Friday, March 25, 2011

She smiled at me today

Peggy smiled at me today.  She seems calmer more relaxed.  She talked to me, wanted to know where I live and that she is from downtown Wheaton.  Eyes closed most of the time, but she's settling in.
At dinner every night we go around the table and ask best and worst parts of the day to everyone.
Peggy smiling was definitely my best, cutting her toenails...worst.

Hi Mom.

Thursday, March 24, 2011

Sharing a Moment

One pretty amazing moment happened the night Peggy moved into her new home.  It was bed time, I came late so I could help get her changed and in bed and relaxed.  I wheeled her into her room.  Turned the lights on low, and we looked around her room.  I set it up exactly the same as her room at Sunrise.  Same framed pictures...I showed her this one.
She pointed at it, mumbled something,  and then said it makes me want to cry...and she cried.  I hugged her, a real hug. It wasn't a reassuring, or... it's going to be okay, or calm down hug it was a real heart felt reaction hug which made me cry, for us.

I felt like we were actually both there in that very moment, together instead of by myself.

So I stayed a little longer.   I didn't rush back.  I helped her get dressed with the new people, she didn't like it, although she was a little more calm.  I helped them get her into bed, and changed.  She hated that, she looked at me with fear, and the dementia was back, and she was scared and upset.  I held her hand. I turned the lights down low...and read to her A.A. Milne.  Every time I stopped and thought she was asleep she would say  "I like that one."

I know I can't take care of her.  I know I can't be there all the time to hold her hand.  I have to let the other's help.  I just...

The Doc reminded me today, there is no drug for alzhiemer's.  She's right, there isn't.  

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.

Monday, March 14, 2011

Cha Cha Cha Changes

My favorite David Bowie song.  I think I will hum it all this week.  Peggy is moving.  We've decided a smaller "board and care" place would be better for her.  It's a home, with 6 residents and 2 caregivers and still close by us.  I've been contemplating this since January when USC suggested this type of place for her.  After researching, and looking at many places (Thanks Barb!) I've decided on one I think will best suit my MOM.  Most of the places were very nice and affordable, yet when it came down to my final decision...I let Gidget choose.  I'm not kidding.  The last place, she just settled in, took off her socks and shoes and wanted to hang out.  I felt this way too.  Because that's what Peggy responds to as well, feelings, emotions, smiles, comfort and beauty.  I also really like the 5 ladies that were living there.  They seemed similar to my Mom, like hoping your college student gets a "decent" roommate.  I've been up since 3 worrying about it.  But I've got my team.  Jacki, Allen, the girls at Sunrise, Dr. Stern.  I'll leave it at that for now....til Tuesday, when the movers come.  10:30 am.
I really haven't posted this process, because I feel kinda bad about leaving Sunrise, and also not going with some of the nice places and people I talked to.  I'm so sensitive to the whole thing.  The care, the care, having someone else care for her and me being the manager.   The girls at Sunrise want to know why we are leaving, but understand what is best for my family.  They say they'll miss us.  I'll miss it too.  Honestly.  Alla said "why are you leaving, she is like family to us, we love her."  AND she is used to them, sort of...well she did call us all bitches when we tried to move her from the couch back to her wheelchair.  BUT look at her!  She can't sit up on a couch anymore. Why???  Ugh, all these random thoughts all night.  Should I even bring the couch?
video

Here is a video of us....wish me luck.