Wednesday, March 23, 2011

A very difficult week

I haven't posted.  Waiting for the move to work itself out.  Still waiting, hoping she will adjust.  Change of places, people and meds.  It's been extremely stressful for me, imagine what it's like for her.  I am an advocate for Alzhiemer's and that means I must document and tell Peggy's story, even if I make mistakes in her care...it's trial and error right now, and that is a very heavy burden.  But, it might help understand how this disease progresses, and find the best ways to care for alzheimer's patients.

So...here's how it went.
Tuesday....movers on time, packed up the room, set it up at the new place, getting ready for her arrival.  Sunrise was extremely helpful and Eva did her hair and Sandy and the other girls watched over her while I was gone all day.  Jacki took G to ballet class and I went and got Peggy.  Okay, here we are now.  Seems okay, are you okay Mom? I love you.
Wednesday...not okay.  Aggresive, hit the dog, upset the dining room table, I mean like "watch my Magic trick" upset.  Mean, swearing, hitting, fearful, anxious, depressed and.... I went right over there.  Helped her get changed, she sees me and she smiles, relaxes, but her leg is shaking (holding back her agitation).  They have to change her on the bed.  This is upsetting to me.  I hold her hand.  I look in her eyes.  This is what I see.
Thursday- Meet with the psychiatrist.  Wants to meet her alone, so I wait in the other room.  She's different when around me.  I'm happy to have someone see her in her environment.  Every time I have taken her to a doctor...she's different, she's with me.  We always get ice cream.
So, the meds are changed....more depacote (we've been through this before) and exchange of Rispedol for seroquil.  Also, completely discontinue her Namenda, as we had planned with Dr. Stern.  Okay, small adjustments...we will work on decreasing her anxiety and depression.  She's been on Paxil for years.  Probably too long.  Research, research, someone please help me with this.  Don't read the internet, there are so many conflicting posts and ideas.  I wish USC would call me back.  

Now here is the stress for me.  I am trying to figure the new place out.  They are trying to figure me out.  We are all trying to figure Peggy out.  I think we all have the best interest at heart.  BUT, it's scary.  So many questions and anxieties about the right treatment.  About Peggy's care.  
Friday- phone call, she's relaxed doing a little better....don't worry.
Saturday- I've got a cold, and figure it's best to stay away.  Allen and Sunny are away at Father/daughter camp, and it's just me and Gidget.  So I spend time with her all weekend.  
Saturday- my cold turns into ANOTHER rip roaring sinus infection.
Sunday-  It rains like hell and my family is back.  I stay inside with them, and hope for the best for Peggy. I sleep.
Monday- I go over there.  She is out of it!  Like eyes half mast, like in bed, totally out of it.  I'm worried. I'm very worried.  I stay with her, she mumbles.  She is in bed, she's relaxed?  The lines on her forehead are smooth.  I'm actually glad she's in bed taking a well-deserved nap in her bed, instead of constantly being propped up in that damn wheel chair.  BUT.....is she too out of it?
Tuesday-  Make a phone call....to USC to discuss drugs.  No call back. (still waiting)  I call the gal at the new home, who always calls me back and talks, we talk realistically.  No veils.  It's going to take a while to adjust.  Don't worry,  I'm worried.  I'm worried.  I'm so fucking worried.
Wednesday- I go over there.  She's in a recliner chair, nicely dressed and sleeping.  In the chair.  That's good, that means she's a little cooperative. She doesn't want to open her eyes.  She mumbles a little.  I stay with her all afternoon.  I help get her to dinner.  She doesn't want to feed herself.  She's out of it, she's depressed.  I keep reaching out to her.  They are changing the Depacote to the evening.  They agree she is too out of it.  We watch her, we monitor, we talk to her.  Is she checking out by choice? A little...I think so.  I know her.  I talk at dinner with the other ladies.  I include Peggy, I whisper in her ear that she'll like it here.  The food is good.  It is!  I'll visit her every day.  It's okay.  Trust me.
She wakes up a little for ice cream...I have to go.  Tomorrow will be better.  Please make tomorrow better.  I get home late, I missed my writing group.  I sleep.  I sleep a lot lately, in my clothes.  It's a burden, the care of someone you love.  And I don't mean the constant care or attention.  I mean the constant stress of wondering if you are doing the best thing for her.  With alzhiemer's it's constantly changing, and there are no experts.  There are no right answers.  It's trial and error.  And you have to believe, research, trust, and hope and wait and worry and make changes if you really care and want the best for someone with this disease, and believe me, I do.