To be a caregiver

For many years we lived with our backs to Huntington’s disease.

Until the first movements and character changes began.

I didn’t think about becoming a caregiver, but that’s the reality of life.

Life plans were transformed.

The disease progressed and more and more care was needed.

I believe that no one is prepared to be a caregiver for the person you love, but the ability to adapt is something very important.

Routines help a lot to have a structured day and the people who help us are also very important.

We have managed to create a team around her that helps us feel good, to know that we are important and that way we can take the best possible care of Carmen.

You're stealing me her smile

I talk to you as if you can hear me, I have been told who you are but I have never seen you, I know a lot about you but we have never spoken.

I live with you every day and little by little you are stealing from me what I love most.

Yes, you are Huntington’s Disease.

You have been stealthily penetrating our lives to take away many things from us, with that silent presence that characterizes you.

One of the things that has always characterized Carmen has been her smile, a smile that transmitted tranquility, satisfaction, optimism, joy and desire to live.

Little by little you are stealing it.

And for me, the possibility of enjoying it.

What am I supposed to do?

Maybe the normal thing would be to hate you forever or chase you trying to get me back what I love most.

Maybe it would be giving you more importance than you already have, but I’m not going to give it to you.

If that’s what you want, I’m not going to give you that satisfaction.

I want to enjoy life, I don’t want to spend my entire life hating this disease.

I need those strengths to do much better things than hating you.

I plan to use them to enjoy my Family, my Friends and Life. (yes, with capital letters).

I am going to fight this match with all my strength. I already know that in the end I’m going to lose it, but I’m not going to give you even a moment’s respite.

That would be my defeat, to stop fighting day by day.

Asking and not being answered, seeing the lost look on their faces and not knowing if they are understanding you, is very hard.

Being silly and not getting a smile back is a very high price to pay.

For some time now, I feel that empty look that passes through me, that I have to interpret in my own way.

But the worst of all is that he barely smiles anymore.

The progression of the disease is slow, unstoppable. A more complicated phase is coming, but among all of us around us we are going to try to make it as bearable as possible.

I plan to multiply that smile that you are stealing from me around me, because that is what fills me with life.

I can smile.

Javier Lafuente

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