Dos viejitos peleando contra DFT y Alzheimer

08/10/2026

Having mix feelings is so normal now

365 Days of Caregiving — Day 1
“You’re Allowed to Admit This Is Hard.”

There’s something I want every caregiver to hear as we begin this journey together:

You can love someone with your whole heart and still admit that caring for them is hard.

Those two things can exist at the same time.

You can be grateful that you still have them and be exhausted from another sleepless night.

You can treasure the time together and desperately need a few hours to yourself.

You can promise to be there until the end and occasionally wonder, “How much longer can I do this?”

You can smile in front of your loved one, walk into another room, close the door…and cry.

None of that means you love them any less.

Caregiving asks things of us that most people will never see.

They don't see the interrupted sleep.

The appointments.

The medications.

The laundry.

The repeated questions.

The financial worries.

The plans you cancel.

The friends you don't see anymore.

The decisions you're terrified of making.

And perhaps hardest of all, they don't see the quiet moments when you realize how much life has changed—for the person you love and for you.

Sometimes caregivers become so focused on taking care of everyone else that they stop giving themselves permission to have feelings of their own.

So today, give yourself that permission.

You don't have to be strong every minute.

You don't have to have every answer.

And you certainly don't have to pretend this is easy.

Some days, success might simply mean:

We made it through today.

And sometimes, that's enough.

Over the next 365 days, we're going to talk about all of it—the beautiful moments, the difficult ones, the things that make us laugh, the things that break our hearts, and even the things caregivers sometimes feel guilty admitting out loud.

Because nobody should have to walk this road feeling like they're the only one.

Caregivers, let's begin Day 1 together. Finish this sentence in the comments:

“The hardest part of caregiving that people don't see is __________.”

Someone reading your answer today may realize for the first time that they aren't the only one feeling that way.

08/04/2026

If I ever get dementia, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things:

1. Every time you enter the room announce yourself. “Hi, it’s ………...” NEVER ask- Do you know who I am??? That causes anxiety.

2. If I get dementia, I want my friends and family to embrace my reality.

3. If I think my dead friend is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.

4. If I get dementia, don’t argue with me about what is true for me versus what is true for you.

5. If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.

6. If I get dementia and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.

7. If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.

8. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.

9. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.

10. If I get dementia, ask me to tell you a story from my past.

11. If I get dementia, and I become agitated, take the time to figure out what is bothering me.

12. If I get dementia, treat me the way that you would want to be treated.

13. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.

14. If I get dementia, don’t talk about me as if I’m not in the room.

15. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.

16. If I get dementia, and I live in a dementia care community, please visit me often.

17. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.

18. If I get dementia, make sure I always have my favorite music playing within earshot.

19. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.

20. If I get dementia, don’t exclude me from parties and family gatherings.

21. If I get dementia, know that I still like receiving hugs and plenty of laughing.

22. If I get dementia, remember that I am still the person you know and love.

In honor of someone you know or knew who has dementia. In honor of all those I know and love who are fighting Dementia/Alzheimer’s.

Someone once said if you take care of someone with dementia, you lose them more and more every day. When they get the diagnosis, when they go through different stages, when they need treatment, and when they pass away.

This is called "the longest goodbye". As the brain slowly dies, they change physically and eventually forget who their loved ones are. They could end up lying in bed, not moving and not eating or drinking.

There will be people who will scroll past this post because dementia has not touched them. They may not know what it's like to have a loved one who has battled or is still battling dementia.

To raise awareness of this cruel disease, I would like my friends to put this on their page today.

Hold your finger on the post to copy and paste to your timeline.

A special thank you to anyone willing to put this on their timeline for dementia awareness.

07/10/2026

No toda demencia es igual.

Mientras el Alzheimer suele iniciar con olvidos, la demencia frontotemporal puede empezar con cambios de personalidad, y la de cuerpos de Lewy con alucinaciones visuales.

Si notas cambios en conducta, lenguaje, visión o atención en un ser querido, consulta a un médico. Detectarlo a tiempo marca la diferencia.

¿Conocías estas diferencias entre los tipos de demencia?"
Si te preocupa algún síntoma en ti o en un familiar, lo mejor es consultar a un profesional de salud para una evaluación adecuada.

07/09/2026

07/07/2026

Conocer las fases de la enfermedad es muy necesario para poder entender al ser amado

El Alzheimer es una enfermedad que pasa por distintas fases.

Etapa Avanzada o Fase 3:

En la última fase, el paciente depende por completo de terceras personas para su subsistencia.

Necesita ayuda incluso para las tareas más básicas: comer, limpiarse, moverse.

La memoria empieza a perderse tanto la reciente como la remota. No reconocen a sus hijos, cónyuges, etc.

Su comportamiento es como el de un niño pequeño: llora, grita, se agita, no comprende una explicación y pueden tener periodos y comportamientos desinhibidos y agresivos.

En cuanto al lenguaje balbucean. Muchos pacientes permanecen rígidos y mudos.

Les cuesta controlar sus esfínteres, se atragantan, le cuesta tragar y no controlan sus gestos.

Aumentan las complicaciones y riesgos derivados de infecciones, deshidratación, desnutrición, heridas por inmovilización, etc.

En ocasiones, la causa final de la muerte suele estar relacionada con alguna de estas complicaciones.

07/07/2026

Empezábamos a notar cosas raras pero yo le eche la culpa a “se esta volviendo flojo” “se está volviendo cómodo y ya no se preocupa por sus citas médicas” empezó a estar más callado, empezó a tardarse más haciendo cosas cotidianas, empezaron los viajes en silencio y las palabras cada vez costaban más trabajo salir.
Pero con todas estas señales nunca se me ocurrió unir los puntos y darme cuanta que era una enfermedad que la Afasia había llegado a nuestras vidas, que la Demencia Frontotemporal llegó a vivir con nosotros y sin invitación.
La demencia (Alzheimer, cuerpo de Lewy, vascular, frontotemporal) no dan señales de existencia hasta que ya es tarde