Enfrentar la demencia juntos

Fue en noviembre de 2020 cuando Gabriel, mi marido desde hace 20 años.
was diagnosed with incurable progressive dementia. 

In November 2020 Gabriel was diagnosed with incurable progressive dementia. It is the aphasia type, where you lose your understanding of words and how the world works. He was told to immediately stop working and driving. What does that even mean to not understand how the world works? After four years I now know. For example, if a glass breaks, he doesn’t know it can cut him. He starts picking it up with his bare hands. And when he gets cut and bleeds, he goes on with whatever he is doing without reacting. Naturally, if you don’t know what bleeding means, why do anything about it? Or, what does it mean when someone cries? I couldn’t help but cry the other day while we were eating breakfast as I thought about the need to move him into a nursing home. He looked up from his plate and saw my tears, pointed at his eye, chuckled slightly, and then went back to eating. I have watched as this physicist, scientific journalist, translator, and writer’s understanding of the world has shrunk further and further. At 70 years old, he has had a full life, with two children, three grandchildren, playing tennis, learning guitar, working for the National Institute of Public Health, the Secretary of Education, the Electrical Research Institute, and founding and editing the health magazine for youth called Mochate.   Hace un año, aún podíamos mantener una conversación, aunque breve. Ahora, su comunicación se limita principalmente a preguntas como '¿cuántos años tienes?', comentarios como 'bonito coche' y 'está delicioso', y exclamaciones como '¡guau!' con un asombro infantil por muchas cosas. Algunos días logra pronunciar más palabras, especialmente cuando está rodeado de más gente, aunque no siempre son las palabras adecuadas ni suficientes para formar una frase completa.  And still, he shows appreciation for everyone who helps him, saying wholeheartedly “thank you very much,” and “you’re beautiful,” “you’re precious.” I am thankful that he still remembers those words. They help to build a lovely connection with others. He is also generous. He always pushes the plate of papaya over to my side of the table when there is just one or two pieces left. And in spite of his uncontrollable craving for sweets, he offers his own when he sees someone doesn’t have any. This kindness is his essence, and that has not changed.  Ahora su memoria se deteriora. Ha olvidado cómo afeitarse y los nombres de sus hijos. Ayer, mientras hablábamos por videollamada con su hijo Rodrigo, le mencioné que Rodrigo está en Canadá. Entonces, se apartó del teléfono y me preguntó: '¿Quién es Rodrigo?'.  Fortunately he can still walk and bathe and dress himself. Eventually though, he will lose those abilities and, finally, his brain will stop sending signals to keep his organs functioning. That’s what happens with incurable progressive dementia. Over time, we have had to withdraw from all of our former activities. It’s gotten increasingly lonely with just the two of us here at home. He sleeps a lot: 13 hours at night and another 2 to 3 hours during the day. At this stage in his illness, I can’t give him the cognitive, occupational and physical stimulation that he needs. And he is declining more and more rapidly. After consulting with his psychologist and psychiatrist, and mine as well, we have decided that the best thing for him (and for me) is that he go into a nursing home. Now is the time, while he can still interact somewhat, and his new caregivers can bond with him as the appreciative and generous person that he is, before he loses the ability to communicate altogether. Pero necesito tu ayuda. Pero necesito tu ayuda. Afortunadamente, encontré una residencia muy buena. Tiene una proporción ideal de residentes por enfermera y ofrece terapia cognitiva, física y ocupacional varios días a la semana, además de ejercicios físicos diarios. Su propio psicólogo capacita al personal para trabajar con personas con demencia, por lo que están especializados en proporcionar los cuidados adecuados para este tipo de enfermedad. También les formará en su tipo específico de demencia, que es bastante infrecuente.  Tendrá su propia recámara, lo que facilitará la transición.  Podrá llevar su propia cama, buró y otros muebles, lo que hará que su habitación se parezca más a su hogar. Y, por supuesto, podrá llevar su guitarra y su sopa de letras. Sí, ¡¡aún puede hacer las dos cosas!!   The nursing home costs $1,400/month, which is a good price here in Mexico for a private bedroom. Half of this cost has already been covered. We need your help to pay for the other half. Nuestro objetivo para esta primera campaña es de 14.400 dólares. para asegurar su comodidad y cuidado durante los próximos dos años, a partir del 2 de septiembre de 2024No sabemos cuántos años de vida le quedan, pero sea cual sea el tiempo, mi deseo es brindarle la mejor calidad de vida posible. Agradecemos su generosidad. If you have any questions please don’t hesitate to contact me. I will be happy to provide any information you would like to know. With appreciation,Ellen (Elena) Weiss  

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