Breve Carta a Papá 12 años después de su partida

Hace 12 años que te fuiste, el 16 de enero del 2005… víctima de un cancer de hígado fulminante que te llevó en cuestión de días, después de descubrir que tenías cancer. Nos sentimos tan impotentes!

Siempre pienso en ti, viejo. Te recuerdo: tus chistes malos con tu incredible sentido del humor (los cuales heredé), tu amor por la humanidad que siempre empezó por casa, y tu sabiduría que me ha guiado desde que te fuiste.

Mamá sigue deteriorándose. Hace una semana la mudamos a skilled nursing porque se negaba a recibir la atención que necesitaba en assisted living. No te voy a negar: es duro ver su mente apagarse poco a poco: siempre cree que soy mi tío. Pero una constante es que aún te recuerda: la tuya es una de las fotos que tiene en su cuarto.

En fin… te queremos y te echamos de menos, papá. No dejes de echarnos un ojo desde donde estás.

Repeating herself. Repeating herself. Repeating herself.

If you read this blog (though I wouldn’t blame you if you don’t), you probably know that my mother has Alzheimer’s. She was diagnosed several years ago, and I would like if I said it’s been an easy road: it hasn’t.

Along this journey, before yesterday, she has had at least three “leaps” we’ve been able to observe:

  1. That “OMG” moment, when it became obvious to me that something was off: I had dropped her off in church, to pick her up an hour later. After mass was over, I kept waiting and waiting for her, to be surprised by her phone call… from her home. She had gotten a ride back home, because she had forgotten I was outside. Soon after that day, she was diagnosed with Alzheimer’s.
  2. She had been living for nearly two years in an Independent Living facility, and some things pointed at the need for her to get more assistance in her day-to-day, things that resulted in her taking less care about herself than we were used to see her do. When I spoke with the Executive Director at her residence, she told me we needed to find my mom a place where she could get Memory Care… she was taking a “leap” into a new level of care.”
  3. For a few months now, more often than not she doesn’t remember I am her son. She still associates me with someone “familiar” (a kind gentleman, and at times, she is sure I am her younger brother). The first time that this happened, it was very hard to accept…

Yesterday, a new “leap” happened. I was used to her repeating herself: conversations with my mom have been cyclical for quite some time. The same topic comes back over and over. But yesterday, she started repeating words and short phrases, over and over. For example, she would tell me:

“Señor, señor, señor, señor, señor…” (“Sir, sir, sir, sir, sir…”)

This is all very fresh, and not easy. We will continue to be there for her. But it’s not easy… it’s not easy… it’s not easy…

A big hairy goal for 2014

Now playing: “Miss mundo astro.dita 69” by Masseratti 2lts (2006)

2013 is almost over. It has been packed with many good news:

  • At home: having come to the USA in 2000, and become a permanent resident in 2007, we finally applied for our US citizenship in the second half the year. We will likely become citizens in the first few months of 2014. Andreina continues to inspiring so many with her art, and Santiago (10) is about to finish Elementary School.
  • At DHF: the summer lit a spark of hope and determination in many of us, diabetes advocates. This passion is serving as a driver, pushing us to do more to make the voice of people touched by diabetes heard louder, and earning us the support of the Helmsley Trust for the third year in a row.
  • Overall, I have managed to accomplish more through adopting The Secret Weapon, as a Getting Things Done (GTD) approach via Evernote (thanks to @CorinnaCornejo).

However, there have also been tough moments:

  • My mom’s Alzheimer’s has continued to evolve. In April, we moved her to a Memory Care facility, and new challenges involved with her care and with the increasing costs associated with it have reared their ugly and ever-present heads.
  • While I am well aware that it could be much worse, by early December my HbA1c (an indirect measure of blood sugar averages in the past 3 months) had reached 7.7, the highest it’s  been since I got diagnosed with diabetes.

As I sit here, I realize my focus has been so much on the outside (my passion in advocacy, my mom’s new “normal”), that I have overlooked some basic practices involving my diabetes care and my mental hygiene, leading to the place I find myself in now… and one I am determined to do something about in 2014 and beyond.

I need to take care of myself and my family first. Sounds like a fairly simple thought, but one that I need to make central in 2014:

  • I met with my new endocrinologist at Kaiser a couple of weeks ago and what I need to do was so obvious: be more mindful, slow down… I used MySugr, logging EVERYTHING for just one week and was able to spot so many basics I was paying attention to, correct them and see the difference.
  • In line with slowing down too, I decided to trim down my time on social media significantly, accompanied with following fewer people on Twitter and Facebook (I have already not getting any FB notifications for nearly a year, and it’s freed up so much time).
  • I found myself trying to get TOO much done, reaching #ZeroInbox quite frequently at the expense of nearly 1,000 Things (no exaggeration) that made their way to my Evernote. I am working towards having less than half of that by the end of January: focus on fewer things, saying “no” or “not now” more often.

What am I going to do with the time I carve?

  • Play more (my son got us Rumikub for Christmas) with my family, go to concerts and games, and spend time outdoors with my them. Plenty to do in the Bay Area!
  • Less time on the phonein a recent visit to New York, with my buddy Peter Nerothin, we managed to survive without using our smartphones a single time!
  • Read more books: it can be books on Kindle, but books… not just tweets, Facebook updates or blogs. It takes more time and perseverance.
  • Possibly start a book: who knows? If I don’t spend the first 20-30 minutes of my day checking Twitter or email, I can probably get some serious writing done in 2014!