3.12.2012

Monday "Memories" With My Mom

The Adventures of Caring for a Mom with Alzheimer's Disease
    Well, as I think I indicated before, when I telephone my mom lately the calls have been going something like this:
     Me:  Hi, Mom
     Mom:  Oh, hello.  Don's here.
     Me:  Oh, well, that's ok I was just checking in on you.
     Mom:  Are the kids ok.
     Me:  Yes, they're fine.
     Mom:  Good good.  Ok, love you.
     Me:  Love you too, bye!
    
     The good news is that she does not seem to be "lonely".  It is also too distracting for her to carry on a conversation while anyone else is in the apartment with her.  But my mom not wanting to have a conversation with me on the phone has been a major, yet gradual, turn of events to say the least.  It used to be my mom would call me daily and we would talk for long periods of time about most everything.  I could confide in her, tell her details about the kids that she would understand, make plans for visits that she would remember, keep each other up to date on extended family and friends, etc....  So this has been a drastic change to get to where we are now.  I have accepted the change long ago, but still continue to be surprised and even amazed by it because it is not the mom I used to know.
NOW, when my mom calls me it often goes something like this:
     Mom:  Cindy?
     Me:  Hi, Mom.
     Mom:  When is my dr. appt.?
     Me:  Do you remember that he cancelled it and we rescheduled it in 3 weeks.
     Mom:  He did?
     Me:  Yes.
     Mom:  Well, let me write that down.
     Me:  OK, but you wrote it down when I told you a couple of days ago.
     Mom:  I did?
     Me:  Yes, it's March 30th.
     Mom:  Wait, let me write that down.  OK, when is it?
     Me:  It's March 30th.
     Mom:  OK, let me write that down, when did you say it was?
     Me:  March 30th, but I will give you plenty of notice like I always
     do since it's 3 weeks away.
     Mom:  OK, let me write that down.
     Me:  March 30th, I will pick you up around 9:30 am.
     Mom:  OK, you will pick me up at what time?
     Me:  Around 9:30 am.
     Mom:  OK, good, let me see if I wrote that down.....
     Me:  Mom, try not to worry about it, I will remind you when it gets closer.
     Mom:  OK, but I just want to write that down........
     (repeat above 1-10 times)
My patience has increased substantially.  I have to keep my words simple.  Using the word "remember" as I did at the beginning of that conversation, not the best idea.  It has taken a long time to learn.  I used to think my mom was asking these questions as a way of trying to keep me on the phone longer, for company.  Now I know it was not that.  When she calls me after 4 pm or so, it is almost certain that she will be extra confused and agitated (as in the above conversation).  Two good things, she remembered recent talk of a doctor appointment and she is still able to telephone me (although I do think there are often misdials).
     So you see, even though she is in a good place, and I am happy that she is being taken care of, there are still these constant reminders of how much things have changed.  I try to imagine what it must be like to be in her situation. 
     When I visit again in the next day or so, rest assured, I will find numerous notes in a handwriting that isn't as nice as it once was.  They will say "Dr." or "March" or "9:30", but they will be largely illegible to most, including her.  I will still know that it was my mom, desperately trying to manage her own schedule and give herself some sense of control over her own days.  I will gather the notes and throw them out once the appointment has passed, so as not to add to the confusion...and then we will do it all again for her upcoming dental appointment, if she remembers it.
     And so it goes in this convoluted little world of Alzheimer's Disease...where there is no cure.  This is just a small five minute conversation.  However, it gives you some insight into what our/her world is like.  And, I am not the only one.  There are millions of family caregivers all over the world dealing with many of the same things.  It goes way beyond a conversation where there is talking in circles.  Imagine trying to take care of yourself when your mind is failing you.
     Don't get me wrong, I remain happy that my mom is loving where she is living, and the "friends" she is making along the way.  She is probably as happy as she can be despite her declining health.  Yet there are these constant reminders that her mind is crumbling and all I can do is give my love and support along the way... 

3 comments:

Heather (GurleeGirrl) said...

I imagine it gets frustrating for you having to repeat yourself so much. But I'm sure just having your mother around - it makes it all worth it!

Kerri said...

Your mom is so lucky to have you by her side looking out for her. I can't imagine what it feels like to be you...or your mom. Big hugs to you Cindy!

Arlene - Caregiver ordinaire said...

Your Mom is lucky, like Kerry said. It does get frustrating to repeat yourself a lot. And you are right, it's hard to face the changes at times. I think the one fortune with this disease is how most of the time, the patient, Mom, doesn't remember how it used to be - it's not painful for them. It's painful for you. Enjoy this time you can talk to your Mom on the phone; she can still communicate to you - and she's able to feel your love in how you communicate back. And you have a lot of love to give.... you are doing a great great job. :)