", i am not sure what is the proper term in english but here in spain it means that they cannot legally bind themselves to anything without the consent of a tutor/guardian. This is a painful process because it takes time (judges, doctors, etc... must asses the case) and this acts as a constant reminder to the person with the disease of what is coming, making him/her feels useless. Another key aspect is being focused from the begining on what the healthcare system can provide for your relative as the disease progress, these bureucratic processes tend to be slow on my country, and since dementia progresses at different rates for each individual, it’s best to start looking into options early. Symptoms might advance rapidly in younger individuals.

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.