Tuesday, December 15, 2009

Coming Home Isn't Always Sweet

We picked Pat up yesterday morning from her daughter's. It went okay. She was still sleeping and I had to wake her up and that is out of the norm. She was confused when her daughter came in but her daughter just acted like it was normal for her to go to work, kissed her mom goodbye, and breezed out. It works so much better than trying to "make it okay" because we will NEVER be able to make it okay for Pat. I quickly got her dressed, ready, and out the door before she had time to panic. Breakfast was fine, coming home was fine, and I took care of her clothes before she had time to notice them so that went well.

Then we went to my Dad's and she was very confused. She was upset that Mark didn't know where she was and how would she get home and where were her house keys, and on and on. I was able to reason with her that she lives with me, but I realized for the first time, this could be a problem eventually. We know a lot could get worse quick.

Even today, she is more confused. She has asked about her daughter coming here, even though she isn't. She remembers, somewhere in the clouds, something about her daughter, but doesn't remember the entire weekend. I feel bad for Pat to lose so much time. We all talk about how we need more time. Maybe we should feel lucky for all the things that make us busy. She has nothing but time on her hands and each step fades in to nothing behind her, like she was never there.

As the days go by, Pat declines, but only a little here and a little there. I hate this disease. It's impossible to gauge, study, and ainticipate what will happen. At times, we can figure what is triggering a certain reaction, but most of the time we can't so frustration sets in for us... and her.

We get frustrated and have to walk away... but we always want to come back. We know there will be a time, but right now, this is where she needs to be. Maybe just as much for our piece of mind as for hers. We missed Pat while she was gone. Don't get me wrong, we enjoyed our carefree, much needed weekend, but there was a spot where she was supposed to be. And we both felt it.

So I guess when I think about it, it was sweet for her to come home. Yes she was confused and a lot more edgy than most days, but this is where she belongs. This is her home where she has her bedroom, her routine, and her caregivers. And I think deep down she must know that.


  1. nikitafairliovski@googlremail.comDecember 16, 2009 at 4:52 PM

    Hi Christina,

    I am so pleased you enjoyed your weekend, but I can understand the gap that you felt regarding Pat. I think it is a guilt thing.

    I work nights in my care home. One week, three nights and the following week, four. I never feel bad about leaving Michael, as I know - for now - that he is safe. However, about four to five times a year, I will stay overnight at a friends and I feel bad about it. I feel that I am abandoning him because it is not work related. I know I am not and it is no different than if I was at work, but it does not feel the same. I will phone him to ensure all is well, whereas I do not when I am at work. Sometime, in the future, whether at work or at a friends, he will not be safe. I do not dwell on it. I will cross that bridge when it comes.

    In your last paragraph, you stated that Pat knew where she has her bedroom, her routine, and her caregivers. Yet again, you are so right. She does know.

    When my brother came across from Holland and became trapped, when he requested a well deserved break, I would stay at my mums home, for that was there was a history and she had something familiar to hang on to. Taking a confused person out of a safe envirnoment does have an obvious effect.

    I do admire you so much Christina, as you are obviously a very kind, good and reflective person. I do also feel for Mark as I can understand his angst.

    I finished a run of four night shifts this morning and I am therefore, a little brain dead, so will write to you, via your email, in the next two days.

    Take care.

    Kind regards,

    Mags. xxx

  2. I hope you are resting easy Mags and look forward to your email.

    In your response I couldn't help but think of the times when you leave your husband home and how you said you know someday it will have to end. I wonder if BeHome 24/7 would work for you? I wrote a review on this system a while back and you have access to a computer, you can monitor your husband. Here is the link to that review:

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