"Going North to Go South" - When Life's Directions Change

On February 25, my brother Bruce and I drove to San Antonio, Texas to visit our Mother. Mom, like Dad and her sister, has been diagnosed with Alzheimer's. Mom is currently receiving hospice care and since Bruce and I live in the San Francisco Bay Area (about 1850 miles from San Antonio) we felt the need to visit her perhaps for the last time.

"Going North to Go South" is how Bruce described the beginning of our trip when family and friends asked about our trip (he's in Redwood City and I'm in Santa Rosa). However, those words have a far deeper meaning.

My sister, brother, and I had no idea that our parents would end up in nursing homes because dementia would rob them of their memories and abilities to care for themselves. We expected to be able to have normal conversations with them about our lives and the memories we shared. Instead, we've had to adapt to life's direction and changed course. So for the moment we are going North, a different direction than we anticipated in our younger days. And we are making the most of this journey with the support of our families and friends.

Here are some of our moments with Mom:

In our hearts we know Mom knew we are her children.

Our last day in San Antonio saying good-bye.

Mom knew we were leaving...

And across town in another nursinghome is our Aunt Vicky. So much of our childhood was spent with our aunt and cousins. Here we are our Aunt:

Aunt Vicky and her son Richard

Me and my Aunt

We were able to visit other family members on our trip:

Our Aunt Theresa and Uncle Paul (Dad's brother)

Our Uncle Leo and Aunt Noemi (Tia Mimi )Dad's sister

Our cousins Martha and Rene (aka Gabriel) invited us to dinner with other family members.

Our Uncle Joe (Dad's Brother) suffered a mild stroke prior to our visit.

And finally, Bruce, thinking about the return trip and having , this time, to go North to go South.

Catching Dad on a Good Day: An Increasingly Rare Moment

Yesterday, February 11th, I spent some one-on-one time with Dad. His decline has become more apparent in the last month or so and visits were short because all he wanted to do was sleep. When I arrived at the nursing home yesterday afternoon I found him in bed asleep but dressed. I nudged him and he woke up immediately and started talking almost as if he'd been in a conversation with me prior to nodding off.

Most of what he said made no sense to me, much of what he verbalized seemed to be about imaginary activities (or fragments of past experiences). I asked him if he would like to get out of his room and take a ride in his wheelchair (Dad is too weak to walk on his own) and he agreed. After getting him in the wheelchair I took him to some of the spots in the nursing home we'd been to in the past. As we sat by the courtyard entrance, he continued his conversation with me. Some of what he said that I could make out were, "Bruce, is doing good now, he's learning." And "Jay makes me laugh, he's just a boy you know." Then after a nurse made an announcement on the nursing home's PA system, Dad said with a loud voice looking upwards towards the ceiling, "Joyce, is that you? Where are you?" then he looked down and chuckled. I asked him if he remembered Shelley and he said, "Oh yes, she's been around. I saw someone who looked just like her, I think it was her sister."

A few minutes later, Pilar, one of the CNAs caring for Dad, came by and spoke with Dad in Spanish. She said, "I see your have a visitor." Dad looked at her puzzled and asked her if she knew who I was. She said yes. She said, "That's your son." Dad laughed at her like she was crazy and said, "No, that's my papa." Pilar smiled at him and me and continued on what she was doing before stopping to talk to Dad.

A little over an hour later he was tired and cold, so I wheeled him back to his room where he could get under the covers.

The following video is just under 3 minutes but it will give you an idea of what my visit was like. Most of what he says is hard to follow but you might be able to make out some of this thoughts. Enjoy Dad on a good day:

Dad Says, "Thank You God."

When I visited Dad yesterday, he was asleep when I entered his room. So I stood there and watched him sleep and slowly his eyes opened up and he softly said, "Thank you God."

I asked him what he was thanking God for and he said, "That you came to see me." I smiled and we started talking, well, I asked leading questions to get him to talk. Then he said, "Help me God." I asked him what he needed God to help him with and he said, "Everything."

For the last few weeks Dad is eating less and less. He is just not interested in eating or he'll say nothing tastes right and won't eat. I scheduled yesterday's visit to be there when lunch is served so I could encourage or help him eat. He only ate three small bites the grilled fish, two bites of the noodles, and two bites of the sweetened chopped apple. He did, however, drink 90% of the milk. The nurse said they were waiting for a doctor's order to give him an appetite stimulant to see that that might help him eat more.

Dad is also undergoing some blood and urinalysis tests to see what else might be going on. I should have the results in a couple of days.

During my visit I made a short video of Dad greeting his family. You might have to turn up the volume as he speaks softly and there is a lot of background noise.

 Thanks for reading and watching!

Time for Reflecting: Another Year Gone By

As another year comes to an end, many of us spend some time reflecting about how time has changed our lives, filled with moments of happiness and sadness. Fifty-nine years ago today, was a happy occasion for my Mom and Dad when they were married.

December 28, 1952

Their lives have changed dramatically since that day in 1952. They each lived full lives together and separately with their children and their families being the bond that brought them together for special times. Today, however, Alzheimer's has placed Mom & Dad in a time warp that takes them to moments of their lives to relive again and again. Each moment they relive becomes fragmented with other moments. Some days I can tell where they are at and at other times I cannot. It is a journey all their own and we are just observers.

The following photos are of Mom & Dad today, December 2011:

My mother Janet

My father David

Of the two years of blogging, this update has been the most difficult with tears blurring my writing. As I look at the photos of Mom and Dad of today, I reflect on their lives and the lessons learned.

What will you make of your 2012?

Enjoying a Feast with Dad at Pine Ridge Care Center

On Sunday, November 20, 2011 the Pine Ridge Care Center, Dad's home, invited the families of all their residents for a special feast.

The staff and their families made the entire feast enjoyable for all by serving everyone and making sure all were having a great time.

Here is a short video where a violinist is playing a familiar tune (especially for all my Texas family and friends) and shows Dad making his entrance. When the video begins to wave a bit it is because Dad is hugging me.

Here are some photos of the event:

Shelley, me & Dad.

Shelley, Dad's CNA, & Dad.

Waiting for the word to begin serving!

Dad digs into his meal.

See the sparkling cider on the left? Dad had 6 glasses!

One of the nurses that takes care of Dad.

Staff getting ready to serve.

Getting ready.

Ed, Dad's roommate.

The Executive Director standing behind two residents.

Kelli, the Social Services Director, and her son getting ready to serve everyone.

A Visit for a Smile or a Laugh: Well Worth the Effort

It is not easy to visit a nursing home when your parents are residents for the long term. It's heartbreaking to watch them forget all that was once their treasure chest of precious memories of a life long lived. It is also very depressing to think about their future as we know how it ends. But, that is the reality of life...

...Yet with all the sadness there are moments of happiness. Since they live in the moment, whatever we do with them at the time is all that matters. To tell them a story or a joke, to see them smile or hear them laugh out loud, well that's what it is all about. They may be confused, lost, and sad but when we are with them, at that moment in time, they know you are family and you care and that makes every visit well worth the effort.

Our visit with Dad on November 14, 2011

A smile for the family 

Shelley & Dad

Me & Dad

Shelley talking to the birds

Insight into Dad's the Inner World

Lately Dad just wants to sleep. No matter what time of day I visit, he is always mostly sleeping when I arrive. Most of the time I will try and wake him up, but there have been a few occasions where he just resists and so I leave him alone and let him sleep.

Interestingly, when I am able to wake him up and get a conversation going, he gives me some clues into the inner world of his mind. Sometimes I'll ask what he's done that day and he'll respond by saying, "I'm not sure but I did some exercising, I think I went for a run." Almost every question I ask him will begin with, "I'm not sure, but..." 

At times, when we are sitting in one of the visiting areas, I'll notice how he is lost in thought and I'll ask, "What are you thinking?" Over the last few visits he has responded with numerous answers such as, "I'm wondering how many miles it is to San Antonio?" or "I wonder how long it took me to finish that slab (as he is pointing to the patio)?"

Then there are times when we walk around the facility and workers and residents alike will greet him by name. I'll comment to Dad that everyone seems to know him and he"ll just smile and say, "I have no idea who they are." One nurse called Dad "Mr. Fast-Pitch," obviously because Dad must have told stories about his days as a softball pitcher. But when I ask Dad how the nurse knew about him being a pitcher, he said, "They read it in the newspaper."

As Dad's dementia progresses, I can see how most of his living is taking place in his inner world where fragments of his past occupy his mind, while in the outer world he just sleeps.

Dad sleeping when I arrived today.

Dad giving me "the look" because I woke him up.