Why I Visit Dad

Yesterday evening, Shelley and I visited my Dad. He was sleeping when I entered his room so I nudged him awake. As usual, he didn't recognize me at first so I just talked to him as if we'd been talking all along. I told him I'd spoken to Joyce, his daughter, earlier in the day and told him about Joyce's visit with his sister's Noemi and Rebecca. I explained how they are doing well (they're not) and he was happy to hear they are well and he started to cry. I then called Joyce so she could hear Dad's voice and talk to him. They talked, he cried.

My visit with Dad yesterday is typical of what our visits are like. I've been asked why I visit my Dad when he doesn't usually recognize me or know what's going on with the loved ones in his life. My answer is simple, I visit my Dad because I know who he is and what he was. I respect his life and I want to keep his memory alive for others in the family who will not get to know him as I have.

Dad's Rich Life

I thought I would share with you all some of my Dad's life events. In today's blog I will take you back to the family home he helped build with his parents and siblings.

This is a photo of my grandfather, my dad, his sibling, and other  friends who helped build the family home in the early 1930s. They built it from scraps of other homes that had been torn down and my grandfather bought the materials and slowly built the family home. From my perspective it was an estate.

This is the completed family home. This photo was taken in the late 1950s.

Working on the family home was an on-going project. My grandfather was always adding something new or improving an existing feature of the house and grounds. This photo is of my dad working on the driveway curb in the 1940s.

Here is the family having fun together after a rare snowfall. From left to right is my Dad, his sister Noemi holding Patsy, the youngest of the siblings, sister Rebecca, a friend/relative I can't remember, and finally his brother's Paul and Joe.

Here are Dad's parents enjoying an evening on their front porch. I have fond memories of my grandmother telling stories of her childhood growing up in a ranch in Lockhart, Texas. She would also sing songs to us that spoke of life. Sitting with my grandparents is my Aunt Becky, she became my godmother when I was born.

Here I am with my cousins in the yard of the family "estate." Behind us are grapes growing on the  wood frame and a pecan tree. We are sitting on a concrete table and bench my grandfather built for outdoor eating. Sitting on the table is my brother Bruce, and me holding my cousin Daniel. Seated on the bench is my sister Joyce, cousin Elsa, and cousin Xavier.

There are many happy memories built around the family home in San Antonio, Texas. Today the home is over 70 years old and is occupied by my Uncle Joe. The Beatles lyrics, In My Life, hold true...

"There are places I remember

All my life, though some have changed

Some forever not for better

Some have gone and some remain

All these place have their moments

With lovers and friends I still can recall

Some are dead and some are living

In my life I've loved them all"

"Not a Cloud in the Sky!"

When Dad was living with me, prior to the nursing home, he would often sit outside on a bench by the Community Center and stare at the sky saying, "there's not a cloud in the sky." And, as is common with Alzheimer's patients, he would repeat the phrase many, many times.

This is the view from the bench Dad would sit at and say, "There's not a cloud in the sky."

Yesterday, Shelley and I visited Dad at his dinner time. We had our usual conversation, I passed on greetings from family, I told him everyone is doing fine, and we talked about the weather. "Today," I told him while speaking to his daughter on the phone, "is a beautiful day, there's not a cloud in the sky." He chuckled and repeated what I'd said to Joyce. His chuckle was as if he remembered something funny from his past and I hope he had a brief moment of memory when he would sit at the bench and stare at the sky.

Medical Update

Today we had our quarterly "care conference" meeting with the nursing home staff to review and discuss Dad's care from the previous quarter. I am happy to report that he is doing great physically, however his mental condition continues to decline. His current weight is 128 lbs., which is an increase of 5 lbs. from a year ago. He's had his hearing tested (doing good), nails clipped (they needed it), ears washed (got rid of the wax), and had his teeth cleaned.

This past January Dad had a follow-up visit with his neurologist and confirmed his steady mental decline. The doctor made some adjustments to his medications to help him keep a "normal" routine (awake by day, asleep by night). The adjustment is working.

Here is Dad waiting to see his neurologist last month.

That's my update for now; thanks for reading!

Time is Taking its Toll

As 2013 begins I reflect on the three and a half years that have past since Dad has come to California. In preparation for Dad’s coming to live with me and my wife, we had read as much as we could about Alzheimer’s and what to expect as Dad progresses through the stages. This first month of 2013 has shown me that time has taken its toll on Dad.

January 1, 2013: We visited Dad today and were very happy to see him dressed and out of bed. He was in a very chatty mood conversing in both English and Spanish and, regardless of the language, what he said made no sense. He used words and sentences but there was no comprehension by his listeners. However, the expressions he had as he spoke indicated that what he was saying meant something to him.

January 5, 2013: When we arrived at Dad’s nursing home today, I found him sitting in a wheelchair at the nurse’s station. As I approached him, he seemed much disoriented and did not recognize me. His CNA wheeled him back to his room to clean him up and so we could visit with him. Our entire visit consisted of listening to him babble and watching him slap his forehead. This behavior is becoming more common now as we slowly watch him being consumed by this terrible disease. This is the worst I have seen Dad in the last three and a half years.

Who knows how 2013 will turn out but I do know that time is taking its toll.

Here are some photos and a video taken in the past few weeks:

This is Dad on January 1, 2013

Dad was wearing this T-shirt at one visit

This video is of our visit on January 1, 2013

Catching Up

Time flies whether you're having fun or not. My last post was on September 19th and soon after my computer went kaput. Now I have a new computer and I'm ready to bring you all (ya'll for my Texas readers) up-to-date. Following are some of the highlights since my last post:

On several visits to Dad during October and November, I have found him to be out of bed, dressed, and socializing with other residents and staff. I've been told that Dad has been getting up more and trying to move around, however Dad does not realize how weak he is and has a tendency to loose balance and fall. So as not to discourage him from getting out of bed, he is relegated to a wheelchair...and he still tries to get up on his own but can't. That upsets him and he says he doesn't understand what's going on.

On Tuesday, October 30th, Shelley and Tabitha were with me visiting Dad and he seemed to be in a good mood so I took the opportunity to call Joyce, his daughter, and Noemi, his sister, both in San Antonio. Their conversations were short but they got to hear his voice and could carry on a conversation that was only clear in his mind. (See photo below)

Sunday, November 18th was the annual lunch where families are invited to attend and enjoy a meal as a family at the nursing home. This year joining Dad at the dinner table were Tabitha, Kevin, Shelley, and me. Dad thought we were at a restaurant, which he said he comes to often. Dad didn't finish his meal but he sure loved the Sparkling Cider and had several refills. I took some great pictures, but lost them when I tried to download them. We all had a very enjoyable meal together as a family.

A couple of days later Shelley, Tabitha and I met with the head nurse and social director for our regular quarterly "Care Meeting." For the most part Dad is doing quite well considering he had been under hospice about seven months prior. He does eat well enough and, very importantly, has good fluid intake.

Upon arriving at the nursing home for my most recent visit, the receptionist saw me smiled and said, "Oh, good you're here. Your Dad has been asking for you." As we approached Dad, sitting in his wheelchair, the receptionist told Dad, "Look who's here!" Dad did not seem to recognize me so the receptionist asked, "Who have you been asking for all day?" Dad did not respond so the receptionist said, "It's your son!" Dad looked at me then at her and said, "No it's not." The receptionist reiterated to Dad that I was truly his son (and repeated this a couple of times) to which Dad replied, while getting angry, "That's not my son!" "Well then who is he?" asked the receptionist. My Dad responded with, "It's one of my cousins."

Afterwards, Shelley and I discussed what had transpired and based on what he talked about, he was probably expecting his son to be a young boy. I seemed more like a cousin to him because I am the age his cousin would have been for the time period his mind was at. That's what makes each visit unique, it's not a time to catch up with the latest news, but rather it is a mystery to solve and the question is, "Where are you in your life's timeline?"

This photo was taken on October 30, the day he spoke to both  his daughter and sister.

Thanks for reading!

Dad Speaks to the Birds and More!

As I've mentioned in previous posts, when communicating with Dad, you go with his flow wherever the conversation takes you. Yesterday evening, Shelley and I visited Dad and he was very talkative...we just had a very difficult time figuring out what he was talking about. Most of our conversation was in English and some in Spanish.

The following videos are of Dad speaking with the birds and in one of them you can hear him speaking Spanish to them. Dad asked us if we knew the names of the birds and we replied that we didn't, but he told me the names of the birds were in my phone. Going with the flow, Shelley told Dad that the names of the birds were Cheech and Chong to which Dad agreed.

In the first video you will see Dad approaching the birds and speak to them, In the second video you can hear him speaking in Spanish to them.

Other September Visits with Dad
On September 6 Dad spoke with his sister Noemi in San Antonio for a few minutes and he started to cry; maybe it was because he heard a familiar voice from his past.

On September 13, I visited Dad alone and he was asleep for most of the time so I just sat and watched him sleep. After about 10 minutes he open his eyes as if he knew he was being watched. He didn't know who I was but we just talked. His dinner came while I was there and I helped cut his food so he could eat it a bit more easily.

On September 14, Bruce visited Dad to say good-bye as Bruce and family have moved to Southern California, about 500 miles south of the nursing home. Bruce said Dad slept for most of his visit.

Photos of Dad in September

Dad's beautiful smile!

Shelley assisting Dad with his lunch

Dad is telling me a story...

...as he looks out his window

Tuesday evening with Dad

The Communication Challenge

Communication with an Alzheimer’s patient is challenging at best and nonexistent at worst. Communication with an Alzheimer’s nursing home is also challenging but should never be nonexistent.

Dad’s nursing home is constantly communicating with me about Dad’s condition and situation in the nursing home. A few weeks ago the nursing home advised me that Dad would be temporarily moved to a room next door so that his room could be renovated. A couple of days later the nursing home advised me that Dad had fallen and cut his forehead (2 centimeters) in his old room. Alzheimer’s patients do not do well with change; their life patterns must remain as constant as possible so as not to distress the patient and to keep the patient as safe as possible. Dad’s cut has healed and is doing fine.

Another method the nursing home uses to communicate with me and family members is to hold quarterly “care” meetings. At these meetings we (family members) are updated by the unit nurse, social services director, activities director, and other staff members about Dad’s condition. We are able to ask questions, make recommendations, brainstorm ideas, etc. in our joint efforts to maintain Dad’s quality of life at the highest level possible.

Our last care meeting was held on August 22^nd. Following are some of the updates we received:

• Dad had an x-ray done due to the fall the previous week. There were no fractures, only mild abrasions and contusions. He is under observation to make sure there is no evidence of a concussion.
• Dad still thinks he can get up on his own and walk around the facility whenever he wants. He never developed a pattern of using a walker so the idea never presents itself to use one. He must be assisted by a CNA or other person or be reminded to use a wheelchair or walker for support. (This is an on-going communication challenge.)
• He is weighted once a month and has shown a gain from 123 lbs. to 126 lbs. He eats well for someone his age and he takes protein supplements with each meal. If he looses a drastic amount of weight they will weight him more often, otherwise he is stable for now.
• Dad has been moved to room 3B from room 1A while renovations are taking place. We may just keep him in 3B if he seems to get used to being there however if he continues to go back to room 1A then we will put him back there once renovations are completed.

After the care meeting, Shelley and I went to visit with Dad but all he wanted to do was sleep. He said he was tired and just wanted to go back to sleep. So we said goodbye, gave him kisses and let him sleep.

Within 48 hours of the care meeting I receive a call from the Social Services Director to advise me that Dad had been moved again! This time he had been moved to room 27 on the other side of the facility. The reason given for the move was his roommate was being hostile with Dad so was moved for safety concerns.

I went to see Dad the next day and I could clearly see that Dad was not doing well at all with the latest move. His behavior and speech was erratic and seemed very agitated (see the video below; he even took my camera from me, something he has never done previously). I spoke with his nurse and she agreed Dad should not have been moved for a third time.

The next day, Sunday, I called the nursing home for an explanation for the third move and I demanded that he be placed back in his previous room for his safety’s sake and if his roommate was causing problems to then move the roommate and not Dad. After nearly an hour of conversations with three different persons, I was told someone would get back to me. I received a call back and was promised Dad would be moved back to his room that afternoon.

Even though the staff was able to accommodate my demand, I now had some concerns about the nursing home’s ability to handle Alzheimer’s patients and requested a meeting with the nursing home’s administrator on Monday morning.

On Monday morning, Shelley, Bruce and I met with the nursing home administrator and the nurse I had spoken with on Sunday. We expressed our concerns and a half hour later we were reassured that Dad’s best interests are first priority. The administrator even gave us his cell number so we could contact him on a 24/7 basis if needed, which is reassuring. At the end of the meeting we agreed to strive to communicate more effectively with one another despite the challenges.

Tuesday Evening with Dad

When we arrived at Dad’s nursing home for our regular Tuesday evening visit, the nurse advised us that Dad would probably be sleeping. An hour before we arrived, Dad had been given medication to help him regulate his sleep for nighttime versus being up all night and sleeping during the day.

However, upon entering his room, we found Dad eating. His dinner tray was still at his table and it looked like he had barely touched his food, looking closer we noticed he was eating a cookie. He had cookie crumbs all over his shirt, which you might be able to see in the first photo. You can see from his smile that he really enjoys the cookie.

When he finished the cookie I suggested he might like the spaghetti with meat sauce and he agreed to try some. I gave him a few bites and seemed to enjoy it. Shelley took over feeding him and he eventually ate all of his dinner.

While Dad was eating, I called my sister so she could talk with Dad for a few minutes. Dad seemed to recognize Joyce but he was more interested in eating.

After finishing eating and about 40 minutes since we had arrived for our visit, Dad could not seem to keep his eyes open. The medication was working. We said our good-byes and left him to sleep.

Following is a short video of Dad eating his dinner and some photos.  

Eating his cookie and enjoying it too!

Getting help with eating his dinner.

Almost done.

Done and going to sleep!