Ramblings of a Damned Daughter. Love. Family.

I’m just gonna say it. I am not digging Christmas this year. At all. 2009 has been, all in all, a challenging year for me and I just don’t feeling like toasting the holidays. OK, maybe I’m focusing more on the negatives of the year — there have been plenty…… but lots of positives too. Good job. Good friends. Lots of love. Kind acts. Two balls of fluffy kitten love. Sunny skies in December. Parents who love me very much. A mother who still tries to mother me……………… in her own demented way. I suppose love is the thing. Love takes strength. Love is courage. Love is fearlessness. Stare love in face. See what you get back.

Interestingly, I’ve been called a pessimist or negative a lot this year……
thing is, I challenge anyone to walk in my shoes (or any caregiver’s shoes, especially the full-timers) and still see the silver lining every second of every day.

I struggle with that label: NEGATIVE. But the thing is, this disease never really lets me move on. Every week is a reminder of the loss. When the holidays come around, it’s like taking a BIG YELLOW HIGHLIGHTER and highlighting the fucking loss……… specifically, the loss of family or what I always wanted family to be. Happiness, lots of people, a big living room filled with tinsel and laughter.

My heart is filled with a mixed bag of emotions…………….sadness, happiness, grief, anger, passion, frustration, love, joy, wishes, fears, anxiety, wildly vivid dreams, HOPE.

I confuse myself.

There are days when I feel strong. There are days when I am my own worst enemy. I have no idea when this is going to end. It’s terrible to say, but when I think of HER death, I think of the ties that bind being cut loose. FINALLY. Freedom? I don’t know. Will guilt consume me instead? Will the holidays serve as a reminder of how I failed her or how I should have done more?

Negative.

Blue.

Life is good.

Optimist.

Glass half empty.

Full.

Family.

L’amour.

Death.

Dark.

Angel.

Dismal.

Blue.

Me.

Nefarious thoughts.

I have no bits of wisdom when it comes to any of this.

I could give you my usual HOLIDAY TO DO LIST: Keep the crowds to a minimum, it may confuse your demented parent. Try to stick to the schedules. Don’t ask, “Do you remember…….,” avoid celebrating around sun downing, etc. You know this. You can Google this…………. instead, I want to talk about the caregivers and how the holidays affect all of us, part-time, full-time, near and far.

Dementia is a TERMINAL disease.

We are the damned ones.

Oh dear.

This post has turned quite negative.

I’ll leave it as such.

A dash of hope.

There is a light, but there is also another tunnel behind it.

REALIST.

3 Comments

  1. I “second that emotion” !!! My caregiving is no where near as intense as yours is…at least today. I’ve struggled alot this fall with being stuck between my “lives” – the one of caregiver and the one where I am a gmother for the first time and I want my time to myself to do as I please. My mind goes where yours does – to when it is over and what my life will be like then. And yes yes yes – I dare anyone to walk in these shoes day in and day out…then we’ll talk. I will toast to you my cyber-friend. I’m glad I found you in 2009 and I look forward to the strength that you will find in unexpected places in 2010. We can hope…

  2. I’m older than you, and my dementia-afflicted Mom and I shared a whole lot of the good memories. Thing is, at times like this around the holidays, it feels ALMOST as though those good memories just make the emptiness feel that much worse. I dunno.

    My Mom lived with me and my family for several years, after living on her own very successfully for a while after my Dad died. We had some really magical times, cooking meals together, eating out on the lawn in the summer, going shopping together. It isn’t that I see only doom and gloom, not really.

    But it is true that I see so much loss and so little joy for my Mom now. She told me long ago, that she couldn’t smell scents any more. And she does not seem to recognize photographs. So now I go to visit her, and all I can do, is sit with her, holding her hand. I guess it is comforting to her, but sometimes, I feel sorry for myself because I miss having my Mom to mother me, even now that I am all grown up!

    My parents’ own parents died relatively early. Neither of my folks had to face anything at all like what I deal with now. I know that my Mom didn’t ever want to be “a burden” and I know that she and my Dad could never EVER have imagined what things might be like.

    I miss them and I miss the times that were magical, that we didn’t even realize were so extraordinary.

    And yes, I hope that my own family will not have to walk this road some day with me!

    No one who has not had to live through this kind of thing can quite understand the awfulness of it, for everyone.

  3. Wow – you wrote exactly what I am feeling. WHile this is my first Christmas with dementia in the family, it still feels horrific and reminders of loss are every where I am. A year ago, if I were to come across your blog, I would have had empathy, but no understanding of dementia and all the mixed feelings and losses that accompany it. Now I get it. Not only do I empathize with you, but when I read your words, I nod my head and cry.

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