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!

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.

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!