Caregiving Journal 14

A friend calls these blog-posted journal entries my "morning pages", which are writings the first thing in the morning suggested by Julia Cameron in The Artist's Way.  But they could also be "mourning pages".

Mom is home, but now that she doesn't have nurses aides to come in and roust her out of bed to brush her teeth and eat her meals, she has decided bed is where she wants to stay.  I suspected this might happen when we were at Northwoods and having PT done.  She would always ask if she could go back to bed now, if she could please lie down now, if lunch was done and could she take a nap now?  Now she is home, her bed is wonderful, she has windows she faces that let in the light, she has her son and her cat and she wants to do exactly what she wants to do.

Caregivers are coming, as of Friday, a home health nurse has already visited and next week the Tees (OT, PT, ST) will begin, so there will be attempts to get her into a routine of moving her legs, getting her up, but for now my brother can't resist her pleas to stay in bed.  I understand.  Michael and I went to the house yesterday to deliver some things, it was a gorgeous rare sunny day, and Mom was in bed.  She was happy being there.  I sat on the bed with her and held her hand while she told me that she had "gone on a drive" last night.  Stanley had followed her, she explained, and when he found her his face showed "pain and worry".  The day before she'd told us of a "fling" she'd had about 2 weeks ago.  She knew it wasn't right, but she needed a little excitement.  She apologized for going and said she wouldn't do it again.  Yesterday, as we were leaving, she called out "I'll behave myself".

I read a book a long time ago called "Dad. A Novel" by William Wharton.  I have never forgotten it because of the lovely explanation of what might go on in the mind of a person with Alzheimer's Disease.  Of course, it is the author's explanation, not a scientific one, but it is such a sweet notion.  The idea is that while Dad is "gone", while he sits and appears to be thinking nothing, he is actually living a fantasy life on a farm, where he is completely happy.  In real life his body is infirm, his memories are gone, he is merely existing, but his fantasy life is rich and beautiful.  My Mom might appear to be delusional or delirious, but she is living somewhere else, she is having flings, she is driving again, she is walking without assistance, she is probably much younger.  She apologizes to us for being going on her "flings", for being foolish, but I am happy she is "going" to these places.  It gives her life a richness we can't provide now.  All we want to do is get some calories into her, encourage her to move around, help her with the most intimate parts of life.

Yesterday, before going to see Mom, my husband and I had a conversation about caregiving.  Is my brother wrong to acquiesce to Mom's wishes, to allow her to stay in bed, to refuse food?  Or is that the kinder way?  I have been running around buying things, food, a new walker, trying to think up solutions for her lack of appetite, making up recipes for food that might tempt her, in a frenzy of movement.  Is that the kinder way?  While my husband was in Home Depot, I sat in the truck with the door open and my face to the sun and reached deep down inside myself, realizing that all my frantic running is not going to stop the inevitable--it may stave it off for a few more days or weeks, but that is all.  I probably can't stop myself from looking for solutions because that's my nature, but I have to slow down and sit on Mom's bed and talk with her and listen to her and hold her hand.  I have to feel my deep love for her and show it to her while we both have time.  We are losing her and though she promises to eat, she won't eat enough and she won't drink enough water and the end will come.  No matter how much I want it, I can't keep it from happening.  And what is the kinder way?