Sleeping by Day, Wandering by Night & Doing Fine

During my July visits with Dad, I have observed his continual memory decline but his overall physical health has improved. He is no longer in hospice care, he is eating more, and most importantly, he is drinking plenty of fluids.

It seems like every time I visited Dad in July he was in bed asleep, yet, according to the night time staff, Dad is awake at night and walks around.

During one of my visits when he was sleeping, I nudged him a little. He opened his eyes, smiled and said to me, “Hi dad.” Then he closed his eyes and went back to sleep. Instead of trying to wake him, I just sat at the edge of his bed and watched him sleep, probably the same way he used to watch us when we were young children. It is moments like these when it becomes so overwhelming in realizing just how much has changed as we’ve grown older. In many ways, it has not been fun but it has provided the opportunity to appreciate life more.

I took Dad for his follow up visit with his neurologist this past Friday (July 27^th). He answered a few of the memory test questions correctly, such as correctly stating the current month and season but he couldn’t answer any of the other questions posed. His doctor confirmed that he is in the late Alzheimer’s stage. However, as long as he continues to eat well and drink fluids, which will minimize any complications that could negatively affect his health, he should be just fine.

If I were to have taken a photo of Dad during my July visits,
most would look like this one!

Two Sons with Their Dad

Our visit with Dad

Yesterday, July 7, Bruce and I met at "the home" for a visit with Dad. Bruce had arrived about a half-hour before I did so they had a bit of one-on-one time. When I arrived Dad was engaged in a conversation with Bruce but I couldn't figure out what the conversation was about. Bruce indicated that he couldn't follow what Dad was talking about either.

That's the way our visit went with Dad; nothing made sense to us but we could tell that in his mind he knew what he was talking about. He kept referring to one of his nephews that looked like Bruce but couldn't remember who it was other than he may have been a sergeant.

Dad had difficulty searching for words to express his thoughts. For example, Dad kept slapping his forehead and I asked him why was he doing that. He said he wanted to keep the "thing" from getting out or protruding. He was referring to a mole-type growth on his forehead. I asked him what it was and he called it a "pecan."

Throughout our visit Dad kept referring to Bruce as Jay and at times he thought we were his uncles. He spoke of his sister, Noemi, and said that she spoke well and that his other sister, Patsy, was starting to talk and form words. I figure at that moment he was in the late 40s.

Also, for the first time since he's been in the nursing home, he did not recognize the photo of his parents. He said he was trying to figure out who they were.

This visit was difficult because we could see how Dad is sinking deeper into the depths of dementia, He may have some good days in the future but more and more Dad's times, places, events, and people are becoming more muddled.

Dad has lost more weight, he is now at 123 lbs. He is eating less again but is doing well taking in liquids. And the staff informs me that he does get out of bed to move around late at night.

Here is a video where you will see Dad slapping his forehead and calling the "thing:" a pecan. You will also hear him joking and making mimicking sounds.

Bruce & Dad having a good laugh

Dad Explains His Sister's Nickname: "La Chata"

Dad's sister, Noemi, sent a birthday card last week and I read it to him. His sister signed off using her nickname, "La Chata." I asked Dad who gave her that nickname and what does it mean. His reply are recorded in the following short video:

Here is a photo of Dad holding the card from "La Chata:"

According to Dad's nurse, he is doing as well as can be expected. Late evenings are his best times when he tries to get up and walk around (with assistance). He is eating most of his breakfast, but lately seems to not want to eat lunch. He has also been very cooperative when it is time for a shower (this is a huge change as he is usually very resistant!).

That's for this update. Maybe La Chata can confirm how she got the nickname?

Getting Past May

My last post was at the end of April 2012 and so much has happened since then. As most of you know, my mom passed away on May 3 and the rest of the month was spent making memorial arrangements, visiting dad, and making the trip to San Antonio and back. Getting past May has been more difficult than I anticipated but nothing is ever the same after the loss of a parent.

Now it is June and I want to update you all about my latest visit with Dad on Father's Day, June 17th. I drove down to San Rafael on a beautiful afternoon, which had significantly cooled down from the day before when the temperature hit the century mark. Shelley wasn't feeling well so I made the trip alone.

As I walked into Dad's room he greeted me with an instant smile of recognition, which was then confirmed when he addressed me as "mijo!" And he started to cry. I noted that Dad is looking well although he needed a shave. I started my conversation by telling him about the family I'd seen in Texas and about the trip. He asked where I'd spoken with everyone and I said, "In San Antonio," and he looked a bit confused. I reiterated that I'd just gotten back from San Antonio. Then I called Joyce so she could talk to him for a while. They had a nice conversation and Dad didn't cry as much this time.

I told him his birthday was coming up soon and he said, "Oh really?" I asked if he remembered his birth date and he couldn't remember. So I reminded him, June 19th. I said, "Guess how old you are going to be." He said he didn't have any idea. I told him, 84. He said, "I'm getting old!"

Lately Dad seems to be doing quite well health wise but it is very evident his memory is fading with each passing month and year. He can still joke around and laugh but he can also get angry if he doesn't like someone (like his roommate).

Here are a couple of photos I took of Dad during my visit:

Yes, Dad is smiling in both photos!

The Alzheimer's Roller Coaster Ride

A parent with Alzheimer's is like being on a perpetual roller coaster ride - constant ups and downs. Ever since Dad has come to live with us and then going into the nursing home, his physical and mental health have gone up and down and not always in synchronization. Mom is on the same ride just in a different car and no one is having a fun.

Dad has gone from not eating hardly anything to eating more recently - a pattern repeated over the last three years. He has been bed ridden for most of the past few months with occasional outings in a wheelchair. Recently, on Tuesday, April 24th, Dad tried to get out of bed and go for a walk but fell and cut himself because he didn't realize how weak he had become. In his mind he's been up and about on a daily basis going for walks, playing ball, working, etc.

The last four visits Dad has recognized me when I arrive and will start to weep. Later during the visit he will think I'm his father. I always make it a point to talk about each of his brothers and sisters; sometimes he recognizes their names and at other times he does not. When I point to pictures of Bruce or Joyce he hesitates naming them; sometimes he gets it right but more and more he gets the names confused. Lately he says his daughter's name is Rachel (actually his sister and his daughter's name is Joyce).

Mom's ups and downs are different. She is struggling with a yet-to-be determined skin condition that has her constantly itching and thus spreading the condition. She sees another doctor tomorrow for a second opinion.

Joyce, Bruce and I appreciate all you family members taking this roller coaster ride with us. We know it is not easy since many of you are also dealing with a parent with Alzheimer's but we thank you for your visits and/or encouraging words.

Here are some pictures and videos of Mom & Dad:

Here is Shelley encouraging Dad to drink water. Even though
He isn't eating much, he is drinking sufficient fluids.

 Above is a video of Shelley making Dad laugh with a puppet.

This is a collage of family pictures in his room. At every visit
he will ask me who is the person in the middle. I'll ask him who
he thinks it is and he answers with a question, "Me?"

This is a short video of Joyce taking Mom to a doctor's appointment:

A Sunday Afternoon Visit With Dad

This past Sunday, March 18th, Bruce and Bonnie joined me for a visit with Dad. Dad was in a very good mood and talkative, he even joked a bit. Dad even spoke with Joyce on my cell and, as usual, they both started to cry.

For about 8 weeks now Dad has not eaten very much but he does well drinking fluids especially milk. When Dad entered the nursing home almost a year ago he weighed 146 lbs and since then has lost weight and is now to 123 lbs. We encourage him to eat and for the last couple of weeks has eaten more of his meals; he eats about 25% of some meals. He is still weak and needs a wheelchair for mobility.

Dad is in a bit of an up-swing in the up-and-down world of dementia. As such I was able to record a short video where he says hi to everyone but he is also very emotional. Here is Dad saying hello to his family in Texas:

Here is a picture of Bruce speaking with Joyce, while Bonnie looks to see what I'm doing:

Here is another picture of Dad with a big smile for everyone:

Till next time!

"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.