Lies

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     I detest being lied to. There is no reason to lie to me about where you are when I call you. Hey, vacations are great. Long ones are wonderful. Where do you get off telling me that you can't talk because you are at work?

     The truth would have sufficed. I'm out with friends right now and I can't talk. Can you send me the info? Yeah, I would have understood that. Totally. I get that. 

     It's considered "rude" to take phone calls when entertaining. Even though a large percentage of people do it anyway, it is not cool. I tell people I need to call them back when I am with friends. So the truth would have been respected.

     Things are stressful enough when advocating for a dying parent. I visit several times a week. Until recently, I was transporting to doctor appointments. I watched as yet another mini-mental status was conducted. The results never improved. "I haven't seen her in eight months." I had no words to explain your absence. He loves us both. Now he is actively dying. Your lies roll off your tongue.

     This is not about you and it is not about me. We are losing one person. He is losing everyone. Take your drama and your lies elsewhere. I am burnt to a crisp.

                          ~ sapphoq on life

         

Repetition

     Dad has been repeating himself for awhile now. Housemate's mum has just started. For a few months, she would play catch-up with conversations. A few minutes after a group of us was done discussing something, she would bring up the same thing using some of the same words. Within the last month, she has started repeating a question or a sentence several times within five minutes. Then she would act surprised that she'd already told us.

     An example:
          "My sister called me. She said she fell and sprained an ankle."
     This would be discussed. A few minutes later:
          "My sister called me. She said she fell and sprained an ankle."
     And a few more minutes later:
          "My sister called me. She said she fell and sprained an ankle."



     My dad and housemate's mum have never really cared for each other. I could imagine a conversation between the two of them.

Dad: "This is my daughter sapphoq."
Housemate's mum: "Yes, I know. How have you been?"

Dad: "This is my daughter sapphoq."
Housemate's mum: "Yes, I know. How have you been?"

Dad: "This is my daughter sapphoq."
Housemate's mum: "Yes, I know. How have you been?"


     The verdict is not in on housemate's mum yet. But the eerie repetition sounds strikingly familiar to me.

     It is not the long-term memory that suffers in dementia. It is the short-term memory, followed by an inability to create new memories. Thus, many folks with some form of dementia can tell you about their childhood but not remember what they had for breakfast.


     Dad told me the other day that soon he will not be able to talk at all anymore. His expressive aphasia has certainly gotten worse in my unprofessional unasked for opinion.

     
     Dad did not prepare me for his dementia. I suppose dementia is something that is subject to lots and lots of denial aided and abetted by any lesions that happen upon the left side of the brain.

     Dementia sucks. Don't you doubt that for a minute.

sapphoq on life

You Say

     You say you get "it." 

     I've done my research also.  I was the one who first brought up his symptoms which fit the diagnosis, even before the two neuro-docs concurred.  I've worked with old folks who had dementia-- a whole variety of dementias-- for many years.  Things got different when Dad caught it.  Suddenly, I was the crazed family member who could not keep Dad at home.  I was the one that the younger staff members looked upon with suspicion wondering if-- or when-- I will come down with it also.

     I know-- from my own brain damage-- that after the brain gets loosened up, the brain goes into survival mode.  Part of that change
is a self-centered centering at a time when all of the middles are 
rapidly exploding into lesions of scarification.  Dad's utter and total
self-centeredness is not something he would have chosen for himself.  Through the passage of time, my own survival mechanisms have allowed me a bit less self-centeredness.  Dad, not so much.  His brain is getting bombarded with lesions and there is scarsely time to breathe in-between new formations. 

     You say you get "it."  You say you understand his dementia.

     Dad is not a case.  He is not the L.B.D. in room three.  He is the man with a failing brain that I love with a fierceness even through all of his atypical neurology messing around in his head.  My heart breaks every day.  My heart breaks next door.  Yours breaks from a distance. 

     This dementia has made us strange to each other.  We cling to our separate life rafts in our separate spheres, each of us with our own twisted and bleeding wounds.  I thought perhaps that our two rafts could connect.  We could traverse the rugged seas in tandem, both of us supporting the other as we also support ourselves and Dad.  The winds whip up in fury screaming, "Not to be.  Not to be."  Instead, I've found a cousin and an aunt [who is not Dad's sister but my mother's sister] and my life partner and a doctor who each bring their own brands of wisdom to my life raft and who help me to support Dad.

     But this is not wholly about any of us.  We are the bystanders.  Dad is the one who is fantastically and utterly consumed.  We are losing one person.  He is losing everyone.  He has already lost so much. 

     You say you get "it."  You say you understand his dementia.  Can you please explain it to me?

~ sapphoq on life ~