I’ve moved

I’m not continuing to write this blog at this time.  The daily experience with Alzheimer’s was enough and I didn’t want to carry it through with writing.  It is a worthy topic, but I am buried in it at the moment.  I need to spend my extra moments taking care of myself.  With that, I’ve created a completely unrelated blog:  fabandfitbyfifty.wordpress.com

I hope you will join me there:)

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Whose voice is it now?

Today I am a bit overwhelmed.  Alzheimer’s disease has taken away my mom’s judgement.  It has taken her ability to complete simple tasks, (whether because she has forgotten how to run the microwave or she is unable to stay focused).  It has taken her ability to sustain or remember a happy interaction with another person.  But it hasn’t taken away her needs.  She needs to eat regularly, she needs to feed her soul with friendships and relations, she needs to do something to keep from being bored (and thereby not find herself in trouble–remember the lack of judgement…)  But addressing these from afar…  Making all the decisions for her–especially the big ones–is she safe enough, is she suffering more being alone or moving to a new environment, is she eating enough, is she as ok as she can be given the extent of her disease and her losses.

I could base my decisions on what I would want, but I somehow feel that wouldn’t be right.  My mother and I are two very different people.  As Alzheimer’s has taken away her voice, I have to try to remember decisions she has made in the past and make my decisions now based on hers.

I see my son starting to develop his own voice–though sometimes it seems he takes a stance opposite of mine, just to be oppositional…  It is a wonderful, if not occasionally trying, process.  He is taking out voices on trial runs, often with some pretty funny results.  He’s only 9, so he has a long time to go before his voice stands strongly as himself.  But with mom, I’ve seen the loss of her voice.  Looking back, it has been disappearing over the last 10 years or so.  I thought it was diminishing due to isolation on a small farm in rural Missouri and my parents’ own stubborn independence.  But I suspect now that some of that was compensation for a slowly progressive loss of memory.  I can see it now.  Instead of drawing them out, I left them alone.  Well, in my defense, both my parents could quickly squelch any attempt to get them to expand their horizons.  “What the hell do you know, you’re just a kid.”  (a 48-year-old kid)

But now mom’s voice is practically gone.  Dad made all the decisions for her.  Told her what to do.  Again, I misjudged.  I thought he was becoming even more overbearing than he had been before.  But he was doing his best to keep mom “the same,” to keep her on track, to deny the changes in her by fixing everything for her.  Now that he is gone, mom is devastated by her inability to carry through a day.  What should she wear?  What should she do?  What should she eat?  And just forget about the bills, changing lightbulbs, or any of the thousands of things we put on our ‘to do’ list and eventually check off…

Now that sounds simple.  Just tell her what she needs to do.  HA!  YOU try to tell her something.  So, I have to remember her voice, try to make decisions based upon her past, then try to maneuver so that she thinks she isn’t being told what to do.  And it feels like my wavering voice is all alone.

My Parents

My parents were proud, independent, resourceful and a bit secretive.  I knew that my Mom’s memory and coping skills were not what they used to be, but for several years I contributed these losses to isolation and lack of stimulation from the outside world.  I heard the decline over the phone throughout the past couple of years as my father made increasingly frequent trips to the hospital for his own poor health.  The phone calls came less often and contained less relevant information.  I was told, “Don’t come out, we’re fine.”  Having my own family and living 1645 miles away, I doubled my current visitation rate from once a year to twice.  I love my parents, but we didn’t always have the best communication.  I left home to go to university and really, except for holidays and summer vacations, I never returned.  I guess that speaks poorly of me.  They were good parents.  Nosy, never consistent, prone to rigid opinions.  Hmm.  Possibly the same description my 9-year-old would use about me…  Anyway, I just wanted to put out there that I love my parents and, in our family, we would be considered quite close.  Though separated by many miles, we spoke frequently on the phone. Long conversations, though often about little.   I suppose that I had a love/avoidance relationship with them.  In my defense, they were always invited (even begged) to visit us in San Diego, they came only once–when my son was born at 25 weeks (instead of 40) and I was a wreak.  So maybe it wasn’t a love/avoidance relationship as much as it was a love/only in emergencies relationship.  For you see, when I heard that my father had fallen and broken his hip and my mother was at home alone decompensating, I was on the next plane to Missouri.

That was in April.  He died June 19, leaving my Mom alone to carry on.  Only she couldn’t.  Though she continues to refuse to see a doctor (more on this touchy subject in another post), Alzheimer’s disease is obvious.  The slow steady progression over many, many years.  The order of the losses.  The lack of physical symptoms seen in lewy body dementia.  I know there are reversible causes.  I begged her to check her thyroid, B12, etc.   But both my mother AND my father would SPIT anger at the very suggestion that my mother had a problem.  Then there was the lack of doctors in the small town in which they live…  Isn’t it sad?  I’m a physician and a loved and trusted daughter, and yet, they wouldn’t let me help them.  Stubborn, independent–did I mention that already?  Sigh.

I just really want to start setting the stage.  My family is not unique in its issues in dealing with a parent with Alzheimer’s.  But we each carve our path based upon our past.  I hope that over time I will find those of you also dealing with dementia, coping, finding strategies to survive the difficult time so that we can share both our troubles and our funny little moments.  Sometimes it is just funny.  Always sad, but funny.  Life is like that.