Sundowning and Self Reflection

The thing about dementia is it is not just a “loss of memory” as most people think. It’s a loss of mannerisms, right and wrong, love, security, favorites, etc.  On a good day I can make my grandfather his favorite food and he is in heaven. On a bad day he will spit it out and say it’s horrible. On a good day he spoils his great granddaughters and they hug and tell jokes.  On a bad day he’ll scream, “Don’t touch that – get the f*$k away from me.” On a good day he tells me how thankful he is to have me and live with me.  On a bad day it’s a slew of jabs and he cannot remember who I am.

I cannot tell you how difficult it is to care for someone you love.  To constantly remind yourself and others that the bad days and moments “are the disease, not the person”. For me personally, the hard part is not letting the jabs take a permanent effect on my self esteem. A month or so ago he was particularly in a mood and nothing I was doing was right to him. As I got him into bed that night he said, “No wonder you don’t have a husband now. No one in their right mind would want to be stuck with you.”  Or yesterday I brought him his evening pills and he said, “When did you become such a fat ass? Your belly is as big as your tits now.” I can’t explain to you how those things hurt and how many times that has floated back up in my mind.  It’s like my self-doubts are being made concrete by being verbalized by someone I adore.  I KNOW that’s not him in those moments, but the heart doesn’t always go along with the minds rationality.

In his defense, I have put on 35 lbs since I started taking care of him.  I just don’t have time to work out anymore (nor the emotional and mental energy).  I’m tethered to my grandfather now since he cannot be left alone and the emotional and mental energy that takes is absurd.  Not to mention, I’m a stress eater and life just isn’t very tranquil lately.  This may sound laughable, but I now believe there is a correlation to stress and retaining weight as well.  I feel like I’m in this constant fight or flight momentum and my metabolism has shut down completely to prepare for whatever “stores” are needed ahead.  I have done zero research on this – just a feeling.

Also, for those of you that care or deal with the elderly I wanted to let you know of a term I learned this month – “sundowning”.  As the day progresses my grandfather gets more confused, anxious and even aggressive. I personally thought it was me just getting worn down as the day advanced, but when I talked to the nurse about it – it’s actually a thing!  This simple little term explained a lot of stress in my life.  I’m not sure why it makes it less painful now that it has a name, but it does. I think this is very similar to how I felt with my ex.  Once I had discussed with a counselor they gave me a term to contemplate – narcissist. I’d heard it before, but had never really read in any depth on the subject.  She explained I couldn’t rationalize his actions – he was a narcissist. She recommended a book, “Healing from a Narcissistic Relationship“. Having that label and knowing others could relate to that label just made it seem less complicated to understand (the book helped as well).  Maybe I should write a book on Healing from Dementia…well, as soon as I figure that one out anyway! 🙂

We Remember

On a positive, my littles are thriving despite the struggles.  They brought home straight A’s – for both my older girls! Children are so resilient. I took them from their hometown, friends, clubs, school and re-inserted them in Florida. They didn’t just survive it…they’re thriving and doing BETTER than we  were in Texas.  Maybe through out all of this I’m getting some lesson through to them. Just maybe.

If you have any dementia advice let me know! I’m all ears on this subject.

 

 

 

 

 

 

 

Update – Added to Our Household

Becoming a caregiver.

I’ve been out of touch for a while. My apologies. I’ve added a chapter to my story and I believe it’s an important one to share more frequently so you’ll be hearing more from our tribe.

My father was the full-time caregiver for my grandfather (his father).  After he passed and much deliberation, my grandfather decided he wanted me to take care of his affairs.  This was a huge task because my hands are quite full with my own nuclear family.  However, in the end it was what he was most comfortable with and made the most sense because his affairs were so closely entwined with my fathers and I was trying to close out his estate/businesses (still haven’t completed this almost two years later).  It’s amazing the work left behind from death.

Fast forward a year (and hopefully that explains my absence as well) and my grandfather was showing severe signs of dementia.  This summer, after many family and close family friends had multiple discussions, it was decided my grandfather would move to Texas and reside with me. My once 6’2″ alpha male grandfather was a mere 150 lbs and completely fragile when he arrived.

The last four months my three girls and I have been adjusting to life as caregivers.  When I initially made up my mind to do this I thought it would be like adding a child to the household. We’ve done that before…nothing out of the ordinary for us. Oh, how wrong I was!  However, it reminded me of something I say to expectant mothers, “you’ll never have a job so hard, but so rewarding”.  Becoming a Caregiver for a loved one is the same.

grandpa

The ONE thing I’m sure of in this adventure is that it was the right decision (despite the multitude of days I’ve collapsed with exhaustion on the bed thinking this is impossible).

Happy Thanksgiving to all! May you focus on all the ways you’re blessed and forget all the reasons you should be stressed.