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.

 

 

 

 

 

 

 

“Caregiver” Redefined

I’ve thought of myself as a caregiver for years now.  I give lots of care to three beautiful, smart little girls. However, I realize now that parenting and caregiving are separate realms.  All the love and devotion I invest in my children I get back threefold. That’s just standard for a normal parent.  Your kids will always (at least at their young ages) run to see you with open arms yelling “mommy” with big, wide smiles and eyes glimmering like they’re lit from the inside…and all feels right with the world.

Caregiving for a loved one (especially one whom has dementia/regressing mental function) isn’t like that.

My grandfather has always been my patriarch and idol.  I don’t know how many evenings I sat listening and soaking up his advice and wisdom in my youth.  His words hovering in the back of my mind over so many decisions in my life. He was always there during difficult times assuredly telling me to “suck it up”, make a plan, and move forward. He’s always been a rock I could lean on reminding me that “life is good” (a normal end to most conversations) and to focus on the blessings.

On bad days now he doesn’t recognize me, but knows he should know me. On the worst days he doesn’t remember my father, hence my existence is wiped away as well.  On bad days he wakes up throughout the night confused, on the worst days he “wakes up” but is still in his dream-state and is riddled with anxiety/fear with no knowledge of reality.  His bathing and toiletry are no picnic for me, but I know that I must go into it laughing and smiling or my alpha male’s morose and apologetic attitude due to his need for assistance can quickly turn to a depressed state. His frailty may worry me, but it makes him disconsolate.  He feels as if is body is his foe not allowing him to do even the little daily tasks so many of us take for granted.

My two year old believes they are best friends, as if they share some unseen connection, and is always at his side. At a doctors office recently my grandfather says “J, be quiet already”, she just looks at him and says “No Papa” and starts laughing uncontrollably and she crawls up on his lap. Then he starts laughing uncontrollably, then I am, and the nurse joins in too. These good moments are unforgettable.

On his best days he’s still giving orders, asking questions, and making demands like the Plant Manager he was most of his life. We have coffee every morning and dinner together every night and chat about family, news, weather, finances, and everything in between.  Our conversations aren’t as deep or as filled with wisdom like those we had when we were both younger, but his good days still outnumber his bad days and I relish the time we have together after so many years living hours apart.

Starting this journey I didn’t know the heartache I’d experience when someone you love doesn’t recognize you, the pain it would cause me to feel his self-consciousness at needing help, or the frustration and many obstacles of dementia.  I didn’t realize the full-context of a caregiver nor the simple lessons I’d learn.

I’m happier (although more exhausted) than I have ever been.

My grandfather is teaching my little family to take things in stride, how to more fully appreciate simple things, and how to just live in the present. My life had been so much about the plan, the budget, things to get done, my career, etc. (all still important), but it’s just as paramount to focus on the day and not lose the moment.  Balance.

Thank you Grandpa. Life is good.

gpa and j