Facing Dementia Together​

It was in November 2020 when Gabriel, my husband of 20 years,
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.   One year ago we could still have a conversation, albeit short. Now, he’s limited mostly to how old are you, nice car, it’s delicious, and he says “wow” with childlike wonder about many things. Some days more words flow, especially when he is with more people, though they are not always the right words or not enough words for a complete sentence.  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.  Now his memory is deteriorating. He has forgotten how to shave and his sons’ names. Yesterday we were talking with his son Rodrigo on a video call, and while we were on the call with him I said that Rodrigo is in Canada. He turned away from the phone and asked me, “Who is 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. But I need your help. Fortunately, I found a very good nursing home. It has an ideal number of residents per nurse. They do cognitive, physical and occupational therapy several days/week with physical exercises daily. His own psychologist trains the staff to work with people with dementia, so they are specialized in providing the appropriate care for this type of disease. And she is going to train them in his specific type of dementia, which is quite uncommon.  He’ll have his own bedroom, which will make the transition easier.  He will be able to bring his own bed, bureau and other furnishings, which will make his room more like home. And of course his guitar and his word finder puzzle. Yes, he can still do both!!   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. Our goal for this first campaign is US $14,400 to secure his comfort and care for the next two years, starting September 2nd, 2024. We don’t know how many years of life he has left. But however many they are, it is my wish to give him the best quality of life possible. We welcome your generosity. 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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