Of Sails and Winds

The realization that Lyn is now encountering people she once knew in the community without recognizing them was one of those moments when you feel yourself struggle to take a deep breath.  It is not like we didn't know this day would come.  We've known that it was coming and have been recording her changes all along the way.

Lyn was diagnosed with Early On-set Alzheimer's in June 2011.  We are just a month away from her third anniversary of her diagnosis.  In some ways, this milestone of forgetting people seems to have come on quickly.  In reality though, it has been years in the making and Early On-set Alzheimer's is FAST compared to the form which sets in later in life.

I didn't have that feeling of dread or the struggle to breathe when Mom first told me about the incident at the shop.  It wasn't until I decided to check to see where this marker put Lyn in the progression of the disease.  It is hard to put a person cleanly in one stage or another as the symptoms between stages can overlap.  I believe it is a bit harder with someone who started off intellectually impaired because some of the differentiators are skills she never had.  For example, she's never been able to count backwards from 40 by 4s.

I'm not an expert and don't even play one on tv.  However, if my reading of the stages and if my understanding of where my sister is at is accurate, then she has transitioned out of Stage 5 - "Moderately Severe Cognitive Decline" and into Stage 6 - "Severe Cognitive Decline."  Both of these fall into the Mid-Stage Alzheimer's category.

• She does forget recent experiences, often in the same day now, unless they were particularly strong emotionally.  
• She still knows her name but much of her personal history is lost to her.  
• She still knows faces she sees regularly and knows the names of those she sees frequently.  
• Mom has to supervise her clothing selection each day.  Lyn still makes the selection but Mom has to direct her to the clothes that are best suited to the event or the weather.
• Her sleep duration has increased quite a bit in the past month or so.  She's often ready for bed by 5pm and will sleep until 8am.  She will even nap during the day as well if the opportunity presents itself.
• She's needed verbal supervision of personal hygiene issues for over a year, particularly during menstruation.  
• Pacing has become a regular event.  Suspicion is a daily companion.  Paranoia comes into play when people she sees infrequently visit.  This includes her case managers.  She is also very worried if she's home and cannot see Nikka immediately.
• She does not yet wander and remains attentive to sticking with Mom or her respite provider.

Will the rate of her disease progression increase?  We have no way of knowing.  We don't even know how she'll be in six months or a year.  That's why, when I realized where we seem to be with her disease, I felt deflated and struggled to breathe for a minute.  It was heavy realization even though we knew it was coming.

I cannot change this.  I cannot slow down her changes and I'm not sure I would.  It is also not about me.  This whole experience is about trying to make her comfortable and happy.  It is about recognizing the source of her fear and working to help her feel secure and valued.  So, when I realize that I've forgotten how to breathe, I keep telling myself that we've made it this far and we just need to get through this week or today or this minute.  We're not in crisis.  We're just dealing with the same thing that millions of others before us have dealt with and we, too, will see the other side of this.

And then I inhale again.