Christmas Dilemma

As we approach Christmas, I always wonder how to deal with honoring my mom. Mom has become almost impossible to transfer in and out of the car. Her bones, muscles and skin are fragile and hurt when we try to get her out of her wheelchair.

The past four years mom has spent Christmas at my house. Even though her communication diminished it was great having her energy in the kitchen with me. We would put on Christmas music and I would wheel her in while I was cooking and ask her what I should do to spice things up? Almost always the answer was, "add more salt." Sometimes I would give her a bite of something and she would stick her tongue out after swallowing or make a face like I just fed her mud.

As mom's dementia has progressed she has become more anxious being out of her home. As dark approaches, she goes from quiet to irritable as the famous Sundowners manifests. She becomes scared and nervous.

Christmas has always been a huge event in our family and one to share with loved ones. But this year, I have to sit back and wonder if my desire to have mom at my home is more my comfort than hers. She is after all not comfortable traveling in a car, not comfortable in my house and not comfortable after dark. My emotions vacillate between being a good son and a selfish one.

There is no clear choice. Which often happens when making decisions about this terrible disease.

It makes Christmas a little less joyous this year.

The Courage to Visit

Many of you have requested that I update you on my mother and her progress since her surgery. Unfortunately, she has regressed back to the condition before the surgery. She is sleeping most of the day, talking very little and extremely confused.

It felt so good when she was happy and talking in the hospital. She was having conversations, laughing, recognizing her children and seeming her old self. I held onto that vision and as I heard she was slipping back to her deteriorated state I couldn't not bring myself to go and visit her. One week, two, three, then four weeks and finally after seven weeks I worked up the courage to go and see her. My daughter went with me as a motivator to make sure I completed the visit. We bought her favorites, carrot cake, chocolate mousse and pumpkin pie, to bribe her. Mom has started to lose weight again so it is not about healthy eating but about calories and weight gain at this point. So ironic a family and who has been obsessed with losing weight their whole lives is now worried about gaining weight. Be careful what you pray for.

When we entered the Aegis community I put on my happy face as staff greeted me. Mom looked good, her hair done and make-up on, this would be so important to her. She was sitting in the lobby, listening to entertainment, but she was listening with her eyes closed.

We wheeled her off to the activities room to have some quiet time. My daughter said, "Gram we brought you some carrot cake, yours and Dad's favorite." There is a running joke in my family. My mom bought me carrot cake for my high school graduation, only problem is I hate carrot cake. When I told her, "mom you know I hate carrot cake," she responded, "ButI love it." That was mom.

We tried to carry on a conversation but mom just had a blank stare, processing us as if to find the file that matched our faces to the memory. We asked her questions, hoping, praying for some type of response. The best we got was a shake of the head and an "uh ha." To our delight she gobbled up the carrot cake and my feeding her was not fast enough, she pulled off chunks of the cream cheese frosting and popped them in her mouth.

When she would come to a piece of carrot or a nut that she didn't like she would spit it out on the floor, like a farmer with a wad of chewing tobacco. This is so not my mom, an English woman with a proud background, manners were always so important. But in a way, there is innocence with this disease. No pretense, no political correctness, you are who you are, not who you are supposed to be.

We talked and tried to make mom laugh. The simple things you yearn for when you don't have them anymore. My daughter got engaged two weeks ago and she said to me, "Dad, one thing that I am most sad about is that I couldn't call and share the moment with Gram." The pain of those words shot through me as I thought my tears were going to flow. As I fought back my emotions, I realized how many things this disease steals from people, the essence of life and joy.

Mom polished off her carrot cake and some of the other desserts. We wheeled her in for dinner. As we were leaving, I bent down and kissed her and told her, "I love you." "I Love You," she said, clear as day.

Some things this disease can't steal.

Captured Memories

When my mom moved out of her home and into Aegis we were offered some of her things. It is funny what has sentimental value to you. The only thing I cared for was a tall mirror that has two little pictures inset in the top with some sort of Chinese ceremony. It wasn't the material aspect of the mirror so much as the reflection of what it represented. It was a storybook of my youth.

I remember standing in front of the mirror as I marched off to 5th grade, taking a second and third glance, admiring my new terrycloth hoody. I remember putting on my football uniform and making mean faces in the mirror to practice invoking my terror strategy. I remember standing in front of it as my mom snapped homecoming photos of my date and me in our splendid attire.

It was as if that mirror captured moments of time in my life. My life with my mom. When I look at it I see her, I see what used to be. That mirror has so many different reflections.

R E S P E C T

I think it was Aretha Franklin who sang the song R-E-S-P-E-C-T, but until you go to Japan you have no idea the true meaning of the word.

We were fortunate to dine in a great restaurant with a Michelin Chef. He told us a story about a Japanese businessman who came into his well respected restaurant and said he had a bad meal. The businessman wrote a letter to the hotel GM telling how bad the meal was and how it offended his guests. He suggested the remedy was for the Chef and his staff to come to his business and apologize in front of his employees.

The Chef met with the businessman in his office. He said when the door closed the meeting was very cordial and polite and the businessman offered no criticism. The main issue was the fact that his staff saw the Chef come to apologize.

I don't think I will be waiting for any restaurateurs to make an appearance in my office after I have a bad meal. Needless to say, I found the service in Japan to be extraordinary.

Trip to Japan

I had never really wanted to go to Japan. My mother fought for the British in WWII and didn't exactly portray great things about the tiny nation. But when the chance to take a father - son trip with Adam came up it seemed like a trip not to miss.

I have traveled the world and been to over 75 countries but Japan is a very unique place. The first thing that stood out was the cleanliness of the country. It wasn't just that the city of Tokyo made it clean for tourists, it was ingrained in the culture. There was a tremendous sense of pride for how people took care of their city. Every car I saw was spotless, even though a large portion of the population smokes I could not find a cigarette butt anywhere.

The people were some of the friendliest I have ever met. A great country with great culture. I wish I could tell Mom what a great time I had.

Thank you!

First of all, thank you to the many that were thoughtful enough to write me about my mother’s situation. Many of you have requested an update on how she has been doing after her surgery. Some of you have also requested information about her condition and if she is as alert as she was.
So mom was alert for about a week but each day she seems to convert back to old herself prior to surgery. For about three days she was more talkative then she had been in a year. I have spoken to many people, who are in the field of studying Alzheimer’s, about her change in condition. It seems that it may have something to do with the pain receptors.

When pain is inflicted (in mom's case her IV) the nerves become more alive. The adrenaline possibly helps fuel messages to break over plaque infested entanglements. So she has help reaching her memory.

This is fascinating to me. Hopefully, one day, this kind of information will help cure this awful disease.

Thanks so much for your support and kind words.

A Soulful Adventure

Ok, I know when you turn 50, you are supposed to do radical things like jump out of an airplane, follow Metallica around as a Roadie or run a Marathon. Well I have none of those on my bucket list. But I told two of my woo woo friends that I wanted to take them on a Soulful adventure. My friend Lem was turned lose to search the internet and find the most meaningful way in which to accomplish this epic trip. He came back with a clear front runner, Sedona, Arizona and a company called Sedona Soul Adventures. After reading the reviews on their website, it seemed like this was the chosen one.

So Lem and my other friend Victor signed up for the program. Within a few days we were filling out registration forms asking about our wants, desires, history and beliefs. It was an incredible in-depth survey. Then Mary, our “Guide” called us to go over the surveys. She had a kind and safe voice over the phone, I instantly felt drawn to this person and started getting excited about our adventure.

So we made a beeline for Sedona on September 24, we checked into the Enchantment Resort which is hidden in the Redrock Canyons. The next morning we were taken by our guides to a Vortex. They did a ceremony that called upon our guides to be with us during this journey. My traditional Catholic upbringing started telling me maybe I had gone into the deepend of the pool, but what the heck, I told her I was in and up for the journey.

That night we hiked up Crystal Cathedral, a beautiful vortex that sits high above the city. John our guide looked the part of a Native American with long, dark hair and dark skin, in reality he turned out to be an Italian from New England who had gotten his degree in metaphysics. He had come to Sedona on a visit many years ago and decided to make it his home and teach. He was a brilliant young man, who looked 25 but from his stories I pegged him at about 41. We sat under the brilliant stars as he spoke of Indian teachings, the 2012 theory, native American traditions, history of the area. He brought his digerydoo and his Native American flute and entertained us. It was an amazing night, lying there on this flat rock listening to his music and seeing not one, not two but three shooting stars.

Over the course of the next three days, I experienced many different practitioners. The intense breathing woman, the energy healer, the native astrologer, the channeler and a soul counselor. I have to say, I experienced some things that I never thought I would. But at the risk of people thinking I am crazy I will save those for my journal.

The message here is that we need to all try different things and be open to the possibility of what they may bring you. During this week, everyone told me I must surrender, not easy for a type A CEO, who loves control. But what the heck I did and discovered much about my self.

I am thankful for this experience and thankful and Blessed that Lem and Vic experienced it with me.

Blessings;

Dwayne