Spring 2017

Things continue fairly calm here. Not a lot new to say, except that there is very gradual progression of deficits with J’s memory and grasp of things. The easiest way to characterize this is “lack of overview”. That, as I’ve written before, affects our ability to have substantive conversations that involve problem solving, strategizing or even simple planning. I do not discuss weekend plans, for instance, until the weekend is there – and I pull out a couple of options for her to choose from, rather than outlining the whole weekend, the people, the places, the activities we might see or do.

There are some things that are in pretty good shape. J is warm and pleasant with me and with people we encounter. Her rote conversational skills, sense of humor and social skills are largely intact, with the most noticeable problem being remembering what she has already said in that conversation. Every so often there is a lapse in judgment, when she might offer a strangely frank opinion where formerly she’d have been guarded or polite, but this is fairly rare. And her physical health continues to be very good.

Some people with dementia experience word-finding problems, but this has not been evident with J. Time sense, however, is severely affected – season, month, day, year, how long ago something happened – she struggles with determining these things many, many times a day.

As for me, I’m relieved to have a steady schedule of respite for at least a few hours most weekdays, and in this relief have begun to take a look at activities for myself. It was very, very helpful to really focus on caregiving as my job, when I found myself torn in pieces trying to keep up with all the dimensions of my life. I am less torn now, and able to consider adding back in a yoga class once a week, and see how it goes.

It’s the fatigue, though – underneath, all the time, for several years now is a constant fatigue – from watching and being “on duty” 24/7, to be sure things go well, that J is safe, that her deficits don’t get her in danger of any kind, plus the household management itself, which has grown from half, five years ago, to almost all, now.

People encourage caregivers to “take care of yourself”, which I take seriously. The tricky part is knowing how much energy I’ll have on any given day, and whether something like a yoga class or other scheduled activity can give back more than it takes. Well, we’ll see!

I seriously don’t think I have any more fatigue than anyone else in this type of situation – I eat well, sleep fairly well, enjoy good health and am well-resourced in every respect. It’s not that the job, now, is particularly physically demanding, but rather it’s the attention required which is such a different type of mental energy than I ever needed to use in this relationship before.

I’m thinking hard about how to go the distance, where it might well be a very long haul. What pace do I set that I can maintain for several more years, say? Fortunately, that type of analysis comes easily to me, from years of long-distance hiking….I am pretty suited to long, slow projects filled with routine and relatively few spikes of unusualness.

So, stay tuned, if you like – this type of blog is inherently sobering, as is the situation we’re in, but writing has been truly helpful to me, just as knowing kind readers are out there has been. Thanks for reading.

10 thoughts on “Spring 2017

  1. Thank you for reminding all of us to stop and look at skills we already have from life’s experience I know it helps me not panic about how I will survive difficult times, I don’t want to but I know I can.

    Liked by 1 person

    1. Weill, Tricia, you’re sure getting a bunch of skills with the adventures you’ve been on in the last two years…! You’ll be very well equipped for whatever comes down the pike, I just know.


  2. I’m glad to see you’re able to get some respite from your caregiving task. I would imagine that because each person is different, and their dementia is likewise, individual, that you just have to take it day by day as you’re doing. Not overloading J with too much information too soon is wise. Hang in there…

    Liked by 1 person

    1. Yes, I’m super grateful to have been able to set up these various respite opportunities – we live in a good area for this. I really can’t stress how helpful it has been to have some predictable time off.
      Thanks for writing.

      Liked by 1 person

  3. So glad you are able to add a yoga class! Yay for me time!

    I know just what you mean about the attentiveness required. It is not physically tiring, but mentally it can be exhausting. And sometimes you can find a few minutes to take care of something for yourself, and then your spouse is needing your attention in some way. No rest for the weary.

    Hang in there . J is lucky to have you.

    Liked by 1 person

    1. Yep, we’ll see about this once-a-week yoga class – for a long while, scheduled activites just added a pressure of their own, because of the schedule, regardless of the pleasantness of the activitiy itself, so I pulled out of most everything that was scheduled.

      But with the regular respite schedule this year, I am relaxing a bit and able to entertain the idea of a regular class again. It’s a good sign!
      Take care, Carole.


  4. You are wise to have arranged respite time. Otherwise burnout would be a real risk over the long haul. I have experienced true burnout, and not only was I unable to look after others once I was in the depths of it, but also my physical and mental health was affected.



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