Aftermath

There are points along the Alzheimer's/Frontotemporal Demenita journey where a caregiver has to make some big decisions:

  * when is it time for THE doctor appointment?
  * when to take the checkbook away?
  * when to take the car keys away?
  * Do you enroll them in Adult Day Care?
  * taking on the daily chores and responsibilities of their life vs dropping some or delegating
  * is it time to get in home assistance?
  * is it time for a nursing home/dementia care facility and how do you choose one?
  * is it time to sell the house?

It's all scary, fraught with doubt, guilt, possible family disagreement. Then finally acceptance and a realization that you are doing the best you can. The doubt and guilt wash back up every once in a while as you watch the disease progress.  Each decision brings with it a cascade of details, arrangements, change, a sense of loss and guilt, sometimes a sense of adventure as you work to make the new things ok and pleasurable. Sometimes sadness just permeates it all.

Over the last seven months I've made the biggest decisions on that list: to put mom into a dementia care facility and to coordinate with her conservator to sell her home of 37 years.  I know it's the best thing to do, I know it's right yet I feel terrible emotionally.  It hurts in my bones.  It's exhausting physical and emotional work to sort her things, all the things that she loved, that hold memories she can no longer access and divide them into keep, sell, donate and pitch piles. We were on a tight deadline to empty, clean, repaint the house before putting it on the market while the selling was good. It all happened so quickly.

Mom's dining room hutch.

Dad's Bongos

Mom kept all of dad's things, except his clothes when he died, so packing the house was like saying goodbye to my dad all over again. I packed up his things too. The pain doubled with no time to cry while I sorted and packed. I went home to my husband each night for 2 weeks, sobbing, wanting to be a better daughter and wife, feeling spent. I took tons of pictures, some video. In part to remember how things were, in part for a project about this journey mom, sis and I are on together.

This disease attacks those who care for the sick too.

We are the ones who remember things we'd rather forget.

Certainly there is joy in spending time with a loved one who has

Alzheimer's Disease.

But making the big decisions, dealing with their consequences requires all the strength you have and reserves you never dreamed existed.