Hi Pauline,
Karen here.
You have a right to be depressed. But it is situational depression - and when this very difficult but loving journey (I can't think of a better word, but "journey" does seem trite) you have undertaken is over, you will feel better. I'm so glad you had time with your friends. They must feel good, too, that they could be there for you. I bet they'll come whenever you ask.
And I totally understand about your gag reflex. My mom wanted me to floss her teeth - and I just couldn't do it. And that is so minor. You are a very visual writer - my stomach started churning while I read your descriptions. Is it possible for you to hire a caretaker from an agency to come each morning to clean up the phlegm and aspirate what's in his throat? Would that be too self-indulgent? Like treating yourself to a caretaker's shopping spree? I think you deserve it.
I wonder if the reason Daddy doesn't look out the window is because he is "blind" on that side. I understand that LBD can cause some not to register anything out of one eye. I can hold something right in front of Mom and sometimes she won't "see" it. She carries a handkerchief with her and when it's on her lap and she's holding it, she can't find it. But, I suppose Daddy doesn't see anything because of the stage he's at. Mom doesn't know where to put the toilet paper after she's wiped herself. She tries to hand it to me or put it down in her Depends. I'll repeat and repeat for her to toss it into the toilet and it takes so long for it to register and for her to understand what to do. She was always so supportive through my life, maybe I should just take the toilet paper from her and not keep trying to slow down her slide into oblivion.
Could you write sometime about some of the earlier stages in Daddy's disease. It all must seem like one big jumbled memory. I know you wrote about some aspects. How did he come to be diagnosed with LBD? If you did write about it, never mind. I probably read it and have just forgotten. I'm sorry that there is no longer any humor to recount. The earlier blogs did make me smile, even though my mom's LBD leaves me horrified that this has happened to her. I ask myself again and again, how do I feel . . . and I always come up with the word "horrified," as though I'm witnessing an unexpected and very serious accident. One incident last fall does seem humorous now and that was while I was staying with her, but had slipped away to visit my husband in our apartment. I received a call from a neighbor. Mom had telephoned her very distressed because I was trapped behind the glass on the face of the wall clock. She could see me. In fact, when the neighbor arrived, Mom was still seeing me and the neighbor had to unplug the clock and remove it from the wall. Then the neighbor called me. When I arrived, they were sitting at the kitchen table chatting. Mom seemed to realize that it had been an hallucination. Logic seemed to be one of the first things to leave as Mom became ill, but she had always been rather emotional and anxious by nature.
Keep writing. No one else is out there being so forthright about the witnessing of dying and the dealing with it. The Victorians wrote about the "Good Death" and the "Beautiful Death," making it look rather attractive. Thank you for not sanitizing it.
My thoughts are with you. And with Hubbie, too. It must grieve him to watch you go through this. Of course, he may also be thinking, thank goodness I married a woman who's going to take care of me in my time of need. Of course, you might just say, Sorry, done that. I'm kidding . . . I'm kidding.Karen
1 comments:
Spouse said...
Yes, it is uncanny how our Lewys do the exact same actions. Where to place the paper is always a big problem. My Lewy always asks where to put the used paper. I am trying out a new system to make it all seem the same. I'm tying a plastic bag on the leg of his bathroom commode, so he can always put his paper there.
I am also tying a plastic bag to the leg of his dining chair, so he can place his nose napkins in it. (He goes through 6 at each meal) To us there is a distinct difference, but to a Lewy, they are the same. To all of us it is all groooosssss !!!