Journey Through Illness

January 22, 2014

Getting wound up and unwinding..

Today was a mixed bag of getting wound up and unwinding.  It was a typical Tuesday in most respects with a little added stress due to the below 0 wind chill temperatures.  

Typical in terms of:  errands, phone calls, meetings, paperwork, conversations, more paperwork.  Stressful because I got a frantic call from my dad in the middle of the day.  My father was diagnosed with Alzheimer’s disease about 2 and 1/2 years ago.  He is currently living with my sister several states away, but he loses track of where I live, where he is, what day it is, etc..  He had woken from a nap and was disoriented.  He has my phone number on the wall, so called it and said, “I hope to god you’re not traveling today”.  I said, “Dad, I hadn’t planned on it; why do you say that?”  Then he said, oh, well I don’t know, I thought I heard something about rainstorms.  It’s warm where he is.  He gets pieces of information or hears something and makes false assumptions. Then he dropped the subject.  I will be so relieved when we get him a day nurse or something.  So far, my sister is taking a class for caregivers, and a neighbor checks in on him when she is at work.  It’s so messed up.  This whole long process of deterioration.  There are a few times when he is pretty good on the phone, and he always remembers me so far.  It’s clear that the disease is progressing.  And each step is painful.  From “how do we get him to stop driving?” (several years ago now), to “how to get him to move in with one of us”, to “how to manage the financial issues”.  And, my brother and sister don’t speak to one another.  This puts me in the middle and I do what I can to avoid this position, but this is a tricky one.   I have to weigh the pros and cons of when and if there is something I must pass on to one of my siblings from the other one regarding my dad.  My dad is becoming more paranoid now.  Our conversations are shorter. My siblings and I differ on what the next step should be.  It’s so hard to know.  And one thing I have run into is the minute you reach out to assisted living places you find out that this is “big business”.  Each place is ready and willing to take all your assets, and settle your loved one in for the money.  God bless those who work in these facilities, but the owners are competing, and it feels like no one truly has your back about the decision making process.  

Some days I don’t want to be an adult anymore.  It was different with my mom’s cancer.  She died of ovarian cancer in 2003.  She was conscious through the process, she accepted help, she knew what she needed and wanted, our relationship improved and deepened during her illness.  Nothing was left unsaid.  I spent most weekends with her the last six months.  It was a hard process, but it was nothing like what is happening to my dad.

He is stubborn, never wants assistance, doesn’t realize the effect this process is having on any of us.  He can be rude, paranoid, and he blames things on us when he is in a confused state.  He was my dad.  I looked up to him.  He picked me up from dance classes.  He always attended our events, took us on vacations, read to us, went hiking with us, played games with us…

It scares me sometimes.  This disease is not predictable.  The doctor I first took him to, told me he had 3 years to live.  That was 2 and 1/2 years ago.  Some people live a long time, and suffer greatly.  I think there was movie or something on Alzheimer’s called “The long goodbye”.  That is the perfect metaphor.  Although I think it should be called, “The long F%&*ing painful disgustingly unfair goodbye”.

I’m not going out this way.  

So, I got “wound up” around my Dad’s illness today.

The unwinding came after work.  Several nights/week, My husband and I have been playing scrabble after dinner.  We’ve been doing this since we got married 16 years ago.  We play to see who does the dishes.  Yes, we don’t have a dishwasher.  Whatever.  But I love this time, and I am grateful to have someone going through life along side of me.  My best friend and lover.  I still get excited to see him when I come home.  I like when his car is in the driveway.  We have our issues, but we get along most of the time.  Most of the time, it’s very good.  And I’m grateful for this blessing in my life.

Healing things:  gratitude, playing games



1 Comment »

  1. * hugs *

    Comment by DysthymiaBree — January 22, 2014 @ 5:57 am

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