Bucket List

While my Dad has not named a "bucket list" formally-he has done so by casual conversation. A year ago, in early September, when his urinary tract infection had gotten to a point of needing a hospital course, and together we discussed what the treatment would involve and what not treating it would mean, he mentioned having a chance to again "see me on a daily basis." I took this to mean, living in the same house. I responded that I hadn't lived at home for a long time, but he persisted that it would be a good thing.
 
Lo and beyond- at the week of July 4th, the power went out at their assisted living site and I took my parents to my home. I reminded him, that he got his wish.

Another "bucket" item was to be seeing the extended family again. He forgets that many of his siblings are now also older and unable to do the driving they did in their youth. He has lamented this greatly as he lived in a large family (9 siblings) and I think, misses that environment. Again-lo and behold, my Uncle died in August. I went to Dad's room and told him of his brother's passing and that the wake was that same day- he very willingly went along with me, and went to the wake. He was welcomed by my many cousins, aunt, uncles and other related people. He came away feeling warmed by the experience and while we gathered for a mourning experience, he was contented to see the many people and be acknowledged as Uncle Ralph.  It was a great moment and I was happy to provide it for him.

The bucket list- sometimes, its simple things- like being with family-to be immersed in the love that can only be in a family. I was grateful, he could manage to get in my car and we could safely get there and be in the midst of other family.

That thing about Dementia

Well, had my first time-ever- today. My Dad did not recognize me. He kept asking where he was and even while I would tell him, it wasn't sticking- at all. Last week he was no where near this confused.
I could only think that the infection is now doing its damage. Dad asked if other family visit him- he asked about "Mom and Dad" aka- HIS parents, visiting him. When I told him they had passed away better than 20 years ago, he wondered why no one told him.
No one can quite prepare you for that moment when your parent doesn't recognize you. I could feel the tears well up in my eyes, like a full feeling of disbelief. No matter what I said, he couldn't seem to find a file for me. He thought I was his sister.
Saying good bye like this rips a little of your heart each time. Joe Klein of Time magazine wrote an article in the June 11th issue about managing his own parents old age issues. It's a good article to read if you can get a copy. He also had the double-dementia challenge.
So, more to come.

When the Shoe Drops

It's always, for most people, the dreaded "THAT phone call" that comes. The one telling of an accident or that someone died. Your heart can't help but race and everything else in your life drops away to what people are saying over the telephone.
I wrote in May that my Dad's urinary infection would likely return and that I struggled with the POA role to make that decision to stop hospitalizaing and treating an infection that won't go away. On July 20th, that phone call came to me around 3pm, while I was at work. I was asked what I wanted to do. Yikes, I went through that excruciating pain last May coming to that conclusion. Now, we're revisiting that decision? Really? 
So, in the past 4 days I have talked and talked and talked to friends, pastors, chaplains. While I take a deep breath I've decided that by making the decision in May when I was informed but not under stress, that that decision will stay.
Dad is comfortable, alert and around people who care for him. I visited him Sunday and he seemed OK. He's getting an oral antibiotic and we'll see what transpires. Now, doing a fair amount of reflection- while he was at my  home earlier this month, I noticed his stamina was poor, he would get winded with just transferring from the bed to the wheelchair.
I will miss him greatly. He is a wonderful person and truly my lifelong mentor and guide to life. While he may not realize it, he's teaching me how to deal with the end of life.
Many of my friends, too are learning how far they'd want their own family members to take their illness. One nurse I know has a list of what she does NOT want to have happen, rather than the currently vague language in POA papers deciding benefit to the individual.  Maybe that's the lesson. Maybe God is having me dig deep and those who are in the journey with me, to dig deep.
That same night I received that call, my devotional book had the following reflection:

"I will restore your Soul"

I will never leave you alone, but I will keep you safely in the shelter

of My sheepfold. I am the Good Shepherd, and I will bring you into

green pastures and cause you to lie down by still waters. I will lead you in the

path of righteousness. Fear no evil; I am with You. My rod and staff

 are Your comfort. I have prepared a table for you in the presene

of your enemies. Goodness and mercy will follow you all your days, and you

will dwell with Me forever.

Psalm 23, NIV

From: Daily Declarations for Spiritual Warfare John Eckhardt 2011, Charisma House

(Of note: The timing of this also coincided with the senseless Colorado Movie Theatre Movies,  this Psalm could also provide comfort to the people of Aurora, Co and our country.)





Surprise 4th Visitors

Last Sunday, July1st, the middle-western suburbs of Chicago had a severe thunderstorm come through. The storm knocked out a path of trees and power lines, leaving the assisted living building where my parents live with out electricity. By July 2nd, when I went to see my Mom for her birthday, the facility decided to evacuate the residents.
Mom & Dad could have gone to a nearby nursing home OR go home with me-and that's what I decided to do.
We launched into it with little planning and while things were a little rocky initially, we all made it through.
The mornings and night times were the roughest, with bathing and dressing duties, but I think they enjoyed the quiet and little stimulation of a house. 
Mom & Dad stayed with me 2 nightes and 2 mornings and went back to the assisted living facility Wednesday, the 4th.
While it was a good deal of work- and cooking- cleaning up and managing, I found it rewarding.  I was able to accomplish care taking of two people unable to do most activities for themselves.  I wouldn't have thought it possible and in the end, I was certain that both the assisted living facility and I made the right decision.
You never quite know the challenges God sets before you- I'm learning that my answer should always be "Yes, Lord!"

Mother's Day 2012

It's been a few Sunday's since Mother's Day but I thought the post and photo would still be fitting. We had a good day together, Belmont Village Assisted Living celebrating the Mom's in great style. Mom was having a really good day and was participating in conversation, although I think she was surprised by all the attention.

Here's a photo to celebrate that day!

Dilemmas that Shake your Soul

There are days you wonder what to do. This is especially poignant when you face the issue of deciding a loved one's future.
My Dad has been having what I now am calling chronic-terminal urinary tract infections. They started when his enlarged prostate no longer let him urinate normally and urinary catheters had to be inserted to allow him to pass urine. He's now had 5 hospital stays, numerous trips to the Emergency Department to replace the catheters he's pulled out and many visits from visiting nurses to manage the catheter care at the assisted living.
We are at a decision point about continuing care.  While I've had many empathic responses about "How hard this must be for you..." the problem and the decision is with me as the Health Care Power of Attorney. 
My Dad is alert- though often confused-the confusion ranging from being very confused to mildly confused. We still share some "giggles" between us- we've enjoyed watching two baseball games during this latest hospital stay- and have a special bond that allows us to sit quietly together without saying any words.  But, trying to come up with the best scenario for him is tough. He misses my Mother who is at the Assisted Living facility whenever they are apart even a few days. So, is his generic "quality of life" defined by that? Being near Mom or keeping on with treatments?
So, sometimes, I wonder where God is in all this. And how much peace "that surpasses undertanding" will be imparted to me?  It has been a challenging journey all along, and I'm still on the path...

For Dad-Things go Better with Coca-Cola

A few weeks back, the assisted living site had an Easter Brunch. While preparing my parents' meals and getting drinks, I picked up a Coca-Cola can. Dad began giving it a good looking over-so I asked if he'd like some. I filled up about half his glass with the bubbly stuff and he drank it with enthusiasm. He seemed really satisfied and asked for more whenever his glass became empty. Seems in the AL, the wait staff is more prone to serving coffee than carbonated drinks.
The very next day, I had a call that Dad had to go to the emergency room at a nearby hospital. He had been somewhat sedated to tolerate the ride, but when he woke, I asked if he'd want something to drink.
Without hesitation, he responded, "Do you have any of those little Cokes?"  This from a man whose dementia often befuddles him, easily remembered that taste- guess what's now on the shopping list!

DSM III and Dementia

In  graduate school, one of my classes was in Adult Psychopathology. Part of the class was on major psychiatric disorders, but it also included information on dementia. While I had read the descriptions, never would I have imagined having both my parents go down the path of dementia. My Dad had a stroke in 1999 and began having the mini-strokes (TIA's) almost immediately- each seeming to steal more and more away from his otherwise great functioning level. My Mom became his navigator and he relied on her for years.
I knew we were heading for trouble when Mom would repeat stories to me when we talked-I think she was around 60 at the time. The year she couldn't remember how to set the table at Thanksgiving, I knew the dementia state had landed and it could only get worse.
While they were unwilling to consider moving, it needed to happen. We waited for a crisis...

It's a New World to Enter

In early 2009 my life changed. While I had seen my parents starting to slip, mentally, I would never have imagined the journey I would be on. As an only child of two aging parents, it's been both an experience of personal growth, frustration and sentiment.

I've found little available to help families of older adults to navigate the process of helping parents get the care they need, despite their protests. I am hopeful this "blog" becomes a source for families around the US to come together, swap and share stories of triumph and despair, but above all, to develop a support network, albeit a virtual one.

My own stories about my parents will also be present. I hope you feel free to share!