A Journalist whose dad has Alzheimer's

Tuesday, September 20, 2011 a note to Michael Collier about his “As Alzheimer’s robs mind, heart opens.”

 http://www.sfgate.com/opinion/article/In-depth-of-Alzheimer-s-gloom-a-ray-of-hope-2309662.php

From: Tina Martin [mailto:tina_martin@sbcglobal.net]
Sent: Tuesday, September 20, 2011 6:47 AM
To: 'mcollier@sfchronicle.com'
Subject: Thank you

Dear Mr. Collier,

                I read your article on your father with great interest because it parallels my own experience with my mother in many ways, and we’re now planning her 90^th birthday at Aegis in Pleasant Hill—the memory care section-- knowing that it may not come off at all, as our Mother’s Day party for her indicated.  (Still on Seroquel at that time, she was sure the ice cream and cake were poisoned, and she attacked them.)  We’ve reserved a beautiful room at Aegis, but she wants to return home for the celebration and even tells me what she wants to say to her guests:  “We’ve celebrated so many of your special days here.”  She wants to look around the living room in the house she lived in for forty-five years, the way she had imagined it for a decade.  Like your dad, my mother is less disabled than many of others (and she no longer attacks cakes and ice cream the way she did on Seroquel).  Like your dad, my mother is just a mile away from her home.  She, too, has left a partner, another woman rather than a spouse, but someone who was like a spouse until she became the care-giver.  Like your dad, my mother is “overwhelmed with anxiety.”  On Saturday she thought she was being investigated for not doing something she had done (an interesting variation on being investigated for doing something she hadn’t done).  She thinks she's going to be killed before her ninetieth birthday—poisoned-- and she’s losing weight fast.    Like you, I have to tell Mom that the door that is always open is the one to her room, although she has a roommate whose dementia leads her to make accusations and state clearly that Mom isn’t welcome there, where she’s intruded.    Like your dad, my mother wants to help.  She’ll hold the door for someone coming out with a wheelchair.  She’ll try to make peace with her belligerent (from no fault of her own) roommate.    Unlike your dad (I hope), my mother is obsessed with the bathroom.  She fears having an embarrassing accident.  In her Advanced Care Directive, she said that if she had to be put in a facility, she would like to go outdoors as much as possible. But now, when I invite her out into the beautiful garden at Aegis, Mom usually says no because there’s no bathroom out there.

                But she can still play the piano and often does.

                Like you, I find warming moments, moments of physical closeness that I haven’t felt since I was a child and in her arms.  A couple of times in the past month, when she’s felt too weak to sit up, I’ve lain down beside her on the bed and put one of my arms over her bony body (so rapidly shrinking) and  run my fingers through her hair while she’s stroked my arm (“This feels good,” she’s said) and we’ve talked. As we’ve lain there I’ve tried to assuage her fears that she owes her roommate money and all the people she hasn’t paid are lining up to collect.  We’ve talked about her ninetieth birthday and some songs she can play.  We’ve even sung together there on the bed.  I don’t want to be maudlin, but last week I remembered how much she used to like “You’ll Never Walk Alone” from Carousel, so I started to sing that to her—and managed to get through it even after she joined in without crying. 

I do my crying alone after I’m home.  I’m not sure when Mom does hers.

Tomorrow we’ll wear purple.

                Thanks again for your article.  

                Tina Martin

PS  Have you read Still Alice?  There’s a less-known book too that I liked by Martin Suter, Small World, a work of fiction in which the protagonist has  Alzheimer’s .  I read and share everything I see—like the news that some people do a lot better when they’re taken off all their medicine except aspirin…or that Insulin sprayed might make a difference in the treatment of Alzheimer’s.