Grieving Over What Has Not Yet Happened....

Last Thursday was one of my toughest days ever.  It was just a very frustrating day, all day.  Intellectually I understand that this is not Pam's fault.  She is not doing anything intentionally.  Yet the obstruction and resistance can be very frustrating.   All I am trying to do is insure that she is comfortable, safe, and pain-free.  Yea, I know, that was my logical self talking.

It started as soon as she woke up.  Her bed clothes were very wet.  I asked her if I could change her clothes and her 'pantaloons', which is my way of saying Depends without actually saying it.  She answered in the affirmative.  So I lead her to the bathroom and asked her to sit on the toilet.  I grabbed the clean stuff from the bedroom and went back to start changing her.  As I start lifting her shirt to remove it, she is pulling it back down.  As I try to remove her arm from a sleeve, she grasps the end of the sleeve, preventing it from coming off her arm.  I told her that I understand that she doesn't like this, but she needs to get the wet clothes off.  When it came to the pants, her reaction was the same.  She wanted no part in it.  She has always be very puritanical (protective) when it came to her body.  And I respect her a lot for that.  But because of the effects of the dementia, we need to get past this.

I made her some breakfast and she sat there watching TV.  After eating some of it, she began falling asleep at the table.  I was concerned about her falling out of the chair, so I woke her and asked if she would move to the recliner?  Again, she was resistant and wanted to stay where she was.  This resistance continued all morning.  When the caregiver showed up at 1 pm, I was like... good, you're here.  She's all yours.  But I went into the kitchen and read the poem.  For more than a year, I have kept a copy of the Alzheimer's Poem hanging in the kitchen.  I try to read it every day.  It helps me refocus my logical brain to understand the realities of this disease and what it has done to Pam.  It is not the Pam I married.  and it is most importantly not her fault.  Again, the tears flow.  Grieving over what is happening and grieving over what has not yet happened.

Speaking of the caregiver... she is amazing.  Regardless of Pam's state when Laura arrives, Pam just brightens right up.  Her expression and her voice are positive and happy.  Laura is able to get her into the shower without (much) resistance.   Pam just loves how Laura takes care of her hair and adds some makeup.  The primping is good for her.  She deserves it.  Laura has talked Pam into going outside and walking.  Yesterday, Pam walked completely around the block.  Laura has such a great rapport with Pam. 

But the disease continues to take its toll on Pam.  Most days, she wakes up in a complete fog.  She doesn't really know where she is or who she is with.  It takes about an hour for her to regain her self-awareness to time and place.  I am concerned about her blood pressure and temperature regulation.  She always had excellent BP.  Lately it has been high.  Often her skin is very cold to the touch.  I keep turning the heat up because she is cold.  I am starting to see signs of depression in her.  But who would not be depressed knowing what is happening to you.  She is still feeding herself, although the process of eating dinner is taking longer now.  We are going through a lot of Depends and doing laundry daily.  Her movements are slower and she is using the walker more often. Getting dressed is sometimes an adventure.  She wants to do these things herself.   Yesterday, she was having trouble with her pants.  When I offered to help, I found that she had on two pair of pants.  Cognitively she can no longer process simple choices.  It is best to just decide for her.  Wednesday of this week was another Sista's luncheon.  When my sister arrived, Pam did not recognize her.  We have called the hospice nurse several times in the past two weeks.  

But again, I read the poem....

Do not ask me to remember,

Don’t try to make me understand,

Let me rest and know you’re with me,

Kiss my cheek and hold my hand.

I’m confused beyond your concept,

I am sad and sick and lost.

All I know is that I need you

To be with me at all cost.

Do not lose your patience with me,

Do not scold or curse or cry.

I can’t help the way I’m acting,

Can’t be different though I try.

Just remember that I need you,

That the best of me is gone,

Please don’t fail to stand beside me,

Love me ’til my life is done.